POZ Community Forums
Main Forums => Living With HIV => Topic started by: Buckmark on November 13, 2013, 01:23:23 pm
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Folks,
If perhaps anyone has noticed that I haven't posted much lately, it's because I was recently diagnosed with non-Hodgkins lymphoma (Burkitts). It started back in September when a lump appeared under my chin, virtually overnight. Through a series of scans and biopsies, I found that it was lymphoma. I then was referred to an oncologist (who I like very much) and have been through a series of diagnostic procedures, plus a surgery to implant a port in my chest for chemo, which I started last week.
The good news is that this is a "high grade" lymphoma which is very susceptible to chemotherapy. I'm at Stage 3, as the cancer is also in another lymph node in my abdomen. It's not present in my spinal fluid or bone marrow (huzzah). The bad news is that my chemo is delivered over the course of a week through a portable pump that I take home with me, and I go back for a refill every day that week. I'll repeat this cycle every 3 weeks, including "prophylactic" chemo for my spine / brain via a lumbar puncture. Having been through two lumbar punctures already, I can say they are not nearly as bad as they sound (but still unnerving).
I'm grateful for my family and friends who have rallied around me. My sister spent the past 2 weeks here in Austin with me while I went through my first round of chemo. My other sister is coming to visit for my next round I've got a long road ahead, but at least I now have some idea of what to expect.
I implore everyone with HIV to pay special attention to any lumps or bumps they noticed on their body. Lymphomas are commonly associated with HIV+ folks, especially long-term survivors, and you need to act quickly and decisively if you suspect something is wrong. Even if your HIV is controlled and your viral load and CD4 counts are perfect as mine are, you have to be vigilant
Oddly, this all started in September about the same time as another of our forums members here (hope_for_a_cure) who also posted about having Hodgkins lymphoma. We're going to kick butt together, and could use all the positive thoughts, energy and prayers you can send our way.
Hugs,
Henry
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How big was that lump.? And how big are these lumps and bumps we are supose to be looking for? I have 2 tinny bumps like the size of the tip of a ball point pen on my upper leg is that something to worry about?
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2tcells, if something like this concerns you merely point them out to your doctor on your next visit. The good thing about having HIV is that we all are seeing doctors regularly. He will be better able to assess your concerns.
I would caution other newly diagnosed members not to become paranoid from reading Henry's thread, or the fact that two long-term survivors have been diagnosed in the past month with lymphoma. It is all too easy to become overly anxious.
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I agree with Miss P . Henry , Im glad you decided to post . You are loved by all who know you and being able to support you and let you know we care is a true blessing . Jeff .
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Sorry you have to deal with this, Buck. Sounds like a bit of a hassle. Hope the Chemo doesn't drain you too much. Thinking of you and your smile and wonderful disposition.
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So sorry Buckmark
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My heart sunk a little after reading - I'm truly so sorry. Perhaps you and James can reach out to each other for mutual support. He too recently had the port installed and started his chemo.
I'm definitely sending you both all the positive energy I can garner. Feel free to reach out if you ever need an ear.
hugs and luv
Greg
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Hey man! Glad to see your post on here today. My oncologist emphasized that especially during the early treatments, we should drink LOTs of water. Those tumors are already being dissolved and as you may guess, the small particles are going to pass out of our body when we void. LOTS of purified water will make it easier on our kidneys.... we need them for more fun stuff as you know.
I hope you are getting decent rest too. Yes, we will kick the crap out of this and lets plan to have a victory dinner when we get together next summer at AMG!
Best!
James
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Hi Henry,
Ugh. :(
I've been staring at this screen not knowing what to say.
Just know that I will be thinking of you during the coming months and I'm so sorry that you have to go through this muck.
I hope you will keep in touch here so we can route you on along the way.
(((((((Hugs!)))))))
Mark
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Henry,
I know you will kick some ass. I am glad to hear the prognosis is good. I have known a few with this. One was a childhood friend. Being HIV neg, the swollen nodes sent off immediate alarm bells. He said they had checked for everything, including HIV, so that's how I know he was neg. So, I do wonder how many poz folks, and their docs, would dismiss this as just HIV-related. Good to be vigilant, without being obsessive.
Take care, rest, and we will wait for the all clear. My friend just posted this week that he was getting his chemo port removed. This surprised me and was educational. He was given the "all clear" months ago. I guess they wait and monitor for several months, in case he should need it again.
Edited for spelling
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Oh Geez no :( I hate that this is happening to one of the nicest people I've ever met.
I'm so sorry you are having to deal with this Henry. But I know you will kick some Lymphoma ass and get through it. We are all here for you buddy, and remember I am only an hour or so away and more than happy to help day or night if you need it. If you are up for a quick visit this weekend maybe I will bring you a World Famous Wump Casserole ;)
I'm praying for you (and Hopey too!)
Big super hugs!
-Will
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Henry,
I am very sorry that you have to go through all of this, and I know that you will give it your best.
Your affirmation "my very own lymphoma" is what caught my eyes, and as it might sound weird to others, its telling me that you are in charge sort of speak and determined to do whatever you have to.
I am glad that your family is around helping you. Please know that you are not alone.
With fondest thoughts,
Alain
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Ah Henry I am so sorry you have to go throe the treatment , but very glad that you have posted , If the Gods will accept a prayer from this sinner then theres one more gone up for you.
Lots off Love and every good wish there is Henry
Michael
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Henry,
I too am so sorry for this turn of events for you. I hope all of our prayers, warm thoughts, and well wishes will help you through the healing process. I am typing this in the airport lounge in Newark waiting to board an overnight flight for an eight day pilgrimage to Jerusalem and Israel. Now that I know about your condition, you will be on one of those slips of paper I will insert into the Western Wall in Old Jerusalem (the Temple Mount)-- of the most sacred and holy places in the world. I hope things will be much improved by the time we gather in San Diego.
Gary
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Damn. :( Sorry you have to go through this. I hope the treatment goes well and is not too unpleasant.
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I love you Henry. Just so you know.
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Henry,
I am so sorry to read about your cancer challenge.
Sending super strength good vibes to you and hoping you kick the pest
over the fence and out of sight.
Take care.
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Hey Henry,..
Ed and I are sending you positive energy and keeping you in our daily thoughts.
Ray
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Henry,
So sorry to hear this news. Of course, you will kick this lymphoma right out. Your calm and steady nature will certainly help. Glad you have solid support - do not be afraid to ask for help when you need it.
Will send all the positive thoughts that I can down your way (as well as James way too).
Hugs,
Mike
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oh my. i'm very troubled to hear this news. Best wishes to you as you get chemo-ed for a speedy easy recovery :-*
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I hate that you are having to deal with this. I hope chemo goes well and that side effects are minimal.
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So sad to hear about this new illnes, hope you beat it quickly.
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i wish you the best. please stay strong and fight this.
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Henry :( I'm at a loss for words, and didn't know just what to say about all of this, I do know that when I 1st meet you @ AMG D.C. I thought that you were such a nice guy, I know you can beat this, and I think your a lot stronger than you may think, so please be well, and keep up your treatments as I know you will, and I'd like to see you again at another future AMG, just like I did before ;)
HUGS
DEN 8)
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Dearest Henry, I am sorry I missed this post until now but please know I too hope that the chemo kicks butt and that you will be in remission very soon. You are indeed one of the very nicest guys around and you deserve the best.
And to our friend James, also a speedy and full recovery.
Keep on truckin' guys.
Jody
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Henry...just got back from eight days in Jerusalem a few hours ago. I actually put your name on a slip of paper and placed it in the famous Western Wall (aka the Wailing Wall) at the Temple Mount. One would be hard pressed to find a holier place on this planet! I even wore (as all men who go to the wall do) a yarmukle (a first for me!)
Keep reminding yourself how many people are thinking of you and supporting you through this.
Gary
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. I actually put your name on a slip of paper and placed it in the famous Western Wall (aka the Wailing Wall) at the Temple Mount.
This is so cool Gary.
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^^^^^^
agree
Finding my self often thinking how you are Doing Henry, when you have finished and recovered from the chemo I would be intersted in hearing more about your chemo regime .
So here's to your last chemo day Henry.
