Rituximab withdrawn

Ps. Sorry about 'apparently' twice. 

Hi again seasidepeter, sorry to hear this challenge and have no experience I can bring to the table. It's interesting you saying about your age for Stem Cell Transplant.... looking back at your first post I now make you 77 year young..... Just a few months back I was talking to someone who is 77 going on 78 and is going into a Auto SCT. 

You could put your question to our Cancer Nurse Team in our Ask an Expert section but you have to allow a few working days for a reply so may not be that useful.

I did find THIS info on the Lymphoma Action Site..... but you may also want to call the Lymphoma Action helpline on 0808 808 5555 where you can have a chat with Sharon or Nic and see if they have any info on their database  - open every week day from 10 till 3 ((Hugs))

Thanks, Mike - helpful as always. My reading on the withdrawal of rituximab maintenance is a bit depressing in terms of time - but I'll do as you suggest.. To be honest, I didn't know about either of those resources: so thank you for that.

Though it sort of begs the question - why didn't I? (From the traffic on this site it seems that question won't bother many - but those it does, it will bother a lot!)

Hi, I'm new to the group and the site. I have just turned 73 and have been in remission from MCL for about 3.5 years. I suffered badly from recurring chest infections during my Rituximab maintenance program so it was deemed better to terminate it after 4 months. The number of infections have gradually subsided but I've had Covid twice and I think this has left me with long Covid as all my follow-up blood tests have been fine as to the MCL problem. ( My most recent tests were a month ago )

Hi Njorek and welcome to this little corner of the Mac Community.

Good to hear that your infection risks has been reduced after coming off the rituximab - long may it continue

Thanks Mike... I'm just hoping the MCL stays away as well. Thanks for your reply.

Regards

Del

Keeping my fingers crossed for you.

I don’t have MCL but a rather rare Skin NHL (CTCL) first diagnosed way back in 1999….. I have had lots of treatments over these years but now over 5 years in remission and doing great (hit my community name to see my story) 

Hello... Sorry to meet you here. In the spirit of sharing: I'm 77, and have been in remission for exactly a year.

My rituximab was stopped a few months ago as my bloods plummeted after every session. Since then my neutrophils etc have remained decent, and a ct scan last month showed no mcl movement.

Cue much joy and relief.. not That much, as my treatment triggered extremely painful arthritis, which limits movement somewhat. 

Like you, I live a divided life. On one side I'm so happy the mcl has gone to sleep and I don't have a cricket ball where a spleen should be: on the other, I'm sad my active life has been reduced so much.

As Highlander has said here before: we just have to deal with the day and try to ignore the lurking mcl (I paraphrase!).

Anyway. Good luck, nil carborundum etc. Hope, like me, you get a bit if comfort from this organisation and contact with others similarly placed.