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Mantle cell lymphoma

Ncros814
Posts: 2
Joined: Feb 2011

Hi Everyone: My husband was diagnosed with mantle cell lymphoma in September. He went through R Chop and had an auto stem cell transplant in February. First Pet scan after stem cell was negative. Are there any stories from long term survivors of mantle cell lymphoma? After going through Rbeam and the transplant we are still worried. Also he has been having "itchy skin" for which they prescribed low dose Prednisone and a cream but he still is itching. It seems to move from arms to legs and the facial area and he's not getting any relief. Has anyone else had this reaction? We would appreciate any help. Thanks

yesyes2
Posts: 462
Joined: Jul 2009

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

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

I agree with Leslie about the skin. I never had radiation but after r-cvp my skin dried out terrible as well. Never really had the itchy skin but when I would just scratch my arm the white flakes flew all over the place. I used Cure'l healing lotion every morning. It does a great job. I am sure any body lotion will have the same effect.My fingernails even got to the place they were like cardboard. It has all gotten better since I have been out of treatment for 6 months. John(FNHL-1-4A-5/10)

hunter46
Posts: 8
Joined: Apr 2013

See Benda mustine and itching for my response Does anyone else have input to what I posted ?

Ncros814
Posts: 2
Joined: Feb 2011

Thanks everyone for your comments on "itchy" skin. Our doctor seems to think this is "contact" dermatitis so we switched soaps and laundry detergents but to no avail. He is using a prescription steroid cream but it hasn't helped either. He gets flushed at night at certain times and his face gets beet red and itches but then goes away. We can't help but worry that this is a side effect from the chemo he got before the stem cell transplant. I really wish we could hear from someone who has survived mantle cell lymphoma post stem cell transplant. He is worried that it will come back quickly and mentally this is worrisome for both him and I. The only thing we can do is pray for the best! Hugs to all of you!

yesyes2
Posts: 462
Joined: Jul 2009

Hi,
I'm sorry your husbands itchy skin and red face is not getting better. Has your doctor tried uping his steroid doses as preds have been known to help? One last thought which I didn't mention last time as I didn't want to upset you in any way is GVHD. It is very rare in Auto transplants but still is a possibility as it can and does happen. I also have heared of a condition similar to GVHD, it mimics it, in Auto SCT. GVHD is very common in Allo transplants and is a side effect of the body getting its new immune system, something like that. I am not a doctor but if it were me or my husband I would push for a skin biopsy to see if it is GVHD.

I hope you and your husband find some relief soon. Please let us know what the outcome is. Blessings to you,
Leslie

Aliwoo
Posts: 1
Joined: May 2011

My husband was diagnosed with Mantle Cell in April 07. He had stem cell transplant and is still in full remission.
He had dreadful itchy skin which was treated with an aqueous cream. This gradually went away but it took a couple of years after treatment finished.
I found it almost impossible to find information or survivors in the UK when he was diagnosed and undergoing treatment so it was a really lonely journey. This forum is a bonus for you guys in the states - at least you can communicate with each other.

marco427
Posts: 1
Joined: May 2011

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.

SAnneB84
Posts: 1
Joined: Jun 2011

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.

chemtech
Posts: 1
Joined: Jun 2012

My husband was just diagnosed today, and I am terrified. He will have his initial PET scan and meeting with the oncologist next week. My dad just died from Chronic Lymphocytic Leukemia on April 17. Did I mention I am terrified? My husband and I have 6 year old twin daughters. It is good to read the posts on here and learn that there is some hope out there. Sorry for the rambling, but I am in shock....
Thank-you

janbradhan
Posts: 2
Joined: Jun 2012

My husband was diagnosed one year ago with mantle cell lymphoma stage IV. In Remission now, however, we anticipate it coming back eventually. One thing that helped us was keeping a blog of everything. Journalling does magical things for the heart and sole. Here is the link if you want to see what our journey was, and a journey it was and still is. Another colonoscopy is next week, of course, we hope it to be a clean report, but anticipate more news of treatments ahead. http://mantlecelllymphomacaretaker.blogspot.com/

Let people, family, friends, coworkers help. They want to and you will need it. May God bless you, your husband, and daughters. We are closer now because of the cancer journey, would not want to wish it on any one, yet maybe so, because we have been so abundantly blessed.

