Mantle Cell Lymohoma

Just wondering if anyone is diagnosed with MCL and if so, what therapy are you undergoing and what is your length of remission?  I'm in a Velcade clinical trial maintenance program.  Anyone else on Velcade.  Thanks for your responses.

Hello

My husband (52) was diagnosed with MCL in January this year. We live in Belgium and he has already had 6 chemotherapy sessions R-CHOP. After the fourth they ran tests, the bone marrow was showing clear as was the scans. He still had some cancer cells in the blood and colon. Now he has had more chemotherapy they will re-run the tests to check the situation. If all goes well they will start the procedure to remove healthy cells for an autologous transplant probably in July.

Did you read the book "The patient from Hell" by Stephen Schneider? He is a professor at Stanford University and was diagnosed with MCL in August 2001 - he underwent the same treatment as my husband is having and is now on maintenance therapy with Rituxan (the "R" in R-CHOP). I actually had contact with the author who is still clear of cancer, to-date, and is convinced that it is the Rituxan that is doing the "trick".

The problem is for us, is that there is no maintenance therapy foreseen in the hospital protocols here, and I am trying to take them on and convince them to try this after the transplant - so I am looking at any information I can find about maintenance therapy after treatment.

Can you tell me what treatment you have already had? and what stage etc of MCL you have? I'd be really interested to hear about the trial you are on.

Meanwhile the very best of luck to you

Deb

On 5/15/2008 deb1211 wrote:

Hello

My husband (52) was diagnosed with MCL in January this year. We live in Belgium and he has already had 6 chemotherapy sessions R-CHOP. After the fourth they ran tests, the bone marrow was showing clear as was the scans. He still had some cancer cells in the blood and colon. Now he has had more chemotherapy they will re-run the tests to check the situation. If all goes well they will start the procedure to remove healthy cells for an autologous transplant probably in July.

Did you read the book "The patient from Hell" by Stephen Schneider? He is a professor at Stanford University and was diagnosed with MCL in August 2001 - he underwent the same treatment as my husband is having and is now on maintenance therapy with Rituxan (the "R" in R-CHOP). I actually had contact with the author who is still clear of cancer, to-date, and is convinced that it is the Rituxan that is doing the "trick".

The problem is for us, is that there is no maintenance therapy foreseen in the hospital protocols here, and I am trying to take them on and convince them to try this after the transplant - so I am looking at any information I can find about maintenance therapy after treatment.

Can you tell me what treatment you have already had? and what stage etc of MCL you have? I'd be really interested to hear about the trial you are on.

 

Meanwhile the very best of luck to you

Deb

I was diagnosed with MCL on March 1, 2007.  I underwent R-chop + Velcade from April through July.  I'm now on a "Velcade" maintenance program every 3 months with a CT PET scan every six months.  My scan was clear in January and will have another scan in July.  Velcade in Jan, April, July, Oct etc.  So far I'm in remission.  Good luck to you.

Dave

On 5/15/2008 deb1211 wrote:

Hello

My husband (52) was diagnosed with MCL in January this year. We live in Belgium and he has already had 6 chemotherapy sessions R-CHOP. After the fourth they ran tests, the bone marrow was showing clear as was the scans. He still had some cancer cells in the blood and colon. Now he has had more chemotherapy they will re-run the tests to check the situation. If all goes well they will start the procedure to remove healthy cells for an autologous transplant probably in July.

Did you read the book "The patient from Hell" by Stephen Schneider? He is a professor at Stanford University and was diagnosed with MCL in August 2001 - he underwent the same treatment as my husband is having and is now on maintenance therapy with Rituxan (the "R" in R-CHOP). I actually had contact with the author who is still clear of cancer, to-date, and is convinced that it is the Rituxan that is doing the "trick".

The problem is for us, is that there is no maintenance therapy foreseen in the hospital protocols here, and I am trying to take them on and convince them to try this after the transplant - so I am looking at any information I can find about maintenance therapy after treatment.

Can you tell me what treatment you have already had? and what stage etc of MCL you have? I'd be really interested to hear about the trial you are on.

 

Meanwhile the very best of luck to you

Deb

I was DX with MCL on 02/06. Went through 6 rounds of R-CHOP. All scans came out clear. In 10/06 I had Stem Cell Transplant (my own). I am on the 2 year maintenance of Rituxan every 6 months. I have 1 more to go and I go for a PET scan just before my last treatment. I don't know what happens after that.

God is Good!

God Bless you,

Kathy in VA  :)