Mantle Cell Lymphoma

misspeggy
misspeggy Member Posts: 1
My husband has been diagnosed with Mantel Cell non-Hodgkins Lymphoma. I've yet to meet anybody else with this type. Does anybody have any experience with this type?
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Comments

  • ptg
    ptg Member Posts: 1
    hi, i just logged on for the first time today. my dad was just diagnosed and i'm still in a state of disbelief he starts chemo in five days, all we can do is pray, i hope all goes well with your husband.
  • ronald
    ronald Member Posts: 4
    ptg said:

    hi, i just logged on for the first time today. my dad was just diagnosed and i'm still in a state of disbelief he starts chemo in five days, all we can do is pray, i hope all goes well with your husband.

    I have been diagnosed with MCL and have a choice of R-Hyper CVAD or an experimental genesence treatment. R-Hyper CVAD is known but the other is completely unknown. Which chemo is your father using and why. Thank you



    cvad is pretty well known and the others completely experimental. What kind of chemotherapy is going to be used and why.
  • JenRN
    JenRN Member Posts: 1
    Mantle cell lymphoma is rare. It is usually detected in the later stages. The good news is that it's slow growing. My father-in-law was diagnosed in 11/02. He just received a stem cell transplant last month, he's doing much better than ever prognosed.
  • MIKEDG
    MIKEDG Member Posts: 10
    hell-o again my name is michael and imhave had mcl for 5 years aand i have alot of side effects..if you would could we email each other ..my email is [email protected] please i to would like to talk about mcl with prayer michael hope to hear from you real soon
  • sylviadisney
    sylviadisney Member Posts: 1
    ptg said:

    hi, i just logged on for the first time today. my dad was just diagnosed and i'm still in a state of disbelief he starts chemo in five days, all we can do is pray, i hope all goes well with your husband.

    Hi, my dearest freind has told she has aggresive manle cell can you give me any info or advice.Email [email protected] Thanx
  • bells
    bells Member Posts: 2
    MIKEDG said:

    hell-o again my name is michael and imhave had mcl for 5 years aand i have alot of side effects..if you would could we email each other ..my email is [email protected] please i to would like to talk about mcl with prayer michael hope to hear from you real soon

    mike, my brother has mantle cell cancer...he's in remission now, but would love to chat with u....
  • JoDearing
    JoDearing Member Posts: 1
    I was just diagonsed w/MCL (stage IV)and had my first chemo treatment of Rituxan w/ CHOP. Only side effects so far is extreme fatigue and very low white cell count. I am going to the Lee Moffit Cancer center (tampa, fl)for further diagnoses by a Dr. Sotomayor, who specializes in MCL. How are you doing in your treatment??
  • Skipatrol007
    Skipatrol007 Member Posts: 4
    JoDearing said:

    I was just diagonsed w/MCL (stage IV)and had my first chemo treatment of Rituxan w/ CHOP. Only side effects so far is extreme fatigue and very low white cell count. I am going to the Lee Moffit Cancer center (tampa, fl)for further diagnoses by a Dr. Sotomayor, who specializes in MCL. How are you doing in your treatment??

    Mantel Cell
    Hello,

    I was told I have mcl in 10/09. I had one round of rituxan and have responded well. (no side effects) My Dr. wants to put me on a clinical trial of Rituxan, Cladribine and Vorinostat (Trial # OHSU-4180).

    He has had patients with good results 5 + years of remission with just rituxan and cladribine and beleives the addition of the vorinostat could increase the remission rate further.

    I am 48 and in good health and this is very hard to deal with, I try to stay positive but find myself on the "pitty pot" now and than.

    I got a second opion from Fox Chase and they recommended the heavier duty chemo plus a stem cell transplant. I am opting for the other treatment as it is much less toxic on the body and they advise we can always go the other route if necessary.

    Would like to speak, e-mail with anyone interested in dicussing this disease. My email is [email protected] Thank-You

    Good luck to all,
    God Bless,
    Rich
  • MSK
    MSK Member Posts: 1

    Mantel Cell
    Hello,

    I was told I have mcl in 10/09. I had one round of rituxan and have responded well. (no side effects) My Dr. wants to put me on a clinical trial of Rituxan, Cladribine and Vorinostat (Trial # OHSU-4180).

    He has had patients with good results 5 + years of remission with just rituxan and cladribine and beleives the addition of the vorinostat could increase the remission rate further.

