Mantle cell lymphoma

Dianna2013

illead said:

Terrific news

That is wonderful Hunter, we are so happy for you.  Of course it is good news for us also.  Please let us know how you are from time to time.  You can contact us privately through this site also.  Thinking of you, Bill & Becky 

Mantle Cell Lymphoma

Hello,

I am in remission from mantle cell and I'm looking for someone who has this type of cancer to talk to.

Max Former Hodgkins Stage 3

Dianna2013 said:

Mantle Cell Lymphoma

Hello,

I am in remission from mantle cell and I'm looking for someone who has this type of cancer to talk to.

At the right place

Dianna,

I am sure illead will be answering you soon. She is our "Local-Talent Mantle Expert" here at the Board !

I am thankful for your remission,

max

illead

Max Former Hodgkins Stage 3 said:

At the right place

Dianna,

I am sure illead will be answering you soon. She is our "Local-Talent Mantle Expert" here at the Board !

I am thankful for your remission,

max

Hi Dianna

Welcome to the group.  Yes, my husband has MCL.  He was in remission for almost 2 years and then relapsed this past Feb.  He is on a brand new target drug that they had just released from clinical trials for MCL only as they really didn't have anything else.  He just had his 2nd CT scan and there is no MCL detected.  You can click on our picture and it will take you to our page where you can read more about our journey.  I know it is worrisome but they have come a long way with MCL and there is ongoing intense study on it.  You can Google Dr. Brad Kahl and the Lymphoma Research Foundation (LRF), you will find tons of info.  If I can answer any questions, don't hesitate to ask and you can message me personally also via CSN email in the left hand brown box.  The email goes through CSN and kept private unless those involved decide to share with each other.  Also you may want to start a new thread as this one is older or I can, if you prefer. 

My very best to you and hope to hear from you again.

Becky

Dianna2013

SAnneB84 said:

Dad Was Recently diagnosed
Hello All,

My dad was recently diagnosed with stage 4 Mantle Cell a few weeks ago - he has had 2 lumbar punctures w/chemo injections and has two more over the next two weeks. He started Chemo today and plans to have SCT sometime in the Fall. This has all been very shocking for the family - I am the oldest of three daughters at 27 and am trying to be the "strong" one for my family - it all hasn't sunk in yet - my dad has never really been sick in his life, and still doesn't look or act sick. I suppose that will change here rapidly now that treatment has started. This is what scares me the most and I feel I am not prepared for at all. Finding this discussion board and reading posts has helped comfort me in knowing that there is hope out there for people with this type of cancer. I look forward to discussions and sharing this journey with all of you.

Warm Regards to you all.

Mantle Cell Lymphoma

Hello, I'm new to this CNS. I was dianosed with Mantle Cell Lymphoma in 2013. Searching for someone with this type of cancer to relate to. Please reply,

Dianna

Dianna2013

illead said:

Hi Dianna

Welcome to the group.  Yes, my husband has MCL.  He was in remission for almost 2 years and then relapsed this past Feb.  He is on a brand new target drug that they had just released from clinical trials for MCL only as they really didn't have anything else.  He just had his 2nd CT scan and there is no MCL detected.  You can click on our picture and it will take you to our page where you can read more about our journey.  I know it is worrisome but they have come a long way with MCL and there is ongoing intense study on it.  You can Google Dr. Brad Kahl and the Lymphoma Research Foundation (LRF), you will find tons of info.  If I can answer any questions, don't hesitate to ask and you can message me personally also via CSN email in the left hand brown box.  The email goes through CSN and kept private unless those involved decide to share with each other.  Also you may want to start a new thread as this one is older or I can, if you prefer. 

My very best to you and hope to hear from you again.

