Hi everyone I'm new here.
I was diagnosed with low grade non Hodgkin's lymphoma in 2018 and had radiotherapy on a lump under my chin that was like a strange double chin. Then again this year I had radiotherapy near my thyroid. My disease is strange in that it is always in the fatty bit under my skin. Sadly as soon as I finished radiotherapy I found another lump on my stomach and the PET showed two more so I am starting B&R on the 5th of January.
I'm gutted because I was about to run a marathon and then ultramarathon pre radiotherapy this year and it has also caused me a massively underactive thyroid.
I'm ready to kick this for a good few years and get back to some adventures. What are people's experiences of B&R? I'm hoping to keep working from home for the most part.
Thanks
Hi Teri123and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups. I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low Grade NHL (CTCL) eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ may be different I do appreciate the challenges of this journey rather well.
I have had Rituximab but not Bendamustine as part of my R-EPOCH back in 2013/2014. Over my 6 cycles (5 nights/6 days each cycle) I had over 750 hrs of treatment and did ok. with it all...... and this is a very strong treatment.
There are a good number of members who have been on B&R so let's look for them to pick up on your post.
You can also use the Site Search Tool near the top, put in B&R and/or Rituximab and Bendamustine in the tool then select 'Anywhere' and this will bring up all the older posts and as always you can hit reply and see if the members are still using the site.
Side Effects of Treatments can be so different between everyone. My best advice is don't waste time looking for issues as they may not come along but the one thing you have to look out for it the Risk of infection
Always around to help more or just to chat
Hi Mike
I read your story and have seen lots of your helpful posts. Thanks so much for taking the time to reply. I'm pretty brave around most things like pain and fatigue having managed them through the radiotherapy but nausea is my cryptonite so I'll be after lots of meds to avoid as much as poss :-)
I was only sick once during my main 2 years treatment and that was on the very last bag of chemo just before my second Stem Cell Transplant…… but this drug is one of the strongest chemos you can get.
The anti-sickens meds that are available are very effective. We had to change meds a few times over my treatment as the effectiveness sometimes wore off but there are lots to use - do not suffer in silence…… you can do this
I found B&R not too bad as chemo goes. I had nausea and got a change of anti nausea medication for it which helped. Apart from that it was fine and I got the all clear at the end of it. Good luck.
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