Michael
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I've tried to follow-up on this thread a few times, but it has been hard to find the right words to tell everyone how much your support and prayers mean to me. To know that so many people are thinking of me and care so much really lifts my spirits. I still have a long way to go with my chemo, and I'll look back here when I'm having a down day (or week). Fortunately, this week seems pretty good, certainly better than last week.
And for Gary, for you to put my name in the Western Wall is just so cool and thoughtful and amazing. I still cry when I think about it. Thank you so much for taking the time to think of me.
My love and hugs to you all...
Henry
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Hi Henry , you are not alone . Its hard to find the right words in this kind of situation but I hope we both can take comfort knowing how much everyone on this forum cares about you and loves you . You are always one of the first to offer support and now its your turn to feel the love .
You can rest assured that every day positive energy is coming your way .
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Glad to hear you are feeling a bit better this week Henry. Hope you are feeling up to a nice Thanksgiving surrounded by family, friends, and good food. :)
Not a day goes by that I don't think about you.
m.
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Love you BUNCHES Henry.
((( Extra big hugs ))
-Will
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Henry,
Thinking about you every day. So glad you are having a good week. When a bad one comes along, just know that we are all here sending positive energy your way Thank goodness there are soooo many positives here!! (I read that humor is therapeutic -- even bad humor).
Sending hugs down to Texas....... :-* :-*
Mike
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Henry,
Glad to hear this week is starting better for you. Even though we've never met personally, know that you're in my thoughts.
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Oh Henry how great it is to read a Post from you and off course it is beautifully worded. You are right Henry ( about many things ) when you say many people have you in there daily thoughts and are wishing you well. I know its a fucking awful struggle at times Henry and am delighted that this week is somewhat better.
Keep on keeping on Henry and be sure that many are wishing you well.
Michael
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Henry, I love to read your posts. Whatever seems to be going on, you always have something sweet to say.
I'm thinking of you, and wishing you the very best with this treatment. {{Hugs from Hoosierville}}
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Henry I just read this last night and it's taken me until tonight to reply...yet I just don't know what to say that hasn't been said already. I think you have had a lot of challenges before and maybe they were just toughening you up for this one. You know I work not too far from you so if you need anything from the store or a light bulb changed or just want to talk, give me a call. Santi and I are thinking of you.
Hugs,
Creighton
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Henry,
Just arrived in Las Vegas tonight for a little R & R before the madness of Christmas and New Years and had reason to remember our great time here a few AMGs ago. I know you are facing difficult challenges and I wanted to remind you that you are always in my thoughts and prayers. Hoping that things are already beginning to get better….
Gary
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Here's hoping this year's holiday season will bring good news for you dearest Henry and that a complete recovery is near for you.
Hugs,
Jody
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I've looked at this white box for 10 minutes now, and nothing seems appropriate. I can only draw from the courage you show to say I am very concerned. I'll keep you in both my thoughts and prayers.
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Henry,
Just arrived in Las Vegas tonight for a little R & R before the madness of Christmas and New Years and had reason to remember our great time here a few AMGs ago. I know you are facing difficult challenges and I wanted to remind you that you are always in my thoughts and prayers. Hoping that things are already beginning to get better….
Gary
Hope you enjoy your R & R, Gary. You deserve it!
To give everyone a quick update, my week is starting out on the upswing, after a down week last week. I'm anticipating the holidays will go well. My next treatment is scheduled to start December 30th, and my sister Louise from New Jersey will be arriving then to help me through it.
My sincere thanks to everyone for their words and thoughts and prayers of support.
Henry
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I'm so happy you are doing so well . We never know how tough we are until we experience something like this and you have been one tough guy through this . Whats next Henry, alligator or bear wrestling ?
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I'm thinking alligator wrestling. He has that cute boonie hat. ;)
Glad you are feeling better lately Henry and that the break between treatments came during the holidays.
xox,
m.
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Not a day goes by without thinking about you, Henrietta. Thanks for the update, and have yourself a merry little Christmas.
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Henry, I hope you're able to relax, lay back, eat, and enjoy the holidays. Still thinking about you, and wishing you the best!
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I'm so happy you are doing so well . We never know how tough we are until we experience something like this and you have been one tough guy through this . Whats next Henry, alligator or bear wrestling ?
How did you know? My first step is to line up an internship with The Turtleman from "Call of the Wildman". :o
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How did you know? My first step is to line up an internship with The Turtleman from "Call of the Wildman". :o
I think he may want an internship with you my friend .
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Henry -
You continue to be in my thoughts. I do hope you are able to enjoy the holidays with some relaxing and general "me" time......
Hugs,
Mike
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Henry ,
I hope your Holiday Season is good for you and the
New Year brings you a cure for you cancer .
Praying for the best ,
Weasel
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Henry and James, keep up the good fight ;)
Growler
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Some tips for you...real ones.
1. No sugar. Don't touch it. Cancer feeds on sugars and carbs so minimize those too.
2. switch to an alkaline diet. google it.
3. Stick with the chemo/Western Medicine as well
4. Beat it!!!!!! You can do it.
5. When I thought i had cancer I even went as far as to add sodium bicarbonate(aluminum oxide free) to my drinking water. What the hell, it can't hurt.
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Hi Henry. I want to let you know that I also had Large B-Cell Non-Hodgkin's Lymphoma, stage-4. It was in my liver, kidneys, spleen, stomach, and bone marrow. It was no picnic getting chemo for five months and all the things that go along with it. Most importantly I want you to know I am now cancer free. I had my last chemo July 2013 and my last CAT scan on Dec 12, 2013. It showed no evidence of disease! I know you can do this. I found being positive in thought helped immensely. I really do not know what else to say Henry. I just want you to realize this can be beat, even when you feel your lowest. I am usually a person who can talk circles around everyone else, I work as a mental health and addiction counselor, but here I cannot find the words. Good luck and know I am thinking the best thoughts for you.
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Nick,
I'm so sorry to hear that you have had lymphoma, but so glad that you have beat it. That's what I continue to hear from multiple sources: this can be beat. So I choose to believe it. Some days it is more difficult than others, but then that is the nature of battling any disease.
Henry
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You're definitely in my thoughts Henry.
greg
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Me too... I check almost every day just to see if there is any new news. Hang in there...and we are hanging in there with you!
Gary
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I'm way overdue to provide an update on my lymphoma treatment. About a week ago I finished my 6th week of chemotherapy. That is the 6th and final treatment in this round. My, how time flies. In addition to IV infusion of chemo over the week, it also concludes with a lumbar puncture and "intrathecal" delivery of prophylactic chemo to my spine / brain. I am so tired of lumbar punctures, but at this point I know almost all of the hospital staff in the "short stay unit", not to mention my oncologist's staff. Overwhelmingly, they are gems.
Along the way, I came down with blood clots in my left arm 2 weeks ago, requiring a trip to the ER and having to give myself injections of blood thinners until my oral warfarin kicked in. Back in February I had a brush with PCP that required a bronchoscopy because it was difficult to confirm. That's when we found out my CD4 count was just 104 (likely due to one of my chemo meds called "Rituxan"), and now I'm taking dapsone as a prophylactic for PCP. Le sigh.
Now I get about 4 weeks of rest, followed by new CT and PET scans in early April. Either I'll be clear of cancer, or I'll need more treatment. Obviously I'm hoping for the former, and it is certainly possible given my super-aggressive "R-EPOCH" treatment plan. But it is not a given, and only time will tell. In the meantime, I'm going to focus on getting some of my strength back, and also getting my appetite back. While I'm not having nausea problems, there is little in the way of food that seems appetizing to me. Any food that is heavy or fried seems particularly unappealing, so I won't be visiting Wumpy's nutrition thread. ;) Ditto for alcohol.
I want to thank everyone for their thoughts and prayers of support. Whether we have been in communication, or you've just been thinking about me, it really helps to know that everyone is here.
Hugs,
Henry
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Thanks for the update Henry -- been wondering how things are going for you.
Will keep you in my thoughts -- and hoping for some good results in April!!
You know we are all here for you!
Hugs,
Mike
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Thinking of you Henry. You've really been through the wringer with all of this.
