Mantle cell lymphoma - need survivor stories

MrsG981 said:

Hiccups
My 63 year old husband was diagnosed with CLL in 2008. After treatment he was in remission for 20 months before it came back again. Another round of chemo for CLL gave him only 2 months of remission. We found out the cancer was back again in February of 2011 when he had his tonsil removed and the biopsy showed it was MCL.Since then he had lymphomas appear in his neck and a fast growing lymphoma in the orbit behind his right eye, in his lung and in his testicle. Last week he checked in at Yale Smilow Cancer Center for three days of a really strong chemo that he seemed to tolerate pretty well until it gave him hiccupps. Of all the symptoms he has had to endure this is the one that is killing his fighting spirit. He has been taking progressively stronger muscle relaxers but they only work for a few hours at most. He is afraid to move or eat in case they get worse. Did anyone else have this problem? Did anything help get rid of them? He has to go for a second round in 2 weeks and this side effect is the one he fears most.

make a video
The treatment didn't work and my husband died 11/30/2011. To all cancer patients and their spouses I would like to suggest making a video of your loved ones. We never did and now I would give anything to hear his voice and see him smile... even if it was only on film.

wnbigler said:

mantle cell lymphoma
My initial complaint was fatigue; I was an active age 68. In May 2006, elevated white blood cell count indicated an initial diagnosis with CLL (chronic lymphocytic leukemia) with the advice that a biopsy be obtained and analyzed for MCL vs CLL. An "itchy lump" on my calf (duration about 18 months) was biopsied in August 2006. The diagnosis was now MCL. Confirmation by bone marrow biopsy revealed stage IV MCL.

R-hyperCVAD was initiated in September 2006. Pneumonia, after 4 cycles of R-hyperCVAD, stopped the treatment in Dec 2006; but another bone marrow indicated complete remission had been achieved. After recovery and lots of tests, I was approved for a hematopoetic stem cell transplant. The options were autologous or donor cells. After much reading and considering my age (69) and quality of life issues (donor cells would require long term immune suppressive drugs), I decided to use my own purified stem cells. The preparation involved difficult chemotherapy - to wipe out my potentially cancerous immune system. On August 8, 2007, my purified stored stem cells were infused back into me. Recovery was slow. My physicians approved Rituximab Maintenance (RM) therapy to optimize my chances for long term remission. After a Feb 2008 initial RM of four weekly Rituxan infusions this treatment was changed (June 2008) to one infusion every 8 weeks. In 2009, I asked if the RM could be changed to one infusion every 10 weeks; my request was approved. The plan is to continue indefinitely. I have no side effects from the Rituxan.

My health has returned to close to normal (given age 72). Weekly hikes of 10-13 miles, with 1000-3000 ft elevation change, leave me tired but feeling good. Snorkeling for an hour at a time is wonderful. Bird watching is fun again. Provided I get back for my RM infusions my wife and I have enjoyed travel to the Galapagos Islands/ Ecuador, New Zealand/Australia (7 weeks), Kaua'i (annual - up to a month), Moloka'i, Arizona, Washington, etc. We are enjoying watching our 5 grandchildren grow up (for two years I did not see them, due to concern about my potential lack of resistance to infection). Life can be GREAT! (despite continuing concerns about possible MCL relapse.)

Bill Bigler

Which hospital were you
T B. Bigler: Which hospital were you treated in? How are you doing today?

lsk1000 said:

MCL In Remission
I was 59 when diagnosed in October 2007. Today I am felling well and doing fine. Since I was treated at the Dana-Farber Cancer Clinic in Boston, (one of the best in the world) by the director of the hemotology oncology department. Dr. Arnold Freedman (also one lf the best in the world) I believe my treatment can be looked upon as a classic example of how to approach MCL. Of course no two people are alike, nor is their illness.
For what its worth here is my story.

Cancer was stage 3 and slow growing. We waited 3 years before treatment as I was asymtomatic except for enlarged lymph nodes.
Treatment began with R-CHOP, less toxic than Hyper-CVAD, although duxorubicin can effect the heart years later. After 4 chemo infusions the rate of apotosis (cell death) as 35%. My Dr. was underwhelmed with that apototic rate so he switched me to a chemo developed in Germany called Benfamustine + R (Rituximab). Bendamustine is not a very well known drug. I urge everyone to take note and inform your doctor. That switch in treatment protocol saved my life. The response rate to new chemo was 100% after 4 treatments, with one more for good measure. I was in remission. No nausea or hair loss during chemo.

