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Thread: CHOP Experience, to an auto SCT for AITL / PTCL

  1. #21
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    debpower, Thanks for your encouraging post. I wish your brother continued good health! Given the frequent reoccurrence after auto I asked about just going for a allo. Did not get much encouragement on that from the oncologist! Out of curiosity, how would you compare the transplant experience at MSK vs the experience where the auto was done and how far did you need to travel. Part of our reason to visit MSK was to consider having the auto done there. They encouraged us to have it done locally as they know the local team and facility well and were more comfortable with it than I have been.
    Last edited by jwessel; 07-21-2019 at 02:15 PM.

  2. #22
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    My brother had his auto in No Va with his first oncology doctor. Believe it or not, it was not done in the hospital, but at their offices where they had several "suites" that you could get the treatment done during the day, and then was allowed to go home at night. I believe timing is everything. AFter he finished his pre-auto chemo leading up to the auto, there was a delay of about a week to ten days ( I don't remember why). We believe the reason that he relapsed so quickly after the auto was due to this delay. We believe, though cannot prove, that the cancer had already started to return, thus jeopardizing the outcome. There are several people on this forum that have had autos and are still in remission after a couple of years. After the auto failed, we traveled to MSK to visit with Dr. Horwitz, who gave him hope for the first time. An allo was discussed, but was told to wait a little bit to see how he did on Romedepsin. This drug did the trick, and when he was at his healthiest, Dr. Horwitz said now is the time for the allo - don't wait. So my brother and his wife made arrangements to go to NY to have the allo - a match was found from an unrelated donor - and the plan was for my sister in law to rent an apartment in NY while he was hospitalized for the allo, and then they would both move to the Hope House to wait out the 100 days after transplant before returning to Virginia. When they got to NY to start the testing and chemo for the allo, it was discovered that my brother had acquired a B cell lymphoma. The allo was postponed while he underwent a trial under Dr. Horwitz. My brother and his wife ended up spending about 7-8 months in NY - most of which was in a rental, and a short time at the Hope House after transplant. Fortunately for him, he could afford this. He found the doctors, nurses, care to be outstanding at MSK. After he was discharged from the Hope House and was able to return home, care was continued through a transplant doctor at Georgetown Hospital in DC that worked together with the transplant doctor from MSK. My brother saw the Georgetown doc more frequently, but also had to take several trips up to MSK for followup, usually staying over night in a hotel. I will say that his local doctor, after the auto failed, and the cancer returned, said " i told you this was an insidious cancer- there is nothing I can do" and "washed his hands and gave up". No other doctor that he has seen since has given up and had such an attitude. Good luck with all your continuing treatment and your decisions about transplants. It is definitely difficult trying to figure out which way to go. I think if you have MSK consulting, that you can't go wrong.

  3. #23
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    CHOP Cycle 6 Done!

    CHOP cycle 6 done! Last Prednisone taken yesterday. Looking forward to testing and results to show if this has had any benefit, and then auto SCT here we come. CHOP cycles 4-6 have continued to be totally unremarkable. Everything has fallen into a repeatable pattern except for an increasing bite of neuropathy at the fingertips and toes.

    Some notes from along the way for others facing CHOP:

    1) CHOP effects should be mildly progressive, look for other explanations if there are dramatic changes or issues,
    2) Each person will react differently, but you may be able to manage most of the side effects without pharmaceuticals - I took one Zofran because I thought I might be getting nauseous, but more out of curiosity, probably did not need it. I was able to manage bowel consistency issues with high fiber foods like German brick bread or oatmeal and prunes, etc.
    3) Force yourself to walk. Fortunately my spouse insisted on it even when I did not want to. Usually 2nd day after infusion we were out walking one mile and by the third week of each cycle were doing daily three mile walks. It seemed to increase circulation in the feet and ankles and reduce neuropathy as a result. During Cycle 5 I convinced my spouse that I would be strong enough to take a little trip and we walked 3+ miles at altitude in Aspen, CO. (elevation 8,000ft roughly 2,500m). Use hiking poles or a staff!
    4) Compression socks during the day helped me ward off feet and leg cramps at knight. Cramping started around Cycle 3 and initially I used pickle juice to get them to stop, but the compression socks worked to ward off the nightly leg cramps.
    5) Explore foods, you will find plenty to get you through this, and compliment them with condiments. When my tastes changed I went through the cupboard and fridge tasting all of the condiments and toppings to see which ones were still appealing and then used them liberally.
    6) Do not surrender your coffee casually! You might have to find a less acidic blend. 5am always finds me grinding, blooming, and brewing a strong pot of coffee to start the day. While the taste changed slightly it was still great to look forward to. I use a blend of beans sent from a small batch roaster in Seattle, however, when those are not available we find Gevalia coffee an approximation. Two other people going through chemo also mentioned that this was the one brand they could continue to use.
    7) Use desperate measures if necessary. When I lost 10 pounds early on due to the pneumonia effects I decided to resort to daily lunches of the two most addictive and calorie dense foods I could think of, pepperoni pizza and Oreos Extra Stuff! Weight loss stopped. I did manage to horrify my mostly vegetarian and sugar free spouse.
    8) Throat sores started after Cycle 3. We were able to cure these by drinking a hot cup of a blend of 1tsp of Manuka (UMF 15+) Honey and 1tsp of cinnamon. Pain subsided immediately and ulcers were healed in 4 days. From then on, a nightly cup before bed warded off any return. I guess these can also be cured with a 3 chemical gargle from the pharmacist or perhaps baking soda, but why not try honey?
    9) Try to make the most of the time. Who knows what lies ahead? Accept that there will be a treatment week where things will be a struggle, a recovery week when things will begin looking up, and a strong week just before the next treatment. Take advantage of that week to enjoy life and give yourself as much freedom to do things as you feel comfortable.
    Last edited by jwessel; 07-19-2019 at 02:26 PM.