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Thanks Henry ... You have been a good friend to all that know you and you can count on our unconditional support just as you have shown us over the years . Hugs for Henry .
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Now I get about 4 weeks of rest, followed by new CT and PET scans in early April. Either I'll be clear of cancer, or I'll need more treatment. Obviously I'm hoping for the former, and it is certainly possible given my super-aggressive "R-EPOCH" treatment plan.
I want to thank everyone for their thoughts and prayers of support. Whether we have been in communication, or you've just been thinking about me, it really helps to know that everyone is here.
Hugs,
Henry
Henry, The downtime from chemo is going to feel great. I too am hoping your scan results in April show huge improvement. Keeping you in my thoughts and sending you my best!
Edited to add: I would submit that its probable your scan will come back NED.
James
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Henry, I hope that April will bring not only springtime but great health news for you to be healed from your ordeal. May all good things come your way, you good man you!
Hugs, Jody :)
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Henry I am sorry you are still on the treatment treadmill, though there is nothing quite like the last one in a series . Sounds like the rest period has been well worked for and how typical off sneaky PCP to drop by. You are often in my thoughts and I send as much comfort vibes as I can muster to you , so thanks for giving us this update.
All the Best
m
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Wishing you the best Henry.
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You have always remained in my thoughts Henry. Thanks so much for the update.
I hope you gain your strength and appetite back now that you have finished with round 6 and that April gives you the best of news!
I can't even begin to imagine what you have been through but I feel the tide turning.
A big long tight (((hug))).
Mark
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Keep up the good fight Henry! I'm no soothsayer or fortune teller, but I have this feeling that you'll be rewarded with good news in April. I'm always praying and sending good thoughts for you.
And dont worry about the fried foods, I'll take care of eating those up while you are out of commission, but I'll be looking forward to a trip to Catfish Parlour once you are better :-*
Hugs and much much love,
-Guillermo
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Henry,
Add me to this list of voices who are happy to hear from you again. I have made it my personal project since last fall to pray for you daily and I have no intention of stopping! I have always been convinced of the power of prayer (it's that "network of souls" I love to quote every year in the Memorial service!)
Grateful that you have updated us on your progress and grateful that you get a much needed "treatment break." Prayers for the best news possible in April.
Gary
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Henry,
Wishing all the best for great news next month. It is great hearing from you. Even though many of us have yet to meet, I know we think about and pull for each other, as if we have.
Take care and hoping you get energy and appetite back, during the month of rest.
Ted
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Wow Henry, you sure are going through a lot of shit. You're so courageous, I'm in awe of you. You're one amazing man.
I will definitely continue to keep you in my thoughts, and look forward to good news in April!
Betty
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You have been through so much, I can't imagine. You are one tough cookie. Hang in there. I'm rooting for you. Get well and get some rest.
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Sounds good Henry . I'm still praying for good health for you :)
Thanks for posting the up-date . Really is so much going on
in your life ! Waiting for the ALL CLEAR !!!!!
A big HUG from Carl
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Great news Henry...glad the treatment break is starting now....spring has sprung just for you....enjoy the break...all the positive thoughts and love will be flooding in .... look forward to full recovery....
Nick
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I got the results of my most recent PET scan today: negative. No signs of cancer anywhere. I'm officially in remission. I'm overwhelmed, and I'm still absorbing the good news. Thankfully my 2 sisters and brother-in-law are here to celebrate with me. One sister has been here since last week. My other sister and brother-in-law arrived today at 1PM -- I was able to give them the good news when I picked them up at the airport. Now we can really celebrate the news few days.
No more chemo! I will have follow-ups with the doc every 3 months. And my doc wants me to consult with a radiation oncologist to see if I may need prophylactic radiation. Given that my tumor initially appeared on my chin, it may be more likely that Birkett's lymphoma could recur in my brain or spine, so zapping it with radiation may be called for. Radiation wouldn't exactly be a picnic, but simpler and shorter than my chemo regimen. I also need a CT scan to find out why my lower left abdomen is still somewhat painful -- but we know it isn't cancer. I would have had that CT scan already if my insurance company hadn't balked at having both PET and CT scans at the conclusion of chemo (cheap bastards).
Things are looking up today. I feel like I've had a huge weight lifted off my shoulder, even if I do have a little more treatment ahead of me.
My thanks to everyone who has supported me and prayed for me. I'll provide another update in a few weeks as I learn more.
Cheers,
Henry
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Henry , welcome to the club , your delight and relief travels. I have followed your journey and this is the best bit.
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FANTASTIC HENRY!!!!!! ;D
Im am so relieved and happy for you! Such such good news!
Now let's go get some all you can eat catfish dammit!!
Big ol hugs to you!
_will
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This news made my week ... I want to feed you and Willy catfish to celebrate so yall come on .
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Thanks for sharing the great news Henry, you deserve the very best. I was just thinking about you this weekend as it had been over a month since you last posted I believe. Enjoy your celebration and we will all cheer you from the four corners of the globe good man! :) :) :)
Jody :) :) :)
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That just made my day.
(((Mark to Henry)))
Onward! :)
Actually much more than made my day.
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Henry,
I am ELATED to see this news. I have prayed for your recovery and your strength daily since this whole odyssey began... Some of that connection happened when I had that powerful moment at the Western Wall in Jerusalem last November. I check daily to see if there are updates in this thread.
You have shown great character and courage in sharing this story with us...it is incredibly inspiring. And this good fortune could not possibly happen to a better guy!
I leave for a two week cruise up and down the Alaskan coast on Friday. I will be sure to toast your good health and your great news when we sail from Vancouver on Sunday.
Congratulations and continued good news.
Your friend and prayer partner,
Gary
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Thats fantastic news! :)
Have a great celebration with your family!!!!!!!!!!
britchickxx
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Great, Henry! I'm so excited for you! If I were there, I would definitely go out with you and Will for catfish (or I would meet you at Jeff's). Please take care.
Betty
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What a welcome relief! I'm grinning ear to ear and doing a happy dance as I write this. Congrats Henry!
Hugs and smoochies,
Ann
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outstanding henry! good job man, screw cancer
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Just fantastic news Henry!
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Henry-
The best news of the week, by far!!! Celebrate, dance, sing, jump up and down, do whatever the hell you feel like.
I am so happy for you - sending a virtual hug until I next see you in person, when is will squeeze the hell out of you.
Hugs,
Mike
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This is GREAT news Henry ! We're wishing you the very best !!
Ray
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That is wonderful news Henry !!!
I am thrilled for you .
Carl
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I am so glad you got this news. As I said before, we may not all have met, talked on the phone, etc, but we worry and pull for each other as if we have known each other closely. I am so happy you got this great news. Continuing to send positive energy that this will be completely in the rear-view mirror.
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This is the best news I have heard in a LONG time! Isn't it a great feeling to get good results from a scan? Hard to put into words but I know exactly how you feel. One more treatment left for me and I will burn my chemo shirt!
Best to you Henry!
Edited to add: Keep those chakras clear! lol
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One more treatment left for me and I will burn my chemo shirt!
Great idea! I need to get rid of the button-down shirts I typically wore on chemo weeks. Too many bad memories. The surgeon who implanted my port said she would give it back to me after I get it removed, as many of her patients have "port smashing" parties.
Edited to add: Keep those chakras clear! lol
Meditation and visualization has definitely helped me through all this, and will continue to do so. That, and the support of all my friends and family.
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Henry,
I am so happy for you!
Grinning and showing my remaining 783 teeth. :D ;D
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I'm two days late to this party, but AAAAAAAAAAAAAAAAHHHHHHH !!!!
You go, Henrietta!
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AAAAAAAAAAAAAAAAHHHHHHH !!!!
That about sums up how I feel right now. I know I still have follow-up work to do, and will need to be vigilant. But, as this has taught me, one day at a time…
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Yes! AAAaaaaaaaaaahhhhhhhhhh! Happy for you Pal
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I am just elated -
Such great news Henry -
I also am grinning ear to ear...
Your strength, courage, and fortitude during all of this has truly been an inspiration.
Many, many more years of good health...
Keeping you in my continued thoughts and prayers.
