Newly diagnosed Mantle Cell Lymphoma

Hi MJF

Thanks for that, it is very interesting to hear about your trial, and I’m glad to hear that you haven’t had too many side effects. 

I had some B symptoms last summer (drenching night sweats, fever and a rash), but they have gone now by themselves so I don’t know if that would make me an A or a B?! I’ll ask at clinic. 

I will let you know how my trial goes, first step after signing consent and pre-tests will be random assignment to treatment or no treatment grouping. 

Best of luck for next month.

Helen / Inthewoods

Thank you very much for all the advice, Mike! I read it and will read it again...:-). You had long days of treatment at that time. I really hope that my overnight stays in the coming months will be shorter...

Update on my MCL stage 4B, high MIPI, TP53 mutations:

Had now 2 cycles of R-CHOP in Harrogate (1 day) and 1 R-DHAP in Leeds (3 days stay). To come is a bone marrow biopsy. Not looking forward to it....anyone has had the experience? Also coming up is stem cell harvesting. Not for a transplant as it won't help me but more in case I need it later on to support my blood. End of this month the 4th treatment with R-DHAP and after that a PET-scan to see if any progress is made. Will never can get rid of MCL and after the 6 cycles maintenance with Ritux is recommended although I read that a BTK inhabitor gives better results.

Still feeling tired, sleeping a lot (approx 10 hours a day) but trying to stay optimistic!

Hi Bullit

I was diagnosed December 2023 and had 14 months of watch and wait and then started a trial whe my MCL had advanced to Stage 3AS (A for no B symptoms, S for cancer present in Spleen) 

The trial I am on is called Traverse which  is for patients who have not had other treatments. I am being treated at Royal Marsden.

It is a combination of Acalabritinib (BTK Inhibitor) , Venetoclax (BCL -2 Inhibitor) and Rituximab (Targeted antibody therapy).

So far I have not had too many of the possible side effects and the cancer is significantly reduced – I find out next month at the end of 13 months if I am cancer free and if so, 50% of us keep taking the Acalabrutinib for up to 3 years or so and 50% of us take nothing at all, but remain under observation. ( If cancer comes back in latter group, they put you back on Aclabrutinib).

The hospital wont tell me how the others on the trial are doing which is a bit frustrating but otherwise I am happy with progress but as always he real test is how long if successful after this first phase, I can remain in remission.

Preparing your body for that with lifestyle changes, diet, etc will I think be the key to giving the best chance !

 I had a bone marrow biopsy at the start of my trail and honestly its painless - you feel just a bit of pressure but that was all for me.

Stay positive, eat healthily and enjoy the times you feel well.

MJF

Hi Bullit, 

I had a bone marrow biopsy during diagnosis - for mine they took samples of both liquid and solid bone marrow. I believe for some people they only require the liquid part.

A local anaesthetic was applied, and gas & air was available if I wanted it. I found the procedure was mildly uncomfortable with a tugging sensation in my hip, and I did not need to use the gas & air in the end. Afterwards, when the anaesthetic wore off, it was a bit uncomfortable, which lasted quite a long time, I could still feel it after several months - but it wasn’t very strong pain. 

I actually have another one coming up next week, as it is needed before I start my clinical trial (see earlier posts), and I volunteered for the trial, so the first one didn’t put me off!

Good luck with yours. 
Helen

Thank you Helen! Your message is very reassuring :-). Google gives 50% severe pain and 30% unbearable pain so, your experience is much, much better! I must learn to relax more!

Good luck with your second biopsy and good luck with your trial!

Han

Thanks Han!

Obviously this was only my experience. I found what really helped me through it was to focus on the thing I had control of during the procedure, which was my breathing. I concentrated as much as I could on doing the very best breaths, focusing on each one to steadily fill my lungs, then exhaling slowly and with control. I think this distracted my mind quite a lot! I recommend it as worth a try, if you are able to. 

Helen

Thanks for the tip, Helen! And yes, I will focus on belly breathing and hopefully, it will distract me :-).

But as always, women are tougher than men! :-)