Mantle cell lymphoma - need survivor stories

I was diagnosed with stage 4 Mantle Cell when I was 43. I received 4 months of Hyper CVAD followed by a donor stem cell transplant. The treatment was no picnic - I was frequently nauseated and weak. I lost 30 pounds within a couple of months (I started at about 195) and I had a chest tube for a month because I contracted pneumonia.
There were lots of tests, some pretty unpleasant, and constant monitoring of my blood levels, blood pressure, etc. I couldn't sleep for the first couple of months and I had continuous hiccups caused by the chemo for a good six weeks.
I had many difficult days emotionally. My friends and family were almost always there for me but I spent many difficult hours by myself. The hospital was understaffed and underfunded and provided very little in the way of emotional support. You or somebody close to you have to become your own advocate and insist that you need counseling or help sleeping or treatment for nonstop hiccups or whatever is being ignored by the overworked staff.
I hated being incapacitated and feeling that my life was all about my illness. I got out of bed and walked around the hospital as much as I could. I was fortunate in that my friends and family - some of whom worked in the hospital - understood that what I needed most was company to take my mind off of things and give me something else to think about. You have to think about living as much as you can and I often needed the help of my people to do it.
The year after my transplant was not easy either. I was incredibly relieved to be out of the hospital but I had to see my doctor two or three times a week in the beginning and continue to receive various outpatient treatments. I was also always concerned that any health anomaly could send me back to the hospital - I was told that I would have to go to the emergency room of my temperature ever got up to 100. I had to have frequent transfusions for my anemia.
Eventually, things have become more manageable. It's been 2 1/2 years since my transplant. I still see my dr. about once a month and I still get Aranesp boosters for my recurring anemia and, though I have never felt quite as well as I did before (I'm never quite sure if that's due to the illness or if it's just a fact of enterting middle age), I live a relatively normal life. I've been back at work full time for about a year and a half, I do most of the things I did before - some travel, occasional bike riding, playing with my son, the usual stuff of life.
You mention dismal odds. I don't know the particulars of your husbands' case but, though I asked not to be informed about "the odds" while I was undergoing treatment, there was an article by Stephen Jay Gould that helped me a lot about not giving too much weight to "the odds." Before I began my treatment, a friend who is a physician's assistant gave me a very long talk about how the course of treatment was going to be difficult and that, to have a chance at success, I had to want to do it for myself - not for my son, not for my friends or family but for myself. Your husband can't think about the odds, he just has to determine to continue to live as well as he can every day (with as much help as he can get), don't be passive about his treatment and, though he's entitled to down days, don't ever give up.

maxdaddy said:

I was diagnosed with stage 4 Mantle Cell when I was 43. I received 4 months of Hyper CVAD followed by a donor stem cell transplant. The treatment was no picnic - I was frequently nauseated and weak. I lost 30 pounds within a couple of months (I started at about 195) and I had a chest tube for a month because I contracted pneumonia.
There were lots of tests, some pretty unpleasant, and constant monitoring of my blood levels, blood pressure, etc. I couldn't sleep for the first couple of months and I had continuous hiccups caused by the chemo for a good six weeks.
I had many difficult days emotionally. My friends and family were almost always there for me but I spent many difficult hours by myself. The hospital was understaffed and underfunded and provided very little in the way of emotional support. You or somebody close to you have to become your own advocate and insist that you need counseling or help sleeping or treatment for nonstop hiccups or whatever is being ignored by the overworked staff.
I hated being incapacitated and feeling that my life was all about my illness. I got out of bed and walked around the hospital as much as I could. I was fortunate in that my friends and family - some of whom worked in the hospital - understood that what I needed most was company to take my mind off of things and give me something else to think about. You have to think about living as much as you can and I often needed the help of my people to do it.
The year after my transplant was not easy either. I was incredibly relieved to be out of the hospital but I had to see my doctor two or three times a week in the beginning and continue to receive various outpatient treatments. I was also always concerned that any health anomaly could send me back to the hospital - I was told that I would have to go to the emergency room of my temperature ever got up to 100. I had to have frequent transfusions for my anemia.
Eventually, things have become more manageable. It's been 2 1/2 years since my transplant. I still see my dr. about once a month and I still get Aranesp boosters for my recurring anemia and, though I have never felt quite as well as I did before (I'm never quite sure if that's due to the illness or if it's just a fact of enterting middle age), I live a relatively normal life. I've been back at work full time for about a year and a half, I do most of the things I did before - some travel, occasional bike riding, playing with my son, the usual stuff of life.
You mention dismal odds. I don't know the particulars of your husbands' case but, though I asked not to be informed about "the odds" while I was undergoing treatment, there was an article by Stephen Jay Gould that helped me a lot about not giving too much weight to "the odds." Before I began my treatment, a friend who is a physician's assistant gave me a very long talk about how the course of treatment was going to be difficult and that, to have a chance at success, I had to want to do it for myself - not for my son, not for my friends or family but for myself. Your husband can't think about the odds, he just has to determine to continue to live as well as he can every day (with as much help as he can get), don't be passive about his treatment and, though he's entitled to down days, don't ever give up.

