Lasting side effects from bendamustine and rituximab

Hi Wrigley8064cc and a warm welcome to this corner of the Community although I am sorry to see you joining us and to hear about your challenges.

I am Mike and I help out around our various Lymphoma groups. 

I was officially diagnosed way back in 1999 at 44…with my first type of rare Low-grade non-Hodgkin lymphoma) (CTCL) eventually reaching Stage 4a in late 2013 when a second, also rare type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so I most definitely appreciate the challenges of this journey rather well.

I had over 600hrs of Rituximab but not Bendamustine……. along with a shed load of other drugs over my main 2 years treatment (late 2013 to late 2015) and your post treatment side-effects all sound rather normal…… the body is put through significant trauma and it can take far longer than you would like to recover…….

You are only a few months post treatment so you are in the early stages of recovery…… unfortunately you need to be a patient patient……. the main thing is make sure your team are aware of everything that is going on and where required they can help you out…… but the one thing they can’t do is speed up the recovery time.

Aches and pains are most likely down to muscle wastage and often nerve damage where you cancer was…… initially once you become more active the body fights back and it can be painful…… your stomach lining will have been stripped so this take some time to recover……. my eyes were hazy fir a good period of time and often had thumping headaches….. but you will get there.

My Consultant told me that going through the treatment process is like doing a boxing match and a marathon every day over the months of treatments and this was done without any training.

Think doing the London Marathon without any training and you had to finish it as your life depended on it……. this is the journey you have been on so it most likely will take much longer than you would think to get back to some normality.

Some folks are lucky and bounce back quickly post treatment but more than often folks take a considerable amount of time to recover.…..

What type of NHL were you diagnosed with?

Are you in the UK?

Always around to chat.

Thank you Mike with such a lovely welcome 

I was diagnosed with follicular non Hodgkin’s lymphoma stage 3 , grade 1

its just so frustrating. I don’t feel any better than in did in treatment 

also, i never  had itching prior to being  diagnosed 

around my 3rd or 4th treatment  n had a few weeks of the most intense itching I have ever had. It ffinally slowed down but most things suggested by my oncologist didn’t really help much 

he really did not know why it started…..

now about a month ago, I started getting itchy.  Certainly not like before but certainly feel it  with such good results I can not understand what would start it 

the same goes for the sweats, except prior to diagnosed t was over the top  I had month after of suffering with constant sweats  about 8 days after my first set of 2 treatments, the sweats vanished  now as the itching started so did my sweats  again not like before but certainly there 

Wish i could just wave  a wand and it be gone 

You have made me a little settled  on explaining that this nonsense could still

be early in the healing process 

as you say I guess this patient needs to be more patient