Mcl Stage Iv Dx

Hello~

My Mother is a 64 y/o woman diagnosed with Mantle Cell Lymphoma. She also tested positive for "5%" in her bone marrow this week after having a painless lump under her arm tested. She is in otherwise in very good health with no prior health problems-non smoker/drinker, frequent exercise, etc.. The doctor has offered CHOP or Hyper CVAD with bone marrow transplant. The preference from the doctor seems to be the more "challenging and tough" Hyper CVAD. We have two opinions that are encouraging this path due to the longer success rates.

She just had the port placed in neck yesterday and we are waiting to see if she will qualify to be a bone marrow candidate at the Mayo CLinic in Jacksonville, Fl. Apparently it is not typically offered to patients 65 or older. But the doctor feels she is a good candidate due to good health.

This was a shock to our family and we're still trying to process everything.

I am interested in learning more about Hyper CVAD tx and if there is anyone who is taking this route. I've read the Houston study of 98 patients, but that's the only information I have. Any information would be appreciated.  Also, this is my first message board-are there others that are specific to MCL?

Take Care, Angela

 

 

Hi Angela

Just came across you post while surefing today. I was dx with MCL stage IV in 2005. Did the RHCVAD route with an auto sct that year. Just celebrated my 2 years. I was 57 when things began.
Since your mom is in good health that will make it easier. Personally I had no major problems with the RHCVAD. Can't say that it was easy but it is manageable and unfortunately each person reacts differently so there is no hard and fast road map. Re the sct: your mom is reaching the outer limit that docs feel comfortable with since the transplant can be tough. Doing an auto sct can be easier since there is not the problem of graft vs host but it is still rough on the body for a while.
A couple site you might want to look at is the MCL Consortium. Also the Leukemia and Lymphoma society has a chat site and there is a string for MCL there.
If you have any more specific questions, I'd be happy to answer them as you and your family begins this journey.
Wishing you the best
greg

Greg,

I'm glad to hear you are doing well. I sincerely appreicate your feedback. I've come across many people who have experienced Lymphoma, but not specifically MCL.

Currently we are scheduled for our first appointment at Mayo next Tuesday, so I'm eager to hear their opinions and recommendations for treatment. We have an appointment with Dr. Roy, who is the director of the bone marrow transplant division...don't really know anything else about hime unfortuneately.

My Mother is very positive, energetic and ready to "get on with it". She's a beautiful retired school teacher of 37 years and has always had an amazing spirit and level of perservernce. She's ready to begin treatment and get back to "normal" life. It's good to see her have a positive attitude and everyone seems to think it will make a difference when she begins treatemnt.

Again, thank you for responding. I wasn't sure if anyone would ever respond... :-)

Have a good day and take care of yourself!

Angela

 

On 11/9/2007 LittleA wrote:

Greg,

I'm glad to hear you are doing well. I sincerely appreicate your feedback. I've come across many people who have experienced Lymphoma, but not specifically MCL.

Currently we are scheduled for our first appointment at Mayo next Tuesday, so I'm eager to hear their opinions and recommendations for treatment. We have an appointment with Dr. Roy, who is the director of the bone marrow transplant division...don't really know anything else about hime unfortuneately.

My Mother is very positive, energetic and ready to "get on with it". She's a beautiful retired school teacher of 37 years and has always had an amazing spirit and level of perservernce. She's ready to begin treatment and get back to "normal" life. It's good to see her have a positive attitude and everyone seems to think it will make a difference when she begins treatemnt.

Again, thank you for responding. I wasn't sure if anyone would ever respond... :-)

Have a good day and take care of yourself!

Angela

Angela,

My husband was diagnosed last year with MCL, did 6 rounds of R-CHOP and then a stem cell transplant, he is doing good, in remission. You will find that your mothers positive outlook on life with make the world of difference in her treatment. Best of luck.

Congratulations to you and your husband on his remission! That is very encouraging to hear. I can only imagine how relieved you both are to have successfully completed the R-CHOP. Do you know at what point during his treatment the decision was made to do stem cell transplant? We are still unsure if that will be a part of her treatment and don't know much about it.

