Hi all, my husband was recently diagnosed with follicular lymphoma. What's weird is that in 2015 he was diagnosed with Post Transplant Lymphoproliferative Disorder (PTLD) and had Rituximab, followed by R-CHOP, and then was in remission for 31 months. Over the holidays he started having night sweats and some lymph node pangs, so we thought he had relapsed, and we were preparing ourselves for a bone marrow transplant. They couldn't find an enlarged lymph node anywhere to biopsy, and he had a failed biopsy, but then in March he had a surgical biopsy and they diagnosed FL. The oncologist said it has nothing to do with the PTLD and is a completely different, new lymphoma. So we're confused, wondering if we should get a second opinion. It just seems kind of random and unexpected, and we don't want to proceed as if one thing if it's actually a relapse. And we didn't understand why FL isn't eligible for bone marrow tx, but PTLD is. But at any rate we're preparing to start Rituximab next month and are just in general confused.
But he tolerated tx very well before, worked all the way through, so we're staying positive and I'm hoping to meet more people to get a feel for what we can expect.
Thanks and nice to meet you all
Hi and welcome to this corner of the Mac Community.
Your husband and yourself have been on a bumpy ride. What type of Lymphoma did he have first and what type of transplant did he have?
There are people with FL who have had a Stem Cell Transplant but each case is taken on an individual case.
For me I had a different type of NHL. Diagnosed back in 1999 but the big guns were first used in late 2013 as my condition went out of control. My type of Cutaneous T-Cell Lymphoma (A Skin Lymphoma) was basically like a very bad skin condition for 14 years (hit my community name to see my story) so my story is rather unusual.
I am intrigued that they say SCT is ok for PTLD but not FL - why?
wow thanks, this is all so interesting how different and unusual everyone's situation is, I will read yours.
I guess I was making an uninformed assumption re the SCT, - I just know that when he was first talking with the oncologist about a relapse and we asked about treatments, she said, I will just refer you to the transplant center for SCT, but then when the biopsy came back as FL, she just said, Its not curable, we treat it like a chronic condition, so I thought that meant the SCT was off the table. It felt to me like, Oh crap we don't have any options, but I am learning from reading all of this that the maintenance tx and the tx to push it back actually seem to be pretty effective. I feel slightly less scared... 
thank you all for replying and please suggest any other resources for reading about FL specifically thank you!
This LINK will take you to Lymphoma Action - have a look.
Yes, some types of NHL are indeed seen as a chronic health condition and that was how my type was seen for many years.
