Mantle Cell

Hi Debbie,

     I hope you are finding this.  I have started a new thread as the other one was older and a bit confusing and long.  I am so sorry that you and your husband are going through this.  I hope you are both holding up well.  Bill was diagnosed at the age of 62 and is now 66, so we have a lot in common.  By the time Bill was diagnosed, he was very sick, you have probably read on the other thread about that.  His reaction to chemo was dramatic and he made continued progress starting with his first infusion and was feeling better than he had in many years after 3 months of treatment.  When his chemo was done and they started talking about an SCT, we were pretty much planning on it.  I had remembered though in my research I had come across the name of 2 doctors in Germany who pioneered the use of the chemo that he received, and a doctor in the states who is actively researching MCL.  We emailed the 3 in hopes they would  shed some light on our decision.  The 2 docs in Ger. said outright that since he was in remission and doing well, they would not suggest.  The doc in the states said basically it was a 50/50 decision.  So with that, we decided against the SCT.  He relapsed in 2 years and is now on Ibrutinib.  So basically, we don't know if we made the right decision.  We don't know if he would stayed in remission longer.  If he would have relapsed at the same time, after an SCT, perhaps he wouldn't have been fully recuperated and  thus the relapse would have been more difficult to deal with.  It is a personal issue and I am not saying that either way is right or wrong.  MCL is so new, there is just not a lot of data.  Since your husband's MCL was caught early and watched etc., may be a whole different story.  Ibrutinib is only used after relapse, I don't think it is used before that but there may be a change of thinking when an SCT is involved.  At any rate Debbie, I hope this has helped a little and not caused any confusion for you, and again, please know that I am not trying to sway you.  If you have any more questions, I will be happy to answer.  We have a very good forum here and all of us are very caring and concerned about our fellow lymphomaniacs .  So please feel free to join us and we are here to listen and support you.  Also be assured that there is much more hope now for MCL and reaearch is progressively ongoing.

Thinking of you and your husband,

Becky