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Thread: Follicular Lymphoma for a while now

  1. #2441
    Senior User
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    Gabapentin (or Pregabalin, for that matter - gave both a fair try) didn't really work wonders for me… Although they did attenuate the pain, I constantly felt slightly beside myself. I ended up stopping cold turkey when I realized that I was having issues with water retention. The next morning, my weight was down 1.2 kg! My hematologist later confirmed that that was a clear sign of water retention.

    Are you having any physiotherapy to help rebuild muscle?

  2. #2442
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    Oct 2013
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    So glad you are through all this. My other half had the same issues with fatigue for awhile, but got better every few days. Naps are your friend. He also took gab ( however that is spelled) for neuropathy, but it added to his fatigue and he said forget it. I really don't know now days what is out there to take for pain. Wishing well and happy to see the results are good.
    Zorro
    Age 61
    diagnosed March 20 2013
    High Grade Non-Hodgkin Diffuse B-Cell Lymphoma w/some Burkitt like cells involved
    PET showed spots on liver and enlarged spleen w/hot spots all over Lymp areas
    Treatment started Martch 29 2013 R-ECHOP 6 rounds (1 week on 2 wks home)
    Spinal tap w/chemo for insuarnce (clean spinal fluid)
    neulasta shot after R-ECHop treatment
    June 29 PET clean
    Sepr 12 PET clean
    Nov 11 2013 melanoma removed from back all clear margins 7 inch cut
    Nov 25 confirmed MRSA infection and cleared up with bactrim
    Dec 16 still waiting for wound to close and heal (on his lat and he works out)
    wound from melanoma healed and infection gone, great war scar now
    Cat Scan Dec19th scan was clean
    Feb 20th Ct came back NED "NO ENEMY DETECTED" WHEW!!!
    May 20th 2014 NO ENEMY DETECTED!!!!!!!!! CT clean
    Aug 12 Bloodwork came back as doing what it should be doing. Cat scan in Nov.
    Oct 08 2014 tested positive for hyperthyroid. testing this week to find out more.

  3. #2443
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    Hope you are doing well
    Age = 44
    Stage 3 follicular NHL & Hodgkins
    Diagnosed Sept 2013
    Escalated BEACOPP + Rituximab completed 2017

  4. #2444
    Administrator Top User Kermica's Avatar
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    Thanks, Simon, I'm doing okay, I think. I did have a spike in my white blood count last week (up to 23,500, I believe) but nobody in my local office got excited about it so neither have I. I would like to know what is causing it, though.

    More concerning to me is the continuing muscle pain I am experiencing. It is like the inside of my back, arm, whatever is inflamed and throwing pain signals. The gamapentin helps and has definitely helped with the hand shaking (i've been dealing with that for several months) so that is good.

    Less good is the distinct impression that I am once again becoming lumpy. My right cervical zone of the neck seems to be particularly so which is right where the biggest DLBCL tumor was before the R-CHOP and BEAM. Its probably all in my mind so I will monitor it and wait for the Day 90 CT scan. Today is Day 42 so things will be showing pretty well if my perception is based in reality instead of just in my mind, lol.

    Good health,

    kermica

  5. #2445
    Super Moderator Top User po18guy's Avatar
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    Good and comforting to hear from you. Your blood numbers will fluctuate - sometimes rather wildly - for for no apparent reason. Almost four years out, mine are still up and down - said fluctuations being so noted, but causing interest rather than concern. The pain issue "sounds like" a form of GvHD, which is still in the acute stage and may very well resolve. Sooner rather than later, we hope.

  6. #2446
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    Oh, dear… I do hope the "lump" turns out to be a figment of your imagination! You certainly have earned a good long remission after all you've been through...

  7. #2447
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    Hi guys: Kermica, Po, john-r, Defens and others...

    Quote Originally Posted by Kermica View Post
    Thanks, Simon, I'm doing okay, I think. I did have a spike in my white blood count last week (up to 23,500, I believe) but nobody in my local office got excited about it so neither have I. I would like to know what is causing it, though.

    More concerning to me is the continuing muscle pain I am experiencing. It is like the inside of my back, arm, whatever is inflamed and throwing pain signals. The gamapentin helps and has definitely helped with the hand shaking (i've been dealing with that for several months) so that is good.