-Phil
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I met with the radiation oncologist today. The bottom line is that she believes I should go through a course of "preventive" radiation to zap the lymph nodes that were involved in my lymphoma. When I asked why, she said is was pretty much standard practice for HIV-related lymphomas. She couldn't immediately point me to any studies which indicated this. I could only find some anecdotal evidence when I did a google search.
Phooey. I don't really want to go through radiation treatments. On the other hand, I really don't want a recurrence of lymphoma. The radiation regimen is a relatively short duration: 17 treatments, or just over 3 weeks. And, according to the doctor, it's a relatively low dose of radiation. I'll probably get a sore throat and dry mouth from radiation to the lymph node under my chin, and some nausea / diarrhea from radiation to the lymph node in my abdomen. The doc thinks I'll get through it just fine, but she probably says that to everyone. Though from what I read, the side-effects will likely show up when I'm getting closer to finishing up my treatments.
I need to call back the doc tomorrow, and ask for some reference / study information on radiation for HIV-related lymphomas. I want to be sure this is really necessary.
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I thank you for sharing . My step dad just went through a month of radiation for prostate cancer and they gave him the same possible side effects but he didn't have any thankfully .
I'm happy that you are doing everything you can to stay healthy even when its hard, I have never once doubted you would fight with everything you have and you have done just that .
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time for the Happy Dance there Henry...... take all the joy you squeeze out of it... if the radiation will be an "extra" do it..... but keep the happy thoughts.... so glad you have this huge relief
Nick
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I met with the radiation oncologist today. The bottom line is that she believes I should go through a course of "preventive" radiation to zap the lymph nodes that were involved in my lymphoma. When I asked why, she said is was pretty much standard practice for HIV-related lymphomas. She couldn't immediately point me to any studies which indicated this. I could only find some anecdotal evidence when I did a google search.
Phooey. I don't really want to go through radiation treatments. On the other hand, I really don't want a recurrence of lymphoma. The radiation regimen is a relatively short duration: 17 treatments, or just over 3 weeks. And, according to the doctor, it's a relatively low dose of radiation. I'll probably get a sore throat and dry mouth from radiation to the lymph node under my chin, and some nausea / diarrhea from radiation to the lymph node in my abdomen. The doc thinks I'll get through it just fine, but she probably says that to everyone. Though from what I read, the side-effects will likely show up when I'm getting closer to finishing up my treatments.
I need to call back the doc tomorrow, and ask for some reference / study information on radiation for HIV-related lymphomas. I want to be sure this is really necessary.
We are always told to get a second opinion. She may be right, but I would want more info, too. I suppose oncologists in cities like San Fran, L.A., and NYC would have more experience with poz patients and lymphoma. I would think another reputable doc in this area could be contacted for consult, without having to actually fly and see them.
Whatever happens, I wish you continued success. If you have to do the radiation, I hope you have very minimal side-effects.
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Radiation. This past week or two I've done a lot of investigation into radiation treatments for my type of lymphoma, and it is really a mixed bag. Doctors seems very split on on its use to prevent recurrence. I called my doctor and asked why she thought radiation would be beneficial in my case, as opposed to cases where radiation is not indicated. Her response was that since I had "bulky nodal" non-Hodgkins disease (i.e. rather enlarged tumors in my lymph nodes), radiation would be beneficial to "mop up" any remaining isolated cancer cells. I have found references to studies which support that, and others that don't. Secondarily, my doc believes HIV puts me in a high risk category for recurrence, also adding to her radiation recommendation.
I've been perusing several discussion forums for people with lymphoma, and their experiences are just as mixed. There are those for whom chemo alone works and prevents recurrence, those who are successful with chemo and radiation, and those who have recurrence despite both treatments. There's really no way to predict who falls in which category, and of course no guarantee of preventing recurrence.
I do have an appointment later this week with another oncologist to get a second opinion (what an ordeal). In the meantime, I've gone ahead with the CT "simulation" scans needed to prepare my course of radiation. I don't have to go through with it, yet somehow I think I'll be kicking myself if I don't.
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thats some heavy shit you're facing. sounds like its a total judgement call with the mixed results/reviews
whatever course you choose, best of luck, cancer sucks
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It sounds like you already are leaning towards doing the radiation treatments but need to make peace with the decision one way or the other . I can't help and be selfish because I care about you ... but its your body and your choice and I resist the urge to say much else other than you have my unconditional support .
You are helping others by sharing your story along the way
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Sometimes living in a black and white world is comforting. Sorry you are dealing with shades of gray Henry.
hugs.
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Henry,
Sorry about this latest struggle. Sounds like there isn't a real right or wrong choice. You need to do what you are comfortable with and it does sound like you are gathering all the right info to make that informed choice.
I don't have to go through with it, yet somehow I think I'll be kicking myself if I don't.
You didn't ask for an opinion, so I'll refrain, but I can't help think that this last sentence of yours contains your answer!
Hugs,
Mike
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Well, I suppose that opinions, even second opinions, are like assholes: everyone has one. I saw a radiation oncologist for a second opinion last Friday. He was sooooo noncommittal. I think that some professionals are hesitant to contradict their colleagues. His view is that, for my case, he would "offer me" radiation as there are "potential" benefits, but there are also risks and that I'd need to make a careful decision. Duh. It was surprisingly difficult to get an opinion out of this guy. I think it reflects the conflicting view of radiation for lymphoma.
So here's what I know:- The use of radiation for treating lymphoma after a clear PET scan has conflicting views.
- There are a couple of studies that show benefit (preventing recurrence) from undergoing radiation, for my type of lymphoma and at my stage.
- From looking at some well-used online forums for cancer patients, people with lymphoma struggle with this decision all the time. Misery loves company.
Bottom line: I start radiation this Wednesday. I think there is benefit. I know there are some risks, and there are no guarantees.
Please remind me of this decision in a few weeks when I am complaining about side-effects such as sun-burned skin, a raging sore throat, or nausea or diarrhea. These should be short-lived since I'm only going through 17 treatments. My last treatment is June 27th (the first treatment is just a practice run -- no real radiation). The worst long-term side-effect may be that my lower salivary glands may be destroyed, I'll be swigging Biotene mouthwash currently, and my lower teeth will deteriorate.
The tough part of this decision is that I'm sorta starting to feeling like normal, except for peripheral neuropathy, and some unspecified abdominal and hip pain for which a CT scanned showed no problems. My energy level has really started to spring back. Now I'm going to subject myself to radiation, but I don't want to slide backwards.
I keep repeating to myself: it's just 17 treatments, just 17 treatments. The cool part is that my sisters will be coming to visit me again. :)
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Henry ... good for you . I am a selfish man and I personally am happy to hear that you are going the extra mile to assure this is behind you . Its hard to give a polite I support you no matter what statement for me on this subject so forgive me for being very happy and relieved that you are going through with this . Hugs .
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It appears you've done extensive research before making the best possible decision. When there is conflicting data, all we can do is decide what's best for each of us personally.
Sending huge ole positive thoughts and wishes your way. Take care of yourself and kick this in the ass.
hugs
greg
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Wishing you my best Henry. Hopefully the treatment will go smooth without any long-term effects or even short-term for that matter. A few more weeks, hang in.
More hugs,
m.
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Wishing you all the best for smooth sailing.
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Henry -
So glad that you came to a decision -- often this is the most harrowing part.
Here is hoping that your radiation treatments go as smoothly as my dad's did -- he really did tolerate them very well.
Hugs,
Mike
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you got this, dangling
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can't think of anything to say that you don't already know.
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I'll add my two cents... confirmation! You have studied and pondered the risks and benefits very carefully and did not get yourself persuaded only by the medical advice. This means YOU have made the decision (and if complaining about the side effects later help you get through the ordeal, complain! You have earned the right.)
Much more important is the fact that you are extensively involved in this decision and in your own medical care. This, more than anything, will be a help in the weeks ahead.
You remain on my daily prayer list for strength and perseverance. You are most likely unaware of it, but you are an inspiration and model to others who are struggling with similar journeys. Thank you for your courage,
Gary
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Henry,
As far as I am aware there are no reasons why you cannot stop radiation treatment at any time so if you think the side affects tip the balance you still have options.