Here2
Posts: 1
Joined: Sep 2012

I see this comment is old and maybe you haven't checked back in. I hope you are on your way through a sucessful treatment. I so clearly remember feeling like you and we somehow got through it. My husband did R-CHOP and they wanted to do a stem cell transplant. Weren't able to do it - his bone marrow had been traumatized by the chemo and wouldn't produce enough stem cells. So we had some good time and then the cancer came back. The chemo they used this second time around was so much easier and effective in only two treatments. Trianda. Amazing drug - what a difference from the R-CHOP. I so appreciate the people who develop these drugs. He has now had an autologous transplant and we are going through that process. So far so good.

illead's picture
illead
Posts: 566
Joined: Aug 2012

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

Seabrook
Posts: 6
Joined: Sep 2012

I was so pleased to see your comment about the B/R regimen, even though our circumstances are somewhat different. My husband was first diagnosed with mantle cell in 2006, went through Hyper-CVAD & and an auto SCT, then was in remission for five wonderful years. About a year ago, the mantle cell returned, and since then he has been on Velcade and Rituxan. This has worked well for the most part, as he has had few side effects, and life has been essentially completely normal except for all the clinic visits.

Unfortunately,however,the last PET scan showed one remaining node that was still growing. Since any growing mantle cell is obviously a cause for concern, next week they are adding bendamustine to the drug regimen. We have been pleased by all the studies we have read about it, which seem to show very good results, but hearing some real-life examples is extremely encouraging.

I'm so glad to hear that your husband has had no side effects and is now doing well. Just one question - how greatly were his blood counts affected? And did he have to have Neulasta or any other type of WBC booster?

onlytoday's picture
onlytoday
Posts: 596
Joined: Jun 2010

Hi,

I just want to jump in here. I do not have Mantle Cell. I have Nodal Marginal Zone Stage IV. Originally was given Rituximab in 10/2010 which didn't put me in a full remission. It did give me an allergic reaction after the four infusions - ended up in the hospital.So I cannot have it again.

We did some watchful waiting and then in May I started a Treanda protocol. In July we added Ofatumumab to the Treanda. For the first time since dx (and for a few years before that) I feel so different. (Better) It is working, with minimal side effects. For years my body ached- and I just didn't know why. Now I do.

So to your question: I did have a shot of Neulasta the first time I had the Bendamustine. I ended up with a sustained temp of 102.5 - back to the hospital again. After that they wouldn't let me have it and found that my counts come up to an acceptable level in about 10 days without any intervention. I do lay low for that time frame though because of the danger of infection- since the counts are low then.(No stores, restaurants, etc) Others will jump in I'm sure that have had Neulasta successfully. One thing I will say about it- made my bones hurt which is what they tell you. But it is temporary.

Hope this helps. I think Bendamustine and Ofatumumab are amazing. I am so grateful that if we had to get this dreaded disease, it is now. So much progress has been made, a cure is around the corner I'm sure. Someone mentioned that Treanda (Bendamustine) is from Germany. It is. My father's family was from German- kind of a cool connection. Germany rocks!

There are not a lot of stats on either of these two drugs yet- they are so new. I think they both have trials running. We are lucky to get our hands on them this early.

God bless to all.

Donna

Seabrook
Posts: 6
Joined: Sep 2012

Thanks, Donna. I will keep your experience in mind if Neulasta is mentioned and see if they will wait to see how quickly my husband rebounds on his own. Back in 2006, his counts came back up pretty quickly after chemo, so hopefully that will still be true. He has had no count problems with Velcade, so we haven't had to deal with this for a long time!

