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Mantle cell lymphoma - need survivor stories

eeyora
Posts: 2
Joined: Jun 2005

My husband (42) has just been diagnosed with mantle cell lymphoma. He will be starting hyper-CVAD with rituximab probably next week. Then, he is going to have an autologous stem cell transplant. I would really appreciate any survivors out there who can let us know what he should expect and offer some hope that he has a chance of beating the dismal odds we've read about. We've got 2 kids under 2 yrs. old with abother one on the way, and we are having a really hard time with this. We need some hope.

maxdaddy
Posts: 1
Joined: Jul 2005

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.

eeyora
Posts: 2
Joined: Jun 2005

Thank you for your honest response. This helps me to know what to expect. I hope that you continue to grow stronger every day and live a long and happy life.

pingme
Posts: 4
Joined: Mar 2009

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.

joti
Posts: 1
Joined: Jun 2009

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.

gmusgrove
Posts: 15
Joined: Mar 2009

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

rbrandw
Posts: 4
Joined: Mar 2010

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.

letsmini
Posts: 2
Joined: Feb 2011

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.

MrsWard2002
Posts: 1
Joined: Oct 2009

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.

msdina257
Posts: 6
Joined: Jul 2009

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

Skipatrol007
Posts: 4
Joined: Jan 2010

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

grannyx4
Posts: 2
Joined: Feb 2010

My son (31) was diagnosed the end of July 09 with Mantle Cell. What a blow. I had
been telling Chris for almost 3 years that he needed to go get the lumps on his neck
checked. I guess ignorance is bliss in his mind. But finally after my constant nagging,
he went. Before the biopsy, they told him he had cancer. The biopsy confirmed the mantle cell. Immediately, he was accepted at Memorial Sloan Kettering in NYC. We live in Orange
and Ulster County in New York. Their regime for treatment is to start with R-CHOP for two
months, RICE for about 5 weeks. Currently he is in the hospital starting chemo (BEAM)
in preparation for the stem cell transplant. That is scheduled for late next week.
From what the onc's here say, they believe that the most aggressive treatment up front
can get a longer remission. I hope that they are right. Thankfully, he was able to
do everything (work related) with a few days here and there which were a little rough.
There were some side effects from the chemo. Hopefully they will not be permanent.
Good Luck and many Blessings. If there is anything I can do for you, please don't hesitate
to ask.

2407
Posts: 1
Joined: Dec 2010

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.

Nikki64
Posts: 1
Joined: Jan 2011

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's picture
Hulsy
Posts: 11
Joined: Jan 2011

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

ggl2013
Posts: 3
Joined: Jan 2013

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

Your comments are welcome:)

illead's picture
illead
Posts: 544
Joined: Aug 2012

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

GDM
Posts: 2
Joined: Feb 2011

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.

JAM-Man
Posts: 3
Joined: Apr 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 :)

rbrandw
Posts: 4
Joined: Mar 2010

Jam-man What was the treatment you received by Dr. Guy? Looking for treatment plan for my 66 year-old father who has been on two regimens of treatment for mcl already and must look for other method of relapsed disease now. thank you.

ggl2013
Posts: 3
Joined: Jan 2013

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;)

richthomson
Posts: 1
Joined: Mar 2013

Be sure to check all treatments and studys, I did and decided on MSK 65th street NY. Worked for me so far!

gaetano
Posts: 1
Joined: Apr 2013

Hi,

I came across this blog and saw your posting. I live n the area and decided not to go to Overlook and went straight to Hackensack. This is regarding my dad not me. He was just diagnosed with MCL and we are seeing Dr. Goy. Just started the process and will find out his suggested treatment on Monday. I was just wondering how your husband is doing and what treatment he received. 

Thank you for your time. I hope he is doing ok.

 

Lisa

 

serious woman
Posts: 1
Joined: Feb 2010

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.

gmusgrove
Posts: 15
Joined: Mar 2009

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

Djzlady96
Posts: 6
Joined: Jun 2012

Hi. My husband is going through RCHOP for mantle cell. I found your post dated 2010 and wondering how things are going now in 2012.

Thanks Djzlady96

rbrandw
Posts: 4
Joined: Mar 2010

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.

GDM
Posts: 2
Joined: Feb 2011

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.

Hulsy's picture
Hulsy
Posts: 11
Joined: Jan 2011

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

Skipatrol007
Posts: 4
Joined: Jan 2010

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

msdina257
Posts: 6
Joined: Jul 2009

Hi Rich,
My husband 42 found out he had Mantle Cell in May 2009. Started the journey in December with lots of going back and forth to the Dr. test after test before the biospy in May. We started treatment in June with R-Maxi-chop. alternating Ara-C (Nordic protocol) and the Stem Cell transplant in November. He was very healthy going into the treatment and did very well. He had to stay 3 weeks in the hosiptal during the transplant and had about 5 rough days and transplant but overall I was happy with how things went. Its so hard to find information on Mantle Cell, but I have read of up and coming advances. Good luck to you and God will guide you though, he did us. You can email me at msdina257@aol.com if you like.

Dina

lnewsome62
Posts: 3
Joined: Jan 2010

Hey Skip. I was diagnosed with MCL on February 5, 2009. I was stage IV with one lymph node involved and "slight" bone marrow involvement. We elected to go with HyperCVAD in patient treatment and spinal treatment as a precaution as MCL can penetrate the spinal cord and brain. After 6 inpatient treatments all my reports came back negative. I had two more treatments for good measure and elected not to have a stem cell transplant. I was 46 years old when diagnosed (and female). All my test in December came back negative again. Praise and Glory to God. By His stripes I am healed. Keep a positive attitude, speak life and know that He will never forsake you and you are never alone, He is always with you.

pldgsph
Posts: 1
Joined: Nov 2010

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

lsk1000
Posts: 1
Joined: Apr 2012

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.