  4. #24
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    Path Forward Gets Complicated

    PET Scan results after 6 CHOP cycles show AITL / PTCL lymphoma in complete remission. The wee beasties don't seem to like chemicals! Level of remission was such that no additional chemo was scheduled between the end of CHOP and the transplant admission. Stem Cell Transplant schedules were finalized and set to move forward.

    At the signoff meeting with my Hematologist / Oncologist I raised a question about a node in my lungs which had grown between my midpoint scan and the final PET scan. It evidently was not seen or noted in any of my earlier scans. Although the PET Results highlighed the concern, no one seemed to be reacting to it. My question trigger concern that a non chemo responsive tumor or an infection was present. All of the transplant schedules have been cancelled until it is determined what is going on in my lung. Evidently with this active node, of unknow cause, there is too much risk of a failed transplant.

    Yesterday a needle biopsy was attempted. It was aborted due to the risk of a collapsed lung from air that started escaping from the lung. It will take at least a week for the lung to heal enough to have a second go at it. There is significant concern that a second attempt will also fail, as the node is tucked away next to the spine in a difficult to reach position. At this point I am waiting to find out what the next steps might be. Not sure what these might include.

    The full population of possibilities might include: 1) plunge ahead with the transplant and trust that the node won't cause problems and can be cleaned up with radiation afterwards; 2) blast the node with radiation before transplant and see if it goes away; 3) wait and try another needle biopsy and hope for better success; 4) do a more invasive scope or surgical biopsy which will require a longer healing time before transplant is rescheduled. Each of these options affect moving forward with a transplant because the half life of complete remission can be short and the reoccurence risk after transplant increases.

    Any thoughts would be helpful!

  5. #25
    Super Moderator Top User po18guy's Avatar
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    There are no lymph nodes there, so it must be a lung nodule - I have had many observed since 2008. All of them have resolved on their own. Having just cleared up 5 weeks of pneumonia, I am guessing that I might have several in my lower left lobe. Normally, they are simply monitored. The chance of it being AITL is remote, since if it responds to treatment here, it will also respond there - especially since the lungs have such a plentiful blood (i.e. chemo) flow.

  6. #26
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    Thanks! That is encouraging. Yes, it would seem to be a lung nodule. I had two lung spots noted. The one which caused concern was growing. It is a little frustrating that two weeks went by and no one responded to the PET scan results until it was made available to me and I started asking questions. From phone discussions on Friday it appears there is no willingness to take any action until someone digs this thing out and admires it. Unfortunately I have a clock ticking in the background. I am meeting with a Thoracic surgeon on Tuesday. Hopefully there is a way of getting to this thing without creating too much trauma and delay. If it is a non chemo responsive cancer I certainly don't want to go through a failed transplant.

  7. #27
    Super Moderator Top User po18guy's Avatar
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    Since lung nodules are so common, and do take some time to rersolve, I would think that monitoring its size would be appropirate for the tme being. Perhaps it could be viewed as a scab over a wound in your lung.

    If the "spot" was in your central nervous system, that would be quite another story.

  8. #28
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    That seems reasonable.

    Here is the text from the PET scan which caused me to raise the question. "Slightly increased size of an indeterminate mildly hypermetabolic subpleural 2.8 x 2.5 cm soft tissue nodule medial basilar RIGHT lower lobe and an adjacent 0.5 cm subpleural nodule, without significant FDG avidity"

    It seems like something about the size, the growth since the last scan, the fact that they were not noted on the first scan, that one is hypermetabolic, and that there is more than one, has raised a level of concern to determine what is going on before anything else is done.

    On a housekeeping note. Since this tread now contains much more information than just the CHOP Experience I changed the title of the first post to be more descriptive of the content. I had hoped changing the title of the first post would change the title of the tread as well. If you could help me fix that, or point me to the special powers needed update the thread title, it would be deeply appreciated.

  9. #29
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    Hi done that for you as it was easier than explaining, if its wrong tell me how you would like it wording

    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.

  10. #30
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    Perfect! Thanks!

 

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