Mantle cell lymphoma - need survivor stories

gmusgrove

serious woman said:

mantle cell
I was just diagnosed with mantle cell on 2/8/2010. Had my first RCHOP21 on 2/12 and will be doing 6 cycles with a stem cell transplant a possibility later on. I am a 61 y/o female and had symptoms of slight fatigue and shortness of breath. During the holidays 2 bruises showed up on my arm and leg. Since childhood asthma resurfaced in early 2009 I thought the symptoms other than the bruising was related to the asthma.

My blood work came back bad and after many tests, including a bone marrow biopsy, I was diagnosed with stage4 mantle cell with a lot of the disease in my bone marrow.

Doctors are upbeat, my side effects from the first treatment were minimal and I am trying to be as positive as I can be.

mantle cell lymphoma
Hi serious woman,

Sorry to hear about your d/x of MCL. I am 53 years old and will be a 2 year survivor in April from MCL. I went through R CHOP chemo and then BEAM chemo and had a stem cell transplant in 2008. Been cancer free since December 2008. My MCL was not in my bone marrow and was my own stem cell donor. MCL is rare but there is a lot of research being done and have been done in the last few years to treat it.

Praying that you will win your battle with cancer.

gmusgrove

anndc

Skipatrol007 said:

Your prognosis is
Your prognosis is encouraging! Sounds like you are doing well 6 years later. Did you also receive a stem cell transplant? If not why? Looking over the posts seems like that is the "standard" treatment.

I am considering a clinical trial OHSU-4180 which includes drugs Rituxan, Cladribine and Vorinostat with no stem cell transplant. Was advised by Dr. these drugs should put me into a long term remission (5+years). They are not as hard on your body and can be done on an out patient basis. The Dr. advised I could always go the other route, heavier chemo drugs + stem cell transplant if it came back or perhaps other treatments would be available at that time.

I hope you have continued good health and beat wishes to all faced with this disease and to their family and friends whom share the journey.

Best Wishes,
Rich

localized mantle cell lymphoma
they say I am the rare bird.. I was diagnosed in nov. 2009 with localized mantle cell lymphoma...It has not spread to anywhere else in my body..just 2 sets of lymph nodes in my groin area... the one.. the surgeon removed was about 3 cm.. After going thru all the test and they came back good... the dr's reccomended that I have external radiation to that area for 25 treatments... then another pet scan in 2 to 3 months...
I am very lucky but literally scared to death....I have no symptoms.. other than I have had lymph nodes in the pelvic area. swell out.. and had two of them removed surgically...
I am 52 year old female in good health..

rbrandw

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 located in my colon. I had six cycles of R CHOP chemo. A chemo treatment every 21 days. 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 clear. Did transplant in Dallas, TX. Transplant time was 30 days. Very rough time for about 6 months during treatment. I had my last 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

My father was diagnosed with
My father was diagnosed with MCL 14 months ago. He began treatment in Sept 2009 and just finished sixth round of RChop. His pet scan was clean and he is waiting for results on his bone marrow. He is 64, feels great and hardly missed a day of work during the treatment. His doctor says he is the perfect candidate for a stem cell transplant but he is terrified! He prefers to go without, and wants to go for maintenance chemo. Thinks the stem cell transplant will make him terribly sick. How did you do with the transplant? He needs lots of encouragement.

rbrandw

serious woman said:

mantle cell
I was just diagnosed with mantle cell on 2/8/2010. Had my first RCHOP21 on 2/12 and will be doing 6 cycles with a stem cell transplant a possibility later on. I am a 61 y/o female and had symptoms of slight fatigue and shortness of breath. During the holidays 2 bruises showed up on my arm and leg. Since childhood asthma resurfaced in early 2009 I thought the symptoms other than the bruising was related to the asthma.

My blood work came back bad and after many tests, including a bone marrow biopsy, I was diagnosed with stage4 mantle cell with a lot of the disease in my bone marrow.

Doctors are upbeat, my side effects from the first treatment were minimal and I am trying to be as positive as I can be.