Completely understand your Post , enjoy the comfort that sisters bring ,
love
Michael
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can't think of anything to say that you don't already know.
Me too !
I pray to GOD you will be OK ;)
Carl
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Fuck Henry. :(
MtD
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I have been through 3 radiation sessions so far -- 14 more to go. Yes, I'm counting. It's an odd experience, laying there for about 20 minutes while a large machine circles around you, blasting you with X-rays. You don't feel a thing, though my vivid imagination sometimes does. You just lay there while this large machine rotates around you, making a high-pitched noise for about 10 seconds each time it delivers radiation. After each person is done, we just scurry out the door. It's rather like an assembly line.
I made my doctor show me my "treatment plan" showing exactly where the radiation will be delivered. She was more than happy to explain, and stayed with me past closing time last Thursday to do so. I'm amazed at how precise it is. It looks like a 3D topographical map, showing the lines of 100%, 97%, 80%, and 30% coverage over an irregularly shaped polygon based on my original tumors. I thought they would just be blasting an area -- I have images of a "ray gun" from an 1950s B movie.
So far, the only side-effects is some dry mouth, which is due to my lower parotid (salivary) glands being nuked. And some fatigue, which is expected because my body is trying hard to repair the tissue. No irritation or burning yet -- I bought this lovely skin cream that everyone on my lymphoma cancer forums swears by. It is supposed to prevent skin problems from radiation, but if I do get any kind of burning, at least my skin will be soft and fragrant.
In the TMI department, I've had horrible constipation -- exactly the opposite of what my doctor told me to expect. Probably because I am so uptight. If Miralax doesn't work soon, I see an enema in my future. ::)
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. I'm amazed at how precise it is. It looks like a 3D topographical map, showing the lines of 100%, 97%, 80%, and 30% coverage over an irregularly shaped polygon based on my original tumors. I thought they would just be blasting an area --
Very interesting, and great doctor. Yes I had the 1950's ray gun image as well.
Keep on keeping on Henry! You can do this! I'm behind you and sending you prayers and thoughts
:-*
Will
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you're doing good man
if you could just shit and drool, you'd be great!
good luck
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It sounds a breeze to Chemo Henry , I think Zach covered the situation , leaving little to be usefully added.
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Zack did nail the perfect get well post of the day me thinks .
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My thoughts are with you, Pal.
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you're doing good man
if you could just shit and drool, you'd be great!
good luck
I agree ! :)
Carl
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OH Henry!!! I am so terrible at following up on forums. Great news, being in remission. I am still cancer free myself. I had R-EPOCH too! I wore a bag with a pump and went in five days a week to have it refilled with all the cancer killing drugs. The Rituxan was lowered as it was causing probs. I have peripheral neuropathy in my feet because of it, it's annoying as hell. I am taking Lyrica for it, supposed to stimulate damaged nerves. As for the constipation, how annoying is that?, you need yogurt, fiber out ur ass, and Senekot! If that doesn't work take some Ex-Lax. I had the Miralax but never needed to use it. I tried to be pro-active with my pooping schedule!! Enough of crap talk. I also had some radiation. That was nuttin' compared to chemo. I would take radiation any day. Keep moving along, remain positive, and this will be over soon my friend. Please message me if you need to talk or have any questions. I am not a stalker, gossip :-X, in need of money, or crazy! I also have a degree in human development along with a degree in counseling. These come in very handy when someone needs to talk. I talk to and counsel myself all the time!! LOLOL...... ;)
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Zack did nail the perfect get well post of the day me thinks .
How his gifts have escaped the talent spotters at Halmark is a ? bordering on a investigation into there employment demographics , for heck,s sake he pick,s mushrooms gardens is in touch with nature all on a solid knowledge off Western pharmaceuticals. How has he not got a Page in some ritzy ditsy mag is a disgrace
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Henry,
I just found your posts on this. You are in my thoughts and prayers.
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hang in there, Henrietta!
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Fuck Henry. :(
MtD
That might help with the constipation Matilda! ;)
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I am pleased to announced that I have completed my last radiation treatment today. I can now look forward 7-10 days until my side-effects begin to wane. The worst is that I've lost my sense of taste. Just about everything tastes either bitter, or salty. The inside of my mouth is terribly dry and irritated, so I can only eat soft foods that are very moist. I also have to constantly be drinking water, and gargling with either salt water or Biotene. The sides of my neck looks like it has a terrible sunburn (although it doesn't hurt much). And my beard has fallen out in the areas hit by radiation -- the outline is more precise than I would have imagined. I have minor "radiation enteritis" (nausea and some diarrhea) because they also irradiated a lymph node in my abdomen. Oh, and the fatigue from radiation is a bitch.
The good news is that my doc expects all these side-effects to clear up eventually, possibly in 4-6 weeks, and possibly more for the dry mouth and fatigue.
Monday I have a follow-up with my oncologists's nurse practitioner -- hopefully just perfunctory, and to get lab results. Tuesday is a visit with a gastroenterologist, to try to identify some undetermined pain I have in my lower abdomen despite clear PET and CT scans. My guess is that they will find nothing (but I'll bet they will schedule me for a colonoscopy). Tuesday afternoon is physical therapy. Wednesday morning is an MRI of my brain that my neurologist would like to have as a baseline (but which I am nonetheless worried about because I'm afraid it will uncover something else that is wrong). Le sigh.
Oh, on Thursday I saw my psychiatrist, and we decided on having me try klonopin for some anxiety / social avoidance issues I've been having. So I'm now officially a Klonnie Kween!
Many thanks to everyone for your continue support, thoughts, and prayers.
Henry
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I am so glad you are in the light at the end of the tunnel Henry .... after what you have been through I would think you would be the Klonnie emperor or king by now .
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So glad to hear your news and I agree with Jeff about the light at the end of the tunnel. BIG HUGS HENRY!!!
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Henry,
So glad to hear the radiation is done and you haven't turned into the Hulk yet. Glad to also hear while you have some side-effects, they aren't severe. Wishing you all the best that this will now be behind you for good and you'll have decades more of good health.
Ted
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The medication is appropriate and your willingness to get help is to be commended. You have really been through a wrenching experience. Looking forward to hear you emerging on the sunnier side of the street.
Gary
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Glad to hear you are done with radiation, now to get rid of those horrible side effects. You really do deserve a medal for all you have been through and the grace at which you've handled it. I admire your strength.
Hoping the Klonopin helps :) and you are right at home here with all the other "Klonnie Kweens" :P Although *sigh* I'm just a Tramadol pain-killer peon.
Hugs and kisses!
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Henry,
So happy to hear your radiation treatments are done with! Yay! The side effects. Ugh.
Wishing you my best with the upcoming appointments and looking forward to nothing but good news down the road. You have had enough for awhile!!
Hugs,
Mark
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Good for you Henry , and I am sure your taste will remain excellent. Has the doc,s given you any saliva producing stuff can be helpful with what you are describing.
Hope you get some quiet time soon.
All the Best
m
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Good for you Henry , and I am sure your taste will remain excellent. Has the doc,s given you any saliva producing stuff can be helpful with what you are describing.
I asked my doctor about pilocarpine, but she didn't think it was terribly effective (which is substantiated by some studies). And she doesn't like the side-effects of the drug. Plus, it takes 1-2 week for it to even start working. Honestly, I don't need any more side-effects, as I'm struggling with some Lyrica side-effects right now (headache, abdominal pain, sensation of spinning) which have caused me to stop taking it until I can talk to my neuro. I seem to be doing reasonably well during the day at keeping my mouth moist during the day since my upper salivary glands are in fine shape. And I'm using Biotene mouthwash and spray like crazy -- I have a small spray bottle with me at all times, including my night stand.
It's the altered taste of food that is driving me crazy right now. Eating has no enjoyment and seems pointless, except for the fact that I need nutrition. :-[
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Can you masturbate and/or have you gained weight yet?
I've had dry mouth for years and been using Biotene -- I recently read that (some forms of) neuropathy can contribute to this.
