Non Hodgkin's Lymphoma Friends
1,026 members457 posts

Searching for a TKO

I am seeking out others who may have a shared experience as am in a frustrating and nerve wracking place. I was diagnosed in Aug 2016 with DLBC Lymphoma, stage OK ...dr felt so confident that 6 rounds "gold standard treatment with RCHOP" would CURE this. 3 cycles and scan, good progress (original PET showed main mass in chest, one node near larynx and potential other node in neck) the defining biopsy was total removal of node at larynx. After 3 cycles echo only the mass in chest and making good progress on shrinking. Scan repeated at end of 6th showed more activity. Dr. says still aiming for CURE so different chemo and get remission then on to auto stem cell transplant. Did R-DHAP, 2 cycles and scan...."almost could call out remission" according to dr so did 1 more cycle. Transplant dr. Felt response good enough to move forward but I remembered our initial consult when he stated best outcome for transplant if inn complete remission - I asked if scanning again as my onc had talked with me after the last scan and decidion to complete 1 more cycle and wed discussed repeating scan after 3rd to be sure we didn't lose ground a did with RCHOP.

Transplant Dr didn't seem at all concerned as results of the first scan were good.... after much persuasion he ordered a C.T. Scan. Much to my sorrow I got a call back next day that this wickedly stubborn mass in chest had grown between cycle 2 and 3.

Transplant on hold and now advised yo try 2 yo 3 rounds of O-ICE ... just got home from that first cycle. Feels kinda like the rugs been pulled from beneath me and i am wondering how many chemo combos can we try???

Was told that my cancer is apparently begging chemo resistant so they are now looking at allo rather than auto transplant. I meet with him to discuss tomorrow but it took me a long time to grasp and prepare to hsve auto ....

Anyone else experience a resistant treatment and have to go through multiple regimens to get complete response??

4 Replies

Hi butterflymeme, welcome to NHL Friends. You have been through a lot of treatment and I hope someone here who has had a similar lymphoma diagnosis will see your post and share their experience. Maybe if you are up to it you could ask for a second opinion before you commit to another treatment option.

Also if you are able to research as much as you can about your particular situation online, information is very empowering. Here is a link to another thread on this forum and if you scroll down you will see that a member has posted several very useful links for researching about NHL which you might find useful:

Please keep us informed as to how you get on and what you decide to do; hang in there and keep fighting. Do the very best you can for yourself at this moment in time and remember that others have achieved remission after hefty bouts of treatment.

1 like

My best advice is to "just hang in there" and wait for your breakthrough. I was first diagnosed during a routine blood test while I was in hospital for appendicitis in 2008. I was touring in Ukraine at the time and had no clue I had a problem. In very limited English, I was advised to "check my blood" when I returned to Canada. About three months later, my lymphocyte count began to climb with alarming speed and I had to begin chemo. Several protocols were tried over seven months before one brought me under control. I had almost seven years of remission but eventually the cancer did what it often does, it mutated and my problems began again. My second time on chemo wasn't so successful. The chemo worked to kill off the cancer and bring down my lymphocyte count, but as you probably know, many other parts of the cell are also affected. My body couldn't "rebuild" fast enough to allow another round of chemo, hence a kind of stalemate results. Damned if you do, damned if you don't. Two years ago I was put on a "trial" using a direct target drug which has worked remarkably well for me. Other advice: take a good look at your lifestyle and eating habits and see if there's any positive changes that can be made.

1 like

Oh dear how awful for you sorry I have nothing to offer you other than positive thoughts and hugs coming your way😀

1 like

I can only give you a perspective from someone looking in from the outside.

My brother was diagnosed with TCHRBCL but it's treated like a DBCL.

2013 was diagnosed in September.

Asked the specialist what the best treatment was irrespective of cost and global location. Was told that the standard treatment was universal and we needed to start treatment. We felt reassured that after the chemo that would be it.

Given 6 cycles of RCHOP completed by Jan 14. Excellent result according to the PET scan.

Breath a sight of relief that the chemo has worked like the specialist said.

October 14 relapse: absolutely devastated.

Again we asked what's the best treatment and where and again reassured that the treatment we are getting is standard.

4 cycles of RDHAP done just to push the disease back.

Jan 15 had the BEAM and an autologous stem cell transplant.

This was a major toxic treatment and it reduced him from 225lbs to about 150lbs after treatment.

PET scan showed excellent response.

We felt this was a cure and that we had a slightly lucky escape.

March 2017 it's back, almost inconsolable.

So we then had to have cycles of gemcytabine and cisplatin "salvage chemo" it's called in prep for a stem cell transplant from a donor.

The chemo at the moment is keeping the disease at bay. But the dangers of the transplant are phenomenal.

I pushed for t-car but there are no trials in the uk and long term effects unknown. So we are in the hands of the specialists again who are advising of the transplant and again the word "cure" is mentioned.

It's tough what you're going through but it's about keeping mentally strong going from day to day and cycle to cycle.


You may also like...