Mantle Cell Lymphoma

kipster
kipster Member Posts: 1
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
i am looking for info on MCL-non hodgkins Lymphoma there isn't too much out there. Does anyone know anything about it or how aggressive it is?

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  • Unknown
    Unknown
    #2
    This comment has been removed by the Moderator
  • pingme
    pingme Member Posts: 4
    #3
    Mantel Cell Lymphoma
    My father was just diagnosed with MCL Monday. At first we had no idea of what exact class of NHL he had. A visit to Moffitt confirmed the MCL; this was only after a second look at the BMB. He is being admitted today for treatments. The treatment is Hyper Cvad with Rituximab. The Rituximab will go after the CD20 marker of MCL, the drug will help identify the cells so that the other drugs and his own immune system can attack them. This is only one of the drugs involved. He is on 8, not counting the pain meds and etc. I have been studying and am amazed of how many cancer fighting drugs we now have. Studying about the drugs has eased me and I feel more hopeful of the treatments. Maybe that will help you too.

    CVAD is the acronym for the four drugs:


    Cyclophosamide/Cytoxan
    Vincristine
    Adriamycin
    Dexamethasone

    And then of course Rituximab.

    He's also on allopurinol, neulasta, and neupagin.

    These drugs are all being done inpatient through either an injection or Continuous IV. There are plenty of resources. I found the best information at the lymphoma and leukemia society's site. There is plenty of free literature than can be sent to your home too. The nurses should be able to give you some other literature too.

    Good Luck and God Bless, hope I was able to help.
  • pingme
    pingme Member Posts: 4
    #4
    Mantel Cell Lymphoma
    Oh forgot a question.

    What did you expect after the first round of treatment and as bad as you thought it was gonna be was it worse?
  • gmusgrove
    gmusgrove Member Posts: 15
    #5
    pingme said:

    Mantel Cell Lymphoma
    Oh forgot a question.

    What did you expect after the first round of treatment and as bad as you thought it was gonna be was it worse?

    Mantle Cell Lymphoma
    I was first told that I had MCL on 15 April 2008, went through six treatments of R-CHOP chemo and went into remission; had a stem cell transplant (SCT) using BEAM chemo; have been cancer free for the last 6 months.
  • slickwilly
    slickwilly Member Posts: 334 Member
    #6
    gmusgrove said:

    Mantle Cell Lymphoma
    I was first told that I had MCL on 15 April 2008, went through six treatments of R-CHOP chemo and went into remission; had a stem cell transplant (SCT) using BEAM chemo; have been cancer free for the last 6 months.

    cancer free
    gmusgrove. Its great news that your cancer free. I know the R-CHOP was proubly hard as I also had it 6 years ago. I hope you have a great life ahead of you. Slickwilly
  • msdina257
    msdina257 Member Posts: 6
    #7
    slickwilly said:

    cancer free
    gmusgrove. Its great news that your cancer free. I know the R-CHOP was proubly hard as I also had it 6 years ago. I hope you have a great life ahead of you. Slickwilly

    I love to hear this story
    I love to hear this story gmusgrove. Slickwilly did you have MCL? My husband is starting his 3rd treatment for MCL and are planning on stem cell transplant too. Can you tell me about how yours went? How long was your hospital stay? How long did it take after the hospital you felt better and went to work. Its a scary one, would love to hear good news. Thank you for your time and hope to hear from you
    Dina
  • MelanieB.
    MelanieB. Member Posts: 1
    #8
    gmusgrove said:

    Mantle Cell Lymphoma
    I was first told that I had MCL on 15 April 2008, went through six treatments of R-CHOP chemo and went into remission; had a stem cell transplant (SCT) using BEAM chemo; have been cancer free for the last 6 months.