    Less good is the distinct impression that I am once again becoming lumpy. My right cervical zone of the neck seems to be particularly so which is right where the biggest DLBCL tumor was before the R-CHOP and BEAM. Its probably all in my mind so I will monitor it and wait for the Day 90 CT scan. Today is Day 42 so things will be showing pretty well if my perception is based in reality instead of just in my mind, lol.

    Good health,

    kermica

    Hi everyone,

    I haven't been online for a while because … I have nothing to say! Kermica, I have been following your "transplant adventures" since the very beginning and I can't believe what you've been through. I'm so happy it is over. As for lumps - hmmm… I have been full of lumps since this bloody (no pun…) thing began - they comme and go - and I have learned to manage my anxiety attacks a little… with you guy's help mostly. Ask Po, he's still recovering...

    But I've also been reading all the answers and encouragements people are sending you; everyone seems knowledgeable about lymphoma, about treatments, about side effects, about medications to deal with most of them etc.. They have all been through what you've been through and they seem better equipped to help you. I've only been through my first round of chemo last year - bendamustine and rituxan and that's it.

    Indeed, I have been following the conversations you have been having with other people, hopping something would be said where I could join in and contribute. But nothing. Everything is completely above my head. So I decided to write a few lines coming from my heart: I have been thinking of you and praying for you many times. I sincerely think you will make it. If you've managed to make it through the past decade you can make it through anything.


    My very best wishes and I'll keep reading; I might be able to join a conversation someday,


    Marie


    P.S. By the way, my hémato-onc strongly believes in transplants.

  8. #2448
    Administrator Top User Kermica's Avatar
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    I have been thinking of you and praying for you many times. I sincerely think you will make it. If you've managed to make it through the past decade you can make it through anything.
    Hi Marie, and thank you for your kind words, prayers and good thoughts. Don't think you can't make a contribution just because you haven't had as many treatments as some of us, just see your post above to validate that!

    As for getting through this, I believe I will recover from the transplant as much as one can. Will I be the same physical person as I was before it started - who knows? But I fully intend to survive it and, at Day 47, things seem to be going in the right direction for that intention to become true. Time will tell and nature will rule , of course, but I feel good about my chances.

    As to the cancer, I was told at Dana Farber that it will be about two years before I can stop looking over my shoulder for the DLBCL. The follicular can recur at any time and we will deal with it should it do so. The lumps and bumps that do develop are to be noted and then ignored, other than reporting them at checkups. The Day 90 san will tell the story thus far and the Day 180 scan will give us another chapter then. I am cautiously optimistic about it all but, knowing that I have recurred or relapsed six times so far, it is somewhat difficult to be the picture of blind optimism as I go along this path.

    Cautiously optimistic with a big dollop of realism - yes. Blindly optimistic - no. Sunk into a pool of pessimism - no. That is how it will be, it is the best I can muster at this point.

    Be well,

    kermica
    When the world says, "Give up," Hope whispers, "Try it one more time."
    ~Author Unknown

