Lymphoma recurrence after 23 years

Hi again and well done navigating over to our little corner of the Community and let’s see if anyone can help out with regards to your NHL presentation area.

It’s completely bad luck relapsing after 20 years especially after an Auto SCT. 

I relapsed after my first Allo (donor) SCT (June 2014) within 6 months but went back for a second Allo SCT in October 2015 and I am now 4 years in remission.

Lets look for a clear plan for you on Wednesday.

Hi, sorry to see you needing to post after so many years being clear, which type of NHL did you have?

As for your question about anyone having had NHL present in the bowel the answer is yes, a couple had to have a resection due to blockages as that will be a key worry, the rest managed to go straight into treatment and had rchop, rituximab is one of the key drugs in driving up remission rates that may not have been around when you were treated, so its possible you may be able to have it now.. 

I had dlbc in my small intestine as well as my abdomen and after 4 rounds of rchop the intestine was clear of all disease and after a further 4 rounds so was the abdomen.

The have also been a very small number of people I have come across over the last 11 years who have had a second type of lymphoma that was not linked to their initial diagnosis, so that may be a possibility, hopefully you get some answers this week and a plan.

do keep us updated.

John 

Hi John first time round I had Heptosplenic T cell lymphoma which was quite uncommon. It began with a very bad throat infection.  Despite a poor prognosis I tolerated the chemo and stem cell transplant very well and since April 1998 haven't really looked back.  This latest began in July when I thought I might have an anal fissure (I've had one before and it felt the same and in same place as previous op) So when things didn't improve I went to GP who found a lump and everything fast tracked from there. The colorectal specialist was surprised at what the biopsy showed as was I

Hi, that is one of the rarer types of NHL and having gone 20+ years then it will be a surprise and they are best kept for birthdays and Christmas. Hope you get the results back quickly as sometimes typing lymphoma can be a challenge, the positive is the are lots of new treatments and drugs that were not around 5 to 10 years ago, so beatable again. 

Update. Have been diagnosed with high grade Diffuse large B cell lymphoma.  CT scan shows that it is localised and some nearby lymph nodes involved. Going to have PET scan for grading.  Going to have 1 cycle of RCHOP asap and possibly radiotherapy. As I have had CHOP before I am limited to how many cycles I can have. Going to have echo scan on heart to check this out. 

Good to know you have a plan to work with.

That all sounds pretty standard, I would assume it doxorubicin that they will be concerned about and potential damage to the heart given you have had it previously. The may be other drugs given the various trials in the last 5 years, however chop is still the gold standard treatment. 

Treatment will be very similar to last time other than rituximab which is give via a drip as a slow infusion, if your in the lucky 50% you won't have a reaction and they will speed it up. I was in the unlucky 50% who did react so had to have it at a slow rate for all 8 cycles. This time 11 years ago I was finishing treatment for stage 4B DLBC so lets hope its as successful for you as it was for me.

Just wondering what the PET and echo showed and where your treatment plan is up to.

Hi Lolie. PET scan has shown that the cancer is localised which is good news. Not so good news is that I have developed a fistula which is an infection risk. So more bowels behaving badly. Start RCHOP tomorrow glad to get treatment started at last 

Very best of luck bowels behaving badly. I do hope everything works well for you. Please could l be selfish and ask you a question about your NHL? I had AITL in 2019 and had autologous stem cell transplant in Dec 19. My oncologist expects my AITL to return within next 12 months. Has anyone lived longer than two years with this condition? I am brand new to this forum. I live in Dublin. I don't mean to jump on your thread. Or l don't mean any offence. I live alone since my friend of 40 years died in may from cancer. Thank you.