Mantle Cell Lymphoma

miss maggie

Godsman said:

Your mothers MCL maintenance
I am currently in remission after R-chop 21 and 2 follow up Rituxan and Bendamustine treatments.
I am interested in knowing what maintenance regimens have worked for others with MCL since
I will have to make a choice as to what to do going forward. I am very interested in your mot
hers quarterly treatments especially since it has been quite successful and apparently appears to carry with it very low toxicity( something I feel very strongly about). Would you please give me a through description of her maintenance treatments with Rituxan and any thing else that may have been administered along with it. I would greatly appreciate it. Godsman

question for those DX with MCL
My question to all of you. Was this the original DX, MCL? Or did it transform from another Lymphoma? I would appreciate information. I am still learning, thanks. Maggie

jahartm

notuneak said:

Mantle Cell Lymphoma
Just wanted to jump in with some advice about MCL. My mother was diagnosed with Stage IV MCL in July 2007. It had spread from her intestines to her spleen, to her mouth, and who knows where else. She was 81 and was not eligible for transplant or trials.

My advice for anyone facing this disease or who has a loved one that has been diagnosed, is not to read anything on the internet that is older than a year. I've read billions of articles and the older ones are always depressing and take away hope.

However things are changing rapidly with MCL treatment. My mother had the R-CHOP upon diagnosis. She had some other different treatments - let me know if you need details, but nothing out of the ordinary. She didn't get ill from the treatments, just a little tired sometimes. She has continued living an active life, walking 5 miles a day and feeling good.

Her doc told her the cancer would come back and put her on a Rituxan maintenance schedule a year ago. She goes in every 3 months for an infusion that takes about 6 hours. She drives herself to treatment and home, and sometimes stops to shop on the way home. Her remission continues and she feels completely healthy. She has had no problems for more than 3 years and it is probably much longer because she'd had it several years when diagnosed.

She is getting treated in Seattle at the Seattle Cancer Care Alliance. I can't say enough good things about that place and the doctors and nurses there.

Hang in there everyone, get the treatments, have a positive attitude and prepare for a good remission. New treatments have come out since my mom was diagnosed. They are closing in on MCL.

MCL
Hello - I newly diagnosed and new to the boards. I am going in for a final lymph node biopsy on 10/19 - preliminarily I have MCL. I am working with doctors at a large suburban hospital in Detroit, but have started communications with the University of Michigan Lymphona clinic. The questions I have now are: 1) has anyone had any insurance problems with any of the possible regimens and 2) If my current doctor and UofMich docs agree on the best course of treatement how much does it matter where I get treated?

Thanks

merrywinner

jahartm said:

MCL
Hello - I newly diagnosed and new to the boards. I am going in for a final lymph node biopsy on 10/19 - preliminarily I have MCL. I am working with doctors at a large suburban hospital in Detroit, but have started communications with the University of Michigan Lymphona clinic. The questions I have now are: 1) has anyone had any insurance problems with any of the possible regimens and 2) If my current doctor and UofMich docs agree on the best course of treatement how much does it matter where I get treated?

Thanks

Welcome
Glad you found us. I do not have MCL but others here are dealing with it and they can help you there. As to your questions, I personally have not had any problems with my insurance. They have never questioned any treatment or procedure in nearly 2 years of treatment. I feel truly blessed for that. As far as where you get treated I would say if both are in complete agreement with your diagnosis,plan of treatment and follow up then it probably would not matter and would then become a matter of personal preference. The big thing is knowing which place has the most options to offer you both at the start of treatment and down the road. Some of the newer treatments are not offered everywhere. You will probably be able to get a good feel for it at your appointments. The major cancer centers are usually the best choice. Good luck. Mary

drewp73

merrywinner said:

Welcome
Glad you found us. I do not have MCL but others here are dealing with it and they can help you there. As to your questions, I personally have not had any problems with my insurance. They have never questioned any treatment or procedure in nearly 2 years of treatment. I feel truly blessed for that. As far as where you get treated I would say if both are in complete agreement with your diagnosis,plan of treatment and follow up then it probably would not matter and would then become a matter of personal preference. The big thing is knowing which place has the most options to offer you both at the start of treatment and down the road. Some of the newer treatments are not offered everywhere. You will probably be able to get a good feel for it at your appointments. The major cancer centers are usually the best choice. Good luck. Mary

mantle cell
Just found out last night I have mantle cell lymphoma. Routine colonoscopy results came back with the diagnosis. Don't know what to expect, but am trying to get staging done asap. Ohio State has an NCI affilitated hospital that I am going to try and get to. Prognosis doesn't sound to good from what I can read. Any help with where and who to see would be helpful.

