Mantle Cell Lymphoma

[Reem-ayoub]

Hello! Would really appreciate feedback on treatment options for Indolent Mantle Cell Lymphoma for a healthy 49 year old male. Anyone familiar with Bendamustine/ Rituximab followed by Autologous SCT?

Thank you,

Reem

[Kvick]

I have heard of the treatment but am not familiar enough to address it. However, I can answer any questions you may have about the auto transplant. I had a transplant last May. I was in the hospital for 3 weeks and am have been in remission ever since. The high-dose chemotherapy prior to the transplant really kicks your butt.....but the transplant itself is a piece of cake. IT takes 3 to 6 months to recover from it. There have been people who went right back to work. I waited 3 months before going back to work part time only. MY thoughts are with you. STay strong and remember.....one day at a time. Kim

[islander33]

That was my treatment tolerated treatment very well I am in remission and doing great. Was diagnosed 2013

[Reem-ayoub in reply to islander33]

Hi! How are you doing? Happy New Year ! We met up with transplant DR few days ago and she took us through the steps of the transplant. Apparently they do the conditioning treatment before harvesting the stem cells. Was that your experience? Or did they do high dose chemo then GCSF then stem cell collection? We still have a while to go before we do it but just collecting info for now.

[Janekite2015]

I had great response to the bendamustine and rituxan, even with no sct. just curious , if it's indolent why not watch and wait?

[Reem-ayoub in reply to Janekite2015]

Hi Jane, my husband had some symptoms like severe night sweats that only lasted 2 weeks about two months ago. Spleen is enlarged 20cm. So I guess treatment is a must. How many sessions of B/R did you go through? Is it your decision not to have SCT? Are you back on watch and wait?

[Janekite2015 in reply to Reem-ayoub]

I had six sessions of chemo followed by two years of follow up with just rituxan. I'm 61, my doctor may have felt sct wasn't right for me given my age and health. It worked for me- I'm five years out with no relapses. I see my doctor every few months and have bloodwork done. About 3 times each year I have a PET scan. so lots of monitoring.

Good luck with your treatment.

[pkpayne]

Hi Reem, So far she has not gotten a stem cell transplant. I think they talked to her about it but I don't think she is strong enough for that at this time. It started back in May when her husband had a hip replacement and she was caring for him and thought she was just tired. They went on vacation to New Mexico and had a good time but when they got back she was worse with the fatigue and in another couple of weeks she woke up one morning and told her husband that she needed to go to the hospital - she couldn't get up. He said that he would take her and she told him no - to call 911 since she wasn't able to function on her own. The hospital close by where they took her knew immediately after the blood work came back that they couldn't handle it so they sent her downtown to our medical center but still an affiliation with that same hospital - we live in Houston so we have an excellent medical center. I would have wished that she had gone to MDAnderson but it wasn't my choice. They knew that she had some kind of blood cancer but her kidneys were failing and she had to be put on dialysis (temporarily) and they started treating her before they really knew the specific type of cancer that she had since she was so critical. Now they supposedly have diagnosed her with mantle cell lymphoma and they started her on chemo therapy. After the first round she was very very weak - she couldn't do anything for herself. Her blood counts were very low and she was given platelets for 2 days and then a blood transfusion. The second round of chemo was worse for her. She said that they gave her what they called the 'red devil' but I'm not familiar with what that is but it was very hard on her. I was taking her for her labs twice a week and after one of them the doctor called her that evening and told her to go to the ER for transfusions - he was afraid that she would hemorrhage. She had to go back into the hospital for other tests and they found that all of her tumors had decreased in size except for a place in her bowel. Then they did an MRI and found a suspect place in her brain. However her mind is fine. They wanted to talk to her about a stem cell - they wanted their stem cell transplant team to speak to her but I think they decided that she was just too weak for it at this time. In addition they were going to start her on a different chemo treatment - some that she would take in pill form - at home. However while she was in the hospital finding out all of this, she fell as she was going for the MRI and broke her ankle. She had lost the ability to flex one foot and was having such pain in that leg that it was assumed that this was due to the chemo. They put her in a boot and let her come home. During the Thanksgiving holiday they went to Dallas to visit their daughters and on the day they were supposed to come home she got sick with a 103 fever and vomiting so she had to go into the hospital in Dallas. She's been in there for almost a week but I heard from her day before yesterday and she thinks she will get to come home this weekend. She's had a rough time of it but not everybody that gets that does. She is just very sensitive to all medications and we all think that she had this for a very long time and ignored it or attributed all the symptoms to her being worn out from taking care of her husband with his replacement. Please don't let this scare you. We are all different and react differently to different drugs and situations. The one piece of advice - if I can offer one - would be for your husband to see a specialist - not just an oncologist or a hematologist. Even if you have to drive somewhere you could still have your treatment locally with a local doctor but let a specialist be in charge of it. I wish she would do that but then I'm just a neighbor. When I found out that I had CLL my internist sent me to a wonderful hematologist that was in their clinic. I loved her. But I wanted someone who ONLY dealth with the type of cancer that I had. I think that is common thinking on this forum. Stay on this forum though. It offers unwavering support. Please keep me posted about your husband. I wish both of you the best!

Paula

[Reem-ayoub in reply to pkpayne]

Hi Paula. Happy New Year! Hope 2017 treats you well. So sorry your friend had to go through all of that. Hope she's better.