Mantle Cell

illead

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

 

 

debbonjeffo

Hi Becky,
thank you so much

Hi Becky,

thank you so much for replying to my online comments/questions.  No you haven't confused me (us) with the treatment plan you decided on.  And yes, I agree, it's nice to read fellow travellers in our world of lymphoma.  Jeff just had tx 6 of Rchop and will be starting the SCT soon.  Gotta get those neupogen shots to build up the stem cells.  He is strong and I hope that the hospital stay won't be longer than 3 weeks.  We did meet a 55 (young) y.o. man in the hospital who did not have lymphoma and he got the SCT.  Having a new immune system must be getting good results.  Jeff's doc said that there could be remission up  to 10 years. Well, one day at a time right.  We are very hopeful.  thanks again.

Debbie

 

 

illead

debbonjeffo said:

Hi Becky,
thank you so much

Hi Becky,

thank you so much for replying to my online comments/questions.  No you haven't confused me (us) with the treatment plan you decided on.  And yes, I agree, it's nice to read fellow travellers in our world of lymphoma.  Jeff just had tx 6 of Rchop and will be starting the SCT soon.  Gotta get those neupogen shots to build up the stem cells.  He is strong and I hope that the hospital stay won't be longer than 3 weeks.  We did meet a 55 (young) y.o. man in the hospital who did not have lymphoma and he got the SCT.  Having a new immune system must be getting good results.  Jeff's doc said that there could be remission up  to 10 years. Well, one day at a time right.  We are very hopeful.  thanks again.

Debbie

 

 

Hi Debbie

Well that's good news, it sounds like Jeff is in good hands.  I think that because he is so healthy, that is a big plus in his favor.  Bill has always been super healthy.  I think that is why he did so well with the chemo and now has hardley any side effects from Ibrutinib.  He is also 66 BTW.  Looks like you and me are in this together.  Please let us know how things progress.  I'm here for you, as is everyone on the forum.

Thinking of you both,

Becky

Sgo4th

Mantle Cell

HI Becky,

My husband has been recently diagnosed with MCL, early December. He is 53, and seems to have an indolent type, but of course, things can change. 

We got him in to UCSF (San Francisco) and he started treatment this week at the Fremont-Rideout Cancer Center, wihich  I notice you referred to in a previous comment. We live very close to the cancer center, and possibly close to you, too. 

Maybe be I could contact you by phone?

Thank you

Shari & Mike

illead

Sgo4th said:

Mantle Cell

HI Becky,

My husband has been recently diagnosed with MCL, early December. He is 53, and seems to have an indolent type, but of course, things can change. 

We got him in to UCSF (San Francisco) and he started treatment this week at the Fremont-Rideout Cancer Center, wihich  I notice you referred to in a previous comment. We live very close to the cancer center, and possibly close to you, too. 

Maybe be I could contact you by phone?

Thank you

Shari & Mike

Hi Shari

I just read your post and we have to run out for the morning.  We live in Yuba City, (small world).  I will private mess you my phone number but we won't be home till after 12:00.

Talk to you soon,

Becky

illead

illead said:

Hi Shari

I just read your post and we have to run out for the morning.  We live in Yuba City, (small world).  I will private mess you my phone number but we won't be home till after 12:00.

Talk to you soon,

Becky

Hi again Shari

I was wondering if you got my personal message to you?  You probably aren't too savvy to this site yet.  If you don't see a green banner running across the top of this page, it means you have to login again.  That is also at the top.  The green banner should show up and will say you have a message, just click on it and you will get my message.  If you have trouble click CSN Email in the brown box on the left hand side.  I am looking forward to hearing from you.  We will be at the Rideout Cancer Center on Thurs. for his doctor appt. at 10:30.  Just wondering if our paths will cross.

My best to you, Becky