I visited my doctor at Penn last week and received another clean bill of health. In just a few weeks I will be officially two years out of chemo and I continue to be in complete remission.
That’s the good news.
Here’s the better news.
When I was diagnosed with lymphoma now almost four years ago (I went untreated for almost two years), the median remission for a patient diagnosed with my subtype of lymphoma was 4-5 years (with few options with recurrence). My lymphoma, MCL, was often referred to as a “poor prognosis lymphoma,” and the internet was filled with scary statistics that left me wondering if I’d reach my mid-40s. And even though my doctor (and others) had told me that the tide had turned with MCL, and that that sea-change was not yet reflected in the medical literature (patients were surviving the disease, they said), it was still horrifying to read some cancer websites which still called my disease incurable.
Well, folks, all that seems to be changing. And quickly.
First, a recently published article in the journal Blood suggests a cure for MCL for patients treated with a very aggressive transplant regimen:
A second study, presented recently at the American Society of Hematology, significantly extends the median failure free survival time for MCL (to 7 years) for patients treated with R-Hyper CVAD (what I had), and is also suggestive of a cure (there is a tail on the survival curve–some patients are almost 10 years out), but only time will tell for that:
http://ash.confex.com/ash/2008/webprogram/Paper7302.html
Keep up the good work doctors and scientists. This is all great stuff. Thanks!!!
Bald Mike's Blog 
sweet relief. i love you. mom
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Well, Mike, did we know all of this stuff before? Great news, indeed.
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Born in Princeton, living in Colorado most of my life, I am in biopsy phaseof probable lymphoma diagnosis. My wife was diagnosed with brain tumor also last month! We live 250 miles form nearest city. Your blog is helping me to develop questions for my BIG consultation. Our blog is “Meningioma Lymphoma.” Good work !
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I live in Arizona, was diagnosed with Mantle Cell non hodgkins lymphoma in March 2009-last stage. I decided to not do chemo or bone marrow transplant. I just had my 3rd pet scan today. I am totally getting better. It's amazing. I go to the Burzynski Clinic in Houston Texas. He also specializes in Brain tumors–so much success!Margaret Manningmusicmanning@gmail.com
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Hi everyone and God bless all of you. My Brother 46 was just Diagnosed with MCL Mantle cell Lymphoma.He is now scrambling to find financial assistants before the hospital will do further checking.He went in to see his doctor because of swollen glands on his neck that he has had for what seems like at least a year and always thought the swollen glands were contributed to his work or home surroundings. My Brother runs a tree service and has trucks and equipment that spews out a lot of diesel fumes to the point when things are started up you have to run for cover just to find some fresh air! I wonder if 20 years of this kind of environment can be a cause of this cancer? Also about 2 years ago, after a raccoon fell through the ceiling of the house he's renting he and his girlfriend noticed black mold all over the attic.He paid some company to analyze the house for mold.They said it was so bad that there was even readings outside the house.He went to some kind of specialist doctor to get checked out but when they told him they needed 3,000.00 to run test he just let it go. I just wonder because no one seems to know what causes these cancers are there any links to these environments? yes he still lives in the same house.They fixed the roof witch caused the water leak but i am sure the mold is still in the attic. allorconstruct@sbcglobal.net
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Hi everyone and God bless all of you. My Brother 46 was just Diagnosed with MCL Mantle cell Lymphoma.He is now scrambling to find financial assistants before the hospital will do further checking.He went in to see his doctor because of swollen glands on his neck that he has had for what seems like at least a year and always thought the swollen glands were contributed to his work or home surroundings. My Brother runs a tree service and has trucks and equipment that spews out a lot of diesel fumes to the point when things are started up you have to run for cover just to find some fresh air! I wonder if 20 years of this kind of environment can be a cause of this cancer? Also about 2 years ago, after a raccoon fell through the ceiling of the house he's renting he and his girlfriend noticed black mold all over the attic.He paid some company to analyze the house for mold.They said it was so bad that there was even readings outside the house.He went to some kind of specialist doctor to get checked out but when they told him they needed 3,000.00 to run test he just let it go. I just wonder because no one seems to know what causes these cancers are there any links to these environments? yes he still lives in the same house.They fixed the roof witch caused the water leak but i am sure the mold is still in the attic. allorconstruct@sbcglobal.net
