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I Have Mantle Cell Lymphoma

Diagnosed Aug 2008, will be going through a stem cell transplant after the 1st of the year 2009. Am relatively healthy despite all the chemo. Just looking around for others with the same diagnosis.

ChicagoKeith ChicagoKeith 36-40 21 Responses Dec 9, 2008

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say me clearly about mantle cell lyphoma??is it completely curable when in 4 th stage???????????????

my boyfriend is diagnosed with mantle cell lymphoma i have been reading about it and im confused ,some say mantle cell lymphoma is not curable he is in stage 4 ,can someone please put my mind at reast to wether it is curable or not ty xx

I was diagnosed withMCL aug 2010 went through 6or 7 chemo treatments.. then stem cell transplant with my own cells that was april 19th 2011. With the exseption of being very fatiqued after ANY physical activity I REALLY FEEL GOOD (but I'm setting in my lazyboy recliner). Iwas just at the doc's office she said all blood counts look good and I should keep pushing myself but still seemed not to promise that I should exspect to be feeling a 100% they always want to say it will just take time and thats when I ask how much time do I have? She says if I can get to 2 years post transplant very good chance 4-6+ PLEASE HANG IN THERE stem cell was tuff but YOU GET THROUGH IT I can go into more detail if you wish to hear more. LAST year holidays were tuff but look forward to it this year<br />
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My late husband was diagnosed with MCL in Aug '00 and passed in Feb '03. He had RCHOP for 5mos and did well, but relapsed almost exactly 1yr to the day of diagnosis. He then had intense chemo for 3wks, followed by SCT. The transplant did not take, he suffered extensive Host VS Graft Disease and passed away, leaving me with 2 daughters aged 13 + 15. The effects of HVGD seemed to me worse than the actual cancer itself. I see they are making great strides/success with current chemo regimens. I wish you all Luck and Love in your battles <3

I'm Ellen, the wife David who was diagnosed with stage 4 MCL last October 2010. He had an Autologeous transplant in July and although it is early days he doesn't seem sick at all.I'm hoping everyone who posted here are all doing well. Our own Doctor will not say there is a cure. We are only buying time with the stem cell transplant. What I've read here is very exciting! good luck to all of us!

The above article is very misleading. The headline "Mantle Cell Lymphoma Curable..." is contradicted later in the article by the doctor running the study. He said the approach "may be curative." Further, the intensive approach is not available to older patients - who make up the great majority of mantle cell cases. Finally, 3 of the 144 patients died from the intense regimen. My guess is that their families would not consider them cured! <br />
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I have mantle cell and think this kind of reporting terribly irresponsible.<br />
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John Bryan