I have been able to find quite a few studies on bendamustine, and the results look very good, so we are optimistic. And stories like yours just make us more so, so thanks for sharing! I hope all continues to go well for you. It's a rough road, but these new drugs are really great and give us all hope.

illead's picture
illead
Posts: 566
Joined: Aug 2012

Sorry about your husband's relapse, Seabrooke. Even tho we are happy during remission, it is always a dread in the back of our minds. It sounds like you are on the right track though and think Bendamustine is the right call. I'm sure he will do well. You asked about my husband's lowest blood counts. Are you ready? His rbc: 1.6, wbc: 10.5, hemo: 5.6 and platelets" 33. Yes, he was walking death, actually not walking. He was given EPO (procrit) shots once a week during his chemo until his blood levels came up. His first chemo of B/R was only 1/2 dose and the next 3/4. He was doing so well they just kept him on 3/4 the entire time. Yes he did have a neulasta shot a day after each chemo. No side effects or bone aches although I know it is a side effect but he is normally a very healthy guy, never sick a day in his life until MCL. Sorry for you Donna about the rituxan. I know it does have bad side effects for some. Bill is on it after chemo every 2 months for 2 years in hopes that it will mark any future cancer cells and his immune system will kill them. We are doing some alternative things to build his immune system. I have never heard of Ofatumumab but will check it out. Yes you are right, Germany rocks. In fact if you research Bendamustine/Germany you will find some interesting info. One thing is that Benda is an old med developed behind the iron curtain but just now being used for MCL. It is recognized now in the US just not many docs know about it. In fact they don't know a lot about MCL. That is why we have to do our own research. In talking to the German docs we asked if there was any treatments for MCL or relapsed MCL available in Germany that are not available here and they said no, not at this time. We have everything they have at the moment. So that is good to know. Bill found some very interesting info about STAT 3 inhibitors. Here is a link http://www.sciencedaily.com/releases/2012/07/120718122730.htm. You may have to cut and paste to your address bar. Well, both of you, I hope this has helped and please keep us informed of your progress. We are so interested to know how your husband will do with the Benda, Seabrooke. We're going to beat this maniacal disease! Our thoughts and best wishes to all. We can email also if you want......GO BENDAMUSTINE!

Seabrook
Posts: 6
Joined: Sep 2012

Thanks so much for all the info! My husband starts bendamustine on Wednesday, so I'll let you know how it goes. We're hoping that he has as easy a time as most people seem to. Fortunately, he feels great and is in perfect health otherwise, so that should help.

illead's picture
illead
Posts: 566
Joined: Aug 2012

Thanks, I always check back, so will keep an eye out. Without Rituxan, it shouldn't take long getting the chemo so he will probably be in and out. You might ask about the Rituxan as it does mark the cancer cells to help the Bendamustine to attack, just a thought. We will be thinking of you both, Bill and Becky

onlytoday's picture
onlytoday
Posts: 596
Joined: Jun 2010

Hi all,

Ofatumumab is also a monoclonal antibody like Rituximab. The difference is that Rituxan is form murine protein (mouse) and ofatumumab is from human protein. I am apparently allergic to mouse! since I could not tolerate the Rituxan but after an initial reaction I've done well with the Ofa. Ofatumumab also marks the cancerous cells on a different part of the cell but guides the chemo to them like Rituxan. Just FYI for anyone who needs to know!

It works great for me and I think might help others as well.

Blessings to all.

Donna

illead's picture
illead
Posts: 566
Joined: Aug 2012

I have been checking on the internet about the Ofatumumab and think it is still in clinical trials or else not released yet for MCL. I'm not sure though. That is what I get from my initial searches. It certainly sounds encouraging though to know that new things continue to be on the horizon. Becky

onlytoday's picture
onlytoday
Posts: 596
Joined: Jun 2010

Becky,

That is very possible. I was told and read that it has been approved by the FDA for tx for Non-Hodgkins Lymphoma. But since there are 60+ kinds I'm sure there are specifics to that in the fine print somewhere. Sorry if I disappointed anyone- that certainly was not my intention! Quite the opposite! Hopefully this fabulous drug will be released for use for more in the near future! And if not there will be other amazing discoveries in the near future- I'm sure!