    Age 67
    Follicular lymphoma diagnosed August 08, Stage 1
    2 cycles (20 treatments each) localized radiation to tumor sites. Remission confirmed July 09
    Restaged to Stage 3 May 2010
    Recurrence confirmed May 2010 - Watch and Wait commenced - multiple scans with minimal progression.
    Cutaneous Squamous Cell Carcinoma diagnosed September 2012. Mohs surgical excision 09/2012. Successful, clean edges all around.
    Significant progression detected in PET scan - December 2012
    Biopsy to check for transformation 1/18/2013 - negative for that but full of lymphoma, of course.
    July 2013 - Rescan due to progression shows one tumor (among many) very suspect for transformation, another biopsy 8/12/13.
    August 2013 - No evidence of transformation, 6 courses of B+R commence 8/29 due to "extensive, systemic disease".
    February 2014 - Diagnostic PET scan states: Negative PET scan. Previous noted hypermetabolic cervical, axillary, iliac and inguinal lymphadenopathy has resolved. Doctor confirms full remission.
    June 2014 - started 2 year maintenance Rituxan, 1 infusion every 3 months. Doctor confirms lump under right arm are "suspicious" for recurrent disease, deferring scans for now.
    February 2015 - Doc and I agreed to stop R maintenance as it is depressing my immune system too much.
    June 2015 - Confirm that the beast is back by physical exam, will scan in August after esophageal issues settle down so we can get a clear view.
    August 2015 - physical exam in error, PET/CT shows no evidence of disease. Remission continues well into second year!
    December 2015 - Cardiologist tells me I have plaque buildup growing at an alarming rate. Stent or bypass down the road but not yet...
    March 2016 - new tumor below the jaw so remission is over. Back to active surveillance until treatment is needed.
    June 2016 - C/T scan indicates presence of multiple lesions in iliac chain.
    August 2016 - PET/CT shows multiple areas of lymphoma as expected plus new areas of concern in bowel.
    January 2017 - C/T scan shows significant progression in cervical and inguinal lymph chains, largest tumor is impacting hearing, measures 2.1x4.6 cm. 4 to 8 cycles of R-CVP, 1x3weeks to commence 2/6/17.
    April 2017 - Mid treatment scan shows about 1/3 reduction in multiple tumors. Also shows abdominal aortic aneurysm with peripheral thrombus. Cardiologist changed meds, spoke of need for surgical repair down the road.
    September 2017 - finished 10 rounds of R-CP, V was stopped due to neuropathy in feet. No further treatment planned at this time, at least 10 tumors can be felt which seem to be growing again.
    December 2017 - Biopsy of external iliac node with SUV of 13.1 shows no transformation! However, the FL grade is now 3A instead of Gr 1-2. Will start indefinite protocol using Copanlisib, one of the new targeted therapies. I remain hopeful.
    March 2018 - Copanlisib failed, treatment stopped 3/28. New plan is to go to Dana Farber on 4/16 for case review and treatment recommendation.

    May 2018 - did not qualify for clinical trials at Dana Farber. Tumors need to get larger to be considered. On consultation w/Dr. Armand at DF and my onc, have decided to take a break from cancer treatments. Will have a biopsy of the mass in my sinus discovered in scan at DF and to get the aneurysm repaired as it has developed a potentially catastrophic penetrating ulcer. Surgery scheduled for 7/12.

    September 2018 - biopsy of mass in nose shows transformed DLBCL throughout. Assessing options for this negative development.

    October 2018 - started 6 to 8 cycles of R-CHOP. Goal is to get to full remission to open up other options.

    February/March 2019 - PET shows four hot spots following R-CHOP. referred to Dana Farber for stem cell transplant. Pre testing all good, accepted for Auto Transplant. Will begin inpatient process about April 1.

  9. #2449
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    Quote Originally Posted by Kermica View Post
    Hi Marie, and thank you for your kind words, prayers and good thoughts. Don't think you can't make a contribution just because you haven't had as many treatments as some of us, just see your post above to validate that!

    As for getting through this, I believe I will recover from the transplant as much as one can. Will I be the same physical person as I was before it started - who knows? But I fully intend to survive it and, at Day 47, things seem to be going in the right direction for that intention to become true. Time will tell and nature will rule , of course, but I feel good about my chances.

    As to the cancer, I was told at Dana Farber that it will be about two years before I can stop looking over my shoulder for the DLBCL. The follicular can recur at any time and we will deal with it should it do so. The lumps and bumps that do develop are to be noted and then ignored, other than reporting them at checkups. The Day 90 san will tell the story thus far and the Day 180 scan will give us another chapter then. I am cautiously optimistic about it all but, knowing that I have recurred or relapsed six times so far, it is somewhat difficult to be the picture of blind optimism as I go along this path.

    Cautiously optimistic with a big dollop of realism - yes. Blindly optimistic - no. Sunk into a pool of pessimism - no. That is how it will be, it is the best I can muster at this point.

    Be well,

    kermica

    And what if you were a better physical person than you were before it started? Your illness might have kept you from being just that. With the illness gone… who knows?

    Have a great weekend,

    Marie

  10. #2450
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    Jan 2015
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    Happy Father's Day Richard! I hope today finds you feeling well and able to enjoy the day. You mentioned the two years of looking over your shoulder - I hope it goes as fast for you as it did for my brother. I still can't believe it's been 3 years since his allo. You have so many supporters and you have an inner strength and desire to live. These will serve you well!

 

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