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Diffuse Large B-Cell Lymphoma (DLBCL)

catwink22's picture
catwink22
Posts: 281
Joined: Sep 2009

The complete pathology report is not in, but initital findings are that the Follicular Lymphoma has morphed into an aggressive Diffuse Large B-Cell Lymphoma.  The tumor that I originally thought was 13mm is actually 13cm! yes - OUCH!  I start R-CHOP on Wednesday.  Actually looking forward to doing something and hopefully alleviating some of the pain.  Still need to tell some close family members, not looking forward to that (especially at the Holidays).  I like to stay in my "logical, next-step, focus on today" bubble.  It's easier for me to deal with what I know than what I don't know down the road.

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3363
Joined: May 2012

cat,

I'm sorry this bad news struck at this time, but I understand your point about getting with the program.

Bless your full and complete recovery,

max

catwink22's picture
catwink22
Posts: 281
Joined: Sep 2009

Unfortunately more bad news. I now have "Double Hit" Lymphoma. Will not have R-CHOP will be getting Hyper-CVAD. Thank you Max

Anonymous user (not verified)

but DLBCL is curable! Keep us in the loop. I will be thinking of you.

catwink22's picture
catwink22
Posts: 281
Joined: Sep 2009

Is "Double Hit" also curable? I didn't know any of the NHLs were curable! That is promising thanks for the hope!

Anonymous user (not verified)

I know several people, including one very close friend, who have been cured of DLBCL. As I understand it, and I hope I am correct here, double hit means you will still have the potential for the FNHL slow growing to come back at some point after your upcoming remission. Could be 1 year or could be 10 or even 20 years. But FNHL is manageable. When I went to my oncologist to start FNHL therapy he told me about his first patient some 26 years earlier, whom he was still treating for FNHL. Yes there is hope and good reason to expect that you will be fine for many years. One of our members, Rocquie, also had a transformation. Hopefully she can offer some advice and encouragement based on her experience. She is more articulate than I so I will defer to her.

All my best.

catwink22's picture
catwink22
Posts: 281
Joined: Sep 2009

Thanks GKH

pdxgal
Posts: 2
Joined: Jan 2017

Hi Catwink22-

I too had a follicular lymphoma that transformed to a DLBCL (double hit). I am undergoing R-EPOCH, and have completed 3 rounds and have 3 more to go. They are recommending a stem cell transplant at the end of my chemo. How are you doing on Hyper-CVAD?

ggraphix
Posts: 4
Joined: Jan 2017

My husband just finished two rounds of R-CODOX/ M/ IVAC for triple hit DLBCL and will come back next month to have a PET scan.  Transplant has not yet been discussed.

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