My father just finished his
My father just finished his sixth round of RChop and was great throughout! Hardly missed a day of work. Keep your chin up and you'll do fine. Good luck.

wnbigler

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

pldgsph

Skipatrol007 said:

Mantle Cell
Hello, I was recently diagnosed with Mantle cell lymphom, back in Sept 2009. My local Onc wanted to put me on heavy duty chemo where by I wound be hospilized but suggested we get other opnions. I went to Hershey Mecical Center in Hershey PA. Their is a Dr. Elliot Epner whom "specializes" in mantle cell. I do feel very comfortable with him and his team. He has suggested an alternative treatment using Rituxan, Cladribine, and Vorinostat. These are much less toxic to the body and can be done on an outpatient basis. He has had very good success rates in patients whom he has treated in this fashion. Of course the low toxicity of these chemo's is appealing to me. I had another opion from Fox Chase Cancer Center in Philly and they recommended the standard treatment of heavy duty Chemo + a stem cell transplant. I am having a hard time deciding what to do as the heavy duty chemo + stem cell gives a 70%+ cure rate but is very hard on the body. Dr. Epner feels that he can put my cancer in a long term remission or cure it altogether with the lighter treatment and no transplant at this time. We would go down that road later if need be. I am 48 and in good health and decent shape. I never thought I would have to deal with this, how your goals in life change real quick, a few months ago the future was wide open and bright now I feel like I have a dark cloud over me. I live alone and am self employed so it makes it harder for me to keep this out of my mind and think positive. Although I beleive in God and hope he will direct me to the right Drs. and treatments, and friends for support. My God be with all of us and our families. If anyone is out their that has mantle cell I would be interested in knowing how things have gone for you. Thanks to all. Rich

Mantle Cell & Dr. Epner
Has anyone been treated with Dr. Elliot Epner's protocol? If so, what were your results from the treatment?

Terry1945

hillsville said:

first round of chemo didn't reduce tumor size
Hi,

I'm 65 and was diagnosed with mantle cell lymphoma in November after a routine colonoscopy.

I just finished a series of chemo (chop). It did not reduce the tumor -- just kept it at same size.

Does any have a similar experience, and what did you do.

Hillsville My Experience with MCL
My MCL in the colon was found as a second relapse of the disease; since I had so many different treatments it seemed no one wanted to treat me. After seeking more opinions, it was decided to try Rituxan. This worked fantastically for me and I was in remission for seven years with maintenance program using rituxan. I was lucky and had no reaction to the treatments. My Email address if you want more information is carterfake70@gmail.com I currently have a lung problem which may or may not be related to the rituxan treatments.
My MCL was of the indolent type and my original diagnosis was April 1996.
Hang in there to all of you that have a diagnosis of MCL.

Suki7

Terry1945 said:

Hillsville My Experience with MCL
My MCL in the colon was found as a second relapse of the disease; since I had so many different treatments it seemed no one wanted to treat me. After seeking more opinions, it was decided to try Rituxan. This worked fantastically for me and I was in remission for seven years with maintenance program using rituxan. I was lucky and had no reaction to the treatments. My Email address if you want more information is carterfake70@gmail.com I currently have a lung problem which may or may not be related to the rituxan treatments.
My MCL was of the indolent type and my original diagnosis was April 1996.
Hang in there to all of you that have a diagnosis of MCL.

MCL
So glad I found this web site, knowing there are other people out there that I can talk to that has been dealing with disease. I was diagnosed in Feb. 2008 with NHL, relapsed about three months after treatment. I had another bone marrow done and was diagnosed with MCL stage IV, I had intense chemo followed by allogeneic stem cell transplant. My 18th month was in Sept. CT Scan and bone marrow was done, all looked great. Tomorrow Dec. 8th I go in for another CT Scan. I'm sure things will be ok, but it really scares me.

So glad you could do the Rituxan, It's a great drug for MCL. I had a bad reaction to it so my treatments were shortened. Remission for seven years that's awesome!


Well I hope to chat sometime.
Take care,
Suki

2407

Skipatrol007 said:

mantle cell
Hello, I had been diagnosed with mantle cell too. I live in PA and am 48 male, single and eat a healty diet. I found a lump on my neck back in June and seen my dr whom told me it was most likey nothing to worry about, three months later I was in to see a ear,nose,throat sp and he did a biopsy and gave me the news of it being a lymphoma, non-hod. Than I was referred to an onc whom at first glance thaough it was a "regular type indolent" type but further tests concluded it was mantle cell. The specilists I have seen told me that this type of cancer can be both indolent or agressive and luckly mine is on the indolent side. I am just now deciding which route is best to take at this time. I am presented with a lower toxicity chemo plan or the heavy in hospital chemo with a stem cell transplant. The one Dr. is very confident he can "cure" me with this treatment.

I hope you are doing well and will write me of your experiances. You can contact me here or via my e-mail at skibum789@aol.com

God Bless and Best Wishes

Help to find a good treatment centre
Hi my dad was diagnosed with mantle cell lymphoma about 4 weeks ago. He is also aged 48 and has never been very ill in his life. He is active and everything else about him is very healthy. We live in London and he is attending a hospital here, however, we are looking for better options in terms of treatment and hopefully a cure.