    Mantle Cell Lymphona
    My husband was diagnosed with Splenic Marginal Zone Lymphoma in 2008....at least that is what we THOUGHT he had. He went through 4 cycles of R-CHOP and handled it like a champ. He was 38 years old at the time. He was told he was in remission, in fact the doctor said he had NO SIGNS from his bone marrow biopsy that he ever had lymphoma. Prior to chemo in 2008, my husband had his extrememly large spleen removed...it was over nine pounds. A normal spleen should weigh 8 oz. His story spread through the Christiana Hospital (Delaware)like wild fire. It was like an episode of "Greys Anatomy" where everyone came to take a picture of this record breaking spleen. It took him about 2 months to recover from this surgery and that is when he began R-CHOP. We continued to see his doctor to have scans every 6 months. We recently just found out that his original diagnosis was incorrect and he actually has Mantle Cell Lymphoma. That was a shocker...to say the least! This cancer sounds much more aggressive and scary. We are now getting other opinions as to what the best treatment plan would be for my husband. One doctor says 4 cycles of HyperCVAD followed by a allogenic stem cell transplant. Another doctor feels there is no reason to put his body through such a difficult chemo regiman and suggests 4 cycles of Bendamustine followed by an allogenic stem cell transplant. I am totally confused and do not know what to do.....should we get a third opinion. Right now, my husband is 40 years old and feels great. We have two boys (9 & 11) and we want to do the best treatment with the best results. I am scared to death about the stem cell transplant. Johns Hopkins says to be prepared to LIVE in Baltimore for 3 months during the recovery. Luckily I am a teacher who has summers off, but the thought of being without my boys for the summer is horrible. Should we do HyperCVAD and hope for a remission and follow with stem cell transplant later? There are so many horrible risks with that surgery...... Or should we just do the surgery now? I really need some advice from anyone who has gone through this situation. Please respond, I would love to hear your story.
    Thank you,
    Melanie
    mushma@comcast.net
  • gam47
    gam47 Member Posts: 1
    #9
    MelanieB. said:

    Mantle Cell Lymphona
    My husband was diagnosed with Splenic Marginal Zone Lymphoma in 2008....at least that is what we THOUGHT he had. He went through 4 cycles of R-CHOP and handled it like a champ. He was 38 years old at the time. He was told he was in remission, in fact the doctor said he had NO SIGNS from his bone marrow biopsy that he ever had lymphoma. Prior to chemo in 2008, my husband had his extrememly large spleen removed...it was over nine pounds. A normal spleen should weigh 8 oz. His story spread through the Christiana Hospital (Delaware)like wild fire. It was like an episode of "Greys Anatomy" where everyone came to take a picture of this record breaking spleen. It took him about 2 months to recover from this surgery and that is when he began R-CHOP. We continued to see his doctor to have scans every 6 months. We recently just found out that his original diagnosis was incorrect and he actually has Mantle Cell Lymphoma. That was a shocker...to say the least! This cancer sounds much more aggressive and scary. We are now getting other opinions as to what the best treatment plan would be for my husband. One doctor says 4 cycles of HyperCVAD followed by a allogenic stem cell transplant. Another doctor feels there is no reason to put his body through such a difficult chemo regiman and suggests 4 cycles of Bendamustine followed by an allogenic stem cell transplant. I am totally confused and do not know what to do.....should we get a third opinion. Right now, my husband is 40 years old and feels great. We have two boys (9 & 11) and we want to do the best treatment with the best results. I am scared to death about the stem cell transplant. Johns Hopkins says to be prepared to LIVE in Baltimore for 3 months during the recovery. Luckily I am a teacher who has summers off, but the thought of being without my boys for the summer is horrible. Should we do HyperCVAD and hope for a remission and follow with stem cell transplant later? There are so many horrible risks with that surgery...... Or should we just do the surgery now? I really need some advice from anyone who has gone through this situation. Please respond, I would love to hear your story.
    Thank you,
    Melanie
    mushma@comcast.net

    MCL
    Sorry to hear about your Husband’s diagnosis. MCL is a very difficult cancer to diagnose and usually remains undetected until in an advanced stage. It’s imperative to have him be cared by one of the top Cancer Centers in your area being either Phil. and or N.Y. I am a 59 Yr. old male from New Jersey who was diagnosed with Stage 4 mantle cell on 12/2010. I was in perfect health and great overall physical condition prior to diagnosis which came as a complete shock as my only symptoms were some tiredness at times with stomach bloating. I am currently on cycle four of Hyper Cvad. On a personal basis, having starting out fit, strong and a with good work ethic each day this treatment has been both tiring and challenging to say the least. Most all Doctors will advise you’ll be out of work up to three months after the last cycle of chemo providing no serious complications arise. You’ll probably require multiple transfusions especially after the B cycles but this treatment gives you the best chance of prolonged remission. Do your homework diligently and visit the leading Cancer Centers for the most up to date information which is very promising along with a vaccine that’s in the clinical trials by Biovest International . Some Centers recommend autologous stem cell transplant which has many risks along with the regiment of 6 cycles of Hyper Cvad but the trasplant has not been fully proven to prolong the remissions and or survival rates. Through much research and in speaking with many top American Cancer Center professionals I personally opted out of this procedure. Visit the latest findings at (http://www.mdanderson.org/newsroom/news-releases/2008/intense-chemotherapy-wards-off-recurrence-in-half-of-mantle-cell-lymphoma-patients-after-seven-years.html.) Keeping a positive outlook on life along with family support and considering the many breakthroughs each day brings will help anyone with a serious illness towards the best outcome.
    I'll provide you with my email if I can further assist.

    Gary M.

    wernerbro@aol.com

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