Currently, my Mother is receiving the R-CHOP tx. At her initial dx of 4th stage MCL, she was she scheduled for 6-8 treatments of R-CHOP and possible bone marrow transplant...depending on her progress. To date, she has completed 3 rounds and is due to go back into hospital for fouth within a week. Afterwards,  they will do all testing to see if the treatment is working.  According to her physicians, she is doing "very well". While it's been exhausting and a life altering experience, I think she has done well. The only real side affects she's had are loss of hair. extreme fatigue (at times) and change in appetite (at times). However, se hasn't lost any weight. From my research, it seems she has been fortuneate not to experience more negative affects fromt the chemo.   Her strength and positive attitude throughout treatment has been inspiring. Although, as you probably know....it's still difficult to witness what she is enduring on a daily basis. 

We are hopeful that we will continue to progress, and eventually be in remission. Again, congratulations to you and your family. I wish your husband (and you) continued good health. 

On 1/31/2008 Copatty wrote:

 

On 11/9/2007 LittleA wrote:

Greg,

I'm glad to hear you are doing well. I sincerely appreicate your feedback. I've come across many people who have experienced Lymphoma, but not specifically MCL.

Currently we are scheduled for our first appointment at Mayo next Tuesday, so I'm eager to hear their opinions and recommendations for treatment. We have an appointment with Dr. Roy, who is the director of the bone marrow transplant division...don't really know anything else about hime unfortuneately.

My Mother is very positive, energetic and ready to "get on with it". She's a beautiful retired school teacher of 37 years and has always had an amazing spirit and level of perservernce. She's ready to begin treatment and get back to "normal" life. It's good to see her have a positive attitude and everyone seems to think it will make a difference when she begins treatemnt.

Again, thank you for responding. I wasn't sure if anyone would ever respond... :-)

Have a good day and take care of yourself!

Angela

Angela,

My husband was diagnosed last year with MCL, did 6 rounds of R-CHOP and then a stem cell transplant, he is doing good, in remission. You will find that your mothers positive outlook on life with make the world of difference in her treatment. Best of luck.

 

Hi....My sister is 57 and was just diagnosed.  Good to hear you seem to be doing well.  Any information you can pass along about the chemo or stem cell would be greatly appreciated.

 

Sharon

Hi Sharon

 Sorry to hear that your sister has to join our club.  Hope she is OK and considering all things doing well.

 It's hard to respond generally to what you've asked only because there are a variety of approaches depending on her doctor and what protocol they use.  Her reaction to chemo can vary from nothing to a whole gamut of reactions.  The only general thing is that about 7-10 days after chemo you reach what they call a NADIR(low point) which is usually marked by fatigue and a general low point from their you begin to gain strength and usually get back on track. 

 Some areas combine chemo and radiation too.  I have not had any experience with radiation and really can't speak to issues there.

 I can say the same for the stem cell proceedure.  First off there are 2 types of stem cell transplants--AUTOLOGOUS(using your own stem cells) or an ALLOGENIC(using a donor, either a blood relative or an unrelated donor).  On these the stem cells are collected in sort of a reverse blood transfusion to be simplistic.  There is a more complicated where they actually take bone marrow for transplant and that is a more complicated issue.

 After treatment for the cancer and testing that shows clear of cancer then they start the transplant proceedure.  Usually begun with high dose chemo and radiation(sometimes) followed by the infusion of the stem cells which is realtively uneventful.  Counts bottom out and the wait begins for the counts to rise and the engraftment to take hold.  Again reaction varies all over the place.

 That is the nickle tour of what you asked.  If you have something specific please feel free to ask and I'll try and answer.  One thing you might check into is the Luekemia and Lymphoma Society.  They have a lot of booklets you can order free of charge that talk about different phases of blood cancers.  Also something that is good is the Lance Armstrong Foundation has a notebook that is free except for shipping, which is a good way to keep organized with everything your sister is going thru.

 Wishing your sister and you the best

    greg