Mantle Cell

Twinmom2

Hi everyone.  My mom is 71 yo and was dignosed Dec 6 with MCL Stage IV with bone marrow involvement.  Her first treatment was the Rituxin and Bendamustine combo in January and she did very well.  She had her 2nd round last Wednesday and Thurday.  She felt fine up until Sunday and it knocked her on her rear.  She was very tired.  Today she is still exhaused and has a bit of nausea, so she took her compazine.  Has anyone on this site had the R/B treatment for MCL?  If so , are you willing to share your treatment experiences?  This is new to me and I am so scared for my Mom.

 

Thanks

illead

Been there

Hi to you,

Yes, we have been there, my husband has MCL, I will not be able to answer you until tomorrow late at the earliest but will do so  shortly.  In the meantime please click on our picture and you can read our experience.  I promise to get back to you as soon as I I can and you will be on my mind until I do, I am good for my word.

Becky 

illead

Sorry this is late

First of all I want to say that I am sorry for what you are all going through, I know what a shock it is.  I do want to reassure you though that the outlook for MCL patients is much more positive than it was a few years ago.  I hope you haven't been reading old news about it online because most of it is pretty much obsolete.  My husband Bill was diagnosed in '11,  90% of his bone marrow was involved and he was at stage 4, which is not unusual for lymphoma as the symptoms don't always present themselves until it reaches that stage.  He also had Bendamustine/rit., but was never adversley affected.  Some have been however so I am thinking that it is probably just the fact that her immune system is not as good as when she had her first infusion.  The nurses told us that the chemo doesn't kick in until 3 or 4 days after the infusion, so that probably is the reason for the seeming delay.  She should be doing better in a few days or maybe a week, I am just guessing since we never dealt with that, but it is what I have learned from other cancer patients.  Like I said, we know what you are dealing with, but they now have so much more knowledge and targeting drugs and more in the near future.  One of the best MCL doctors (and there are a lot of them), is Dr Michael Wang at MD Anderson and he believes they will have a cure in less than 10 years, they are making that good of progress.  B/R will put your mother into remission, that is almost a given, and she has a long life ahead to look forward to.  If you have anymore questions, feel free to ask, I monitor this forum daily.  You can also private message me by clicking on our picture and it will say "send this person a message" 

So I wish you all well and am thinking of you.

Becky

Twinmom2

illead said:

Sorry this is late

First of all I want to say that I am sorry for what you are all going through, I know what a shock it is.  I do want to reassure you though that the outlook for MCL patients is much more positive than it was a few years ago.  I hope you haven't been reading old news about it online because most of it is pretty much obsolete.  My husband Bill was diagnosed in '11,  90% of his bone marrow was involved and he was at stage 4, which is not unusual for lymphoma as the symptoms don't always present themselves until it reaches that stage.  He also had Bendamustine/rit., but was never adversley affected.  Some have been however so I am thinking that it is probably just the fact that her immune system is not as good as when she had her first infusion.  The nurses told us that the chemo doesn't kick in until 3 or 4 days after the infusion, so that probably is the reason for the seeming delay.  She should be doing better in a few days or maybe a week, I am just guessing since we never dealt with that, but it is what I have learned from other cancer patients.  Like I said, we know what you are dealing with, but they now have so much more knowledge and targeting drugs and more in the near future.  One of the best MCL doctors (and there are a lot of them), is Dr Michael Wang at MD Anderson and he believes they will have a cure in less than 10 years, they are making that good of progress.  B/R will put your mother into remission, that is almost a given, and she has a long life ahead to look forward to.  If you have anymore questions, feel free to ask, I monitor this forum daily.  You can also private message me by clicking on our picture and it will say "send this person a message" 

So I wish you all well and am thinking of you.

Becky

Thank you

Becky

Thank you so much for your response.  I will read your story soon.  You are correct in that there is so much outdated info and not alot of recent info on MCL.  I am happy to hear that your husband has done so well and that there have been advances made in the treatment of cancer.

ceili

Twinmom2 said:

Thank you

Becky

Thank you so much for your response.  I will read your story soon.  You are correct in that there is so much outdated info and not alot of recent info on MCL.  I am happy to hear that your husband has done so well and that there have been advances made in the treatment of cancer.

Hi Twinmom2, I was just

Hi Twinmom2, I was just wondering how your mother was doing? As I am in the same boat as you.