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Author Topic: anyone else have lymphoma?  (Read 2663 times)

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Offline jaace24

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  • Posts: 35
anyone else have lymphoma?
« on: July 06, 2013, 03:09:36 PM »
I was just diagnosed with lymphoma last week.   It is not in any of my organs.  It is on the membrane for my spine and brain.  Doctors seem hopeful that they caught it in time and treatment should go good.  Needless to say I'm scared but hopeful.  Just wondering if anyone else out there battled lymphoma and what your story is?

Offline buginme2

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Re: anyone else have lymphoma?
« Reply #1 on: July 06, 2013, 04:58:45 PM »

I really hope your well and everything goes well from here on out.
 Im sorry to here about your diagnosis. 


Offline tednlou2

  • Member
  • Posts: 4,760
Re: anyone else have lymphoma?
« Reply #2 on: July 06, 2013, 05:19:29 PM »
I'm sorry to hear about the diagnosis.  It is good they caught it early.  I just wanted to wish you all the best. 

I do have a friend from high school, who just went into remission.  I guess the treatment went on a year.  They thought they had it, but then it returned.  Well, they just didn't get all of it.  So, another round of chemo and hopefully he's in remission for good.  He seems to be doing very well.  I've seen him go from looking like hell to out hiking, playing with his kids, etc. 

I don't know if I'm just hearing more stories about lymphoma, because I'm getting older and this is just the age when people start getting things like this.  But, besides my friend, I've heard of a good 4 other friends of friends having it.  They all went through treatment and all are doing great now.  I would expect the same for you.  But, I can only imagine how scary it is. 

Take care and let us know how you're doing.

Ted

Online Jeff G

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Re: anyone else have lymphoma?
« Reply #3 on: July 06, 2013, 05:25:13 PM »
Hi Jaace , I'm sorry to hear about your diagnosis . I don't have the condition but have had  few friends that did and they recovered nicely . I had a stubborn case of KS and went though years of chemo so I understand how you may be feeling having just found out about this .

I hope you know that the forum will always be here and that we will be a source of support if you want to talk , so please let us know how you are making out . Hugs to you . 

You can also use the PM feature if you wish  ;) .
« Last Edit: July 06, 2013, 05:28:09 PM by Jeff G »

Offline lincoln6echo

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Re: anyone else have lymphoma?
« Reply #4 on: July 06, 2013, 05:51:22 PM »
Hi Jaace..shocking to hear something like that on top of everything else hey?
I wish you the best in treatment.

I also had a close friend diagnosed two years ago, went through treatment and in full remission now.

Seems like a lot of people or getting through this these days and hoping everything works out for you.


Offline Jmarksto

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  • Posts: 465
Re: anyone else have lymphoma?
« Reply #5 on: July 06, 2013, 06:06:14 PM »
jaace;  sorry to hear of your diagnosis, but it is good to hear that the doctors are optimistic.  I wish you well,

JM
03/15/12 Negative
06/15/12 Positive
07/11/12 CD4 790          VL 4,000
08/06/12 CD4 816/38%   VL 49,300
08/20/12 Started Complera
11/06/12 CD4   819/41% VL 38
02/11/13 CD4   935/41% VL UD
06/06/13 CD4   816/41% VL UD
10/28/13 CD4 1131/45%  VL 25
02/25/14 CD4   792/37%  VL UD
07/09/14 CD4 1004/39%   VL UD

Offline WillyWump

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Re: anyone else have lymphoma?
« Reply #6 on: July 06, 2013, 09:35:29 PM »
Jaace, I'm so utterly sorry about your diagnosis.  I've never had it (thank the good Lord) but I have 1 friend who was diagnosed about 3 years ago, his was a bit more progressed than yours. He went through about 6 months of Chemo, and i wont lie it was tough for him. But today he is in remission and doing amazingly well, he is actually thriving now! and looks and feels amazing!

Prayers and hugs for you! please keep up informed on your progress!!