gmusgrove

drewp73 said:

mantle cell
Just found out last night I have mantle cell lymphoma. Routine colonoscopy results came back with the diagnosis. Don't know what to expect, but am trying to get staging done asap. Ohio State has an NCI affilitated hospital that I am going to try and get to. Prognosis doesn't sound to good from what I can read. Any help with where and who to see would be helpful.

Mantle Cell
drewp73

I am a 2 1/2 year suvivior of MCL. You said that you read about MCL. One thing you should be a where of that there are major research going on with MCL. And the survival rate is increasing with the new treatments. I had a stem cell transplant on 9/4/08. This was to reduce the reoccurance of MCL. I have been cancer free since. Check out information from the www.LLS.org/lymphomaeducation.

My Fathers Daughter

mike k said:

Mantle cell stage 4
Hello,

I am 55 , good health and just diagnosed with stage 4 mantle cell lymphoma. We are trying to decide on what treatment we should take, as this was the option from the Mayo clinic. R Hyper CVAD or R-CHOP with a stem cell transplant.

Any advice?

Thanks Mike

Mantle Cell Lymphoma-Agressive
Hello,

My father was diagnosed six weeks ago with MCL the aggressive variation & not the indolent variation. He will be 72 yrs old on Thursday. It is stage IV.(bone marrow,spleen involvement) He just finished his 2nd treatment of R-Chop & has a total of 6 rounds scheduled. It will then be followed by an autoglutos stem cell transplant if all goes well. Just looking for some current info. or support. I know that age and degree of progression are not on his side but am still keeping faith that someone in a similiar situation has had a positive result.

Thank you.

nbstockton

mike k said:

Mantle cell stage 4
Hello,

I am 55 , good health and just diagnosed with stage 4 mantle cell lymphoma. We are trying to decide on what treatment we should take, as this was the option from the Mayo clinic. R Hyper CVAD or R-CHOP with a stem cell transplant.

Any advice?

Thanks Mike

Mantle Cell Lymphoma
PLease let us know what you decided and how it's going.

Katirita

gmusgrove said:

Mantle Cell
drewp73

I am a 2 1/2 year suvivior of MCL. You said that you read about MCL. One thing you should be a where of that there are major research going on with MCL. And the survival rate is increasing with the new treatments. I had a stem cell transplant on 9/4/08. This was to reduce the reoccurance of MCL. I have been cancer free since. Check out information from the www.LLS.org/lymphomaeducation.

Hello
My dad was diagnosed with MCL today, he is 58 has always been in great health...reading all the information put me in a state of shock and depression. After reading all the bad news I decided to google "I survived MCL". If anyone can please help me with a list of questions I should ask the doctors, it would be greatly appreciated. I so nervous and scared but feel some comfort reading all the stories of victory. Thank you for the support.

fandijoe

Katirita said:

Hello
My dad was diagnosed with MCL today, he is 58 has always been in great health...reading all the information put me in a state of shock and depression. After reading all the bad news I decided to google "I survived MCL". If anyone can please help me with a list of questions I should ask the doctors, it would be greatly appreciated. I so nervous and scared but feel some comfort reading all the stories of victory. Thank you for the support.

mantle cell relapse
diagnosis 9/2007 hypercvad followed by auto stem cell... relpased 5/2011 min involvment in the bone marrow the plan is for 6 cyles of velcade and rituxin with an mini allo to follow..stem cell dr wants me to be in 100 percent remission before the procedure.. any thoughts??