Next was autologus stem cell transplant. Dr. Freedman was very emphatic. The transplant offers the best chance for the longest and most durable remission. Who was I to object? And what if in 2-3 years I relapsed and wondered what if I had the transplant? The worst 20 days of my life, but worth every agonizing moment. Delerious, nausea, weight loss, didnt eat or drink anything for 2 straight weeks. But I survived. It was emotional coming home. My wife was an angel. (Cant do this without an angel.) My hair grew back, my toothpick arms amd matchstick legs grew muscle.
I'm alive and other than lack of stamina I am back to pre-diagnosis health. I pray anyone reading this has equally good fortune.

Thank you... Please pray for
Thank you... Please pray for my Father too. He is getting his stem cells harvested June 12th for stem cell transplant... His name is Yunus....
Wishing you, my Father and everyone long healthy lives with their loved ones...
My father has non hodgkins large diffuse b cell never had remission...:(

lsk1000 said:

MCL In Remission
I was 59 when diagnosed in October 2007. Today I am felling well and doing fine. Since I was treated at the Dana-Farber Cancer Clinic in Boston, (one of the best in the world) by the director of the hemotology oncology department. Dr. Arnold Freedman (also one lf the best in the world) I believe my treatment can be looked upon as a classic example of how to approach MCL. Of course no two people are alike, nor is their illness.
For what its worth here is my story.

Cancer was stage 3 and slow growing. We waited 3 years before treatment as I was asymtomatic except for enlarged lymph nodes.
Treatment began with R-CHOP, less toxic than Hyper-CVAD, although duxorubicin can effect the heart years later. After 4 chemo infusions the rate of apotosis (cell death) as 35%. My Dr. was underwhelmed with that apototic rate so he switched me to a chemo developed in Germany called Benfamustine + R (Rituximab). Bendamustine is not a very well known drug. I urge everyone to take note and inform your doctor. That switch in treatment protocol saved my life. The response rate to new chemo was 100% after 4 treatments, with one more for good measure. I was in remission. No nausea or hair loss during chemo.

Next was autologus stem cell transplant. Dr. Freedman was very emphatic. The transplant offers the best chance for the longest and most durable remission. Who was I to object? And what if in 2-3 years I relapsed and wondered what if I had the transplant? The worst 20 days of my life, but worth every agonizing moment. Delerious, nausea, weight loss, didnt eat or drink anything for 2 straight weeks. But I survived. It was emotional coming home. My wife was an angel. (Cant do this without an angel.) My hair grew back, my toothpick arms amd matchstick legs grew muscle.
I'm alive and other than lack of stamina I am back to pre-diagnosis health. I pray anyone reading this has equally good fortune.

Good to be in Boston
I was diagnosed with Mantle Cell Lymphoma in 2004.

I was treated in patient at Massachusetts General Hospital by Dr. Takvorian with R-hyper-CVAD. I responded well and only needed three of the four scheduled rounds of treatment. Except for losing a lot of my body hair and a 36 hour nose blood (reaction to Bactrim) that land me inpatient for a couple of days, I didn't have much in the way of adverse reactions.

I relapsed in 2006 and elected to undergo an allogeneic stem cell tranplant as my sister was already typed and was found to be a perfect match. Dr. Spitzer at MGH Bone Marrow Treatment Center took over treatment from Dr. Tak. I had my mini-allo SCT (not fully ablative) in August 2006 after being given RICE chemotherapy on an out patient basis.

Except for a somewhat adverse reaction to one of the treatment drugs for a couple of days while in patient, I was discharged after 21 days in patient and went home to recover in isolation. While I couldn't go out and be around people, I would take long car rides by myself.

I returned to work full time after three months.

Then I got a rash. At the time I was still visiting MGH BMT twice a week. So a diagnosis of GVHD was given. Rash was treated topically by over the counter products and steroids by mouth.

Then I got severe diarhhea, back inpatient for Stage 4 GVHD. The lining of my small intestine had gone away.

Treatment was supposed to take 4 weeks.

Three months inpatient.

Finally got out a week after my 55th b-day in April 2007. For most of the 3 months, I couldn't eat anything. I survived on sugar free ice-pops, water and an occasionally diet coke although the docs said I shouldn't be ingesting anything. All my meds were administrated intravenously and I was also feed intravenously with TPN. I had five pumps hooked up to me at one time, I usually only had an hour or two per day when something wasn't being pumped into my hickman catheter.

