i have a slightly odd question. I finished my 6th round of R-EPOCH for NHLlate last July. It took a little while to fully recoup erase but I would say I have been at 90pc plus for all of this year. However this week I have had not been particularly well.
When describing my symptoms they sound and feel so similar to how I was during treatment (sore mouth, sense of taste off, nausea, aches and odd tingling in limbs, water retention and struggles sleeping even though I am exhausted) it’s led me to wonder how long somebody the drugs remain in the system and if there can be released subsequently.
My assumption is not as I had no warning in any of the literature and think it’s more likely I have a virus attacking me in some of the ways I am still a bit weak but wondered if anyone had similar experience or advice? My mouth and sense of taste in particular is really starting to both me!
Hi Jag80 and welcome to the Online Community, although I am so sorry to see the circumstance that brought you here.
I am Mike Thehighlander and I am dropping in past from our Non-Hodgkin lymphoma that I see you have joined.
I also had R-EPOCH and all you are experiencing I can say yes to. The post treatment recovery will take time and far longer than you would hope.
You may want to come over to the NHL Forum and post there as well as we do have folks hanging around that can help.
You May also want to have a look at this great paper as it does answer some of the post treatment questions.
Always around to help out on this andbthe NHL Forum.
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
Thank you so much for the speedy reply - I have been a lurker here and over at NHL threads for quite a while!
I appreciate the response - I was starting to feel like I was going a bit loopy. I have been incredibly lucky and been able to pick up life again through this year after my all clear so this week has knocked me a bit. I feel so like I’d did a year ago as I came out of hospital.
Document was really useful I a starting to realise I did not treat the end of treatment and what next with quite the same focus of finishing out as I ddI treatment itself.
You will see from my profile that my R-EPOCH was used to get me ready for two Stem Cell Transplants so my post treatment recovery has been a good 2+ years so being kind to yourself is so important.
We are around to help out.
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