Becky

Mantle Cell Lymphoma

 

Hello Becky,

First off, I'm so happy to find someone with this type of cancer and finally appear on the site as I've tried several times. I was dianosed August 2013 and now in remission. I went through chemo last winter ( R-Chop) and was to finish with the Stem cell bone marrow transplant. After several set backs from my chemo treatments and also a quadriplegic, it was decided I was no longer a canadaite. I am now doing Rituxan maintaince every 3 mos and a cat scan every 6 mos. From studying this cancer, I've learned it's much like lukemeia. My Oncologist has told me after much study that they've found no greater outcome from patients who had the transplant than not having it and just doing the Rituxan treatments. I read about the new drug that when one relapses (a pill taken twice a day) will hopefully shrink the tumors. I'm from Ohio and I'm being treated through the Cleveland Clinic. I've read one usually relapses within two years as I see your husband has. I'm sorry for him. I hope this new drug works for him and myself!! Am I correct about the drug? Forgive my mis-spellings. I should add I was 57 when I found out I had MCL.  MCL usually attacks men but cancer doesn't discrimate. (I don't see a spell ck on the tool bar)

Dianna

illead

Dianna2013 said:

Mantle Cell Lymphoma

 

Hello Becky,

First off, I'm so happy to find someone with this type of cancer and finally appear on the site as I've tried several times. I was dianosed August 2013 and now in remission. I went through chemo last winter ( R-Chop) and was to finish with the Stem cell bone marrow transplant. After several set backs from my chemo treatments and also a quadriplegic, it was decided I was no longer a canadaite. I am now doing Rituxan maintaince every 3 mos and a cat scan every 6 mos. From studying this cancer, I've learned it's much like lukemeia. My Oncologist has told me after much study that they've found no greater outcome from patients who had the transplant than not having it and just doing the Rituxan treatments. I read about the new drug that when one relapses (a pill taken twice a day) will hopefully shrink the tumors. I'm from Ohio and I'm being treated through the Cleveland Clinic. I've read one usually relapses within two years as I see your husband has. I'm sorry for him. I hope this new drug works for him and myself!! Am I correct about the drug? Forgive my mis-spellings. I should add I was 57 when I found out I had MCL.  MCL usually attacks men but cancer doesn't discrimate. (I don't see a spell ck on the tool bar)

Dianna

Hi Dianna

I'm sorry that you have had trouble finding anyone to talk to.  I think what happened (because it happened to me) is that you probably typed in Mantle cell rather than just going to the Lymphoma site.  I hardley found anyone until I did that.  There are few, as you know, with MCL, but I have been here regularly for over 2 years and monitor the posts everyday.  Bill had Bendamustine (Treanda)/Rituxan then Rit for 2 years every 2 mos.  He saw the onc the day before his last rit infusion when we got the news that his CT scan showed relapse.  We were shocked and so was the onc.  He had no symptoms and felt great.  He was not given R-Chop because he was too sick.  His bone marrow was 90% MC and his blood count was 1.6, thus they went the conservative route although Benda/Rit is used a lot for MCL now.  I have read that with R-Chop the chances of a longer remission are possible.  I am not sure about that tho, but it may be a little encouraging to you.  They also wanted to do a SCT but after emailing 2 doctors in Germany (specialists with MCL) and Dr. Brad Kahl, they all basically said it was a 50/50 decision.  Since he was doing so well after chemo, we decided against it and even tho he relapsed, we don't regret it.  The drug he is on now is Ibrutinib.  He takes 4/day about the same time each day.  The drug is outrageousy expensive but his drug supp for medicare picks up 80% and he is funded for the 20%.  His last CT scan a month ago showed no signs of MCL.  We are very fortunate and thankful of course.  We just listened to a webinar with Dr. Kahl a couple weeks ago and he says they are still making more progress in their research and they are extrememly excited about Ibrutinib.  So you have much to be encouraged about, I hope you can live your life without too much worry.  It's what we try to do.  We try not to think about it and just enjoy life, but it is hard sometimes, that is to be expected.  Please feel free to join us here, we are an understanding group and we welcome you.  Also of course I am always available and willing to talk anytime.