Blessings,
Donna

Seabrook
Posts: 6
Joined: Sep 2012

Thanks, illead. John has actually had lots of Rituxan, and fortunately it has always worked well for him with no side effects at all. It was part of all six rounds of R-Hyper-CVAD back in 2006, then he had it as maintenance for several months after his auto SCT. And since the relapse a year ago, he's been getting it every three weeks, along with the Velcade. So Rituxan is definitely our friend! What with adding the bendamustine, we figure this is going to be about a four-hour infusion. They're also doing a shot of Velcade, so it's a three-drug day.

illead's picture
illead
Posts: 566
Joined: Aug 2012

It sounds like John is in good hands. Your docs are out to obliterate those little demons. Oh good, I had forgotten from your first post that he was already on rit. Hope your cancer center is as good as ours. The nurses make us feel like royalty and they love their jobs. We actually look forward to Bill's treatments. He has his next rit maint on the 15th, then the next day we are off to Cabo for some r&r. Will have the internet there. We were reading the doc's notes on his med records, under neurological the doc wrote "grossly intact" Who knew? :) It's amazing what experts we become isn't it? We are very anxious to hear if John gets rid of that nasty little node. It will give us more to be optimistic about. Thanks for your support and positive attitude. As always, Bill and Becky

Seabrook
Posts: 6
Joined: Sep 2012

Hope you guys have a great trip, illead. We're also getting away between the next two treatments - spending a week at Kiawah Island and planning to not think about cancer and cancer centers at all! Which center do you go to? We're at Emory Winship in Atlanta.

illead's picture
illead
Posts: 566
Joined: Aug 2012

We own a small condo in Cabo so will be gone for 3 weeks. Our son will spend the first week with us. He lives in NY but his wife can't get time off so just him but it will be fun. A nice serene lake sounds nice too. Our Cancer Center is in Marysville CA. A no nothing little town but the center is through Univ of CA Davis and is one of the top ones in N CA. We'll be checking the discussion group while in Cabo.

jim1519
Posts: 1
Joined: Oct 2012

First post ! So - Hello everyone. I was diagnosed with MCL in June of 2011. Somewhat indolent acting and Leukemic presentation (no lymph nodes just spleen, blood and marrow).
My spleen grew to 25 cm by 22 cm - Huge! When it started to compress my left kidney, it was time to treat. I got lucky and got into a clinical trial comparing R-HyperCVAD to B/R and got randomized to the B/R arm - Both arms will be followed with autologous stem cell transplant if remission is achieved.
This is my third cancer (colon 1992, prostate 2008) and can affirm to all that it is absolutely essential to get a second and even third opinion and be your own advocate - get copies of EVERYTHING. I had to get a re-read of my CT scan because the radiologist reported no change from six months ago and I could definitely tell there was significant change - luckily, my hematologist believed me (after I showed him prints from the two scans) and got me a re-read - my spleen had grown 6 cm's!
A week and a half ago I had my first treatment. I had an anaphylactic reaction to Rituxan at the third level and then got the rigors when level three was reached again. We stuck with level two - it took 9 hours, but we got through it. The Bendamustine was a cake walk comapritively. I did feel nauseous for two days and not hungry for four.
I will report one huge miracle - over the last year I had been getting extreme fatigue bordering on narcolepsy (think about a large dose of demerol) at the same time of day (1:00) which made me sleep for 2-3 hours at first and lately 4-5 hours. After the first day of treatment, I didn't need to sleep and have not had to since! In ten days, my spleen has shrunk about 30-40%. I feel great.
For the more seasoned folks, I ask: can I expect worsening effects from the Bendamustine? I am told, the firt Rituxan is the worst, so I'm less concerned about that.
I've done a TON of research, so I hope I can help some of you and I look forward to your support and experience.