nsouliere

mantle cell lymphoma
Hi Peggy,

My husband was diagnosed with MCL on December 29, 2010. He's been through the R-C
HOP chemo treatments. Then they tried to harvest his own stem cells to do an auto - stem cell transplant, but his marrow was so beaten up by the chemo that they could not harvest enough of his own and on Sept.3, 2011,my husband received a donor stem cell transplant. The match was only a close match but we were glad to get it. He just last week developed GVH or Graft vs Host disease. The symptons were red, itchy and full body rash. He started on 70 mg of prednisone today along with all the other meds. that he takes such as pnuemonia preventative, infection fighters, folic acid, magnesium, and two drugs to prevent rejection of the stem cells. He will be 62 this coming december and before being diagnosed with MCL, the only health issue was high cholerteral. My husband was a very active man with a physical job. He now cannot work and presently has not energy at all. He can only sit in his recliner most of the day, watching tv or napping. This has been very hard for him but we try to remain hopeful. We have wonderful doctors at Dana Farber Cancer Institue in Boston,MA. Although we live an hour and a half away from the hospital, it's worth every minute. Try to get family and close friends to help you because as a caretaker, you'll need help. I don't have a lot of help but the little I have is dependable and priceless as through all this I am working full time. I must keep working now as I am the only health insurance provider. My husband was able to receive disability payments from Social Security and that too has been a great help. I wish you the best and will keep you and your husband in my prayers.

Frankz

nsouliere said:

mantle cell lymphoma
Hi Peggy,

My husband was diagnosed with MCL on December 29, 2010. He's been through the R-C
HOP chemo treatments. Then they tried to harvest his own stem cells to do an auto - stem cell transplant, but his marrow was so beaten up by the chemo that they could not harvest enough of his own and on Sept.3, 2011,my husband received a donor stem cell transplant. The match was only a close match but we were glad to get it. He just last week developed GVH or Graft vs Host disease. The symptons were red, itchy and full body rash. He started on 70 mg of prednisone today along with all the other meds. that he takes such as pnuemonia preventative, infection fighters, folic acid, magnesium, and two drugs to prevent rejection of the stem cells. He will be 62 this coming december and before being diagnosed with MCL, the only health issue was high cholerteral. My husband was a very active man with a physical job. He now cannot work and presently has not energy at all. He can only sit in his recliner most of the day, watching tv or napping. This has been very hard for him but we try to remain hopeful. We have wonderful doctors at Dana Farber Cancer Institue in Boston,MA. Although we live an hour and a half away from the hospital, it's worth every minute. Try to get family and close friends to help you because as a caretaker, you'll need help. I don't have a lot of help but the little I have is dependable and priceless as through all this I am working full time. I must keep working now as I am the only health insurance provider. My husband was able to receive disability payments from Social Security and that too has been a great help. I wish you the best and will keep you and your husband in my prayers.

MCL
Hi,

Your husband and I have a lot in common. I had physical jobs for most of my adult life and I also have MCL. 2 out of 3. But I wish I had his looks instead.

A Donor Stem Cell Transplant (allogeneic)is a serious procedure which has greatly improved over the past few years. Also the resulting reward for us with MCL is a possible CURE.

You're at an excellent hospital.

Good Luck
Frank

Frankz

fandijoe said:

mantle cell relapse
diagnosis 9/2007 hypercvad followed by auto stem cell... relpased 5/2011 min involvment in the bone marrow the plan is for 6 cyles of velcade and rituxin with an mini allo to follow..stem cell dr wants me to be in 100 percent remission before the procedure.. any thoughts??

mantle cell relapse
Hi
Just a few questions?
Where did you have your initial treatment? (MD Anderson)
Did you have a watch and wait period prior to your treatment?
Were you on a maintenance program after your first remission?

You asked for our thoughts:

As we all with MCL know there is no standard of care. So anything that sees reasonable is reasonable.

Recently Bendamustine w/Rituxin has been used as a less aggressive approach as compared to HyperCVAD, RICE or Maxi Chop.

Unfortunately the new biological more targeted treatments are 1 to 3 years off.

So I'm assuming your Dr. believes the Velcade and Rituxin will keep your disease under control until the new targeted therapies are available.
- better targeted monoclonal antibodies
- the use of compound molecules
- stopping mutated cell reproduction biologically

Good Luck
Frank

melvme

Frankz said:

mantle cell relapse
Hi
Just a few questions?
Where did you have your initial treatment? (MD Anderson)
Did you have a watch and wait period prior to your treatment?
Were you on a maintenance program after your first remission?