Thinking of you,

Becky

Dianna2013

illead said:

Hi Dianna

I'm sorry that you have had trouble finding anyone to talk to.  I think what happened (because it happened to me) is that you probably typed in Mantle cell rather than just going to the Lymphoma site.  I hardley found anyone until I did that.  There are few, as you know, with MCL, but I have been here regularly for over 2 years and monitor the posts everyday.  Bill had Bendamustine (Treanda)/Rituxan then Rit for 2 years every 2 mos.  He saw the onc the day before his last rit infusion when we got the news that his CT scan showed relapse.  We were shocked and so was the onc.  He had no symptoms and felt great.  He was not given R-Chop because he was too sick.  His bone marrow was 90% MC and his blood count was 1.6, thus they went the conservative route although Benda/Rit is used a lot for MCL now.  I have read that with R-Chop the chances of a longer remission are possible.  I am not sure about that tho, but it may be a little encouraging to you.  They also wanted to do a SCT but after emailing 2 doctors in Germany (specialists with MCL) and Dr. Brad Kahl, they all basically said it was a 50/50 decision.  Since he was doing so well after chemo, we decided against it and even tho he relapsed, we don't regret it.  The drug he is on now is Ibrutinib.  He takes 4/day about the same time each day.  The drug is outrageousy expensive but his drug supp for medicare picks up 80% and he is funded for the 20%.  His last CT scan a month ago showed no signs of MCL.  We are very fortunate and thankful of course.  We just listened to a webinar with Dr. Kahl a couple weeks ago and he says they are still making more progress in their research and they are extrememly excited about Ibrutinib.  So you have much to be encouraged about, I hope you can live your life without too much worry.  It's what we try to do.  We try not to think about it and just enjoy life, but it is hard sometimes, that is to be expected.  Please feel free to join us here, we are an understanding group and we welcome you.  Also of course I am always available and willing to talk anytime.

Thinking of you,

Becky

Ibrutinib

Hi Becky,

I've been meaning to get back with you. Everytime I do, I get interrupted. Well, after reading other posts, MCL seems to stay at what I've studied as far as people relapsing at two years. I am excited about the drug I researched that your husband has been on is successful. We really can't base our lives on two or four years considering, "Well, I've finished my chemo, in remission, that gives me two more years. Then I'll have the new drug, maybe I'll get two more." It's just that MCL seems merciless. I am living my life trying to forget I even have it. I've decided rather than mope around, I'll make the best of it. I'm traveling to Disney World in January with my family and did some traveling this summer. I have an 11 yr old granddaughter who keeps me going and she lives close. (same neighborhood :-) ) Even though I'm a quadriplegic, I'm very active, drive, shop, etc. None of us are quaranteed tomorrow. My husband was just diagnosed in September with Granulomatosis with Polyangiitis. He's having his last round of Rituxan as I write this. He'll have more in 6 mos. We joke about it...we're racing each other, who goes first. Life can be a cruel joke so ya just have to make the best of it.  Well, I quit rambling. I'll be checking back to see how your husband is doing. My best to both of you, Dianna

debbonjeffo

tuaddcs said:

2nd Clinical trial - so far, so good

Hi everyone,

My husband (Jay) was diagnosed with stage IV MCL 5 years ago.  He enrolled in a clinical trial at NIH in Bethesda, MD where he recieved the typical chemo drugs, but in at trial levels and combination.  After the 6 rounds of chemo, his MCL was in remission.  We were so happy.

But then, 2 years later, the cancer was back.  NIH recommended another trial - this time much closer to our home - that is testing a new experimental drug called Ibrutinib.

We asked about stem cell replacement, but NIH was much more excited about getting him started on Ibrutinib.

From what I understand, the drug is being tested in several locations throughout the US, Canada, and other countries.

Jay takes 4 capsules daily (that is the total chemo!).  He has been on the drug for 4 months now, and all CT scans are showing a remarkable change in the growths.  Most are 70% smaller.  The side effects are very minimal to non-existant.

My advice is to try to get into this trial.  Look up: Ibrutinib  and check to see if you qualify and if there is a location near you.

Right now Jay is in the hospital with pneumonia, but expected to come home soon. 

Hope this might be of help to someone,

Dani

MCL

Hi Dani,  my name is debbie and my husband was diagnosed with mcl in August 2013.  The docs did the "watchful waiting" for about a year because Jeff's energy was excellent  and he is now finishing RCHOP Tx and getting ready for the stem cell transplant.  He's 66.  I seem to be getting conflicting info on the Stem cell transplant.  I read that some ppl have rituxin every couple of months and the mcl seems to stay away.  Interesting. Anyway, I'm wonder how your husband is doing and what treatment options are available.  I know about ibrutimub (Pharmacyclics) and thought that the docs prescribe the drug after stem cell transplant.  