Cheers,

Jim

illead's picture
illead
Posts: 566
Joined: Aug 2012

We have been out of town and just now read your post. A couple of our posts are on this page 9/27 9/28. We hope your battle will be an easy one and sorry that you are such a "veteran" to cancer. As we stated, Bill had no problems with R/B. He also had an extremely enlarged spleen, 27.5x24.5. His bone marrow was 90 % MCL when he was diagnosed in July '11. His first chemo of R/B was only a half dose and then every three weeks at 3/4 dose.The doc kept it at that as he was responding so well. Perhaps that is why he had no adverse reactions, he only continued to feel increasingly better. As of Feb '12 he has been in complete remission. As stated he is on Rit maintenance every 2 months for 2 years. We totally agree about doing research and being your own advocate. We have also done a ton of it. We were all set for Bill to get an auto SCT. Had the ins okay etc. As a last thought, I told him why not email some of the doctors who we have researched who have been dealing with MCL in the States and in Germany. They all surprisingly answered back quickly and they were not at all intimidating. One from the States and 2 from Germany. They all said that as long as he is in remission they wouldn't recommend an SCT. So we have decided to forgo that for now. We hope and really think you will have the same success with the R/B. Bill also had the rigors with his first chemo but we and the doctor are convinced it was a symptom of MCL because he had them several times before he started chemo, so it is possible that yours also were not caused by the Rit but just a symptom that happened to show up for the first time during your chemo. We would be very interested in knowing how you progress. We have this page bookmarked and monitor it very often. Our very best to you and your family and our hope is that this series of chemo will be as easy for you as it was for Bill. He was a very sick man and he steadily returned to his old self. Hope to talk again. Bill and Becky

Dianna2013
Posts: 6
Joined: Nov 2014

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

Mulesky
Posts: 3
Joined: Mar 2013

I've never been here before but wanted to share my husband had a very itchy infected rash for a year and three months during which time he was treated for all the wrong things, before he was correctly diagnosed with mantle cell. It wasn't the drs fault. They did try. It didnt show up until his lymph nodes got swollen, and then it was everywhere. Six months of maxi chop including lumbar, a stem cell transplant, and a pacemaker from all the damage to his heart, he is in remission, but I research constantly, the future brings what it will, he tires easily, his muscles ache, but we go to the beach, read, watch DVDs, play scrabble and make the most of each day, even if that just means sitting in the back yard. Almost every treatment was done far from home, we weren't home much last year, as his wife I didn't eat well or sleep well far from home for so ling. But it saved his life. He gets rituximab every eight weeks to extend remission. But mostly I wanted to share itching was very much a part of his cancer. I wish I had crystal ball. I wish I knew how to plan. I hate being scared. But we were blind sighted so much the last two and a half years I won't do that to myself again. I want to balance not living afraid and being aware....which is not so easy.

tuaddcs
Posts: 1
Joined: Apr 2013

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

illead's picture
illead
Posts: 566
Joined: Aug 2012

Hi Dani,

     Thank you so much for sharing such good news.  We know researchers are working very hard to finding a relapse drug and your news is very promising.  You have probably read about Bill's situation a few posts up.  We're hoping we don't have to worry about any of this for a long time but we also know reality.  Our very best to you and Jay, we share your journey.  Please keep us informed of his progress of which we pray for. Bill & Becky

hunter46
Posts: 8
Joined: Apr 2013

I was diagnosed in 2009, I have had R-hyper Cvad, stem cell auto, Retuxin and Velcade.  Retuxin & Valcade gave me only 6 month remission.  I am currently on Retuxin and Bendamustine still have 5 cycles to go.  I have been checking into Ibrutinib, called where it is made they were very helpful.  They told me there would be trials in Minnesota but nothing has happened.  Im glad to here things are going well.  Have you heard what the progession free response is?  Was the Pneumonia caused by the drug?  Im doing fine so far would feel better if I was in remission again.

Jay keep getting well,

illead's picture
illead
Posts: 566
Joined: Aug 2012

We think you will do very well with Bendamustine/rituxan.   I can't imagine how disheartening it was to have a relapse after only 6 months.  We know how scary it is to face that.  If I may ask, how did you know of your relapse, was it symptoms or routine tests, scans etc.?  We are sorry to be so frank but we have not talked to anyone yet who is in treatment for relapse  and of course it is what MCL does.  Please keep us informed of your progress.  As we said before, Bendamustine is a wonderful drug too, so we are hoping for the best for you.  We have posted several times on this page if you haven't read Bill's story.  Please know that our thoughts and prayers are with you and of course for the doctors and researchers.  If we can be of any other help to you please don't hesitate to write, we are here to be of support for you and your family.  Our very best to you, Bill & Becky

hunter46
Posts: 8
Joined: Apr 2013

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

illead's picture
illead
Posts: 566
Joined: Aug 2012

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 

Dianna2013
Posts: 6
Joined: Nov 2014

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's picture
Max Former Hodg...
Posts: 1217
Joined: May 2012

