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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.

Suki7
Posts: 2
Joined: Dec 2010

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

Thetruth6653
Posts: 4
Joined: Oct 2012

I'm gonna ask my doctor in Canada do he have anything for lymphoma and get back tomorrow until then fight with faith.

wnbigler
Posts: 1
Joined: Jun 2010

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

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

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

MrsG981
Posts: 2
Joined: Nov 2011

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.

donna87
Posts: 9
Joined: Nov 2011

Ok so I am not a mantle cell survivor but I am an oncology nurse and I am extremely close to a patient that has stage four mantle cell and is receiving hyper c vad. I don't know what stage he is but I will also not sugar coat it cancer is tough no matter what but I can tell you the one thing that has made this women do as well as she has is her positive thinking she has never questioned whether she will beat this, she says she knows she will. I assume your husband is young since you have very young children and that is on his side. Do lots of praying stay close to your higher power and use positive thinking and he will do fine. Also follow all the doctors orders and I believe he can fight this!

MrsG981
Posts: 2
Joined: Nov 2011

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

Carmanr2
Posts: 1
Joined: Apr 2013

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

Ron Carman

ankit pandey
Posts: 2
Joined: Apr 2013

Hi. you have given a hope for all of us. You have won biggest battle of yours. My father has MCL stage 4 with bone marrow involvment. Undergoing R-CHOP 6 cycle. Thanks for posting, feel good after hearing from you.

Ankit

rbrandw
Posts: 4
Joined: Mar 2010

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

illead's picture
illead
Posts: 565
Joined: Aug 2012

Hello Ron,

     We just read your post.  Bill is 1 year in remission from MCL.  His chemo was Bendamustine/rituxan and he is now on his last year of rit maintenance.  Even though we are thrilled with his progress it is always a little overwhelming to think about the future with MCL.  What a boost for us to know that you have been in remission 6 1/2 years!  We are so sorry for your losses during your battle.  We own our business so the employees were able to hang on and he bounced back very quickly from near death to his old self in about 6 months.  We just paid off $10.000 in lab bills as we have a high deductible ins and none of those initial tests qualified.  Thank goodnes that is over.  We hope you have been able to regroup and start anew again.  You are right though, there is no price for life and we are thankful for every minute of it.  We are encouraged with developments in the last years with MCL, which gives us much optimism. 

Our very best to you and many congratulations and hope that perhaps you have kicked MCL's butt! Bill and Becky

ankit pandey
Posts: 2
Joined: Apr 2013

Hi all,

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

illead's picture
illead
Posts: 565
Joined: Aug 2012

Hi Ankit,

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

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

angel531
Posts: 4
Joined: Apr 2013

Hi there,

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.

My dad is 54 and my brother and I are so young. I am completely stressed out about the survival rates and what types of treatments work better than others.

Can anyone tell me how long the normal survival rate is and without it coming back?

 

Kristie

round 2
Posts: 1
Joined: Apr 2013

After under going massive kemo and a bone marrow transplant (almost dieing)

Let me tell you it was no walk in the park

I lost over 70% of my long time memorey and about 40% of my short term memorey

I survived almost 6 years cancer free to wake up one morning with a lump on my neck the size of a softball

I went to my oncoligist and they schedueled me for surgerey to do a biopsie of the lump in my neck

they were going to take out the whole lump but didn't

the dicovered my cancer returned (mantel cell lymphomia)

it is the most uncomfortable feeling to have this huge lump on your neck it's like holding up a second head

I want them to remove it so I can be comfortable

I was told treatment this time around could kill me instantly due to my still weak immune system (they are leaving the desission to me)

or go with out treatment live aprox 18 months

I already told myself over and over for years I would not submit myself to that tourture again

I am at pease with my choice as I know I'm not in pain or suffering 

I just wish they would remove this giant lump off my neck it just gets in the way

my daughter is taking this hard as we havent seen eachother in over 12 years (Due to a bad devorce)         