He is at stage III it has not reached his organs or bone marrow, it started off in his neck and there is slightly mild high uptake in his inguinal and iliac lymph nodes shown on the PET CT. They want to start him on Cyclophosphamide, Doxorubicin, vincristine and steroids. From what I know hospitals in the USA are better for treating this type of cancer. And from all the stories I hear hyperCVAD is best for treating this. As well as a stem cell transplant.

They have decided to start the treatment in 3 weeks, which I feel is too long a wait, and I'm not sure this is the best chemo combination.

As We live in the UK we don't know much about Hospitals in America, so please please please could the survivors of mantle cell lymphoma recommend a few good hospitals and doctors to look into. We are desperately trying to find new options as I feel this cancer can be cured. He has 5 children the youngest being 20 months old, we don't want to lose him. He is strong and healthy and I feel no matter what the side affects are he can overcome them.

Hulsy

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

It was very uplifting to
It was very uplifting to read your story. It gives me hope for my future. In March it will be one year since I had my stem cell transplant. I start my vaccinations this March. Did you have any problems with your shots? I am female and was 60 when diagnosed.--gayle

Nikki64

2407 said:

Help to find a good treatment centre
Hi my dad was diagnosed with mantle cell lymphoma about 4 weeks ago. He is also aged 48 and has never been very ill in his life. He is active and everything else about him is very healthy. We live in London and he is attending a hospital here, however, we are looking for better options in terms of treatment and hopefully a cure.

He is at stage III it has not reached his organs or bone marrow, it started off in his neck and there is slightly mild high uptake in his inguinal and iliac lymph nodes shown on the PET CT. They want to start him on Cyclophosphamide, Doxorubicin, vincristine and steroids. From what I know hospitals in the USA are better for treating this type of cancer. And from all the stories I hear hyperCVAD is best for treating this. As well as a stem cell transplant.

They have decided to start the treatment in 3 weeks, which I feel is too long a wait, and I'm not sure this is the best chemo combination.

As We live in the UK we don't know much about Hospitals in America, so please please please could the survivors of mantle cell lymphoma recommend a few good hospitals and doctors to look into. We are desperately trying to find new options as I feel this cancer can be cured. He has 5 children the youngest being 20 months old, we don't want to lose him. He is strong and healthy and I feel no matter what the side affects are he can overcome them.

Treatment Centre
HI my husband has just been diagnosed with Mantel Cell but we havent had it staged yet or got a treatment plan - like you I have heard hyperCVAD is the best treatment + stem cell but I haven't told him yet.
Where are you being treated - we have been recommneded the London Oncology clinic but don't want to travel from Cambidge

I hope your dad is doing ok from what I read the treatment is hellish.

Take care

n

Hulsy

Nikki64 said:

Treatment Centre
HI my husband has just been diagnosed with Mantel Cell but we havent had it staged yet or got a treatment plan - like you I have heard hyperCVAD is the best treatment + stem cell but I haven't told him yet.
Where are you being treated - we have been recommneded the London Oncology clinic but don't want to travel from Cambidge

I hope your dad is doing ok from what I read the treatment is hellish.

Take care

n

Treatment
In July 2009 I was diagnosed with stage IV Mantle Cell Lymphoma. I had very toxic treatment....kind of a combination of hyper C vad and R chop followed by autologous stem cell transplant in March 2010. I am feeling ok, but am nervous for my next round of PET/CT scans next month. I was told I received the latest in treatment available for MCL and to go and live my life....so I am, but it is hard to 'shake off' the fear of relapse.

I had 6 treatments, each one week long in the hospital in our city, over 7 mos. I got through it day by day and was told by dr. not to be looking at MCL articles on internet as treatment and outcomes were changing rapidly and a lot of the info out there is negative and outdated. My stem cell transplant was done at a hospital on the other side of our state (Michigan)

So, I went forward with positive thoughts and got through the treatment. Looking back, yes it was bad and I was very sick. But through the grace of God I got through it. Positive outlook, sense of humor and prayerful support of friends and family really helped.

I wish your husband best of luck. It is a journey to be sure and there really are 'gifts' along the way....the appreciation of every moment of your life intensifies.

It is hard dealing with the initial shock...it helped me to talk to someone who had gone through it. It took me four times to get the courage to contact this person because I was unsure of what to ask....but the conversation was so helpful! When had to go through the same thing, I remembered what this friend told me.

Also, we have a wonderful resource/support center through a 'Gilda's Club' in our city. The support groups for family and caregivers were wonderful. Wish I could be there for a cup of tea and discussion with you.