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's picture
illead
Posts: 566
Joined: Aug 2012

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
Posts: 6
Joined: Nov 2014

 

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.Smile (I don't see a spell ck on the tool bar)

Dianna

illead's picture
illead
Posts: 566
Joined: Aug 2012

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
Posts: 6
Joined: Nov 2014

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

Dianna2013
Posts: 6
Joined: Nov 2014

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

Dianna

debbonjeffo
Posts: 2
Joined: Jan 2014

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
Posts: 6
Joined: Nov 2014

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

hunter46
Posts: 8
Joined: Apr 2013

It was caught on a semi annual pet scan. No symtoms prior to the test I was in full remission as of last August. Thank you for the encouraging words.  1st round went fairly well. Will try to let you know after June I should have another pet scan to see what the treat,emt is doing.

illead's picture
illead
Posts: 566
Joined: Aug 2012

You're living what we are dreading.  One good thing though is that I don't think bendamustine has been used that long to really know what it can do down the line.   So far it has worked wonders so our hope is that it will do that in relapse also.  It is so easy to deal with too,  Bill had no side effects and no loss of hair.  Hang in there, we just know you'll do good. B&B

hunter46
Posts: 8
Joined: Apr 2013

Have any of you experienced Nuropathy (numbness) as a result of your treatment and have you found anthing that helps?   I have tried electo therapy, Trixaicin cream,Anodyne Therapy, massage treatment. Been to three nuroalogists still have it just as bad as from the start.  I was told by two doctors if it goes away it will be after a few months well that didn't happen.  Wool slippers let me sleep thank heavens. Has anybody had success getting rid of this?  Thanks for any input.

illead's picture
illead
Posts: 566
Joined: Aug 2012

Hi Hunter,

     Bill has no problem with that but he only had Bendamustine/rituxan.  You have been through it, there may be others who can identify. Becky

Ludie
Posts: 1
Joined: May 2012

My husbands first treatment for a very Advanced Stage IV MCL was May 24, 2012...clinical trial at (MD Anderson Cancer Center in Houston Texas). of 6...7 day hospitalizations for chemo R-Chop with Velcade.....he has fairly severe neuropathy to his toes, feet and fingertips.....to date acupuncture, creams and etc. have not helped.   Last treatment was in Sept. 24, 2012 and was Disease free Oct. 4 ,2012...treatment stopped short due to cardiac toxcitiy. 

He has had two re-evaluations (every 3 months with scans and bone marrow bx) and all is well to date.    He has learned to deal with the numbness and take precautions to protect his feet.  It has lessened some in intensity, but is still there.  He  also tried Tiebetian haromonic meditation and found that extremelly helpful for this entire journey, which he continues to do daily.   His feelings were, he is alive and the numbness is the least of what he could be facing.  This MCL was an incidental finding...he felt fine...that was the really scary part of this disease.  He is active, and does most everything he has always done.

Hope all continues to go well for you.

illead's picture
illead
Posts: 566
Joined: Aug 2012

We met Bill's new oncologist today.  He is the 4th one since being dx in 7/11.  Two were on contract short term and the full time one he had left unexpectedly.  That left only 2 full time.  They finally got the third full time onc at our cancer center.  Anyway, we had a very encouraging visit with him.  He said that MCL is not as ominous as it once was and sounded very optimistic.  Of course we know they want to sound that way, but he seems to know what he is talking about.  He said something interesting that we were very happy to hear.  He said that if Bill stays in remission long enough, they may be able to use the bendamustine again.  It's when relapse occurs quickly after the first chemo, that it does not work well the next time.  He said that with the use of rituxan (around 2000), it totally changed the way of treating some lymphomas, including of course MCL.  He even said that they may find that instead of 2 yrs on rituxan, they may even extend that.  We just thought that things sound positive and wanted to share with you.  We hope you are all doing well in your battle and hope the bendamustine is doing well for you Hunter.  In our thoughts, Bill and Becky

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