    I am 48 and in good health and this is very hard to deal with, I try to stay positive but find myself on the "pitty pot" now and than.

    I got a second opion from Fox Chase and they recommended the heavier duty chemo plus a stem cell transplant. I am opting for the other treatment as it is much less toxic on the body and they advise we can always go the other route if necessary.

    Would like to speak, e-mail with anyone interested in dicussing this disease. My email is [email protected] Thank-You

    Good luck to all,
    God Bless,
    Rich

    MCL
    Hi Rich,

    My father was recently diagnosed with MCL.

    We just met with a Dr. today (4/15/10) who would like to enroll my father in a clinical trial of RCV as well, I'm not sure what the trial number is yet.

    I am interested in hearing how your treatment is going.

    My email is [email protected]

    Blessings,

    Mark
  • jgilbert1270
    jgilbert1270 Member Posts: 9
    mcl
    Diagnosed wih mcl april 1 (no fools joke) Will be starting a clinical trial on april 26 @ Wake Forest Baptist hospital and UNC Chapel Hill in North Carolina. Very aggressive Chemo followed by Stem cell transplant and finally a test of a drug used currently in another cancer treatment to prevent relapse. If you want more info I'll be happy to share. but as usual I'm too tired to go into it all now. God Bless.
    For most of us the danger is not setting the goal too high and missing it but aetting the goal too low and hitting it

    [email protected]
  • Blondie414
    Blondie414 Member Posts: 1

    mcl
    Diagnosed wih mcl april 1 (no fools joke) Will be starting a clinical trial on april 26 @ Wake Forest Baptist hospital and UNC Chapel Hill in North Carolina. Very aggressive Chemo followed by Stem cell transplant and finally a test of a drug used currently in another cancer treatment to prevent relapse. If you want more info I'll be happy to share. but as usual I'm too tired to go into it all now. God Bless.
    For most of us the danger is not setting the goal too high and missing it but aetting the goal too low and hitting it

    [email protected]

    Mantle Cell
    Hi Jgilbert, I was diagnosed on 4/24/09 with Mantle Cell and am on the other side of Hyper-CVAD followed by a Auto Stem Cell Transplant.

    I'd love to hear how your doing, I haven't hard anything about the test drug to prevent relapse. Would like to hear more about it when your feeling up to sharing. I did all of mine down in Greenville, SC

    Hang in there and stay as active as you can, it will help you a bunch further down the track.

    feel free to write me at [email protected]

    Take care and God Bless
  • jgilbert1270
    jgilbert1270 Member Posts: 9

    Mantle Cell
    Hi Jgilbert, I was diagnosed on 4/24/09 with Mantle Cell and am on the other side of Hyper-CVAD followed by a Auto Stem Cell Transplant.

    I'd love to hear how your doing, I haven't hard anything about the test drug to prevent relapse. Would like to hear more about it when your feeling up to sharing. I did all of mine down in Greenville, SC

    Hang in there and stay as active as you can, it will help you a bunch further down the track.

    feel free to write me at [email protected]

    Take care and God Bless

    MCL Clinical Trial
    Hi eblondie, let me know how your treatment went for the past year. I just finished the first of 6 treatments in this clinical trial. Treatments 1,2 & 3 are increasing levels of chemo, treatment 4 is high dose chemo with SCT treatment 5 is immunotherpy and finally treatment 6 is Maintenance or consololidation therpy with Bortezomib
    The Bortezomib isthe part that is the trial. I tried to find the clinical trial number From the NCI database and I think it is NCT 00310037 The complete trial takes about 2 years. Feel free to e mail me at [email protected]
    God Bless
  • redlynn
    redlynn Member Posts: 2

    Mantle Cell
    Hi Jgilbert, I was diagnosed on 4/24/09 with Mantle Cell and am on the other side of Hyper-CVAD followed by a Auto Stem Cell Transplant.

    I'd love to hear how your doing, I haven't hard anything about the test drug to prevent relapse. Would like to hear more about it when your feeling up to sharing. I did all of mine down in Greenville, SC

    Hang in there and stay as active as you can, it will help you a bunch further down the track.

    feel free to write me at [email protected]

    Take care and God Bless

    Mantle Cell and Rituxen
    I was diagnosed with Mantle cell lymphoma in June of 08 after discovering a lump in my armpit. Through testing they also discovered some of the mantle cells in my bone marrow. Because I was pretty much symptom free we decided to take the Watch and Wait approach. My oncologist consulted with Lance Armstrong's oncologist and this is what he also recommended.