I have her coming out to visit next month I can't wait

my poor wife is a basket case she knows I'm slowly dieing and she's not ready for me to go

my daughter knows I have cancer but she don't know I'm dieing this is going to be real hard to tell her

I just want to get out and enjoy all the things I can before I no longer can

I never knew what I was missing in my life till I got sick again

just being close with my famialy having fun along with all the laughter

 

This cancer is one mean SOB it just keeps coming

 

TAKE ADVANTAGE OF EVERYDAY
ENJOY EVERY MOMENT 

DON"T GO TO BED MAD

PRAY YOU WAKE ANOTHERDAY

 

 

 

 

 

illead's picture
illead
Posts: 565
Joined: Aug 2012

  I respect your decision Round 2, but I just want to give you another side to think about.  When Bill was diagnosed with MCL, his bone marrow was 90% packed with cancer, his RBC was 1.6 and his platelets were way low (I can't remember now) and he was near death.  I know many don't understand this but because of our religious beliefs we do not accept blood transfusions, so that was not an option for us.  So you can see that he also was in very poor condition and the doctor was very negative and convinced he would die.  He was given EPO shots to increase his blood counts and also hydrated for over a week before his 1st chemo.  His counts were still low so he was given only 1/2 dose of Bendamustine (Treanda) /Rituxan.  During his chemo, he had a bad spell with the symptoms he had suffered prior.  Rigors and high fever 105.   They had to stop his chemo and our son and I took over because we had dealt with it before.  We got his fever down to 102 and they were able to finish the chemo and let us take him home.  He went right to bed and slept for 2 hours.  When he got up his temp was normal and we could tell that he was starting to recuperate and the chemo was working.  He felt a little better each day.  Another problem tho was that instead of his next chemo being in 3 weeks, the onc drug her feet and he went 5 weeks.  His symptoms were starting to come back.  At his appt. she rudely said "I don't think you are are going into remission and I'm thinking about stopping the chemo."  When we told her Bill was getting symptoms again she immediatly scheduled chemo for the next day (Bill says he knew for the first time that he would die if she stopped the chemo).  Needless to say we were extremely relieved and the last time we saw that oncologist.  He continued chemo as scheduled at 3/4 dose, and is in complete remission a yr. Feb. 6 months after his first chemo.  He had no side effects at all from Bendamustine, not even hair loss.  It is very easy on the body.  We just saw his onc (different one) Thursday and he told us MCL is not near as ominous as it has been in the past.  He even said that if Bill is in remission for long enough they can use Benda again if he relapses.  He emphasized "if" he relapses.  I am so sorry for this long and personal post but I just feel like you shouldn't give up!  Of course this is your decision, but my hope is that you will at least get a second opinion, ideally from a doctor specializing in MCL.  There has to be some other options out there.  I will keep you and your family in my prayers, Becky

jimwins's picture
jimwins
Posts: 2085
Joined: Aug 2011

Round 2, I agree with Becky 100%.  It is your decision of course but often when we aren't well and/or are very fatigued, we don't make the best decisions.  A second opinion as she suggests is a good idea.  I am not in your shoes but I have worn similar ones in my journey and like all of us, have "walked the walk" with cancer.  Please know you are supported here no matter what decision you make.  I am thankful you have had 6 years of remission and wish you peace, strength and clarity through this tough time.

Big hearfelt hugs,

Jim

illead's picture
illead
Posts: 565
Joined: Aug 2012

I'm sorry for the things going on with your father.  I know it is very scary for you and your brother.  You can click on illead in the blue area and it will take you to our page.  You can read about Bill and also if you look up at the post above jimwins in this section (two up from this post) you will see some more information.  Please know that they are making very positive headway in treating Mantle cell.  I am hoping that your father's doctors are familiar with MCL.  Of course we are not doctors, so sometimes we have to trust that they are doing the best possible.  I just wonder why he received radiation only when first diagnosed, but I suppose there are different thoughts on MCL and maybe treatment differs where it is located.    Maybe you would want to get a second opinion just for your knowledge.  We are a caring group here Kristie and please feel free to ask us or just to share your feelings or whatever.  We are here for you.  Bill and I know how scary MCL is but we also know that there is real positive hope that it is treatable and even hopefully getting to the point of being curable.  Hang in there and be there for your father and please let us know how things are going, and as I said before, all of us are here for you.  Becky