You can get through this.

In prayerful support.
G

letsmini

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 located in my colon. I had six cycles of R CHOP chemo. A chemo treatment every 21 days. 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 clear. Did transplant in Dallas, TX. Transplant time was 30 days. Very rough time for about 6 months during treatment. I had my last 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

Hello,
My father was
Hello,

My father was recently diagnosed with Mantle Cell Lymphoma. He is missing a Q13 gene along with P17 gene...both cancer fighting. He is about 65 years old and not the most in-shape person I know... I am really scared and would love any information that you can pass along.

Thank you.

GDM

MrsWard2002 said:

Mantle Cell Lymphoma Stage 4 Diagnosed 2/12/09
By now you probably already have gone through some chemo treatments. How are they going and what kind are you getting? I got Rituxin before chemo started each time, H-CVAD, every 21 days I entered the hospital for a 3 to 5 day stay. I had week A & week B....so every other time I went in the chemo changed. I had swollen lymph nodes under my arms, in my abdomen, in my groin and "slightly" positive in my bone marrow. Traces of cancer cells found during the endoscopy and colonoscopy. After the 3rd round of chemo, another bone marrow biopsy came back negative. Ater the 5th chemo I had another PET scan and CT scan and it showed the lymph nodes were normal. Over the course of chemo I had to have blood & platelet transfusions. After round 5, my platelets did not come back up to the 100,000 needed in order for round 6. I had already had my own stem cells harvested after chemo 4 to be kept for the transplant. The Doctors at Dana-Farber in Boston, MA said skip chemo 6 as they were gonna give me chemo anyway. I spent 3 weeks in the Boston hospital; 4 days of chemo and my transplant on Aug 11th -- my new birthday!

Since arriving home on Aug 25th, I've had lots of Dr appts (in Maine every 2 weeks and been back to Boston 3 times so far); lots of CBCs; blood and platelet transfusions; ran a temp and spent 5 nights in the hospital (never did find out what was wrong with me); my blood numbers are struggling to get back to normal. Most days I feel pretty good; I may tire a little more quickly then I used to, but a few minutes of sitting down and I am good to go.

From what we were told is that chemo alone is a 40% chance of cure and with stem cell transplant it raises it to 70%.

I would like to hear how you are doing and how your treatment is. If you would like to email me or just post, I'd be happy to answer any questions. I've been looking for someone who has this rare form of cancer -- just to have someone who understands what I am going through. By the way, I just turned 47 yesterday, female, married, one son/17 and two stepsons 30 & 23.

God bless and good luck.

My husband has been recently
My husband has been recently diagnosed with Mantel Cell and is receiving Hyper CVad and they are now sending us to see about stem cell transplant as well. He is a 59 year old and very healtly guy otherwise and never sick. How have you done with the stem cell? We are just learning all that is involved and must say a little un-nerved. He has completed cyle 2A and will ge going back in for for 2B in another week. His early scans (done last week) look promising and I want to grab every oppurtunity to keep this in remission. How do you think the stem cell helped you. Any words would be greatly appreciated!

God Bless.

GDM

2407 said:

Help to find a good treatment centre
Hi my dad was diagnosed with mantle cell lymphoma about 4 weeks ago. He is also aged 48 and has never been very ill in his life. He is active and everything else about him is very healthy. We live in London and he is attending a hospital here, however, we are looking for better options in terms of treatment and hopefully a cure.

He is at stage III it has not reached his organs or bone marrow, it started off in his neck and there is slightly mild high uptake in his inguinal and iliac lymph nodes shown on the PET CT. They want to start him on Cyclophosphamide, Doxorubicin, vincristine and steroids. From what I know hospitals in the USA are better for treating this type of cancer. And from all the stories I hear hyperCVAD is best for treating this. As well as a stem cell transplant.

They have decided to start the treatment in 3 weeks, which I feel is too long a wait, and I'm not sure this is the best chemo combination.

As We live in the UK we don't know much about Hospitals in America, so please please please could the survivors of mantle cell lymphoma recommend a few good hospitals and doctors to look into. We are desperately trying to find new options as I feel this cancer can be cured. He has 5 children the youngest being 20 months old, we don't want to lose him. He is strong and healthy and I feel no matter what the side affects are he can overcome them.

2407
My husband was
2407
My husband was diagnosed in early December 2010, we are still trying to get as much info as possible on MCL and are very anxious as I am sure you are. We are involved with Overlook Hospital in Summit, NJ. We were also sent to Hackensack University Medical Center in Hackensack, NJ for second opinions and opinions on stem cell transplant. Both are treating cases of MCL. Keep me posted on your progess and I will do the same. I hope for recovery for all of us.