-Will
POZ since '08

Last Labs-
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

Offline GSOgymrat

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  • Posts: 5,002
  • HIV+ since 1993. INTJ
Re: anyone else have lymphoma?
« Reply #7 on: July 07, 2013, 12:57:41 AM »
I'm sorry about your diagnosis. My partner, who is also HIV+, was diagnosed with non-Hodgkin's lymphoma in 1996 and then Hodgkin's in 2006. Unlike your situation he had multiple tumors. He made it through chemo both times and is fine. I wish you the best with your treatment.

Offline jaace24

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Re: anyone else have lymphoma?
« Reply #8 on: August 06, 2013, 08:56:05 PM »
just thought I would give you guys an update.  My treatment is as follows.  I will have 8 rounds of chemo(Methotrexate), I have already done 3 rounds.  I have those every other tuesday.  They happen as inpatient hospital stays and I stay in the hospital until I reach a safe level in my blood.  It usually ends up about anywhere from 5-8 days in the hospital.  I then also have 6 rounds of IV therapy with a cancer drug called Rituxin which is made from mice antibodies.  This Thursday I will complete that!  I also have 6 rounds of a combination of chemo drugs and steroids that goes into my headport, which is about a 3 minute injection.  After this Thursday I will have 2 more left!  I sometimes get really sick from the injection but I think it is more because there is a needle stuck in my head.  Then I take this drug called Temodar for 5 days each month for 3 months.  I have a good feeling about my team of specialists working for me and that I will beat this.  They have also been working with the University of MN on this and I trust everything the U of M does as the medical team there is pretty groundbreaking.  After I am in remission, I will have a stem cell transplant and they will utilize my own stem cells.  The studies find that it keeps it in remission.  So that is where I am at right now.  Hope everyone else is doing well.

Online Jeff G

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Re: anyone else have lymphoma?
« Reply #9 on: August 06, 2013, 09:06:39 PM »
Hi Jaayce . You are a fighter and an inspiration for the forum to look up too . Thanks for taking the time to give us an update  , its a reminder for us not to forget to be thankful for good treatments and good support . Please let us know how you are doing or if you need anything . 

Offline buginme2

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Re: anyone else have lymphoma?
« Reply #10 on: August 06, 2013, 09:30:02 PM »
Hey I was just thinking about you and this thread today wondering how you were doing.  Im glad to hear your in good hands.  It sounds like your getting very good and close care.

Sort of off topic but I'm curious, since your getting a stem cell transplant have you thought about participating in one of the HIV cure studies?

The Fred Hutchinson cancer research center has clinical trials going on.now for people with HIV and lymphoma who are getting stem cell transplants as part of their therapyto cure their.HIV. 

May want to discuss with your doctors, the trials are on their website and.clinical trials . gov.

Good luck keep us posted.

Offline jaace24

  • Member
  • Posts: 35
Re: anyone else have lymphoma?
« Reply #11 on: August 07, 2013, 05:32:58 PM »
Bugs I know the U of M doesn't have any trials regarding stem cells and I live in MN and wouldnt be able to afford to travel to another state for treatment.  My insurance right now is at 100% coverage for the rest of the year. 

When everyone else was talking about the people they knew with lymphoma's I am assuming they were positive people, is that correct for the others who said they had friends that went through treatment?

Offline LiveWithIt

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Re: anyone else have lymphoma?
« Reply #12 on: August 08, 2013, 10:09:30 AM »
Hope your treatment goes well and that you recover fully soon.
Pray God you can cope
I know you have a little life in you yet.
I know you have a lot of strength left.

Offline LiveWithIt

  • Member
  • Posts: 377
Re: anyone else have lymphoma?
« Reply #13 on: August 08, 2013, 11:13:03 AM »
I was just diagnosed with lymphoma last week.   It is not in any of my organs.  It is on the membrane for my spine and brain.  Doctors seem hopeful that they caught it in time and treatment should go good.  Needless to say I'm scared but hopeful.  Just wondering if anyone else out there battled lymphoma and what your story is?

What were the symptoms?
Pray God you can cope
I know you have a little life in you yet.
I know you have a lot of strength left.

Offline jaace24

  • Member
  • Posts: 35
Re: anyone else have lymphoma?
« Reply #14 on: August 08, 2013, 11:27:01 AM »
I had a headache for a week that wasn't going away with ibuprofen and then was non stop vomiting.