You asked for our thoughts:

As we all with MCL know there is no standard of care. So anything that sees reasonable is reasonable.

Recently Bendamustine w/Rituxin has been used as a less aggressive approach as compared to HyperCVAD, RICE or Maxi Chop.

Unfortunately the new biological more targeted treatments are 1 to 3 years off.

So I'm assuming your Dr. believes the Velcade and Rituxin will keep your disease under control until the new targeted therapies are available.
- better targeted monoclonal antibodies
- the use of compound molecules
- stopping mutated cell reproduction biologically

Good Luck
Frank

It will not sink in
Hi there and good luck with all sincerely so

I havent spoken to a a soul, just keep it all in.......im now at screaming point

Ive read comment after comment treatment after treatment............

my partner and are I are alone literally. We have the diagnosis of stage 4 MCL but i cant understand why no treatment has been offered. we have an appointment on june 18th and im going to have to fly at somebodies throat........

We were asked what do you know about MCL he replied we have read and it seems there is a 3 to 5 year survival rate and the dr just nodded ........ didn't add a word.

however he is in a state..... crashed the car whilst driving.....impact being the wake- up call and a couple of incidents since where by he just falls a sleep no matter how hard the fight to try to avoid things - I wonder when the help arrives or is it simply dependent on where you live......Where do you turn ....where do you go

I apologise for being negative but busting it to turn it in to a positive

all the best to you

melvme

Skipatrol007 said:

Mantel Cell
Hello,

I was told I have mcl in 10/09. I had one round of rituxan and have responded well. (no side effects) My Dr. wants to put me on a clinical trial of Rituxan, Cladribine and Vorinostat (Trial # OHSU-4180).

He has had patients with good results 5 + years of remission with just rituxan and cladribine and beleives the addition of the vorinostat could increase the remission rate further.

I am 48 and in good health and this is very hard to deal with, I try to stay positive but find myself on the "pitty pot" now and than.

I got a second opion from Fox Chase and they recommended the heavier duty chemo plus a stem cell transplant. I am opting for the other treatment as it is much less toxic on the body and they advise we can always go the other route if necessary.

Would like to speak, e-mail with anyone interested in dicussing this disease. My email is skibum789@aol.com Thank-You

Good luck to all,
God Bless,
Rich

my partner
Hi there
I hope all is well ...........

I have read you on the site and cant help but bring on a question in hope of a reply as blunt as it may seem ..........despair i think you call it

Could i please hope not to offend but ask at what stage were you diagnosed and how long after were you offered some form of help or treatment.

We are on watch and wait with issues to be honest .........i can only say how long do you have to wait for the help.......stage 4 MCL

Much thought 24/7

grannyx4

melvme said:

my partner
Hi there
I hope all is well ...........

I have read you on the site and cant help but bring on a question in hope of a reply as blunt as it may seem ..........despair i think you call it

Could i please hope not to offend but ask at what stage were you diagnosed and how long after were you offered some form of help or treatment.

We are on watch and wait with issues to be honest .........i can only say how long do you have to wait for the help.......stage 4 MCL

Much thought 24/7

Hi,
My son was diagnosed in
Hi,
My son was diagnosed in 2009 at the age of 32 yrs. He was also in stage 4.
We were seen by Sloan Kettering in NYC. They began with R-CHOP and RICE chemo and
then followed up with a stem cell transplant in Feb. 2010. It has been two years plus
and he is thankfully still in remission. The doctors at Sloan do not believe in a
wait and see situation. They started chemo within two weeks of his diagnosis.
I wish you all the best. Please keep me posted and if there are any questions I can
answer or if your partner would like to speak to my son, please let me know.

Keeping you in my thoughts!
outlawtwice@msn.com

Lorraine

DadysGirl

My Fathers Daughter said:

Mantle Cell Lymphoma-Agressive
Hello,

My father was diagnosed six weeks ago with MCL the aggressive variation & not the indolent variation. He will be 72 yrs old on Thursday. It is stage IV.(bone marrow,spleen involvement) He just finished his 2nd treatment of R-Chop & has a total of 6 rounds scheduled. It will then be followed by an autoglutos stem cell transplant if all goes well. Just looking for some current info. or support. I know that age and degree of progression are not on his side but am still keeping faith that someone in a similiar situation has had a positive result.

