Author Topic: My very own lymphoma (Read 69286 times)

drewm · « **Reply #150 on:** August 24, 2014, 07:26:03 pm »

You are in my prayers Henry! Good news is coming

Jody · « **Reply #151 on:** August 24, 2014, 08:42:40 pm »

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

Lou-ah-vull · « **Reply #152 on:** August 24, 2014, 09:48:27 pm »

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

Miss Philicia · « **Reply #153 on:** August 25, 2014, 09:24:53 am »

Quote from: Buckmark on August 24, 2014, 03:45:03 pm

Am I officially a disability queen now?

... not another one. Heaven help us.

J.R.E. · « **Reply #154 on:** August 25, 2014, 09:55:28 am »

Henry, Ed and I continue to think of you and wish you the very best with a full recovery.

Ray

weasel · « **Reply #155 on:** August 25, 2014, 01:49:47 pm »

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

WillyWump · « **Reply #156 on:** August 26, 2014, 07:04:18 pm »

Quote from: Buckmark on August 24, 2014, 03:45:03 pm

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.

BT65 · « **Reply #157 on:** August 27, 2014, 05:41:34 am »

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

Buckmark · « **Reply #158 on:** September 10, 2014, 02:08:28 pm »

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

Miss Philicia · « **Reply #159 on:** September 10, 2014, 02:22:56 pm »

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.

zach · « **Reply #160 on:** September 10, 2014, 02:53:41 pm »

no shit, i was thinking how i don't want to see henry threads, then this

Jeff G · « **Reply #161 on:** September 10, 2014, 03:16:57 pm »

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 .

Tonny2 · « **Reply #162 on:** September 10, 2014, 03:21:11 pm »

ojo Hi Henry...congratulations, pretty happy for you...good lucl next October

mitch777 · « **Reply #163 on:** September 10, 2014, 03:37:48 pm »

Terrific news Henry!! You must just feel elated! I'm jumping for joy myself.

Happy hugs,
m.

tednlou2 · « **Reply #164 on:** September 10, 2014, 04:47:43 pm »

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.

Lou-ah-vull · « **Reply #165 on:** September 10, 2014, 05:53:25 pm »

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

drewm · « **Reply #166 on:** September 10, 2014, 06:51:17 pm »

Henry that is some damn good news! Thanks for sharing!!!

bocker3 · « **Reply #167 on:** September 10, 2014, 08:19:53 pm »

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

Jody · « **Reply #168 on:** September 10, 2014, 08:43:26 pm »

Great news Henry and here's hoping the thrush clears up, you get your energy back and better and better days ahead.

Jody

Wade · « **Reply #169 on:** September 10, 2014, 09:37:54 pm »

Hi Henry' Was keeping an eye on your thread & waiting for you to post great news !
Be Well , Wade

Buckmark · « **Reply #170 on:** October 31, 2014, 10:31:41 am »

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

Jeff G · « **Reply #171 on:** October 31, 2014, 10:40:47 am »

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 .

zach · « **Reply #172 on:** October 31, 2014, 11:12:45 am »

hang in there henry, ned is good!

screw cancer

Dachshund · « **Reply #173 on:** October 31, 2014, 11:18:20 am »

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.

Miss Philicia · « **Reply #174 on:** October 31, 2014, 12:57:37 pm »

Quote from: Buckmark on October 31, 2014, 10:31:41 am

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.

Tonny2 · « **Reply #175 on:** October 31, 2014, 03:14:04 pm »

ojo Glad to hear from you Henry....you are a fighter....hugs ojo

pozniceguy · « **Reply #176 on:** November 01, 2014, 12:23:56 am »

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

wolfter · « **Reply #177 on:** November 01, 2014, 08:11:07 am »

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.

mitch777 · « **Reply #178 on:** November 01, 2014, 03:27:20 pm »

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.

Wade · « **Reply #179 on:** November 01, 2014, 05:02:47 pm »

Way to go Henry !
Have some fun ,and get some rest .
Then more rest , and more FUN !!

bocker3 · « **Reply #180 on:** November 01, 2014, 09:09:05 pm »

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

Lou-ah-vull · « **Reply #181 on:** November 02, 2014, 01:16:35 am »

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

Buckmark · « **Reply #182 on:** January 10, 2015, 02:03:39 pm »

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.
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

Jeff G · « **Reply #183 on:** January 10, 2015, 02:47:05 pm »

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 !

zach · « **Reply #184 on:** January 10, 2015, 03:01:00 pm »

thats fkn awesome man! great news

drewm · « **Reply #185 on:** January 10, 2015, 07:54:06 pm »

Excellent news Henry!

Tonny2 · « **Reply #186 on:** January 10, 2015, 08:12:38 pm »

ojo proud of you Henry....hugs ojo

pozniceguy · « **Reply #187 on:** January 10, 2015, 11:43:57 pm »

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

Lou-ah-vull · « **Reply #188 on:** January 11, 2015, 12:27:46 am »

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

tednlou2 · « **Reply #189 on:** January 11, 2015, 01:37:52 am »

Glad to hear things are going well. Hope you get that energy back soon.

bocker3 · « **Reply #190 on:** January 11, 2015, 10:54:54 am »

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

mitch777 · « **Reply #191 on:** January 11, 2015, 02:40:38 pm »

Just wonderful news Henry! I am so happy for you!!

WillyWump · « **Reply #192 on:** January 11, 2015, 11:52:49 pm »

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.

Theyer · « **Reply #193 on:** January 14, 2015, 05:47:39 pm »

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

tednlou2 · « **Reply #194 on:** January 14, 2015, 06:37:14 pm »

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.

Buckmark · « **Reply #195 on:** January 14, 2015, 08:37:55 pm »

Quote from: tednlou2 on January 14, 2015, 06:37:14 pm

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.

WillyWump · « **Reply #196 on:** January 14, 2015, 10:31:59 pm »

Quote from: Buckmark on January 14, 2015, 08:37:55 pm

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

Tonny2 · « **Reply #197 on:** January 15, 2015, 11:02:02 am »

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

Wade · « **Reply #198 on:** January 15, 2015, 08:34:35 pm »

Great news Henry !
Very informative too,
I followed your post, and didn't realize the nodule appeared that quickly,
Thank You !

Buckmark · « **Reply #199 on:** January 22, 2015, 10:24:42 am »

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

Cheers,

Henry

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Author Topic: My very own lymphoma (Read 69286 times)