    Through CAT scans over the next year more and more of my lymph nodes were showing signs of the cancer cells so in June of 09 I started taking Rituxen, 4weeks on, 4-off, then four more treatments. I had great results from the treatment that regular Cat Scans proved.

    At the beginning of 2010 I started having alot of difficulty with constipation so we scheduled a colonoscopy--which I was due for anyway. Three weeks ago I received the result and they discovered that my lymph nodes through out my colon were swelling and a large mass was found in my rectum, also a result of the mantle cell. Of course my first thought was this was a death sentence for me and felt that we needed to do whatever needed to stop or remove the cancer. Mantle cell is a blood cancer that spreads through out the lymph system so it does not do much good to start removing every part of your body that is affected by it. In fact, my doctor feels that my spleen in also involved.

    The puzzeling part to me is that we are continuing with the Rituxen. As of today I finished my second session and will have three more. My doctor feels that we had great results from in before and he would rather but me through these treatment before moving to something more drastic. I am to this day still relatively symptom free, I don't have night sweats and I'm definately not losing any weight!

    I guess my reason for finally deciding to join a forum is that I would like to learn from others as to what point one should take more of an aggressive approach. Some of the forums I have been reading regarding mantle cell is that most people are being treated more aggressively even to the point of stem cell transplant. What symptoms were you having? Does anyone else have close to my degree of the disease and are you still on Rituxen? Before this latest development with my colon and rectum I was at a stage IV.

    Thank you for listening!
  • gmusgrove
    gmusgrove Member Posts: 15
    redlynn said:

    Mantle Cell and Rituxen
    I was diagnosed with Mantle cell lymphoma in June of 08 after discovering a lump in my armpit. Through testing they also discovered some of the mantle cells in my bone marrow. Because I was pretty much symptom free we decided to take the Watch and Wait approach. My oncologist consulted with Lance Armstrong's oncologist and this is what he also recommended.

    Through CAT scans over the next year more and more of my lymph nodes were showing signs of the cancer cells so in June of 09 I started taking Rituxen, 4weeks on, 4-off, then four more treatments. I had great results from the treatment that regular Cat Scans proved.

    At the beginning of 2010 I started having alot of difficulty with constipation so we scheduled a colonoscopy--which I was due for anyway. Three weeks ago I received the result and they discovered that my lymph nodes through out my colon were swelling and a large mass was found in my rectum, also a result of the mantle cell. Of course my first thought was this was a death sentence for me and felt that we needed to do whatever needed to stop or remove the cancer. Mantle cell is a blood cancer that spreads through out the lymph system so it does not do much good to start removing every part of your body that is affected by it. In fact, my doctor feels that my spleen in also involved.

    The puzzeling part to me is that we are continuing with the Rituxen. As of today I finished my second session and will have three more. My doctor feels that we had great results from in before and he would rather but me through these treatment before moving to something more drastic. I am to this day still relatively symptom free, I don't have night sweats and I'm definately not losing any weight!

    I guess my reason for finally deciding to join a forum is that I would like to learn from others as to what point one should take more of an aggressive approach. Some of the forums I have been reading regarding mantle cell is that most people are being treated more aggressively even to the point of stem cell transplant. What symptoms were you having? Does anyone else have close to my degree of the disease and are you still on Rituxen? Before this latest development with my colon and rectum I was at a stage IV.

    Thank you for listening!

    Mantle Cell Lymphoma
    I am a Mantle Cell Lymphoma (MCL) survivor. I was originally dx with MCL on 4/15/08. Cancer was originally located in my colon. I was very constipated and had bathroom problems. After a bone marrow biopsy it show no MCL in my blood. I was stage 2E. I also had no night sweat, weight loss or lumps. My oncologisty recommended doing chemo and a SCT to give me the longest possible time of remission. I had six cycles of R CHOP chemo. A chemo treatment every 21 days. Went into remission. 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 still clear. Did transplant in Dallas, TX at Texas Oncology at Baylor University Medical Center. Transplant time was 30 days. Very rough time for about 6 months during treatment. I had a 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
  • sbs
    sbs Member Posts: 1

    Mantel Cell
    Hello,

    I was told I have mcl in 10/09. I had one round of rituxan and have responded well. (no side effects) My Dr. wants to put me on a clinical trial of Rituxan, Cladribine and Vorinostat (Trial # OHSU-4180).