Any info you can offer would be great.  thanks Debbie

 

Dianna2013

hunter46 said:

Received word in July 2013 I am in my third remission.  Starting Retuxin maintenance next week.  Done with Bendomustine

How long did you go before first relapse? my doctor has me on Rituxin maintenance now. First remission.

Dianna

Dianna2013

debbonjeffo said:

MCL

Hi Dani,  my name is debbie and my husband was diagnosed with mcl in August 2013.  The docs did the "watchful waiting" for about a year because Jeff's energy was excellent  and he is now finishing RCHOP Tx and getting ready for the stem cell transplant.  He's 66.  I seem to be getting conflicting info on the Stem cell transplant.  I read that some ppl have rituxin every couple of months and the mcl seems to stay away.  Interesting. Anyway, I'm wonder how your husband is doing and what treatment options are available.  I know about ibrutimub (Pharmacyclics) and thought that the docs prescribe the drug after stem cell transplant.  

Any info you can offer would be great.  thanks Debbie

 

MCL

I had the R-Chop therapy and was suppose to have the stem cell transplant but from being a quadriplegic and a few set backs from chemo, they didn't think i'd survive the transplant. I'm 1 year in remission. I'm doing the Rituxan maintenance. My doctor told me they're finding no real signficance doing the transplant rather then, Rituxan.

Dianna

dhoren

marco427 said:

MCL Survival
First post: I was diagnosed with Stage IV MCL 10/2005, but based on enlarged lymph nodes that I noticed as early as 2002, I'm convinced (and my Onc agrees) that I probably had it long before that. I was evaluated at M.D. Anderson and started R-HCVAD chemo 08/2006. I was declared to be in remission 01/2007, but had an additional round of chemo after that. The good news: still in remission 52 months later. The bad: R-HCVAD can have some debilitating, long term side effects. I experienced severe neuropathy of the motor nerves to my lower legs, and now walk like a lame duck.

It would appear from the very slow advance of my case, that I had an unusually non-aggressive form of the disease.

BTW, I was 66 when I started chemo, and was told that my overall excellent health allowed them to prescribe it for a guy of my age. Normally, it's avoided for anyone over 60.

Question for Marco

Hello Marco,

Hope you still check this board.  I too have MCL and went to MD Anderson for 2nd opinion.  I am currently in treatment - 4 down 2 to go! and was in full remission after 2 treatements.  My question to you is did you get a stem cell transplant?   Seems to be the biggest issue to haunting me.   My Doc is saying not needed.  But I see several people on here that have had it and gotten good results.

Thanks

Don

cuznjon

illead said:

Treanda/Bendamustine
Here2,
I am so excited to hear your good news! My husband was diagnosed on July '11 with stage 4 MCL. His marrow was packed with cancer and rbc was 1.6. By the time he started chemo, we thought he was going to die. We are so thankful that he was given Treanda (Bendamustine)/Rituxan. From his first chemo in Aug '11 he made a dramatic turn around. Like you said he had no side effects, not even losing his hair. In about a month or so he went from a wheelchair to mowing the lawn again. He was in full remission by Feb '12 and feels better than he has for a few years. Doctors in Germany are the ones who have championed bendamustine/rituxan. We emailed a couple of them and they actually answered. We asked if he should now get a SCT and they said no since he is in his first remission, (know it is different for your husband as he relapsed from his first remission). These wonderful caring doctors basically said to sit tight and continue with the rituxan maintenance that he is on. They said if he does relapse, then there may be some new things out there etc. We encourage anyone with MCL to do research on bendamustine/rituxan. We think that since it is fairly new, there are no statistics yet but we are so encouraged by those doctors and by your husband's story. We wonder if B/R will work if he relapses. Please keep us informed how he is doing with the SCT and his progress, we are very interested. Our thoughts are with you, Bill and Becky