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I asked my doctor about pilocarpine, but she didn't think it was terribly effective (which is substantiated by some studies). And she doesn't like the side-effects of the drug. Plus, it takes 1-2 week for it to even start working. Honestly, I don't need any more side-effects, as I'm struggling with some Lyrica side-effects right now (headache, abdominal pain, sensation of spinning) which have caused me to stop taking it until I can talk to my neuro. I seem to be doing reasonably well during the day at keeping my mouth moist during the day since my upper salivary glands are in fine shape. And I'm using Biotene mouthwash and spray like crazy -- I have a small spray bottle with me at all times, including my night stand.
It's the altered taste of food that is driving me crazy right now. Eating has no enjoyment and seems pointless, except for the fact that I need nutrition. :-[
Sounds like you have it covered Henry.
Eventually the things that are driving you crazy will diminish and go . It really is the home straight my dear chap , Treatment Hangover Hell will be History soon.
Do you use calorie rich shakes , Calorie/ vitamin powder / cream / full fat yogurt / Banana / Berries / Honey or and Maple syp / FF Milk / Ice cream being my cannot eat must eat Fab Fave.
All the Best Henry
m
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It's been a while since I posted, so it's time for an update. I'm so glad radiation is over, and that my taste buds are back in shape. During July, I complained to my neurologist, who is treating me for neuropathy, that I was having some strange headaches. She did a brain MRI, which turned out normal (and no differences from my previous MRI last October). We then decided to do another lumbar puncture (an abundance of caution) and unfortunately found "abnormal" cells in my cerebrospinal fluid (CSF). Fuck.
I took these findings and barged my way into my oncologist's office. She ordered new CT and PET scans (both of which seemed to be clear), so she wanted me to see a lymphoma specialist at MD Anderson in Houston. In less than a week, MDA had obtained samples of my biopsy from last autumn, and told me that I had been diagnosed with the wrong kind of lymphoma -- I don't have Burkitts, I have diffuse large B-cell lymphoma (DLBCL), and a special kind of DLBCL called "double hit". The good news is that I got the right chemo, but for the wrong reason. The bad news is that my doctor at MDA thought I should have had a stem cell transplant immediately after my last chemo. Phooey.
So I spent just under a week at MDA in Houston, meeting with doctors and getting more tests: another lumbar puncture (oy! -- my MDA doc didn't feel the one from my neurologist was very conclusive), and a bone marrow biopsy (no sedation -- ouch!). Basically we have to find out where the lymphoma is hiding, if anywhere. I go back to MDA this Thursday 28 August to get all the results. My doc at MDA is super-knowledgeable, and I have lots of confidence in him. To boot, I'm sure he is gay. ;)
Based on how tired I am feeling, there is definitely something going on that isn't right. I'm a bit anxious to find out what it is. I suppose knowledge is power -- but thank God for Klonopin (and hydrocodone).
Prayers and other good thoughts would be most welcome.
Hugs,
Henry
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Henry --
Well this is just, well --- FUCK!!
Will be sending all the good thoughts that I can muster your way. Hopefully this will all be just a minor set back and things get figured out quickly. Knowledge IS power and it sounds like you have a great doctor looking after you.
I'm sure you will have your entire forum family sending prayers and good thoughts.
Hugs,
Mike
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Man Henry you have been through the wringer. Thinking of you and hopeful for the best. Man, the wringer.
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fuck man, another lumbar puncture... i don't think i'll ever consent again
i don't even want to know how they do the marrow biopsy
pull yourself together, don't skimp on the drugs
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Henry
Prayers going up and will continue to go up.
Love you and thanks for the update -
There is definitely power in prayer.
-Phil
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You are always on my mind Henry ... love you man .
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Dammit Henry. I hate this.
Always praying for you. Love you.
-Will
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but thank God for Klonopin
That's my sister!
But OMG Henry, the crapfest you've been through my darling. It's all so confusing to me -- and obviously to your doctors. I hate, as the patient, feeling trapped in between competing analysis of what's going on in my body but mine isn't anywhere near what you are experiencing.
Don't know what else to say but that I am, as usual, rooting deeply for you.
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Rooting for you, as well. I can only imagine the anxiety. Had hoped for continued good reports, but I know those will come again-- just delayed for now.
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I did get once piece of kinda good news: My social security disability was approved. Now I'll need to coordinate that with my employer's long-term disability (they will claw back the initial lump sum payment, which I expected).
Am I officially a disability queen now? ;) Pass me another klonnie…
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ojo Hi Henry, sorry to hear about your new dx, you will beat this too, you are a fighter...I will be sending you my good energy and will be thinking about you..
lots of hugs and good luck buddy ojo
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Just numb hearing all of that. You are always in my thoughts Henry.
more hugs. :-*
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You are in my prayers Henry! Good news is coming ;)
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I too will keep you in my thoughts Henry. You are such a nice man and deserve only the very best. Here's to a thorough diagnosis and a full and speedy recovery so that you can feel like yourself again. And it is good you are on disability now as you can dedicate yourself to just getting better. Working full time would simply not enable you to do so right now.
Hugs,
Jody
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Add me to the echo is supporting voices. For some unknown reason I was thinking about you this morning and now I see this. You have been such a fighter and now some more fighting seems to be in order.
I think the disability is a good sign that you will be able to concentrate on the healing process and managing the doctors. It was so smart of you to follow up on your instinct that something just wasn't right. I believe this will help.
Prayers and support, Love.... Gary
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Am I officially a disability queen now?
... not another one. Heaven help us.
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Henry, Ed and I continue to think of you and wish you the very best with a full recovery.
Ray
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Hi Henry ,
I keep you in my prayers . So sorry that you are going threw all of this . Was really hoping to here a fabulous up date .
Glad you got your SSDI , the less stress the better .
Sending a big ((( HUG )))
Carl
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Am I officially a disability queen now? ;)
I think you get a T-Shirt or something. MissP got a sticker for her hoveround but that was years ago.
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God Henry, so, so sorry to read about all the crap happening. I would be so pissed, you are handling it very, very well.
I'm definitely keeping you in my thoughts, so glad you got your disability. Hug to you.
Betty
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Ready for some happy news? I feel like I'm the luckiest guy in the world. After all the bad news last month about my lymphoma, and the visits to MD Anderson and my local oncologist, the verdict is in: NED (no evidence of disease). Whatever cells were found in my cerebrospinal fluid (CSF), they found no abnormal cells indicating lymphoma. So between the lumbar puncture, bone marrow biopsy, CT and PET scans, and brain MRI, there is no evidence of lymphoma in body. The doc at MD Anderson thinks that whomever did the pathology / cytology on my July LP was, at the least, very imprecise.
I'll still need close follow-up, given the type of lymphoma I had. So I'm going for a follow-up PET scan and brain MRI at the beginning of October. We still need to find out why I'm having headaches, and even more immediately why I am experiencing incredible fatigue. My local oncologist did a battery of tests both last week, and again today. Looking for things like thyroid, testosterone, diabetes, vitamins D and B12, iron magnesium and potassium, and of course my usual HIV tests.
One problem she did notice today is that I have a case of thrush. What the heck? I didn't even notice -- to me is just looks like the back of my tongue is a little coated (I really don't look at the back of my mouth too often). My throat looks fine to me, but she said my throat looked red and inflamed too. Hmmmm, now I'm really curious to get my HIV labs back.
Thanks to all of you for your support and prayers for my healing. Keep 'em coming, as I have follow-up tests in Houston in early October. Right now, I'm breathing a sigh of relief, and will try not to get too wound up in anticipation of my next PET scan. Live in the moment, right?
Henry
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Great news, Henry! As far as the thrush it sounds like when I had it -- I had no idea either, but means likely it was caught early and will clear up easily with Diflucan.
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;D no shit, i was thinking how i don't want to see henry threads, then this
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I about tinkled my pants I was so happy to hear this . So the new headilne is ...
50 year old man who has lived with HIV for 25 and just finished chemo for lymphoma wonders why he is tired .
Get well sweetie ... you know I love you .
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ojo Hi Henry...congratulations, pretty happy for you...good lucl next October
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Terrific news Henry!! You must just feel elated! I'm jumping for joy myself.
Happy hugs,
m.
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Great news. What a great update!