Mantle Cell Lymphoma is Curable With Intensive Immunochemotherapy: Presented at ASH<br />
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By Sophie Bainbridge<br />
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ATLANTA, GA -- December 10, 2007 -- A rare, but deadly form of cancer, mantle cell lymphoma, is curable using intensive immunochemotherapy, according to a researcher speaking here at the 49th American Society of Hematology (ASH) Annual Meeting and Exposition.<br />
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Until now, mantle cell lymphoma (MCL) was thought to be incurable. Patients with the disease have a grim prognosis, with more than half dying within 4 years of their initial diagnosis.<br />
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However, in a phase 2 study of 160 patients with MCL, six cycles of intensive induction immunochemotherapy -- a combination of high-dose cytarabine, maxi-CHOP chemotherapy, rituximab, and stem cell transplantation -- produced a 5-year event-free survival and overall survival of 63% and 74%, respectively, for all patients enrolled in the trial.<br />
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Of the 144 responders who completed treatment, 72% were without disease at 5 years, a result unheard of before now, according to study presenter Christian H. Geisler, MD, PhD, Chairman, Nordic Lymphoma Group, and Consultant, Department of Hematology, Rigshospitalet, Copenhagen , Denmark .<br />
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Dr. Geisler reported the final results of the 2nd Nordic MCL trial after a median of 3 years follow-up from study entry at a press briefing here. The unrandomized trial included untreated patients aged 66 years or less. The majority of patients (84%) had stage IV disease, 128 patients had classical cytology, and the rest had blastoid/pleomorphic cytology.<br />
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Following six cycles of intensive induction immunochemotherapy with alternating cycles of rituximab, maxi-CHOP (dose-intensified CHOP - day 1: cyclophosphamide 1200 mg/m2, doxorubicin 75 mg/m2, vincristine 2 mg; and days 1-5: prednisone 100 mg), and rituximab plus high-dose cytarabine, patients who responded received BEAM/BEAC chemotherapy -- a combination of carmustine, etoposide, cytarabine, and either cyclophosphamide or melphalan -- with in vivo purged rituximab autologous hematopoietic stem cell support.<br />
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Most (96%) of the patients responded to the induction therapy, with a complete response in 55% and a partial response in 41%. The 91% of responders who completed treatment had a 72% 5-year response duration, Dr. Geisler said.<br />
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Six (3.8%) patients died as a result of their treatment.<br />
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Of 77 patients with available primers, 90% had negative results on polymerase chain reaction (PCR) 2 months after autologous hematopoietic stem cell transplantation. Those patients who remained PCR-negative for more than a year posttransplantation had a significantly longer clinical response duration than patients who did not (P <.0001).<br />
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The addition of rituximab may have been responsible for these results, Dr. Geisler commented. Compared with the 41 patients of the first Nordic MCL study who received four cycles of maxi-CHOP without rituximab before BEAM or BEAC plus autologous hematopoietic stem cell transplantation, the overall survival, event-free survival, and response duration were highly significantly increased.<br />
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"These results now allow us to believe that this intensive approach may be curative," he concluded.<br />
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Both studies were supported by the Danish Cancer Society and The Nordic Cancer Union. Dr. Geisler disclosed that he receives research funding from Roche and Bayer Schering Pharma, honoraria from Bayer-Schering Pharma, and that he acts as a consultant for Bayer Schering Pharma, Fresenius, and Genmab.

MidwestMelissa is the wife of ChicagoKeith

Hi Keith, Like I have told others, remain positive! You are fortunate that modern medicine is advancing at a fast pace. I am in remission from mantle cell for 7 years.<br />
God Bless.

Keith is doing WONDERFULLY after the SCT. You wouldn't even know he had cancer. The chemo before the transplant really exhausted him, REALLY. But after he recovered, he is almost as good as new. Still on disability, and our understanding is that it can come back at any time, but there is no evidence of the cancer. Quite a turn from a year ago when we thought he was going to live for 1-5yrs. If you are a candidate for a Stem Cell Transplant, I would definitely recommend it - it worked for us. I'm so happy to have my Keith back.

Great to hear about Keith! It is encouraging news! From all that the doctors have told us and all that I have read the latest treatments are very positive. And I believe time is our ally...more time = more advances. I will keep you in my prayers. Please keep me posted.<br />
My sister is in the hospital again...she is 3 for 3...3 chemos - 3 fevers, but been popping back quicker each time. She has a great attitude and much to live for.

We just found out ...Keith is in Remission. Which apparently means (for MCL) that without the SCT that he will be fine for around a year before things start to show up again, and with the SCT, 5yrs. These are averages, and it could be MUCH LONGER or MUCH SHORTER but of course, we always hope for longer. He's doing quite well. He is going shopping, walking on the treadmill, and his spirits are quite up. His legs hurt so he's going for an MRI, but we're hoping it's unrelated. But we are so very happy!

Hi Keith's wife, how is Keith doing??<br />
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Hi Flowingchi - how are you? Can you give me any info on your therapy - tips...feelings...experiences that may help me help my sister through this?

I'm really not a blogger, but I completely encourage you to start one & keep posting-don't go by me. I'm sure people will find it informative & comforting (you did).

Maybe we can form a "living with MCL blog"...what do you think?

Hi Keith,<br />
My sister was diagnosed with MCL in the fall. She too will be going for a SCT in a few months. She has just had her 3rd treatment. She has lost all of her hair and has been hospitalized after the first two treatments for infections, but she is in relatively good spirits and health. I am looking for a forum where others are experiencing the treatment to help us cope and understand the process. I hope that your transplant is successful and will pray for you.<br />
I would like to say that I have read about a man who has been through the treatment (RCHOP & SCT) over last year and is back to work and doing well. His wife writes about it in her blog "http://caregivingwithgodslove.blogspot.com/". She gets a bit too biblical for me, but also has some informative things to say. The best part is that her husband's treatment was successful. I believe there is hope, this new treatment has given hope to all who are diagnosed with this disease. Please keep writing...I will too...anyone got any info or stories to share????

