PMBCL

Hi Kokkee and welcome to the club that you never wanted to join. It sounds as though things are going really well for you so far. Congratulations on that. Although getting dosed up may feel a bit like getting punished for good behavior, I hope that you can see that as a win in that your body must be handling the chemo well. From what I've read, PMBCL has an excellent prognosis and you have every reason to expect a good outcome. In the meantime, my tip is try to stay as active as you can. Please do come back if you have specific issues or questions. Best of luck going forward

Sorry to hear that things have taken a bit of a downward turn. I, too, had white counts fall to below 0 on my first 3 rounds. Fortunately no neutropenic fever but I was absolutely obsessively neurotic about food and personal hygiene and maybe that helped. Also, it is standard practice in the US and I believe the UK to give a shot of a white cell boosting compound (Neulasta) within 72 hours of finishing a round of chemo. That usually brings the white count back up substantially. Did you have that? Perhaps the protocol there is to administer only on an as-needed basis rather than give to everyone? Hope that things get better for you and that you are able to go forward with your next round as scheduled

Apropos R-CHOP vs. R-EPOCH: I currently have a family member being treated for PMBCL. While there is continued discussion in the literature, DA-R-EPOCH still seems be the treatment of choice unless there are other medical issues. At least where she is; other facilities may have different protocols/criteria. Hang in there.

Treatment is like hiking across the country - hills and valleys. Yet, we are resilient creatures and we bounce back. That does not change the fact that the valleys do not feel good at all. There are so many distractions along the way, but always keep the goal - and the enemy - in mind. It took me seven regimens and fifteen drugs (four of them twice) to get me into my third remission with the first of three cancers. So, if I can do it, you can easily triumph over this.

While I can certainly understand where the sentiment comes from, I hope that you can remove any feeling of "shame" from your mind. We all did (or are doing) the best that we could under our particular circumstances. While I was fortunate not to have a fever, that does not mean that I did not struggle at the time. Glad that you are getting the white blood cell booster (Neulasta is only one of many brands) and hopefully that will get your counts back up. The 7-injection protocol may actually be more easily tolerated than the single shot approach. Be well.

I took DA- Epoch for my lymphoma, it was tough but I made it. It’s been 12 years ago.m

I lost my hair, my toenails and was really sick, but I made it. I had a wonderful doctor and she took good care of me. I was cancer free for many years now I have been diagnosed with follicular lymphoma. My first diagnosis was diffuse large cell B, it was aggressive and follicular is slow growing. I am on wait and watch so am not taking treatment right now and doing ok.