I have had bad news repeatedly since being diagnosed in 2021.
Follicular lymphoma, multiple relapses (after bendamustine/rituximab, R-CHOP, auto transplant, refract trial, and lenalidomide
The last trial the refract trial failed so I was told I could do the soundtrack b trial but due to my blood counts being low for weeks while on no current treatment I was told I couldn’t have it.
I am seriously considering death as a possibility at this point for the very first time. I have been incredibly unlucky and I would like to accept the reality if it is bad news.
Has anyone had the treatments mentioned above, relapsed each time then been refused a trial and still gone onto treatment that worked long enough for you to have a allo transplant? From what I have read it’s a serious situation at this point and I guess I just want some answers
We are so sorry to hear about your diagnosis and relapse after treatment. We can only imagine how difficult this time has been and must be for you.
If you want to talk things through with us, at any point, please don’t hesitate to call us on 0808 2080 888 to speak to one of our nurses over our free and confidential support line.
We hope others can share their experience with you on the forum, but do keep your treating team updated on how you coping and feeling as it’s important they’re aware so they know how best to support you.
Writing down questions to ask your team may be also useful. They may be able to give you more information about prognosis as well as further insight about treatment options.
Here at Blood Cancer UK, we also have a clinical trials support service. You can read more about this on our page Clinical Trials Support Service | Blood Cancer UK and can fill out a referral form if you would like to speak with a nurse from this team.
In case it can be useful for you, we also have a webpage on small things we can do to support our wellbeing during challenging times. It talks through where people can access further support should they like to - Blood cancer: mind and emotions | Blood Cancer UK.
Hi @JMearsso sorry for the late reply, I haven’t been around very much lately.
Just wondering if you’ve posted in any of the UK-based lymphoma support groups to see if anyone has insights to share? There are a few really helpful ones I’ve come across: