mantle cell Lymphoma

I was diagnosed with MCL stage 4 in March of this year, it presented itself throughout my lymph system but mainly in my abdominal region, suffered a G.I. bleed in doctors office during marrow biopsy and was rushed to hospital and recived 15 units of blood and a regimen of R-chop chemo was started immed. my last cycles of R-chop was in June. In Aug i went for a petscan / ctscan which revealed a relapse, scheduled stem cell consult and immed start of R.I.C.E chem that started Sept 7 th my transplant doctor said i can only recieved donor transplant due to involvement in my marrow also. I just completed the first round of R.I.C.E and had an endoscopy this morning to see the progress of the cancer in my stomach area. results revealed several areas of additional involvement including the original site of bleeding. they took biopsies while there to have a positive diagnosis once they do they will tell me the next course of treatment.

has anyone had simular involvement and can tell how there treatment went...........Thank You

Well, this disease is refractive to chemo and adapts quite soon to traditional treatments. My dad got 8 rounds of maxi-chop and 4 rounds of RICE. These treatments gave him PR, but after that nothing helped.

Your disease seems to be aggressive too. I would consider treatments like Zevalin/Bexxar, Claridibine, Velcade and Revlimid. FCM-R and DHAP are good stuff too, but those are rough and your overall condition affects to things.

I wish you luck. Attitude means a lot fighting this devil.

I am afraid I am giving up hope , my support at home is nearly non existant

thank you for your response

On syys 11, 2010 11:33 JOE2010 wrote:

I am afraid I am giving up hope , my support at home is nearly non existant

thank you for your response

 

Don't give up. Every patient is different and you have still lots of weapons to use. How large is your tumor burden? Before my dad got his first RICE, he had 22cm tumor in abdomen. MCL responded at first and tumor shrunk to 6cm. After that MCL kept growing and didn't respond any chemo at any way.

New meds like Torisel are worth to try. Some benefit Thalidomide too. I hope your docs know what they're doing. These are difficult decisions.

Try to find people who really are ready to give all support you need.

I keep you in my prayers.

HI

I don't have any useful  info for you  - I too have mantle cell lymphoma but mine is ONLY in my bone marrow and I am doing watch and wait  HOWEVER, there is a group of mantle cell patients on the ACOR.ORG site, approx 400 of us, and someone there would probably have lots of answers for you if you want to go there and sign up and join us there.  It is the most helpful site I have found in the three years since I was diagnosed.  Any questions, just ask

thanks , I will check it out, it is good to hear of your good 3 yr span

Joe

Joe,

there are lots of good stories (and some sad ones) on the acor site.  One person was diagnosed in 1997 and is still with us.  Now doesn't that just give you tons of hope.  Hope to see you over there.

Hope is what I need NP, as soon as my better half signs me up I will see you there

Joe

Great Joe,  I think you will be surprised with all the support and good news we have over there.

Ginger S