Now five years later, I still see Dr. Spitzer every other month for an infusion of immunoglubin but other than that, life goes on including working full time for this 60 yr. old diabetic, single vessel off-pump LAD bypass, ulcerative colitis, and cancer survivor.

joti said:

Just got diagnosed
I am scared to death !!!!!! I was diagnose this morning with Mantle Cell Lymphoma ... I was told I could try the cell transplant and if not eligible then start Chimio. As many patients I was diagnosed at stage 4, It seems to me like a bomb fell on my head, I have neve been sick in my life , I am obese and until May 19 2009 I was fine.
I do not know for sure whaty are my chances and am panicking... That is the reason I am online searching for a rainbow and some accurate answers...
I live in Pittsburgh. I am searching for an accurate rate of surviving and online I get statistics from 2005 I did not find yet the ones for 2008- 2009
If anyone wants to chat or just post me a note I will always answer.
Thanks to every body.

The cure for all cancer cell
I have found an herb that kills all cancer cells in the body and leave the healthy cells in tact it's been tested in animal trials and human trials all very successful with no cancer detected in the body I ask the doctor in Canada how long till the cancer is removed from the body he said it depends on the persons body, but I ask him base on your human trials he said it took 32 out of 35 people roughly 3 to 7 months before the cancer was out of the body I ask him were can I purchase this cancer herb, he said threw me but it is very expensive 200.00 dollars not including shipping so I ask him how do I purchase it he told me just send me a money order of 215.00 to cover shipping and right away my radar went up this is a scam so it took me two weeks to say f it my uncle is dying of lung cancer and pancreatic cancer what the hell what's 200.00 dollars so I sent it and what if you no it came in a dark colored bottle and it said cancer support on it with dosage instructions and some reading material on it so I gave it to my aunt and told her to give this to your husband and follow the dosage instructions severely until his next doctor check up and guess what happen cancer stop spreading threw his body and began to see fewer cancer cells within two months ,my aunt came to see me after the doctor visit and she said the doctor told them that the medicine he gave him I see is working my aunt laugh she said and began to cry hugging me and told me I was her angel called mercy and that I was born with a purpose.

JAM-Man said:

Mantle Cell, April 2011
Hi, my husband was diagnosed with MCL Stage 4 - in November 2010. He has been going for treatment at Hackensack University Hospital, and this week will be coming to his final and 6th treatment there!
He is 53 years young, and did not have a stem cell transplant. He is considered to be in full remission! So far, so good! He is dreading the next 'B' treatment- which did cause an anal fissure. However, we are told he should expect to fully recover from the treatments side effects. He is also on a special Vitamin B treatment (not near the B chemo though)- and this has helped the neuropathy improve. We had originally checked out Memorial Sloan Kettering, and also New York Hospital. We landed in Hackensack with Dr. Goy, who actually created the program at MD Anderson, and had also been on staff at Sloan Kettering for many years. Dr. Goy (pronounced Gwua) has seen more MCL than anyone in the world. He started out in Europe, and now, 10-15 years later, there are people walking around today who went through the protocol he set up there. We are hoping for a long, long remission as well

Your husband and Dr. Goy

Hi,  I was just diagnosed with MCL Dr Goy is my doctor also.  I have not started treatments yet.  I hope your husband is still doing well.

 

Any comments appreciated;)

ggl2013 said:

Appreciate your encouraging post

I have just been diagnosed with MCL Stage IV also.  Have not started treatments yet  In prayerful support also.

Your comments are welcome:)

Our MCL story

Hi ggl,

     Hope you are monitoring this site.  We are so sorry for your diagnosis but want to reassure you that there is a real basis for hope.  My husband was diagnosed in July '11.  He was also at Stage IV.  His rbc was 1.6 and his bone marrow was 90% packed with MCL.  He was dying.  He had a fairly new drug bendamustine with Rituxin.  Also called Treanda.  Benda was developed in Germany behind the iron curtain (don't know what they used it for) and just recently it has been used for MCL and even more recently here in the states.  Do some research on it, it is a life saver.  Due to my husband's health situation, they only gave him 1/2 dose of the chemo. This was in Aug '11.   He rallied after that one one treatment.  From then on he received 3/4 dose every 3 weeks.  We asked the doc why not up it to 100% dose since he was better and he said "Why rock the boat, since you are doing so well?"  He finished his last chemo in Feb '12.  and is on a 2 yr Rituxan maint every 2 months.  He just had his 2nd CT scan and is in complete remission.  It will be a year in Feb.  He feels better than he has in a few years.  They figure he had it for a long time before diagnosis.  Please talk to your doctor about the bendamustine/rit.  My husband had no side effects from it and no hair loss.  He was just a little extra tired about the 4th day after his chemo and would take a long nap but no nausea or anything.  They are doing a lot of research on NHL and MCL in Germany and we even emailed some doctors there and they tell us there is a lot more on the horizon.  They also reassured us that at the moment we have everything in the states that they have in Germany.  Like I said, please research bendamustine and Rituxin and also research it on this site, there are some encouraging stories about these wonderful drugs.  I will monitor this particular site if you have any other questions.  Please be assured of our concern and well wishes for you.  You are not alone in this battle.  Bill and Becky