Do you have family and friends helping out? I was trying to imagine the fatigue that you would be going through. I thought about the fatigue that many experience during seroconversion-- that awful mono-like fatigue. Or, the fatigue with something like pneumonia, where brushing your teeth is exhausting. But, those things usually pass after a month or so. Anyway, I had been thinking about you and whether you still struggle with the kind of fatigue, where putting a frozen meal in the microwave would make you have to sit down and rest.
I am glad all tests show no disease, and wishing you all the best on getting back to normal with you fatigue and headaches.
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Wonderful news Henry!
Small wonder that you have been experiencing severe fatigue...there have been a constellation of issues not to mention chemotherapy. I am convinced your positive attitude has been demonstrably helpful in the healing process.
Keeping the prayers and encouragement coming...and looking forward to better days for you.
Gary
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Henry that is some damn good news! Thanks for sharing!!! :)
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Henry---
What incredible news -- I MUCH prefer your "good news" posts, so keep 'em coming!
Perhaps being able to go to bed with peace of mind will help combat some of the fatigue. You really have seemed to maintain a very good attitude through all this. You really do deserve to be able to celebrate with news.
Hugs to you!!!
Mike
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Great news Henry and here's hoping the thrush clears up, you get your energy back and better and better days ahead. :)
Jody :)
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Hi Henry' Was keeping an eye on your thread & waiting for you to post great news !
Be Well , Wade
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Time for another update on my lymphoma treatment. I went to MD Anderson last week for yet another CT scan (head, neck, abdomen, pelvis) and MRI (brain). And thankfully there is still no evidence of disease. Huzzah!
As with my last set of scans, I was really worried about these because I've been experiencing some really profound fatigue, aches / pains in my lower left abdomen / side / back, and a strange tightness / constriction in my throat. And yet, much to my relief, nothing on my scans. How do you spell relief? NED (no evidence of disease).
One thing I'm taking away from this is I'm learning that many cancer patients, or at least lymphoma patients, end up with a lot of residual aches / pains / fatigue that are hard to explain. Those commercial / advertisements you see with people being treated for cancer in one frame, and then bicycling through the forest in the next frame? Meh… maybe true for some folks, but a lot of that is bullshit. Just like those ads for HIV medications. ;)
So what are my next steps? Oh, there's a lot:
- One last lumbar puncture (dammit). My oncologist at MD Anderson wants this just to close out any CNS issues, since it was an LP that brought me to MDA in the first place. Geez, sure, why not take my total number of LPs up to an even 10?
- Visit the "Fatigue Clinic" at MDA. They will do a top-down / bottom-up review of my initial cancer, treatment, test results, diagnostics, side-effects -- plus non-cancer related issues like HIV, depression, etc. -- to see what (if anything) can be done.
- Visit my neurologist to see what can be done about my peripheral neuropathy. We've tried all the obvious choices like Gabapentin and Lyrica. Now she wants to try tramadol, and some topical cream from a compounding pharmacy (bet my insurance won't want to cover that!).
- Visit an endocrinologist, just to make sure my body is in balance. I know my testosterone and thyroid are fine, but my doc thinks it makes sense to do a complete check.
- Get a referral to a pain management specialist from my oncologist. These aches and pains on my left side have been with me since ending chemo, and obviously aren't going away any time soon. (Need to be careful to coordinate with what the neurologist is doing for my neuropathy.)
- Visit an ENT doctor for this tightness in my throat (thankfully, no trouble swallowing). Since the CT scan didn't show any problems, I doubt the ENT doctor will find anything either. But I'd like to be sure. Might just be lingering issues from my thrush infection in August / September.
- Get a colonoscopy. I am 50 now. I had one scheduled for last August, but postponed it due to all the drama and visits to MD Anderson. In the meantime, my gastroenterologist no longer accepts my insurance (Aetna). Doh! So I need to find a new one.
- Continue to exercise once a day. I really have to push myself to get out to the gym. But it makes me feel better -- at least for an hour or two until the fatigue sets in again.
- Have some fun. I sorta remember what that is… ::)
Geez, with all these doctor appointments, I'm starting to feel like Miss P (ha!).
Thanks to everyone for your support, and keeping me in your thoughts and prayers. It has made a world of difference for me.
Cheers,
Henry
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Thanks for the update . I hope the creme helps with your pain and you are able to get it . I'm on medicare and I bet it would not cover it. I'm kind of in the same boat as you are at trying to find ways to cope with pain .
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hang in there henry, ned is good!
screw cancer
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Good to hear from you Henry. Don't rain on Ms. P's parade or you will be in some real pain. ;) You're in my thoughts.
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Geez, with all these doctor appointments, I'm starting to feel like Miss P (ha!).
My only advice is to have you neurologist consent to deferring to the pain management doctor to consolidate treatment of your pain issues for both the neuropathy and the other stuff -- I think it might make it easier on you and make your treatment more organized in the long run.
Good luck.
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ojo Glad to hear from you Henry....you are a fighter....hugs ojo
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Henry in spite of the regimen of Dr visits it is great to hear that most things are at least treatable and especially that Lymphoma.... when it feels like your day revolves around Dr appointments that a good sign that it is time to join the retired ranks... .... if that is possible do it.... !!! no need to add the pressures of "working" to the constant round of Dr.......I hope you continue with the exercising.... I have a regular appointment with a trainer 3X week keeps the routine changed up so it doesnt get boring and really helps with the energy level
hope you can get all the Dr in sync with the "opinions" and treatments
Nick
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Henry, you're still in my thoughts and I continue to send the best positive energy I can. Take care of yourself and continue to get better.
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Love your huzzah moments Henry! Great to hear!
Sorry to see your list... at least 1-7 anyway. Hope your residual stuff can be helped or maybe just disappear.
My only suggestion is that you work most on #9. :)
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Way to go Henry !
Have some fun ,and get some rest .
Then more rest , and more FUN !!
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Woo Hoo on the NED!!
Now here is hoping the other issues get squared away quickly. I am with Mitch though.... Move #9 up to the top..... You deserve it.
Hugs,
M
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Henry,
I'll join "the chorus" and continue to encourage you though the long road of recovery. Your positive mental attitude in the face of debilitating difficulties is not just inspirational, it is downright heroic. Your list seems daunting but once again you are keeping it in "digestible pieces." You are clearly giving yourself the best opportunity for good quality of life. I remember you daily in my prayers and I know all of us intend to continue our unqualified support!
Gary
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Folks,
Long post alert!
I'm continuing to recover from my lymphoma. It looks like I'll be returning to work soon, part-time anyway (more on that later). Every day I feel so thankful, and really understand just how fragile and fleeting life can be. I still have significant fatigue, which is lifting very, very slow. I'm managing that the best I can, and most every day life is pretty sweet. I'm tired of seeing doctors, but grateful I have access to them.
I have completed everything on my list which I posted back on October 31:
- My (hopefully last ever) lumbar puncture was done on December 10. No evidence of disease. My oncologist at MD Anderson is super happy with my results, and said to come back in 6 months for my next follow-up CT scans. I left his office and 10 minutes later I had my friend stop the car so I could vomit on Montrose Blvd in Houston (a side-effect of the LP). Classy, eh?
- My visit to the fatigue clinic at MD Anderson was also on December 10. I have a very caring doctor who evaluated me thoroughly, and assured me cancer-related fatigue is quite real, and quite vexing. Since I am eating, sleeping, and exercising decently, the only next step has been to try Ritalin twice a day. Wheeee…. !
- Visited my neurologist about my peripheral neuropathy, and we've really exhausted most potential drugs. My neuropathy is just not bad enough at this point to consider stronger measures.
- Visited my endocrinologist. Initial tests showed some adrenal / ACTH deficiency. But extended follow-up tests showed everything is working just fine. I was hoping this might explain my fatigue, but I guess I really am just a tired old queen. :P
- I am seeing a pain management specialist for pain in my lower back and left abdomen. After another MRI, he sees no problems, physiologically :-\ So we're treating me with hydrocodone as needed. I have to visit him every month for a new prescription.
