Mantle cell lymphoma

2

Comments

  • illead
    illead Member Posts: 879 Member
    Seabrook said:

    We love Rituxan!
    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.

    Good hands
    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
  • onlytoday
    onlytoday Member Posts: 609 Member
    illead said:

    Hi Donna
    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

    Ofatumumab
    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
    Seabrook Member Posts: 6
    illead said:

    Good hands
    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

    Have fun!
    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
    illead Member Posts: 879 Member
    Seabrook said:

    Have fun!
    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.

    You have fun too
    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
    jim1519 Member Posts: 1
    Here2 said:

    Diagnosed June 16
    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.

    Starting Clinical Trial - Bendamustine/Rituxan
    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
    illead Member Posts: 879 Member
    jim1519 said:

    Starting Clinical Trial - Bendamustine/Rituxan
    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

    Hi Jim
    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
  • Mulesky
    Mulesky Member Posts: 3
    I've never been here before
    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
    tuaddcs Member Posts: 1
    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

  • illead
    illead Member Posts: 879 Member
    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

    Great news

    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
    hunter46 Member Posts: 8
    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

    Ibrutinib

    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
    illead Member Posts: 879 Member
    hunter46 said:

    Ibrutinib

    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,

    Hi Hunter

    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
    hunter46 Member Posts: 8

    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
    illead Member Posts: 879 Member
    hunter46 said:

    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.

    Dang

    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
    hunter46 Member Posts: 8
    illead said:

    Dang

    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

    Nuropathy

    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
    illead Member Posts: 879 Member
    hunter46 said:

    Nuropathy

    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.

    no problem

    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
    Ludie Member Posts: 1
    hunter46 said:

    Nuropathy

    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.

    Neuropathy

    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
    illead Member Posts: 879 Member
    Ludie said:

    Neuropathy

    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.

    Oncologist visit

    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

  • hunter46
    hunter46 Member Posts: 8
    illead said:

    Hi Hunter

    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

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

  • illead
    illead Member Posts: 879 Member
    hunter46 said:

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

    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 

  • hunter46
    hunter46 Member Posts: 8
    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

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