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Hi everyone and God bless all of you. My Brother 46 was just Diagnosed with MCL Mantle cell Lymphoma.He is now scrambling to find financial assistants before the hospital will do further checking.He went in to see his doctor because of swollen glands on his neck that he has had for what seems like at least a year and always thought the swollen glands were contributed to his work or home surroundings. My Brother runs a tree service and has trucks and equipment that spews out a lot of diesel fumes to the point when things are started up you have to run for cover just to find some fresh air! I wonder if 20 years of this kind of environment can be a cause of this cancer? Also about 2 years ago, after a raccoon fell through the ceiling of the house he's renting he and his girlfriend noticed black mold all over the attic.He paid some company to analyze the house for mold.They said it was so bad that there was even readings outside the house.He went to some kind of specialist doctor to get checked out but when they told him they needed 3,000.00 to run test he just let it go. I just wonder because no one seems to know what causes these cancers are there any links to these environments? yes he still lives in the same house.They fixed the roof witch caused the water leak but i am sure the mold is still in the attic. allorconstruct@sbcglobal.net
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Hi everyone and God bless all of you. My Brother 46 was just Diagnosed with MCL Mantle cell Lymphoma.He is now scrambling to find financial assistants before the hospital will do further checking.He went in to see his doctor because of swollen glands on his neck that he has had for what seems like at least a year and always thought the swollen glands were contributed to his work or home surroundings. My Brother runs a tree service and has trucks and equipment that spews out a lot of diesel fumes to the point when things are started up you have to run for cover just to find some fresh air! I wonder if 20 years of this kind of environment can be a cause of this cancer? Also about 2 years ago, after a raccoon fell through the ceiling of the house he's renting he and his girlfriend noticed black mold all over the attic.He paid some company to analyze the house for mold.They said it was so bad that there was even readings outside the house.He went to some kind of specialist doctor to get checked out but when they told him they needed 3,000.00 to run test he just let it go. I just wonder because no one seems to know what causes these cancers are there any links to these environments? yes he still lives in the same house.They fixed the roof witch caused the water leak but i am sure the mold is still in the attic. allorconstruct@sbcglobal.net
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I didn't understand the concluding part of your article, could you please explain it more?
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Bald Mike,Any new news?I had a 680,000 white count at diagnosis. female, 54 yrs old.Had R-CHOP, Rituxan/Velcade and remission. bone marrow transplant (mini half-match) The graft failed after a week but I'm in complete remission and clean at 6 months post transplant. Feeling good and believing in long-term “cure” for mantle cell lymphoma.Keep believing.RJ
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Hi, my husband, Tommy was diagnosed with Mantle Cell in 2003,he underwent rounds of chemo for 6 months, then in 2004 underwent an allo transplant in Atlanta, he has passed the six year mark and is still living healthy, has lots of energy, he will turn 70 in February 2011. His platelets are low and probably will never quite recover, he received a treatment of IVIG every winter to boost his immune system, other than that, now he only receives a ct scan once a year. I am hopeful that he will go right into his 80's with no trouble, but 7 years ago, didn't know if he would survive 2 years. Thanks to his great doctors and the aggressive treatments he went through, life is great again.
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In June 2009 .I was diagnosed with mcl.I recieved 6 months rchop.I am in remission.The doctor want me to have a stem cell implant.Iam 66. I'm not sure about the stem cell .I'm worry about the treatment.
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In June 2009 .I was diagnosed with mcl.I recieved 6 months rchop.I am in remission.The doctor want me to have a stem cell implant.Iam 66. I'm not sure about the stem cell .I'm worry about the treatment.
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Good luck with the treatment. I had R-HYPER CVAD without a transplant. You should ask your doctor if a transplant is recommended with R-CHOP. Best, Michael
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Just found your blog – have one of our own too for my husband who was diagnosed with mantle cell lymphoma in February of 2011. Wow how our lives have been turned upside down since then. He is undergoing the Nordic treatment plan and will start stem cell transplant process middle to end of June at UCLA. It's been a roller coaster for sure, but they are really talking about longer term survival rates than what most of the articles on the internet discuss. I think a lot of that info is outdated. The stem cell will be rough for sure, but well worth the additional years we expect to gain. Does anyone autologous stem cell transplant experience to share? Our blog is http://www.keepingupwithed.blogspot.comand we've had over 15,000 pageviews since starting it. I highly recommend that anyone going through this process start a blog for family and friends to keep track of progress. Otherwise your phone will never stop ringing and you'll be a basket case from repeating the same information a hundred times. Besides, being on the phone leaves no time for caregiving, either of the patient or yourself! Update the blog once a day or every other day and let it go. Also, very cathartic! Keep praying and thinking positive. It works!
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