Mantle cell lymphoma

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
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Comments

  • yesyes2
    yesyes2 Member Posts: 591
    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
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    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
    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)
  • Ncros814
    Ncros814 Member Posts: 2
    Mantle cell lymphoma
    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
    yesyes2 Member Posts: 591
    Itchy Skin
    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
    Aliwoo Member Posts: 1
    My husband was diagnosed
    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
    marco427 Member Posts: 1
    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.
  • SAnneB84
    SAnneB84 Member Posts: 1
    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.

    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.
  • chemtech
    chemtech Member Posts: 1
    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.

    Husband Diagnosed Today
    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
    janbradhan Member Posts: 2
    chemtech said:

    Husband Diagnosed Today
    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

    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
    Here2 Member Posts: 1
    chemtech said:

    Husband Diagnosed Today
    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

    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.
  • illead
    illead Member Posts: 884 Member
    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.

    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
  • Seabrook
    Seabrook Member Posts: 6
    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

    Thanks for the Uplift
    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
    onlytoday Member Posts: 609 Member
    Seabrook said:

    Thanks for the Uplift
    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?

    Treanda
    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
    Seabrook Member Posts: 6
    onlytoday said:

    Treanda
    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

    Thanks
    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
    illead Member Posts: 884 Member
    onlytoday said:

    Treanda
    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

    Hi Seabrooke and Donna
    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
    Seabrook Member Posts: 6
    illead said:

    Hi Seabrooke and Donna
    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!

    Starting Next Week
    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
    illead Member Posts: 884 Member
    Seabrook said:

    Starting Next Week
    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.

    Sounds good
    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
    onlytoday Member Posts: 609 Member
    illead said:

    Sounds good
    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

    Ofatumumab
    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
    illead Member Posts: 884 Member
    onlytoday said:

    Ofatumumab
    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

    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
  • Seabrook
    Seabrook Member Posts: 6
    illead said:

    Sounds good
    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

    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.