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Thread: Follicular Lymphoma for a while now

  1. #2381
    Administrator Top User Kermica's Avatar
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    Thanks everyone, once again!

    John, I am sure they will have ice chips or frozen pops along with other strategies for the mouth sores (or, I should say, I expect them to have them, lol).

    POGuy, my procedure is Auto so may be a bit different from yours. I will be outpatient for just the first 4-5 days during which harvesting occurs. I then go inpatient for the five day administration of BEAM, followed by the reinfusion of the stem cells. That day is considered "Day Zero" for regrowing the immune system. I then wil stay inpatient for a minimum of 14-21 days while the initial growth occurs. At that point, I will be released back to my home and my local oncology practice will take over for the next several months. I only have to return to DFCI if there are issues or for a standard three and six month checkup. The restrictions on foods and activities are fully in place on release and are gradually relaxed as my recovery continues.

    As to the hotel, my wife will be there alone after the first four days so we picked it on the basis of having the services she values in this situation - in house laundry, shuttle to DFCI, kitchen in room, etc...easy to walk on the nice days, easy to not walk on the not nice days.

    Thanks again to all!

    Good health,

    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.

  2. #2382
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    will be interesting to see if you are discharged before the 14 days if your neutrophil count comes up quickly, that's what happens in the UK think its once it hits 1 and if everything else is ok then its off home, the other bit of advice if its not been shared, (as I lose track sometimes) is be aware a loose bowel for a period of time after discharge can be an issue, I know a few who have experienced this unfortunate effect.

    John
    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.

  3. #2383
    Hey Kerm,

    Was just checking in and see you are joining Team Transplant. I did both auto and allo, and honestly didn't find a whole lot of difference. John's advice re the ice chips is golden when they do the Melphalon (sp?). I was in patient a total of 23 days....or about 17 post day 0. Sounds like your time table is about the same. My only advice is to try to get in a walk every day if you can....when you get the Neupogen shots before harvest, I think there is a combo of OTC stuff they often recommend, which includes claritan and some other stuff, to help with the bone pain the nuepogen will cause. Ask about that. When I had all the shots pre-Harvest, my hips really hurt a bunch from the shots doing their magic.

    Otherwise, good luck with this. You'll be back to your old self in no time!

    David
    67 yrs old
    March 6, 2012: Diagnosed Anaplastic Large (T-) Cell Lymphoma, Stage 1 (ALK-)
    3 rounds of CHOP unsuccessful.
    Beginning mid-June, 2012, received 6 cycles of Brentuximab at Huntsman Cancer Institute, University of Utah. Autologous bone marrow transplant in November of 2012.
    17 radiation treatments for "consolidation" purposes between Dec. 26 and Jan.17.
    100 day post BMT check-up (2/26/13): NED. Pet scan on 7/10/13: Still NED.
    One year post transplant check-up: Still fine; NED.
    18month post-translant scans, etc. All fine, save a bit of arthritis.
    11/14/14: 24 month post transplant check-up--still NED.
    5/15/15: No NED this time. Relapse confirmed/ started every 3 week brentuximab
    Allo transplant in Feb 2016.
    100 day post transplant scans in June 2016 fine.
    3 yr. post SCT check up: all fine, no issues.

  4. #2384
    Super Moderator Top User po18guy's Avatar
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    At SCCA, it is quite different, but I was scheduled for an outpatient transplant if you can believe that. When I received the cells, DW and I simply walked to the apartment and I sat and pondered. And it worked for a fgew days until my body noted that I had zero neutrophils and a neutropenic fever arrived. Then it was 14 days in confinement until the stem cells engrafted and produced an increasing number of neutrophils for three days in a row.

  5. #2385
    Administrator Top User Kermica's Avatar
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    Thanks to all. John, I had heard about the diarrehea, Dana Farber provided me with a really comprehensive "patient's manual" of what to expect before, during and after the transplant and that was on the list (as were the ice chips for the mouth issues). As a result, I feel better prepared for this adventure than for anything that has come before now. That said, please keep that input coming as it validates what the pros are telling me, at a minimum.

    POGuy, my oncologist here initially proposed outpatient through he Albany Stem Cell Institute but Medicaid shot it down. They insist on an inpatient procedure and will not pay for the transplant if done outpatient. At first, I was disappointed in their decision since it meant an extended stay away from home (which will be hard on my wife when I go inpatient after the harvest) but, after reflection, I realize that I am almost certainly better served at a world class institution like DFCI who perform about 300 transplants of each type per year.

    Now, for the next challenge. I had the required dental work done yesterday (two lower molars on each side removed). The right side seems to be healing just fine but the left is very swollen and tender. I am giving it until the morning and then calling the dentist back. My fear, of course, is that I have a developing infection. I did have a CBC done on Monday as a precaution and the numbers were good except for the platelets. They were at 71 which I was told was okay for dental, not for medical procedures. Of course, that would have presented a coagulation issuee not infection so I am not sure what is going on there.

    Good health,

    kermica

  6. #2386
    Super Moderator Top User po18guy's Avatar
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    One wonders just how much damage must be inflicted in order to heal you. It seems that they place reason and logic in a blender and just go with whatever pours out.

  7. #2387
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    the level of prep does seem outstanding which is good as it means no surprises, people have shared their pre stc decision discussion and they do always seem thorough. Most transplant patients are inpatients in the UK with the exception of one of the London hospitals where they have an outpatient base where patients live for a few weeks. its always interesting to see the differences and understand why approaches are taken.
    hope the gums settle and no need to make that call

    John
    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.

  8. #2388
    Administrator Top User Kermica's Avatar
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    Well, I gave it a week instead of a day, lol, but the irritation turned out to be a suture that didn't dissolve. It was causing the irritation and inflammation. I went in this morning and the dentist pulled it for me. No signs of infection and things are settling down nicely now that I finally got it out of me.

    Granix shots start on Friday so here we go...

  9. #2389
    Administrator Top User lisa1962's Avatar
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    K,

    No infection, that's good news . Will be thinking of you as you move forward with the transplant

    Lisa

  10. #2390
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    good news, do keep us updated as and when you can
    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.

 

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