angel531
Posts: 4
Joined: Apr 2013

Hi there Becky,

I am starting to not look at any info on the internet because it seems to be all negative. It is truly great to find a site on here that I can talk to others about the situation I am going through. It does help to talk about it with friends and extended family; however, sometimes they just don't undersatnd how much of an impact this has on me and also seeing my dad go through this and also hearing him say "why me?". I have no idea how to respond to him in response to that question... I don't think it would be great to reply to him and say God knew you could deal with it, because my dad has already gone through really bad times in his life. It is really about time that he can live his life stress free of everything!

Thanks for the encouraging words, Becky!

Kristie

angel531
Posts: 4
Joined: Apr 2013

To eeyora,

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.

How is your husband doing? MY prayers are with you guys!

kristie

unremitting
Posts: 2
Joined: Oct 2013

Hello

 

 My husband was recently diagnosed with Mantle Cell Lymphoma Stage IV. He is previously healthy and is 47. We are looking into 4 institutions to undergo treatment and love to hear experience anyone who has had treatments with the followng Dr's, would also love any encouraging stories of patients who are in long term remission from these institutions/Dr's. We live in NY so our plan is to look into Memorial Sloan Kettering (still waiting to see who we will see but would love any tips if you liked working with a perticular doctor there), Dr Goy in Hackensack NJ, Cornell (Dr Leonard) and Roosevelt (Dr Groosbard). We are new to this so would appreciate any info we can get. Feel free to eMail us at perfecthealth1@yahoo.com

Kind Regards, 

Home123
Posts: 1
Joined: Jan 2013

It has been a long rough road since getting dx with MCL in March 2012, (will never forget that day)!  But I'm done, finsihed all the chemo, had the Nordic Regimen, a combo of of Maxi-R-Chop and Ara-C.  Then the autologous stem cell transplant.  There were bumps in the road and at times I thought I was going to die for sure.  But all along my doctors thought I would be 'cured'  so I just kept plodding through. 

It has been 6 months since my transplant and I am starting to feel like my old self.  Don't despair, just hang in there, MCL is beatable!  And I never thought I would say this but I am a better person today because of the experience.  Each day I awake with a song of gratitude.

MareVT
Posts: 1
Joined: Nov 2013

Hi,

I have been undergoing treatment with Dr Goy since July and will finish my last round of chemo shortly. Dr Goy, his team and Hackensack has been an awesome experience or us. I am enrolled in a clinical trail that adds Velcade to Hyper CVAd, the resultw from the trail so far have been very promising. Hackensack and MD Anderson are the only 2 facilities that offer this treatment. I am 47 and was diagnosed ith mantle cell stage IV, multiple enlarged nodes with bone marrow involvement. My nodes have all reduced in isze dramatically and my bone marrow has tested clean. When I first met Dr. Goy he told me that finding a cure for MCl keeps him up at night. I believe him, he is passionate and a bit quirky but we love him and his team.

Best of luck finding the right match for you!

Susanpreefer65
Posts: 3
Joined: Jan 2014

Hi,

My husband has also been undergoing treatment with Dr. Goy since being diagnosed with advanced Stage 4 MCL in August. As difficult as his diagnosis has been for him, we too cannot begin to say enough about how incredible Dr. Goy and his entire team at The John Thauer Cancer Research Center have been. We are beyond blessed to have found not only an unbelievably brilliant Dr. (without the all too typical "God-like" complex") but also a Dr. who is passionate about what he does. We (he) just finished his 6th cycle (B- yuck) a few weeks ago and will find out next week if Dr. Goy wants to do 7&8. (we were told that even if his CAT scan/colonoscopy come back clean, Dr. Goy, depending on the particular patient, will often call for two more) Dr. Goy quirky? Without a doubt, but what I thought was quircky 6 months ago (those first few visits- wow!), I now find to be so endearing. They just add that something extra to his already incredible brilliance. I am in complete awe of this man each and everytime we see him and thank God for him every day. I'm very curious if our paths have crossed at all either in the infusion room or at the hospital. I'm just going to throw this out to you. I have to imagine that it would be not only beneficial but also a wonderful support to be able to talk with someone who has and is going through exactly the same thing you are. I know it would be for my husband, George. (he's a really good guy! You can ask Goy!)   So....if you think you're up for it and would like to talk, please do not hesitate to get back to me. I'll give you his email address and you can go from there. 

