My partner’s story

Hi  and welcome to this corner of the community.

I am Mike Thehighlander and I help out around our blood cancer groups. I don’t have FL but a rare incurable but treatable skin NHL. Diagnosed back in 1999 and been on a journey since (hit my name for my story).

The treatment journey your partner has been on sounds very familiar but good that he is through this part of his life and let’s look for things to stay stable for years to come.

((hugs))

Hi Mike Thehighlander ,

Thank you so much for your warm welcome. I’m glad to have positive people like you around to help out. It has been a journey but like you say, let’s look for the stable things to come and hopefully we can help each other out in the process. Sending you a big hug 

Hello

I was diagnosed with Follicular Lymphoma March 1st this year after having gastric problems even though I took Lansoprozole for damage done by NSAID meds for autoimmune problems. I went to hospital for an endoscopy, (which failed) and the subsequent CT and CT with barium meal, found raised lymph nodes, the following biopsy found the FNHL. It was a shock, because apart from the odd bout of bad indigestion and heartburn, I felt well!

Thanks to one cock up after another, I have never been told what stage mine is at, just that it's very early and doesn't need treatment until things get worse. So I'm in limbo... I finally see a specialist 14th June after have two telephone consultations with two different ones, so hopefully I'll get to see my scans and discover what stage I'm at. The upside is that I know it's slow growing and the longer treatment is put off, the longer remission between recurrences will be.

Hi Spaniard86, 

Your partner's experience doesn't seem to be too strange to me.  Some of us present in such vague ways, it's hard to guess what's happening.  Mine took several months to be certain and start treatment, even though it was a grade 4 too.  My GP is a shrewd lady and had a guess at it and I tended to agree with her, so at least I could read and think about it while going through the tests.  The disease & the pain was mostly on my hip bone, but since most old biddies like me have creaky hips, it was thought to be arthritis.

I'm just 2 years after finishing treatment with rituximab and bendamustine and I feel OK.  I had no maintenance chemo either.  I'd read that bendamustine tended to lower immunity, but the low immunity together with a pandemic is a lousy combination of circumstances.  It must have been very disruptive for you both and it's not over yet.  

As for the uncertainty of recurrence, yes, it's a worry.  But the modern treatments are so effective, I know what will happen is and when, so I can feel as prepared as possible.  I've found a lot of support reading stuff on this site.  You learn to cope from others who've been there and it's such a valuable resource when you feel scared.  It's why I loiter around even though I'm in remission.

Best wishes for you and your partner recovering from the experience,

Cecren