- Visited my ENT doctor in mid-November about tightness in my throat. He shoved a camera up my nose and into my throat. Only problems he saw were some thrush, and that the base of tongue was a bit swollen. Treated the thrush with Mycelex and then Diflucan. The base of tongue swelling is more vexing -- he reviewed the CT scans and found no problems. Maybe it was my radiation treatments, so we'll just have to keep an eye on all of this. A follow-up visit on December 31 showed no thrush.
- I had a coloscopy on December 30th. The prep was brutal. My colon is clear, except for some minor diverticulosis. ??? I need to eat (even more) fiber!
- I'm back to exercising once a day (I stopped for a few weeks due to the LP), even if it is minimal. Hired a trainer who kicks my ass twice a week, and change up my routine. I feel good after exercising, but I promptly fall asleep in the afternoon, unless I take my Ritalin.
- Have fun. Well, I bought some pieces of furniture I've been wanting, and have redecorated a bit. I've been updating my wardrobe (out with the old -- too many bad memories). I really did enjoy the holidays, especially with my sister visiting. I'm gonna take a short vacation to the Texas coast at the end of this month. Really eager to attend AMG this year!
- One more thing: I had my port removed (it was implanted in my chest for chemo infusion). Had it done in the doctor's office under local anesthesia. It's a big relief to have it gone. It served its purpose, but was always a bit irritating.
Now I'm faced with returning to work. I think I'm going to write a separate post about that. So many things to consider there.
My thanks to all of you who have supported me and prayed for me.
Cheers,
Henry
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I am thankful you are through with the worst of this Henry . The strength and grace you showed through this is something to be proud of … I am proud of you .
I can’t wait to see in Memphis !
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thats fkn awesome man! great news
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Excellent news Henry! :)
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ojo proud of you Henry....hugs ojo
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wowowow super good news from all that stuff happening...... stick with the trainer a good one will get you going faster than anything you can do on your own.... hope you are able to go slow with the back to work thing.... no need to fall asleep at your desk...
great news Henry...so happy for you
Nick
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I am so delighted to see the progress and your desire to join us at AMG if it is possible this summer. It will be so good to see you especially after all you have been through...we might all hug you to death! (well, not that extreme...) Keep the faith and I will keep up the prayers...haven't stopped and don't intend to!
Gary
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Glad to hear things are going well. Hope you get that energy back soon.
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Henry,
Reading your post was a great way to start the day!! Hoping you continue to keep this momentum going -- and I love that you are remembering to have fun!! Can't wait to see you at AMG and give you a big hug.
M
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Just wonderful news Henry! I am so happy for you!!
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Henry this post made my day! Glad to hear of the great progress you have made, wow what a journey! I admire your strength. Just take it easy and dont push it too hard!
Big Hugs to you!
Oh Ps- I too have thrown up on Montrose Blvd, but mine was due to Tequila. :P
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Yip pee
Henry I am very pleased for you ,reading your post left me smiling
Pip pip
Michael
Ps Your thread will be a fantastically helpful resource for anyone newly diagnosed with Lymphoma, Hodgkin/non- Hodgkin or Aids related Hodgkin
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Taking this back to the first post where you advised members not to dismiss swollen nodes and feelings of something off, I was curious whether you had other symptoms.
I know you had a lump pop up on your chin, seemingly overnight, which caused you to see a doc. Were you having fatigue, chills, night sweats, weight loss-- all those things in articles about lymphoma. Or, were you feeling the same as normal and just had this mysterious lump pop up? Not even counting members here, I know about 4 people who have had lymphoma. All were HIV-neg, so swollen nodes, night sweats and all that really got their attention. For those with HIV, swollen nodes are common. You obviously felt something wasn't right. Without other symptoms, I think about how many with HIV would likely pass swollen nodes (especially one) off as just the virus. And, how many docs would also dismiss them, unless new ones were felt elsewhere or got fairly large, or they complained of bad night sweats, sickness, and weight loss.
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Taking this back to the first post where you advised members not to dismiss swollen nodes and feelings of something off, I was curious whether you had other symptoms.
I know you had a lump pop up on your chin, seemingly overnight, which caused you to see a doc. Were you having fatigue, chills, night sweats, weight loss-- all those things in articles about lymphoma. Or, were you feeling the same as normal and just had this mysterious lump pop up? Not even counting members here, I know about 4 people who have had lymphoma. All were HIV-neg, so swollen nodes, night sweats and all that really got their attention. For those with HIV, swollen nodes are common. You obviously felt something wasn't right. Without other symptoms, I think about how many with HIV would likely pass swollen nodes (especially one) off as just the virus. And, how many docs would also dismiss them, unless new ones were felt elsewhere or got fairly large, or they complained of bad night sweats, sickness, and weight loss.
Actually, the lymph node under my right chin popped up during the day: nothing there when I shaved in the morning, and a noticeable lump in the evening. Prior to that, I had no symptoms and felt quite normal. So I was lucky to have a visual clue that I had a problem. It wasn't until several weeks later (after the CT scan, needle biopsy, and excisional biopsy) that I started to have night sweats. Those are called "B" symptoms of lymphoma: fever, drenching night sweats, and weight loss. And yes, they can be ascribed to many other conditions and diseases. Also, after a few weeks, I started to have pretty serious fatigue. Had I not been able to see my lymph node, it would not have been until that point (about 3 weeks after my lymph node popped up) that I would have gone to see my physician.
Do people with HIV ignore a swollen lymph node, and attribute it to HIV? I don't know. I'm sure some do. I didn't, thankfully. But then again, not everyone with lymphoma has a swollen lymph node. The lymph node on my left chin also was found to be involved, but it was never swollen. Some folks who do not have HIV also ignore these signs and signals. But again, not all. I belong to an online forum for lymphoma patients and friends / families, and they have their own version of our "AMI" forum, with people worrying that they have lymphoma. Most people who post there do not have lymphoma (just like our AMI forum). But obviously many do. There are stories there where doctors have ignored people's complaints about swollen lymph nodes or B symptoms.
Unfortunately, there is no easy blood test for lymphoma (some indicators, yes, but no smoking gun). I would say that people have to be aware of their bodies, and look for sudden changes. But even then, many (most?) lymphomas will not be caught until stage 3 or 4 (meaning they have spread through the body). That's typical because lymphoma is a blood cancer, not a solid tumor. Much moreso than for other cancers, stage 3 or 4 lymphoma still has a very good chance for successful treatment.
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Actually, the lymph node under my right chin popped up during the day: nothing there when I shaved in the morning, and a noticeable lump in the evening. Prior to that, I had no symptoms and felt quite normal. So I was lucky to have a visual clue that I had a problem. It wasn't until several weeks later (after the CT scan, needle biopsy, and excisional biopsy) that I started to have night sweats. Those are called "B" symptoms of lymphoma: fever, drenching night sweats, and weight loss. And yes, they can be ascribed to many other conditions and diseases. Also, after a few weeks, I started to have pretty serious fatigue. Had I not been able to see my lymph node, it would not have been until that point (about 3 weeks after my lymph node popped up) that I would have gone to see my physician.
Very interesting Henry. Good to know this.
-W
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ojo Hi Henry, I'm glad you are doing better...my friend, which you know about him, he was in the hospital where he was for a month and a half, and after a MRI and a puncture, they didn't find anything, but my friend was having lots of pain, when his eye started to get swollen (popping out), they did a biopsy of his eye (back of the eye) they found out it was Lymphoma non Hodgkin's, he went through a couple a chimo treatments, one on his back (puncture), after that, he lasted 10 more days sedated, ended up dying of pneumonia...I don't know why the doctor couldn't find anything as soon as he got to the hospital, he was suffering pain since eight monts before he went to the hospital, tho the pain got worse with time, until the pain was unbearable...I just wonder why the doctors of that hospital didn't see it coming...R.I.P. tonny, I miss you a lot...thanks Henry...hugs ojo
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Great news Henry !
Very informative too,
I followed your post, and didn't realize the nodule appeared that quickly,
Thank You !
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As promised, here is the thread I started about me returning to work. It looks like I will start working part-time on February 2. If you have any thoughts or comments, please post them in this thread:
http://forums.poz.com/index.php?topic=57510.0 (http://forums.poz.com/index.php?topic=57510.0)
Cheers,
Henry