maxdaddy!
Your treatment is exactly what my Dad has been prescribed. He goes into the hospital today. Question: Where you as frustrated as we were about the long period of time from the first biopsy to diagnosis. It took three Dr's appointments after all of the tests to get a final diagnosis. To get the diagnosis we had to drive all the way to Tampa from Cocoa Beach/Titusville.

Yesterday the nurses gave us an education on the drugs. Dad had already been through ed on some of them, she had to go over the new ones. She flipped through signed and unsigned papers so much she repeated herself and left a few things out. I finally asked her for a copy of the chemo plan so I could research for myself. Lots of family wants to understand the drugs and their effects as well as the course of treatment. The journey to diagnosis doesn't sound half as bad as the journey through treatment. The studying helped me feel better, what else can I do? I want to keep my family calm.

I'm concerned. My father is not a big man. His top weight has been about 135, he last weighed in at 111 and that's after we tried to fatten him up. He was only to gain 5 pounds and now treatment will begin.

The Dr. said that after this first treatment the tonsils should go down and he'll be able to take larger bites and eat more. Not sure if the drugs will work against him in that department.

pingme said:

maxdaddy!
Your treatment is exactly what my Dad has been prescribed. He goes into the hospital today. Question: Where you as frustrated as we were about the long period of time from the first biopsy to diagnosis. It took three Dr's appointments after all of the tests to get a final diagnosis. To get the diagnosis we had to drive all the way to Tampa from Cocoa Beach/Titusville.

Yesterday the nurses gave us an education on the drugs. Dad had already been through ed on some of them, she had to go over the new ones. She flipped through signed and unsigned papers so much she repeated herself and left a few things out. I finally asked her for a copy of the chemo plan so I could research for myself. Lots of family wants to understand the drugs and their effects as well as the course of treatment. The journey to diagnosis doesn't sound half as bad as the journey through treatment. The studying helped me feel better, what else can I do? I want to keep my family calm.

I'm concerned. My father is not a big man. His top weight has been about 135, he last weighed in at 111 and that's after we tried to fatten him up. He was only to gain 5 pounds and now treatment will begin.

The Dr. said that after this first treatment the tonsils should go down and he'll be able to take larger bites and eat more. Not sure if the drugs will work against him in that department.

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.

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.

Hello,
I start checking this
Hello,
I start checking this web site off and on. There is not very many people have Mantle Cell lymphoma. My husband just got done having his Stem Cell transplant after having Maxi-chop with ara-a. He had his PET scan today and we should find out Thursday how things are going. I'm glad to hear your feeling good for what you have been though. Would love to talk to you more if you like. I'll check again for your reply in the next few days

Thank you and good luck to you as well

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.

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

maxdaddy said:

I was diagnosed with stage 4 Mantle Cell when I was 43. I received 4 months of Hyper CVAD followed by a donor stem cell transplant. The treatment was no picnic - I was frequently nauseated and weak. I lost 30 pounds within a couple of months (I started at about 195) and I had a chest tube for a month because I contracted pneumonia.
There were lots of tests, some pretty unpleasant, and constant monitoring of my blood levels, blood pressure, etc. I couldn't sleep for the first couple of months and I had continuous hiccups caused by the chemo for a good six weeks.
I had many difficult days emotionally. My friends and family were almost always there for me but I spent many difficult hours by myself. The hospital was understaffed and underfunded and provided very little in the way of emotional support. You or somebody close to you have to become your own advocate and insist that you need counseling or help sleeping or treatment for nonstop hiccups or whatever is being ignored by the overworked staff.
I hated being incapacitated and feeling that my life was all about my illness. I got out of bed and walked around the hospital as much as I could. I was fortunate in that my friends and family - some of whom worked in the hospital - understood that what I needed most was company to take my mind off of things and give me something else to think about. You have to think about living as much as you can and I often needed the help of my people to do it.
The year after my transplant was not easy either. I was incredibly relieved to be out of the hospital but I had to see my doctor two or three times a week in the beginning and continue to receive various outpatient treatments. I was also always concerned that any health anomaly could send me back to the hospital - I was told that I would have to go to the emergency room of my temperature ever got up to 100. I had to have frequent transfusions for my anemia.
Eventually, things have become more manageable. It's been 2 1/2 years since my transplant. I still see my dr. about once a month and I still get Aranesp boosters for my recurring anemia and, though I have never felt quite as well as I did before (I'm never quite sure if that's due to the illness or if it's just a fact of enterting middle age), I live a relatively normal life. I've been back at work full time for about a year and a half, I do most of the things I did before - some travel, occasional bike riding, playing with my son, the usual stuff of life.
You mention dismal odds. I don't know the particulars of your husbands' case but, though I asked not to be informed about "the odds" while I was undergoing treatment, there was an article by Stephen Jay Gould that helped me a lot about not giving too much weight to "the odds." Before I began my treatment, a friend who is a physician's assistant gave me a very long talk about how the course of treatment was going to be difficult and that, to have a chance at success, I had to want to do it for myself - not for my son, not for my friends or family but for myself. Your husband can't think about the odds, he just has to determine to continue to live as well as he can every day (with as much help as he can get), don't be passive about his treatment and, though he's entitled to down days, don't ever give up.

Hey Maxdaddy,
Are you still
Hey Maxdaddy,
Are you still around?

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.

gmusgrove said:

mantle cell lymphoma
Hi hillsville,

I was 52 years old when I was told that I had MCL (April 15, 2008). My MCL was located in my colon and other areas of the admon. My cancer was found by a colonscopy. After seeing a oncologist, I was started on 6 rounds of R CHOP chem. A treatment every 21 days. I had another colonscopy after 2 treatments and it showed a reduction of the cancer. I had an additional 2 treatments and then another colonscopy. It showed a major reduction of the cancer. My oncologist talked about doing a stem cell transplant (SCT). I had two more treatments of Rituxin while waiting on insurance approval for the SCT. I had the SCT on Sept. 4, 2008. I had a colonscopy on Dec. 12, 2008 and it show no sign of MCL in the colon. It was a very hard time during the treatments and the SCT. But now I am being watch by oncologist every 3 months and still cancer free after 14 months. I pray that your chemo will start to kick in and reduce your cancer. MCL is a rare cancer and it not often that I get to talk to someone battling MCL. I did have 4 colonscopy in 2008. I have had two more in 2009.

gmusgrove

Future
After a few issues I have gotten here.

I am being treated at MD Anderson Houston Tx.

I was diagnosed with MCL in December 2004. After 8 cycles of HYPERCVAD I was totally clear. I actually achieved partial remission after 4 cycles, but my oncologist thought continuation was the best path. Lucky me.(sic)

I have undergone tests every six months there after and have remained in remission.

I have just gone in for my latest test and feel extremely confident that all systems are. go.

I only want to take this opporunity to say to all the folks that have been diagnosed with MCL that "it is what it is". You have to deal with it and it can be dealt with.

Keep a positive attitude and follow your doctors advice, as much as you may object.

I hope this post encourages others and wish everyone well.

nextiraone said:

Future
After a few issues I have gotten here.

I am being treated at MD Anderson Houston Tx.

I was diagnosed with MCL in December 2004. After 8 cycles of HYPERCVAD I was totally clear. I actually achieved partial remission after 4 cycles, but my oncologist thought continuation was the best path. Lucky me.(sic)

I have undergone tests every six months there after and have remained in remission.

I have just gone in for my latest test and feel extremely confident that all systems are. go.

I only want to take this opporunity to say to all the folks that have been diagnosed with MCL that "it is what it is". You have to deal with it and it can be dealt with.

Keep a positive attitude and follow your doctors advice, as much as you may object.

I hope this post encourages others and wish everyone well.

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