Follicular Transformed to Diffuse B Large Cell..Scared

Hi Christine,

I was just wondering if you received your 2nd opinion? I too was just recently diagnosed with DLCL after having been treated for Follicular w Rituxan only, but I have mutations so I am considered "double hit". I was originally scheduled to start R-Chop but they changed my chemo to Hyper-CVAD the night before. It sounds as though you have had many more complications. I too suffered for almost a year with hip pain & they told me it was muscle spasms. Looking back I was so relieved I didn't want to believe anything else. I have a large tumor that has done bone damage. The not knowing what to do or are we doing the right things, or are the right choices being made are the hardest parts for me. There are so many success stories here & they are so inspiring. Thank you everyone for sharing your stories it does make us stronger.

Brazzi, cat, misujih,

A regular here about three years ago coined a term for the fear of relapse that we all have: "Scanexity"; anxiety during annual or periodic follow-up scans.  I am not certain of the writer, but believe that it was Roc.

mis, Follicular is indolent, as you  know better than me, and the indolent strains are more prone to repapse; I know, having had NLPHL, which is an indolent HL that has an approximately 15% relapse rate after full remission.  And this can happen 10, 15, any number of years later.  I focus on the fact that these numbers mean also that the disease has an 85% liklihood to not relapse. In the cancer world, that is astronomical.  The late and great Pennsylvania Senator Arlen Spector's first lymphoma was NLPHL....he had two subsequent relapses in differing strains, all spaced far apart, before his end.

Brazzi, your attitude is the best, and the perfect way to face an uncertain medical future.  We lymphomaniacs do not die from lymphoma so much as we live with it.  But this is not to say the life is easy.  It is also not to deny the reality of dying:  20,000 a year in the US are taken by lymphoma. But among the millions living with it,  this seems like better chances than most cancer patients have.  My indolent strain has a high relapse rate, and like many indolent strains, also commonly comes back as a more aggressive form: usually either a large-B or, a leukemia.   If it ever does recur (I am lymphoma-clean going on seven years now) I do not think I will fear death, but rather dread the amount of work and disability that salvage treatment involves.  I would recommend that you do substantial research before deciding on a SCT.  Newer modalities for many forms of relapsed lymphomas work as well and are less draconian than SCT.

Wishing the best for all,

max

Our family doctor saw "cancer" in my husband's abdomen in Oct 2014.  A CAT scan of his abdomen, done to fine the cause of an unexplained fever, showed multiple enlarged lymph nodes.  She came to us in tears with the diagnosis and sent us up to Huntsman Cancer Institute in Salt Lake City.  Earlier that year, he had a stage 1B melanoma removed from his right thigh, followed by an epic infection that took 2 months to heal.  We had to make the appointment for the abdominal cancer in the dermatology department, because our doctor assumed that it was relapsed Melanoma.  The Oncologist had a couple of radiologists look over the scan, and they said it was "nothing", that the lymph nodes were the same size they were on his April 2014 scan, and not to worry about it.

In October 2016 he was having trouble eating.  He was complaining that food was getting stuck going down.  I took him to the ER, and they admitted him.  Assuming it was a bleeding ulcer (there was blood in his urine by then), they did a biopsy, which came back as DLBCL with a "triple hit". He had MYC, BCL2, and BCL6 mutations.  He went back to Huntsman, this time to Hematology, and has just finished 2 long cycles of CODOX-M/R-IVAC.  He came through the treatment alive, but with side effects.

From everything I've read, I'm convinced that he did have some sort of indolent lymphoma in 2014 that transformed.  His doctors (HEM) refuse to look at the earlier scans done in 2014 (DERM) at the same hospital, saying it would not make a difference.  I think they are just trying to protect their collegue.