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Thread: Follicular Lymphoma for a while now

  1. #2321
    Administrator Top User Kermica's Avatar
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    Thanks to all, as always.

    If that is so, then it is best to avoid transplant, if at all you can!
    Why do you say that, POGuy? I am curious...

    I got a call from my onc last evening. He told me that Medicare will not approve using the local stem cell institute for the SCT as they classify that as outpatient (I would live at home instead of having to setup temporary quarters near the hospital) and the system has no billing code to deal with that. Instead I will be traveling back to Dana Farber and seeing the head of lymphoma research who I met with last spring. The purpose is a SCT intake consultation but who knows what else he is working on these days. I guess I will be finding out. I expect that this will occur sometime in March since my diagnostic PET is scheduled for the 26th. Should be interesting.

    Good health,

    kermica

  2. #2322
    Super Moderator Top User po18guy's Avatar
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    It is probably all of the immune suppression that I have received and am receiving, combined with the JAK2 inhibitor. World-class fatigue. I have bursts of energy and must take advantage of those if I am to accomplish things.

  3. #2323
    Administrator Top User Kermica's Avatar
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    Work up and pre-procedure testing for my stem cell transplant at Dana Farber in Boston is scheduled for March 7th. Major changes coming to our house for the coming year or so as that is the time it takes to recover and I am very high risk for complications in the early months.

    Much to be done before the 7th including a full dental workup,a bone marrow biopsy, financial counseling, review of wills, coordination with my oncologist and Boston and much more. Once the "go" decision is made, even to qualify for the procedure, everything accelerates at breakneck speed.

    Good health,

    kermica

  4. #2324
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    A busy time ahead, hope it all goes to plan and the stress levels don't rise to much then its onwards and forwards to your "re-birth-day"
    NHL DLBC aggressive stage 4B advanced
    diagnosed april 09
    after 8 rchop and a couple of delays, in remission
    some long term side effects to manage post treatment
    some blips and investigations on the journey but now
    22nd oct 2014 discharged no more hospital visits


    we are all on a roller coaster ride, riding blind never knowing where the highs and lows are.

  5. #2325
    Super Moderator Top User po18guy's Avatar
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    An awful lot lies ahead, but there was no guarantee that you would awaken even this morning. We tend to stack up potential threats and concerns which never materialize. This is a time to live only in the present moment, to become "life myopic" as that present moment is all we possess. Love - that of those around us and of ourselves, is proved in such times.

    We hear so much about virtue and vice in this life. The primary virtues are faith, hope and love. If you enter into the transplant with these in your heart and mind - faith even in medical scenic, hope for a good outcome and that certain love which makes its home in your heart, no matter how the actual procedure goes - you will be well. You are in my prayers.

  6. #2326
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    Still following your progress with thoughts and prayers. It almost seems the decisions are more stressful than the illness itself. If you opt out of the SCT, what's left that might work in the event of another relapse? Bendamustine-Obinutuzumab?
    Age 55 at Diagnosis
    6/2017 - Fell off a ladder. Incidental finding
    7/2017 -CT shows "Innumerable" enlarged nodes up to 2.2cm in mesentery, retroperitoneal, mediastinum, SCV node. No symptoms blood work normal--including LDH.
    7/2017 - Biopsy confirms Lymphoma of Follicular center origin WHO 1-3a. Also some diffuse areas highly concerning for DLBCL.
    7/2017 - PET confirms Stage III. SUVs to 9.3. Bone marrow biopsy negative. Remain Stage III.
    8/2017 - Begin RCHOP 21. Neuts to zero after treatment. Neulasta moving fwd. Neuts rebound.
    10/2017 - Mid point CT shows treatment effective. RCHOP continues.
    11/30/17 - RCHOP concludes
    1/2018 - PET shows zero SUVs and complete response to treatment. Rituxan maintenance begins
    7/2018 - CT shows NED. New coronary artery calcification to be investigated.

  7. #2327
    Senior User Kimv's Avatar
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    Kermica, You are. True warrior. You are taking care of business and have friends for support. I think of you often and am sending big virtual hugs and positive thoughts your way. It is a blessing that you have the good folks at Dana Farber to take care of you. All the best, kim
    Oct. 27, 2015 diagnosed with angioimmunoblastic T cell lymphoma.
    December 2016 began choep chemotherapy-6 treatments 21 days apart.
    February 24 scan showed no evidence of disease!
    Continue choep chemotherapy treatments.
    APril 2016 returned to Stanford for high dose Cytoxan, removal of port, and insertion of Hicckman catheter.
    Neupogen injections daily to increase white blood cell counts.
    MAy 5, 2016 Apherisis.
    MAy 21, 2016 HIgh dose chemotherapy VP 16.
    MAy 24, 2016 High dose chemotherapy Cytoxan.
    MAy 26, 2016 Autologous Stem cell transplant.
    JUly 27, 2016 Scan shows no evidence of disease. Still In remission!
    October 31, 2016 Scan shows no evidence of disease...NED again!
    April 1, 2017 Still NED!

    love strong....live long❤️💜💚💛💙

  8. #2328
    Administrator Top User Kermica's Avatar
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    Thanks, everyone, I truly appreciate the kind words and good thoughts. Things continue apace. We have decided to add preplanning our funerals to the task list. In the past day or so, I have scheduled appointments with a urologist, the funeral director (friend), our attorney and the dentist. Still on the list are all the medical stuff that will flow like a river out of both my provider and Dana Farber as I will do as many of those tasks (BMB, Granix injections, any other tests they want locally if possible. Busy times, thanks again t all.

    Good health,

    Kermica

  9. #2329
    Administrator Top User lisa1962's Avatar
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    K,

    You certainly have a lot on your plate and being the organized individual, you are, not surprised you are putting your plans in order. I do not like that talk about funeral arrangements my friend but I certainly can understand the reasoning behind it.

    Prayers your way that everything will go smoothly, without difficulties and the desired affect will be achieved.

    Lisa

  10. #2330
    Super Moderator Top User po18guy's Avatar
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    Be careful driving to those appointment! In the US, 102 souls lose their lives each day in collisions.

 

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