MrsG981 said:

Hiccups
My 63 year old husband was diagnosed with CLL in 2008. After treatment he was in remission for 20 months before it came back again. Another round of chemo for CLL gave him only 2 months of remission. We found out the cancer was back again in February of 2011 when he had his tonsil removed and the biopsy showed it was MCL.Since then he had lymphomas appear in his neck and a fast growing lymphoma in the orbit behind his right eye, in his lung and in his testicle. Last week he checked in at Yale Smilow Cancer Center for three days of a really strong chemo that he seemed to tolerate pretty well until it gave him hiccupps. Of all the symptoms he has had to endure this is the one that is killing his fighting spirit. He has been taking progressively stronger muscle relaxers but they only work for a few hours at most. He is afraid to move or eat in case they get worse. Did anyone else have this problem? Did anything help get rid of them? He has to go for a second round in 2 weeks and this side effect is the one he fears most.

Mantle Cell Treatment and Hiccups

I received Hyper CVAD back in 2005-2006 for MCL.  Hiccups were annoyingly common.  Also several other side effects...   We tried all of the normal home remedies, sometimes those worked.  But when it was really bad for three straight days, my Dr tried a drug called Thorzine.  Spelling may be incorrect, but it is a drug used for mental illness.  Mental illness has nothing to do with the hiccups, but it worked better than anything else.  The treatment is horrible, but I am still here 6 1/2 years later.  Stage 4, in bone marrow, lymph nodes, gastric involvement, and more...  If I can do it, so can you.  I lost all of my savings, all my "stuff", and my great job, but I still have my family and I am still alive!    It really is all about having a positive attitude to beat MCL.  My treatment was at MD Anderson Cancer Center in Houston, Texas.  Dr Michael Wang.   Good Luck and God Bless!

Ron Carman

Mantle Cell Lymphoma

Hi all,

My father has been diagnosed with MCL Stage 4, age 59. He is undergoing chemo R-CHOP 6 cycle. In his 3rd cycle Rituximab reacted and he vomited, so doctor discarded and gave only CHOP. Now in 4th cycle they will go for Rituximab again, if reacted they will drop it and go for only CHOP. Please let me know what are the effect if we go for only CHOP. Also can MCL be cured and what about prognosis. We are having a very hard time, i just passed from college and started my career and i have one younger brother and mother to look after. We are fighting hard and doing whatever we can do. Need help of all, i don't know how to go about it. 

ankit pandey said:

Mantle Cell Lymphoma

Hi all,

My father has been diagnosed with MCL Stage 4, age 59. He is undergoing chemo R-CHOP 6 cycle. In his 3rd cycle Rituximab reacted and he vomited, so doctor discarded and gave only CHOP. Now in 4th cycle they will go for Rituximab again, if reacted they will drop it and go for only CHOP. Please let me know what are the effect if we go for only CHOP. Also can MCL be cured and what about prognosis. We are having a very hard time, i just passed from college and started my career and i have one younger brother and mother to look after. We are fighting hard and doing whatever we can do. Need help of all, i don't know how to go about it. 

why not treanda?

Hi Ankit,

     Bill was also diagnosed at stage 4 with 90% bone marrow involvement.  As stated previously he received bendamustine (treanda)/rituxan.  He had no problems with rit or the benda.  No side effects, no hair loss.  It is too bad they didn't put your father on it, but they are the docs and supposedly know better.  It just seems that  treanda is now the chemo of choice for MCL.  We hope he can tolerate the rituxan as it is a marker for the chemo to make sure and kill the cancer cells.  The usual treatment after chemo is to continue with rituxan for 2 years to keep marking the cancer cells in hopes that the immune system will kill them as they appear.  Perhaps since RCHOP is hard on the system the rit is not as tolerated.  I hope this helps, maybe you can ask the doctor about the treanda.  We wish you the best and know how difficult it is to deal with all of this.  Just know they are making great advances with MCL and like we have seen, remission is more and more successful, your dad will be feeling much better soon.

Feel free to ask any ???? and please let us know how your dad is progressing.  Our very best to your family, Bill & Becky