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Thread: CHOP Experience

  1. #21
    Regular User
    Join Date
    Apr 2019
    Posts
    15
    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.
    63 years old.
    21 Jan 19 - Victorious Bikram 90 Min Hot Yoga!
    22 Jan 19 - Referred to ER for potential appendicitis, CT w/ contrast was negative for appendicitis but was informed I should see an oncologist ASAP, amused & annoyed
    25 Jan 19 - First visit with oncologist - first words, " I fear we are dealing with a serious form of Lymphoma, some which is not curable", PET Scan and Biopsy ordered, in denial
    14 Feb 19 - "B" symptoms debilitating, on Morphine top off with Extra Strength Tylenol, no longer in denial
    15 Feb 19 - Diagnosed Acute AITL - Stage 3B, 6 cycles CHOP and Auto SCT immediately following recommended, in shock
    01 Mar 19 - First CHOP cycle on way to SCT, resolved to see this thing through!

  2. #22
    Senior User
    Join Date
    Jan 2015
    Posts
    254
    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
    Regular User
    Join Date
    Apr 2019
    Posts
    15
    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.
    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; Yesterday at 04:21 PM.

 

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