Hulsy

GDM said:

My husband has been recently
My husband has been recently diagnosed with Mantel Cell and is receiving Hyper CVad and they are now sending us to see about stem cell transplant as well. He is a 59 year old and very healtly guy otherwise and never sick. How have you done with the stem cell? We are just learning all that is involved and must say a little un-nerved. He has completed cyle 2A and will ge going back in for for 2B in another week. His early scans (done last week) look promising and I want to grab every oppurtunity to keep this in remission. How do you think the stem cell helped you. Any words would be greatly appreciated!

God Bless.

GDM
I'm female and coming up to my one year anniversary since the stem cell transplant. I also did the HyperCVad. Had trouble in round 4 with neuropathy from the vincristine. They stopped vincristine and neuropathy did go away. Also had to battle pneumonia...that was worse than the chemo experience.

The SCT went well, I think it was actually easier than the 6 rounds of chemo. It sounds like a huge thing, but the actual process of the transplant was okay. My 6 mos. PET/CT scans were clear...looking forward to more good results next month. I'd be happy to talk more about it with you if we could get in contact. It helped me greatly to talk to someone who went through similar treatment prior to my ordeal...she had stage 2, mine was stage 4....the journey and rallying was similar. I was 60 when diagnosed in July 2009. I never thought I would ever feel as good as I do now. It is a new normal and I have to take some rests during the day...but each day is a blessing.

Prayers and positive outlook work wonders.

hulsy

pedziebaby

Skipatrol007 said:

Your prognosis is
Your prognosis is encouraging! Sounds like you are doing well 6 years later. Did you also receive a stem cell transplant? If not why? Looking over the posts seems like that is the "standard" treatment.

I am considering a clinical trial OHSU-4180 which includes drugs Rituxan, Cladribine and Vorinostat with no stem cell transplant. Was advised by Dr. these drugs should put me into a long term remission (5+years). They are not as hard on your body and can be done on an out patient basis. The Dr. advised I could always go the other route, heavier chemo drugs + stem cell transplant if it came back or perhaps other treatments would be available at that time.

I hope you have continued good health and beat wishes to all faced with this disease and to their family and friends whom share the journey.

Best Wishes,
Rich

Clinical trial
Hi Rich. Just wondering if you did the clinical trial at OHSU?? My husband will be starting the same trial at OHSU this coming Tuesday April 19th 2011. If you did go that route how are you doing? What can we expect? I hope everything went well with you!

gab-mary

anndc said:

localized mantle cell lymphoma
they say I am the rare bird.. I was diagnosed in nov. 2009 with localized mantle cell lymphoma...It has not spread to anywhere else in my body..just 2 sets of lymph nodes in my groin area... the one.. the surgeon removed was about 3 cm.. After going thru all the test and they came back good... the dr's reccomended that I have external radiation to that area for 25 treatments... then another pet scan in 2 to 3 months...
I am very lucky but literally scared to death....I have no symptoms.. other than I have had lymph nodes in the pelvic area. swell out.. and had two of them removed surgically...
I am 52 year old female in good health..

Rare Bird too !
Hi Rare Bird,
My name is Gabrielle, I'm a 50 yr old female and I'm from Australia. I was diagnosed on 9/3/11 ( My Wedding Anniversary ) with having Lymphoma. After an op on my right groin to remove a 3cm lymph node and further testing I was told it was Mantle cell stage 2. It's on both sides of the groin and a small cluster in my bone marrow. It is looking to be slow moving at the moment. The Dr has ordered more testing to make sure the aggressiveness of it and there will also be a team meeting to discuss my treatment. I find out on 29/4/11, hoping and praying for the best outcome.

Cheers Gabrielle

JAM-Man

GDM said:

2407
My husband was
2407
My husband was diagnosed in early December 2010, we are still trying to get as much info as possible on MCL and are very anxious as I am sure you are. We are involved with Overlook Hospital in Summit, NJ. We were also sent to Hackensack University Medical Center in Hackensack, NJ for second opinions and opinions on stem cell transplant. Both are treating cases of MCL. Keep me posted on your progess and I will do the same. I hope for recovery for all of us.

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

MrsG981

Hulsy said:

It was very uplifting to
It was very uplifting to read your story. It gives me hope for my future. In March it will be one year since I had my stem cell transplant. I start my vaccinations this March. Did you have any problems with your shots? I am female and was 60 when diagnosed.--gayle

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.