Offline OneTampa

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  • "Butterflies are free."
Re: anyone else have lymphoma?
« Reply #15 on: August 08, 2013, 04:59:22 PM »
Wishing you the best Jaace.
"He is my oldest child. The shy and retiring one over there with the Haitian headdress serving pescaíto frito."

Offline ratcat

  • Member
  • Posts: 61
Re: anyone else have lymphoma?
« Reply #16 on: August 11, 2013, 12:23:09 PM »
So lucky that you caught it early.  My girlfriend here in Thailand wasn't so lucky as they misdiagnosed her with Tuberculosis and wasted 4 months treating her for it.  By the time we found out the truth it was stage 4 and she was finished. But that's another story.  If you are smart and a fighter then u can beat it no problem.

I have some suggestions.
 
1.  stick with the medical treatment

2.  also stop eating sugar.   sugar feeds cancer.  White bread and carbs convert to sugar quickly so lay off that too.

3.  oxygenate your blood with an Alkaline diet (green vegetables...google it!!) and add sodium bicarbonate (pure...aluminum oxide free) to your drinking water.  Cancer can not grow in an oxygen rich environment.

ok...rock and roll 8)


Offline Theyer

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  • Posts: 2,470
  • Current ambition. Walk the Dog .
Re: anyone else have lymphoma?
« Reply #17 on: August 11, 2013, 06:25:09 PM »
Sorry.

Hodgkin L in 1995 then "Aids related Hodgkins L " in 2005.

Am tired  but did not want to overlook feel free to PM me.

All the best
Michael
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline jaace24

  • Member
  • Posts: 35
Re: anyone else have lymphoma?
« Reply #18 on: August 23, 2013, 12:15:01 PM »
Just found out yesterday that I am cancer free.  Now the goal is to keep it that way!  I still have to finish up the rest of my 4 treatments.  I am also meeting with the University of MN on Monday.

Offline Theyer

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  • Current ambition. Walk the Dog .
Re: anyone else have lymphoma?
« Reply #19 on: August 23, 2013, 12:31:27 PM »
VONDERBAR
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Online Jeff G

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Re: anyone else have lymphoma?
« Reply #20 on: August 23, 2013, 12:32:05 PM »
Just found out yesterday that I am cancer free.  Now the goal is to keep it that way!  I still have to finish up the rest of my 4 treatments.  I am also meeting with the University of MN on Monday.


This is the best news EVER ! . I'm so happy for you I don't even know what to say . 

Offline britchick

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Re: anyone else have lymphoma?
« Reply #21 on: August 23, 2013, 05:23:09 PM »
Fantastic news  xx

britchickx

Offline jaace24

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  • Posts: 35
Re: anyone else have lymphoma?
« Reply #22 on: May 25, 2014, 04:11:03 PM »
Just wanted to update everyone. I am a month away from when I was diagnosed with lymphoma.  I have scans every 3 months and so far they have all been clean. I'm looking forward to being able to enjoy my summer this year. 

Offline Buckmark

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Re: anyone else have lymphoma?
« Reply #23 on: May 26, 2014, 08:28:07 AM »
Just wanted to update everyone. I am a month away from when I was diagnosed with lymphoma.  I have scans every 3 months and so far they have all been clean. I'm looking forward to being able to enjoy my summer this year.

So glad to hear you are still free of cancer.  This is a big anniversary for you -- you should celebrate.  I was diagnosed with lymphoma (non-Hodgkins, in my chin and abdomen) last September, and recently received a clear PET scan after lots of chemo.  I suspect my 1-year anniversary will be very significant.

Cheers,

Henry
"Life in Lubbock, Texas, taught me two things:
     One is that God loves you and you're going to burn in hell.
     The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love."
- Butch Hancock, Musician, The Flatlanders

Offline jaace24

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  • Posts: 35
Re: anyone else have lymphoma?
« Reply #24 on: May 26, 2014, 08:50:16 PM »
Henry that is awesome news!  Too bad we didn't live near each other. We could celebrate!

 


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