Thank you.

Hi, my Father is getting
Hi, my Father is getting ready for stem cell tranplant as well ((
How did your father do? Please let me know. I hope everything is going well
for you and you familly.
Regards.

Djzlady96

melvme said:

my partner
Hi there
I hope all is well ...........

I have read you on the site and cant help but bring on a question in hope of a reply as blunt as it may seem ..........despair i think you call it

Could i please hope not to offend but ask at what stage were you diagnosed and how long after were you offered some form of help or treatment.

We are on watch and wait with issues to be honest .........i can only say how long do you have to wait for the help.......stage 4 MCL

Much thought 24/7

watch and wait
Why are they watching and waiting at stage 4? I'd be questioning that. My husband has MCL and stage 4 and had treatment started within 3 days. I'd be askingnsome questions or seek 2nd opinion. Best wishes

Djzlady96

My Fathers Daughter said:

Mantle Cell Lymphoma-Agressive
Hello,

My father was diagnosed six weeks ago with MCL the aggressive variation & not the indolent variation. He will be 72 yrs old on Thursday. It is stage IV.(bone marrow,spleen involvement) He just finished his 2nd treatment of R-Chop & has a total of 6 rounds scheduled. It will then be followed by an autoglutos stem cell transplant if all goes well. Just looking for some current info. or support. I know that age and degree of progression are not on his side but am still keeping faith that someone in a similiar situation has had a positive result.

Thank you.

Wondering
Just wondering how everything has been going. My husband's situation is almost identical to your father and just found this site. Can you tell me how it's gone?

Djzlady96

gmusgrove said:

Mantle Cell Lymphoma
I am a Mantle Cell Lymphoma (MCL) survivor. I was originally dx with MCL on 4/15/08. Cancer was originally located in my colon. I was very constipated and had bathroom problems. After a bone marrow biopsy it show no MCL in my blood. I was stage 2E. I also had no night sweat, weight loss or lumps. My oncologisty recommended doing chemo and a SCT to give me the longest possible time of remission. I had six cycles of R CHOP chemo. A chemo treatment every 21 days. Went into remission. I had a stem cell transplant (SCT) on 09/04/08. My new birthday. I was able to use my own SCTs. My blood was still clear. Did transplant in Dallas, TX at Texas Oncology at Baylor University Medical Center. Transplant time was 30 days. Very rough time for about 6 months during treatment. I had a colonscopy in Dec. 2008. It showed a complete recover from the cancer. I am now being watch every 3 months to keep an eye on the cancer. Finding out that you have cancer is a real big blow in anyones life. Support from drs, family and many friends keep me going. A positive attitude is very important. The imporant thing is to fight. Cancer is a battle. Praying that God will put doctors and others in your life to answer your questions. Always ask questions.

gmusgrove

how are things
Wondering how you are doing to date.

Djzlady96

gmusgrove said:

Mantle Cell Lymphoma
I am a Mantle Cell Lymphoma (MCL) survivor. I was originally dx with MCL on 4/15/08. Cancer was originally located in my colon. I was very constipated and had bathroom problems. After a bone marrow biopsy it show no MCL in my blood. I was stage 2E. I also had no night sweat, weight loss or lumps. My oncologisty recommended doing chemo and a SCT to give me the longest possible time of remission. I had six cycles of R CHOP chemo. A chemo treatment every 21 days. Went into remission. I had a stem cell transplant (SCT) on 09/04/08. My new birthday. I was able to use my own SCTs. My blood was still clear. Did transplant in Dallas, TX at Texas Oncology at Baylor University Medical Center. Transplant time was 30 days. Very rough time for about 6 months during treatment. I had a colonscopy in Dec. 2008. It showed a complete recover from the cancer. I am now being watch every 3 months to keep an eye on the cancer. Finding out that you have cancer is a real big blow in anyones life. Support from drs, family and many friends keep me going. A positive attitude is very important. The imporant thing is to fight. Cancer is a battle. Praying that God will put doctors and others in your life to answer your questions. Always ask questions.

gmusgrove

how are things
Wondering how you are doing to date.