    He has had patients with good results 5 + years of remission with just rituxan and cladribine and beleives the addition of the vorinostat could increase the remission rate further.

    I am 48 and in good health and this is very hard to deal with, I try to stay positive but find myself on the "pitty pot" now and than.

    I got a second opion from Fox Chase and they recommended the heavier duty chemo plus a stem cell transplant. I am opting for the other treatment as it is much less toxic on the body and they advise we can always go the other route if necessary.

    Would like to speak, e-mail with anyone interested in dicussing this disease. My email is [email protected] Thank-You

    Good luck to all,
    God Bless,
    Rich

    MCL
    Hi Rich,

    My husband is newly diagnosed. He has no B symptoms. We meet with drs. at the Massey Cancer Ctr. at VCU in Richmond, VA this week to learn about a trial at that hospital using Bortezomib and Vorinstat.

    How are you doing?

    Sukey
  • notuneak
    notuneak Member Posts: 1
    gmusgrove said:

    Mantle Cell Lymphoma
    I am a Mantle Cell Lymphoma (MCL) survivor. I was originally dx with MCL on 4/15/08. Cancer was originally located in my colon. I was very constipated and had bathroom problems. After a bone marrow biopsy it show no MCL in my blood. I was stage 2E. I also had no night sweat, weight loss or lumps. My oncologisty recommended doing chemo and a SCT to give me the longest possible time of remission. I had six cycles of R CHOP chemo. A chemo treatment every 21 days. Went into remission. 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 still clear. Did transplant in Dallas, TX at Texas Oncology at Baylor University Medical Center. Transplant time was 30 days. Very rough time for about 6 months during treatment. I had a 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

    Mantle Cell Lymphoma
    Just wanted to jump in with some advice about MCL. My mother was diagnosed with Stage IV MCL in July 2007. It had spread from her intestines to her spleen, to her mouth, and who knows where else. She was 81 and was not eligible for transplant or trials.

    My advice for anyone facing this disease or who has a loved one that has been diagnosed, is not to read anything on the internet that is older than a year. I've read billions of articles and the older ones are always depressing and take away hope.

    However things are changing rapidly with MCL treatment. My mother had the R-CHOP upon diagnosis. She had some other different treatments - let me know if you need details, but nothing out of the ordinary. She didn't get ill from the treatments, just a little tired sometimes. She has continued living an active life, walking 5 miles a day and feeling good.

    Her doc told her the cancer would come back and put her on a Rituxan maintenance schedule a year ago. She goes in every 3 months for an infusion that takes about 6 hours. She drives herself to treatment and home, and sometimes stops to shop on the way home. Her remission continues and she feels completely healthy. She has had no problems for more than 3 years and it is probably much longer because she'd had it several years when diagnosed.

    She is getting treated in Seattle at the Seattle Cancer Care Alliance. I can't say enough good things about that place and the doctors and nurses there.

    Hang in there everyone, get the treatments, have a positive attitude and prepare for a good remission. New treatments have come out since my mom was diagnosed. They are closing in on MCL.
  • COBRA666
    COBRA666 Member Posts: 2,401
    notuneak said:

    Mantle Cell Lymphoma
    Just wanted to jump in with some advice about MCL. My mother was diagnosed with Stage IV MCL in July 2007. It had spread from her intestines to her spleen, to her mouth, and who knows where else. She was 81 and was not eligible for transplant or trials.

    My advice for anyone facing this disease or who has a loved one that has been diagnosed, is not to read anything on the internet that is older than a year. I've read billions of articles and the older ones are always depressing and take away hope.

    However things are changing rapidly with MCL treatment. My mother had the R-CHOP upon diagnosis. She had some other different treatments - let me know if you need details, but nothing out of the ordinary. She didn't get ill from the treatments, just a little tired sometimes. She has continued living an active life, walking 5 miles a day and feeling good.

    Her doc told her the cancer would come back and put her on a Rituxan maintenance schedule a year ago. She goes in every 3 months for an infusion that takes about 6 hours. She drives herself to treatment and home, and sometimes stops to shop on the way home. Her remission continues and she feels completely healthy. She has had no problems for more than 3 years and it is probably much longer because she'd had it several years when diagnosed.

    She is getting treated in Seattle at the Seattle Cancer Care Alliance. I can't say enough good things about that place and the doctors and nurses there.

    Hang in there everyone, get the treatments, have a positive attitude and prepare for a good remission. New treatments have come out since my mom was diagnosed. They are closing in on MCL.