Hi, Ron. I'm the wife. Keith's Auto-Stem Cell Transplant is scheduled for mid-February. He's been through so many chemo's that I can't even keep track anymore. In fact, when he went into the hospital last time, they decided to give him an even more aggressive dose of whatever it was. He has been very strong throughout all the chemo treatments, which is great. This last one was rough, though. He's just getting back to normal now after being home for 2wks. We're still very optimistic. And honestly, if you are a candidate for an auto-sct, and if you are strong enough to handle the chemo, then I see no reason not to run full force into getting the sct. That is my opinion. I completely wish you the best. I know how rare this is, and I hope you have a support system to help you. People think you have 'lymphoma' and you'll be fine, but you have a tougher battle than just any curable lymphoma. Stay strong. But the option of the stem cell transplant has been out there for a year now, and from what I've heard, this aggressive/incurable disease is now potentially curable with the stem cell transplant. It's been a long road (since Aug diagnosis), but we're ready. Sorry to be so lengthy - I'll repost after the transplant.

Hi Chicago Keith---Hope you're doing well; I also was diagnosed with MCL in the Fall; am near completing 6 rounds of RCHOP; and considering an autogenus stem cell procedure; so I'm interested in learning more about your experience; how long after completing RCHOP treatment before you began stem cells; have you completed your stem cell treatment yet; how was it for you. I wish you a speedy recovery and long lasting remission. Warm Regards ---- Ron Israel

Hi, mom of patient. I'm wife of patient. Keith's lymphoma is noncurable. Even with the SCT, my understanding is that it will only prolong the remission, but for YEARS, which is wonderful considering what the prognosis was prior to the transplant option. Then, years from now, we will have to reassess our options. He read your story and he liked it very much. It made him smile. It's nice to see that people are so strong and fight so hard, although I'm not sure what specifically made him say, "That's SO nice!" I, too, wish you & your family the best. I now know what they mean by 'good days' and 'bad days', and we're just always so grateful for the 'good days'. We are in suburban Chicago, so we (fortunately) have access to MANY excellent hospitals, and several cancer hospitals. Our decision was based on which cancer hospital fell 'in network'. Despite the cancer, we are blessed in ways I can't even list. Still, things are hard sometimes. But my husband & I were close before this, and so it was easy to be close THROUGH this. I can't imagine him going through this alone. Your daughter is very fortunate to have friends & family pulling through this with her. And clearly she is positive and she is hopeful. She is dating. So that's just great. We feel lucky that we came across you.

live 15 min from the university hospital...forgot to put min in there....

Hi there....I don't have the disease, but my oldest daughter was diagnosed last year of Hodgkin's Lymphoma, and she, too is preparing for a stem cell rescue right after New Years.....She is on high dose chemo, right now, and will get stem cells harvested in a few weeks....<br />
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Her oncologists say the rescue will pretty much make it as if she never had the disease....which will be wonderful.....I am not sure of your staging, or prognosis or even the reason they opted for stem cell...but my daughter had some resistant cells, after ABVD, and they decided since she is so young (23), they don't want her to worry about recurrance, since she had resistant cells.<br />
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She, too, is very healthy, other than Hodgkins, which is why she and you qualify for the rescue...Some folks can't have it, due to their medical situation...<br />
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How are you handling all this? How long have you been diagnosed? This has been very hard on my girl, and all of us....To watch her have to go through all this treatment, and now the rescue...it's a mother's nightmare.....But, God is healing her...she has gained 30 pounds back....she met, and got engaged to a guy who treats her like a princess (which she is)....She is a survivor....and this whole experience has made her stronger....<br />
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Not every hospital does stem cell rescue....was it hard finding one in your area, or will you have to travel for treatment? How long did they say you will have to spend in the hospital? We are fortunate that we live 15 from a teaching university hospital with renound researchers in this field...they do about 150 rescues per year....<br />
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I wish you health and happiness...