CD8 T Cell Lymphoma in skin tissue and muscle

Diagnosed Nov 15 with above without suffering from any of the normal symptons, had 6 courses of CHOP treatment, finished Mar 16. Scan revealed I was in complete remission. Had to undergo stem cell transplant in May/Jun 16. Didn't suffer some of the side effects but wouldn't wish on my worst enemy. Further scan revealed completely in the clear and now due for my first check up in Feb 17. Also, now back to playing squash but not yet to my previous standard. I understand cd8 T cell lymphoma is very rare. Has anybody else suffered from this?

5 Replies

  • I dont have my full diagnosis yet, still have a PET to go get results Jan 24th.

    I have Anaplastic Large Cell Lymphoma T cell. I have maybe a dozen lesions and they are hoping it is just cutaneous.

    I'm happy to read successful outcomes.

    How did you react to the CHOP as that is what they expect I will be doing? Side effects etc?

  • Hi

    I didn't really react to receiving CHOP. Each session only lasted 45 mins. Approx 1 hr after arriving back home from chemo 1, my body was shaking for 20 mins and then it subsided. The nurse said eat some food when you get home which I soon brought up. On subsequent chemo sessions, I ate before I went to Christies and then didn't eat again for approx 6 hours afterwards. I was never sick again after a chemo session. My plan worked for me.

    The side effect I did receive was that the chemo considerably reduced my neutrophil count to the extent I suffered infections ( both of them hospitalised me) after the first 2 sessions. For chemo 3,4,5 and 6 the amount of chemo was reduced by 25 per cent and had no further problems. I actually drove to and back from Christies on my own for the remaining 4 sessions. Had a sick bowel on the passenger seat just in case!

    My neutrophil count, (currently at 1.6 despite receiving several growth factors) after the stem cell transplant is slowly recovering. A normal count is from 2.75.


  • Hi

    I had LEAM conditioning which I was told is 50 times stronger than the original CHOP treatment to get me to remission.If you Google LEAM conditioning there is a document posted by Christies Hospital which explains everything except that the fatality rates are upto 5 per cent not what is shown in the document. I have mentioned this error to them but still not yet amended. Luckily I provided my own stem cells which reduces the risk.

    I was warned that from my mouth to my anus would be ripped out and my consultant was right. For 8 days, I vomitted some yellow fluid which I was told is from the lining of my stomach and also from the preservative when your stem cells are put back into your body. Couldn't eat or drink because of the state of my stomach and was fed by iv for a few days When you start eating, your taste buds are affected and even now, I still can't eat a ripe banana. The worse effect is the constant diarrhoea caused by the Melphalan. Even now my bowels are not quite 100 per cent. Didn't feel any pain just tiredness because of the effect of the chemo and not capable of eating properly. Also it was difficult taking all the medication tablets because of the state of my stomach. I discussed this with the ward doctor and his solution was to give me another tablet to counteract the effects of all tablets I was taking!!!!!!!!

    Having a positive attitude helps you get through. If you want to discuss in any further detail please let me know.


  • Scheduled for stem cell transplant what was so bad about it?

  • I'm now waiting on a bone marrow transplant ,4 out of the 7 siblings I have are going to get tested to see if they are doners Because of my age, almost 67, I can only go with siblings... I've had numerous other chemo, but they haven't worked . I'm nervous but have been told it's my only option now. Anyone else out there that can share about the transplant?

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