B and R tretment for mcl

First of all, Im so greatfull I found your story you are sharing. I used it to comfort my mom when I broke the news about my MCL iv stage. However, I only had <5% BM involvement with all nodes swollen. Onc doc suspected indolent B -type possibly not responding to chemo well. So blessed he chose 3 cycles of B and R immunotherapy wonder drugs (and scheduled following BMT) With Neulasta added to this, it was a breeze. My responce has been more than what I prayed  for (miracle after 3 cycles). My  nodes shrunk so much after the 1st cycle,  it  surprised the Onc. so much he ordered a PET scan for after my second cycle. MIRACLE ALERT! - PET scan totally clear! I asked the Onc. about a bone marrow biopsy, but he said it was not needed.  He and the BMT doc agreed to two more cycles of treatment which I just completed with anouther clean PET. The Onc. is  me ready to flip me to the BMT, but im not so sure. Im checking for a second opinion with the research dept. at Moffitt cancer center in Tampa. have appointment for 3-27-15. I see no reason why a maintence treatment cannot be done. Anyway, God bless you all for your kind help and comfort given to  everyone at CSN. 

 

 

                             

Dianna2013

cuznjon said:

B and R tretment for mcl

First of all, Im so greatfull I found your story you are sharing. I used it to comfort my mom when I broke the news about my MCL iv stage. However, I only had <5% BM involvement with all nodes swollen. Onc doc suspected indolent B -type possibly not responding to chemo well. So blessed he chose 3 cycles of B and R immunotherapy wonder drugs (and scheduled following BMT) With Neulasta added to this, it was a breeze. My responce has been more than what I prayed  for (miracle after 3 cycles). My  nodes shrunk so much after the 1st cycle,  it  surprised the Onc. so much he ordered a PET scan for after my second cycle. MIRACLE ALERT! - PET scan totally clear! I asked the Onc. about a bone marrow biopsy, but he said it was not needed.  He and the BMT doc agreed to two more cycles of treatment which I just completed with anouther clean PET. The Onc. is  me ready to flip me to the BMT, but im not so sure. Im checking for a second opinion with the research dept. at Moffitt cancer center in Tampa. have appointment for 3-27-15. I see no reason why a maintence treatment cannot be done. Anyway, God bless you all for your kind help and comfort given to  everyone at CSN. 

 

 

                             

B and R treatment

Hi,

I haven't been on for awhile. I was diagnosed in 2013. I went through R-Chop. I've been in remission since. I just had a cat scan last week & I have a rituxan treatment every 3 mos. I was supposed to have a stem cell transplant after chemo but I had several set backs from chemo as I'm also a quadriplegic (was drawn the wrong card twice in life), anyway, no longer  a canidate for the stem cell transplant. My oncologist told me (cleveland clinic) that having the rituxan treatment was just as well. I see him and a treatment Wednesday.

Dianna

Dianna2013

dhoren said:

Question for Marco

Hello Marco,

Hope you still check this board.  I too have MCL and went to MD Anderson for 2nd opinion.  I am currently in treatment - 4 down 2 to go! and was in full remission after 2 treatements.  My question to you is did you get a stem cell transplant?   Seems to be the biggest issue to haunting me.   My Doc is saying not needed.  But I see several people on here that have had it and gotten good results.

Thanks

Don

stem cell transplant

Hi Don,

I just responded to someone else. I was diagnosed in 2013 with Mantle Cell stage 4. I went through the R-Chop chemo. I was supposed to have the transplant. I had several set backs from chemo, also a quadriplegic so I was no longer a canidate. I have Rituxan treatments every 3 mos & a ct every 6. I'm being treated through the Cleveland Clinic. I was told by my Doc they're finding no better results from doing the Rituxan therapy vrs the transplant. 2015, still in remission.

Dianna

Jgates1972

yesyes2 said:

Itchy Skin
Hi and welcome to our little community. I was wondering if your husbands itchy skin might be caused by one of the many drugs I'm sure he is taking after his SCT. Or maybe it's good old fashioned dry skin. I did not have a SCT but my chemo drugs ceryainly dried out my skin something fierce. Another idea might be, was he given TBI, total body radiation before his SCT? Itchy skin can be a side effect of the radiation. For radiation burns my radiation oncologist recommended something with Aloe Vera. Great for most people but I was allergic to aloe. Another idea is baking soda baths, like what you do for small children with itchy skin.

Hope this helps some,
Best to you,
Leslie

Itchy skin

this could be an allergy to sulfur based antibiotics