Hi all, it's been a while since I have needed to visit these threads for advice. My husband was diagnosed and treated for PMBCL in 2018. He was given the all clear in the Oct, and has been healthy and symptom free since. of course every cough and random symptom has left us worrying, but that life post treatment for you.
He has had annual check ups, and at the last one in Jul the consultant used the word "cured" as he's hit the 5 years since diagnosis mark. We joked at the time that could mean truoble.....
On the recent bank Holiday he noticed a dreaded lymph node in his neck, and went to the GP a week later. So far he's had bloods, which showed slightly raised infection markers. Xray, which showed lots of chest nodes up. He has ultrasound and CT, and when he went for a biopsy yesterday we asked if the CT results were in. It looks like there's a large mass in one lung. Were now waiting for the biopsy result, which I guess will tell us if its relapse PMBCL or lung cancer.
Not sure why i'm posting really, had some really fab advice here previously, and it has also proved to be a good log of what went on at the time. Were trying to distract ourselves from the torture of waiting for results. I have done some looking at what a treatment plan for relapse may look like, and think it is salvage chemo followed by stem cell transplant. Hes early 50s and very fit, so can't see any issues with the transplant for him.
If anyone has any experience or advice on any of this, we'd be happy to hear it. Will update when we know more.
Hi Lisa D I was looking back for your past activity but nothing comes up, I am assuming then that you may have had to rejoin the community for some reason.
Sorry to hear that your husband and yourself are possibly back on the rollercoaster. The simple answer is until the results are in it is all a guess.
I have a different type of NHL and relapsed multiple times over my first 16 odd years but am now coming up to 8 years out from my last treatment and although my type is classed as incurable the last time I did a holiday insurance quote, because I was over 5 years out from treatment I was classed as cured….. it’s a fun thing living with Lymphoma.
Over the past 8 years I have had various scans, MRIs, biopsies on ‘things’ that have shown up including on my lung and lumps and bumps on my neck and all were found to be nothing to do with my Lymphoma or another cancer.
As for other treatments there are a number with as you say salvage treatment and SCT, or possibly CAR-T but my understanding is that there are other second line treatment that can be looked at.
I eventually had salvage treatment and 2 Allo (donor) SCTs (June 2014 then Oct 2015) and over the last 8 years a few new treatments have come online for my type of NHL so although I was told back in late 2013 that SCT was my last hope I now have a few fallbacks.
Let’s hope that this is a storm in a tea cup but if required a plan can be put in place to deal with this
Always around to chat or just to listen ((hugs))
Time will tell what this is but keep the mind focused on the important fact that there are treatments out there is fix this ((hugs))
Yes MrsT, I just did a site search and found your posts.
Lymphoma can be so complicated and at times sneaky…… leading up to my first SCT my biopsy was showing two types of NHL…..
Let’s look for the plan to be put up n place and get treatment started ((hugs))