 

  In the meantime, stay healthy, stay strong and be wel!!

                                                                  Susan

 

udnic1228
Posts: 2
Joined: Dec 2013

HI,

 My name is Nicole and my mother (65, not in the best shape) just got diagnosed with mantle cell at Memorial Sloan.  This was after our community doctor ( Westchester COunty, NY ) ran the first tests because her white blood count was high but just gave the cancer " inconclusinve" for its origins.  Sloan diagnosed her with mantle cell.  We are not going to a specific " mantle cell  specialist " at this point and it worries me ( internet is a blessing and a curse).  Right now they are waiting and watching.  She has involvement in her bone marrow but not yet in her lymph nodes, and a spot on her colon.  Have you found in your research in NY/NJ any doctors that treat this more aggressivley and do not take the " wait and watch" approach?  I know you are knew to this too, but I am hoping you might have had some luck with any doctors you have come across.

 

My best wishes to your husband on a journey that is quick, and my prayers to you as a fellow caretaker.

Best,

Nicole 

Susanpreefer65
Posts: 3
Joined: Jan 2014

Hi Nicole,

 Was wondering if it would be possible for your mom to come to N.J and see Dr. Goy?  The John Thauer Cancer Research Center at Hackensack Hospital is only 15 minutes over the GWB.  I cannot swear by this enough. 

Praying for your mom and you. Stay strong!

illead's picture
illead
Posts: 565
Joined: Aug 2012

If you go to the first page of this thread and scroll almost halfway down there are 2 short posts from ggl2013.  In his 2nd post (about 4 down from his first), he says he is going to Dr. Goy.  That is the last post I ever saw from him but he posted privately to us, but I never did hear from him much after that.  You can click on his name in the the blue area to get his info and also can email him privately through CSN (no email addresses exchanged).  You have to create a sign in  first though.  Hope this helps.  We are in CA so do not have any experience with the doctors you speak of.  I have seen Dr. Goy's name in my research however, he seems very notable with MCL.

Becky

    

 

unremitting
Posts: 2
Joined: Oct 2013

Thanks Becky for taking the time to reply :)

illead's picture
illead
Posts: 565
Joined: Aug 2012

We are kind of in uncharted waters.  It's scary but very hopeful.  We take one day at a time but add a few extra! Wink Bill & Becky

udnic1228
Posts: 2
Joined: Dec 2013

HI-

I think our situations are failry similar and we are seeking the best care for my mother, who was diagnosed with lymphoma on Oct 5, but the dx came back as mantle cell about a month ago. She just recently went back for additional blood work, and only upon complaining about her arm (after I made her tell the dr) they ordered a Pet scan at sloan, and the results came back today that there is " active uptake" in her arm, the lesion still on her colon, and an additional lesion as shown from an MRI behind her eye ( but perhaps not related to any lymphoma).  They are still waiting and watching and it doesn't feel right to me, so I am on here looking for advice since I am very new to this.

I am thinking about a second opinion at hackensack with Dr. Goy ( she currently got dx at Sloan with Dr. Portlock) , or even Cornell with Leonard.  Have you decided where to go yet?  Do you have any updates on how you guys are doing?  

 

I am sending prayers to you!

Nicole

Susanpreefer65
Posts: 3
Joined: Jan 2014

Nicole,

DON'T THINK - GO TO GOY!!!!!!

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