DadysGirl
Posts: 322
Joined: Aug 2011

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...:(

andyd987
Posts: 1
Joined: Aug 2012

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.

ricksgirl
Posts: 2
Joined: Oct 2012

Hi ISK1000-

My dad is just diagnosed with MCL - staging to be done this week after bone marrow biopsy and CT scan at Dana Farber. Right now they are saying 3 rounds of chemo, followed by radiation (his tumor was in the right tonsil). He has said nothing about a stem cell transplant. Even if he is stage 1 (which is current thought - rare, I know) I worry that he won't push for that. I feel miserable and sad - super close with my dad and he is a special grandpa (age 67) to my 4 kids. Thoughts? Any advice or thoughts help.

Thanks

angel531
Posts: 4
Joined: Apr 2013

To Isk1000,

My dads case seems to be similar to yours. How are you doing?

This is my dads case:

My dad was diagnosed with Mantle cell about 5 years ago. He 1st did 40 rounds of radiation where he found his 1st tumour in his lymphnode in his groin ares. Exactly a year later, he found another in his neck and underwent surgery to remove it. They decided to do a round of radiation a year later, since they didn't remove all of it during the surgery. Last spring, they found approx. 6 tumours in his stomach and other areas of his body. They decided to do the 'watch and wait' till about Nov. of 2012 and started R-CHOP chemo once every 3 weeks and had approx 20 rounds. 2 weeks ago, he had a tube-like thing put in his chest to take his stem cells out in a couple of weeks and also in that same week he had intense chemo (not sure what kind) to increase his stems cells and also got neupogen to do the same thing. May 16, he will go into the hospital for 3 weeks. During those three weeks, the 1st week he do 6 days of intense chemo (I'm not sure what kind) and then he will have his own stem cells put back into him.

 

I hope all is well! Prayers are with you all!

Kristie

genoand5
Posts: 1
Joined: May 2013

I read your post about your Dad and it kinda reminded me of myself. I was diagnosed at the end of 2009 when I was 50 yrs old. I had 2 tumors around my right eye, one large and one very small. After the biopsy and initial scans, I was told I had a couple more tumors in my throat and they suspected it was in my bone marrow also. I am very fortunate and blessed to be in California and to be treated initially at the City of Hope. The doc there told me that they wanted to treat it very aggessively and that he was confident I would be cured. I told him to "go for it" and I was encouraged. Their approach did not include any operations or radiation, only a lot of chemo. I had 4 rounds of chemo a month apart. Each round was about 4 or 5 days straight of chemo, in a hospital bed. So 4 months of that, then there was a waiting period with some scans and maintenance (out-patient) chemo sessions. After about another month the scans and tests came back clean and the prepared me for a stem cell transplant. Once I was "clean" I wanted them to collect the cells ASAP. I had the transplant at UCLA. I also had the catheter in the chest (after they took the one out of my arm), and the neupogen and some other stuff to increase my cell production. Collecting the cells was problematic and it took a couple weeks longer than anticipated. But then in Aug 2010 I finally started and I was in the hospital for 21 days. I stayed home for about another 6 weeks, then I was back at work full time that October. So this Aug will be 3 years clean.

I don't know where your Dad is being treated and I'm no expert, but if he's "clean" enough for them to gather good stem cells, then I certainly expect after the transplant that he'll be on the road to recovery. Be sure his immune system is in good enough condition to go home before you let them release him. With a weak immune system it's very, very easy to get sick. I know because I got pnemonia a week after my second round of chemo because I went shopping with my wife. I didn't know my immune system was almost wiped out from the chemo. After the stem cell transplant, the doc didn't want me to go outside or pet the dog for at least another month. And one thing super important after going home from the transplant ... drink water, drink water, drink water. The chemo kills fast growing cells, which includes the digestive tract. So when I started eating kinda normally again, I backed up so bad!! I was miserable. During the hospital stays they always had me hooked up to fluids so I got out of the habit of drinking water (besides, I didn't feel like it because of the nausea). Back recovering at home, I wasn't drinking enough and the nurse told me I had become dehydrated.

I hope this helps. Pray, pray, pray (I'm sure you already are!) I will pray for your Dad too; for his success, for his courage to just keep on going, and for peace in your family.

Gene

Thetruth6653
Posts: 4
Joined: Oct 2012

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.

lnewsome62
Posts: 3
Joined: Jan 2010

Hey Maxdaddy,
Are you still around?

maite
Posts: 1
Joined: May 2009

Hola,

Mi marido también fue diagnosticado de linfoma del manto en el 2006 y también a los 42 años. El ha hecho tratamiento con hiper-cvdad + Zevalin. Se encuentra en remisión completa y así espero que sea por mucho tiempo. Espero que tu marido se encuentre bien y si os parece bien me gustaría poder compartir información. Mí dirección es maite1rubio@gmail.com.

Un abrazo,

Maite.

hillsville
Posts: 1
Joined: Jan 2010

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
Posts: 15
Joined: Mar 2009

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

nextiraone
Posts: 2
Joined: Jan 2010

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.

Skipatrol007
Posts: 4
Joined: Jan 2010

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

anndc
Posts: 1
Joined: Feb 2010

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..

gab-mary
Posts: 1
Joined: Apr 2011

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

pedziebaby
Posts: 3
Joined: Apr 2011

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!

Terry1945
Posts: 1
Joined: Nov 2010

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.

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