    Great news
    I don't know too much about Mantle Cell except what I read on those sites you talked about. I just want to say it is great news to hear they have come so far with MCL. I feel they are closing in on all this terrible disease. The quicker the better for all concerned. Good Luck to your mom and to you too. John
  • mike k
    mike k Member Posts: 1

    Mantel Cell
    Hello,

    I was told I have mcl in 10/09. I had one round of rituxan and have responded well. (no side effects) My Dr. wants to put me on a clinical trial of Rituxan, Cladribine and Vorinostat (Trial # OHSU-4180).

    He has had patients with good results 5 + years of remission with just rituxan and cladribine and beleives the addition of the vorinostat could increase the remission rate further.

    I am 48 and in good health and this is very hard to deal with, I try to stay positive but find myself on the "pitty pot" now and than.

    I got a second opion from Fox Chase and they recommended the heavier duty chemo plus a stem cell transplant. I am opting for the other treatment as it is much less toxic on the body and they advise we can always go the other route if necessary.

    Would like to speak, e-mail with anyone interested in dicussing this disease. My email is [email protected] Thank-You

    Good luck to all,
    God Bless,
    Rich

    Mantle cell stage 4
    Hello,

    I am 55 , good health and just diagnosed with stage 4 mantle cell lymphoma. We are trying to decide on what treatment we should take, as this was the option from the Mayo clinic. R Hyper CVAD or R-CHOP with a stem cell transplant.

    Any advice?

    Thanks Mike
  • gmusgrove
    gmusgrove Member Posts: 15
    mike k said:

    Mantle cell stage 4
    Hello,

    I am 55 , good health and just diagnosed with stage 4 mantle cell lymphoma. We are trying to decide on what treatment we should take, as this was the option from the Mayo clinic. R Hyper CVAD or R-CHOP with a stem cell transplant.

    Any advice?

    Thanks Mike

    Mantle Cell Lymphoma
    Hey Mike

    I had MCL (stage 2E) and was treated with R-CHOP and a stem cell transplant. I know cancer and treatments effect each person different. I celebrated my second birthday yesterday (Sept. 4) of my stem cell transplant. And have been cancer free since 09/04/08 (Praise God). As you go through your treatment, please remember to ask lots of questions and if possible have someone with you at all appointments so they can remember what you may forget from the doctor and keep copies of a bloodwork and test results for your own record.

    Remember there is a cure.

    Gary
  • Godsman
    Godsman Member Posts: 1
    notuneak said:

    Mantle Cell Lymphoma
    Just wanted to jump in with some advice about MCL. My mother was diagnosed with Stage IV MCL in July 2007. It had spread from her intestines to her spleen, to her mouth, and who knows where else. She was 81 and was not eligible for transplant or trials.

    My advice for anyone facing this disease or who has a loved one that has been diagnosed, is not to read anything on the internet that is older than a year. I've read billions of articles and the older ones are always depressing and take away hope.

    However things are changing rapidly with MCL treatment. My mother had the R-CHOP upon diagnosis. She had some other different treatments - let me know if you need details, but nothing out of the ordinary. She didn't get ill from the treatments, just a little tired sometimes. She has continued living an active life, walking 5 miles a day and feeling good.

    Her doc told her the cancer would come back and put her on a Rituxan maintenance schedule a year ago. She goes in every 3 months for an infusion that takes about 6 hours. She drives herself to treatment and home, and sometimes stops to shop on the way home. Her remission continues and she feels completely healthy. She has had no problems for more than 3 years and it is probably much longer because she'd had it several years when diagnosed.

    She is getting treated in Seattle at the Seattle Cancer Care Alliance. I can't say enough good things about that place and the doctors and nurses there.

    Hang in there everyone, get the treatments, have a positive attitude and prepare for a good remission. New treatments have come out since my mom was diagnosed. They are closing in on MCL.

    Your mothers MCL maintenance
    I am currently in remission after R-chop 21 and 2 follow up Rituxan and Bendamustine treatments.
    I am interested in knowing what maintenance regimens have worked for others with MCL since
    I will have to make a choice as to what to do going forward. I am very interested in your mot
    hers quarterly treatments especially since it has been quite successful and apparently appears to carry with it very low toxicity( something I feel very strongly about). Would you please give me a through description of her maintenance treatments with Rituxan and any thing else that may have been administered along with it. I would greatly appreciate it. Godsman