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Non Hodgkin's Lymphoma Friends
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Here we go again!

I was 5 years in remission after several chemo regimens, beginning back in 2008. Two years ago I began taking idelalisib as part of a trial. My life returned to normal until about two months ago when my WBC and lymphocyte counts began to climb. Now I've reached a crossroads again. I'll be stopping the idelalisib and looking for another treatment while I try to maintain my remission with sleep, exercise, diet and lots of sunshine. On the good side, all those ugly side effects that threatened from taking the drug will no longer be hanging over me. Loose bowels were an issue so there's comfort in knowing that problem might end. I'll be on "wait and see" which is always stressful. More chemo is not in the cards so I soon may be facing my own mortality.

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Stay positive and enjoy everyday. We are all going to die some day. Revel in simple pleasures like no more side effects from the drug.


Hi R16728

Sorry to hear that the chemo didn't work for you. For me, the worst part of watch and wait is the the mental part. Our emotional responses to our situation have such an effect on our health, and getting into a state of total acceptance of whatever comes along would be the ideal but easier said than done.

All the strategies you mention are vital and I believe the exercise is key because it provides stress relief as well.

Hopefully your blood counts will improve as your body recovers from the inevitable side effects of the chemo. Hang in there - we are all with you in this. Let us know how your next blood tests go. Even a small improvement would be something to aim for.

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Nice to have someone who understands the stresses we face. Thank you.

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