MCL Looking for support for my dad

I just wanted to say that everyone is probably waiting for me to reply .  Just wanted them to know that we have been personally messaging.  Bill is one of the only ones on the forum with MCL.  As you know, it is rare.  There is one other one, Joe, and I think he is going to post soon.  He has as interesting story.  Just wanted you to know why you probably won't get too many replies, but MCL does come up at times.

Thinking about you and your mom & dad,

Becky

JoeCostello said:

Mantle Cell Update

Diane,

I guess you know your dad called me after I messaged you. I tried to be as upbeat as possible given the situation. It is hard to accept that you have this and what you read on the net does not help. There are a lot of advances out there that are not published yet and are giving hope to MCL patients. In the next few years I believe there are going to be more breakthroughs and better options based on what I have heard.

I had planned on posting sooner but my dear mom had a stroke this last week and we had to travel to Michigan to help out where we could. She is not doing very well. She is 81 and has Alzheimers disease on top of this. Please pray for her and my sister as she has most of the burden on her shoulders to get her the care she needs.

As some of you know I was recently diagnosed with Mantle Cell Lymphoma and have gone through a lot of testing as most of you have too. Not fun but a necessary evil. After being offically diagnosed here in Charlotte about 5 weeks ago I went for a second opinion in Houston at MD Anderson at my daughters and friends urging. I met with Dr Wang (very nice man by the way) there and he was very encouraging about the advances made in treatment. He spoke to me about a clinical trial involving Ibrutinib/Rituxan followed by a shortend hyper CVAD regimen without the Stem Cell Transplant. That is appealing to me since I really didnt want to go through one. He gave me the impression that it would have the same overall results as the standard RCHOP/Hyper CVAD/SCT route for younger patients without as severe a toxicity. It will require a stay in Houston for 4-6 months but in the overall scheme of things in life it is doable and worth it. I would encourage anyone with MCL that can to go to MD Anderson and at least get a second opinion from them. They treat the most MCL patients in the country (I'm sure there are a couple others not too far behind) and are very active in research. I am scheduled to return in August to see how much my disease has progressed. Its possible I will start treatment then, but then he also said he may wait another 3 months. His feeling was that as long as it has not progressed too far there is no need to start treatment as there is no benefit in overall survivability by starting too early. I must admit I'm ready to start kicking this thing in the rear but we are making changes in our diet to help fight it now.

Please tell your dad to call me anytime. I will be glad to talk or pray with him anytime.

Joe

I am so glad to see your post.  I too talked to Diane's dad, I think the same day as you did.  I have been worried and thinking of him a lot.  I'm so sorry to hear about your mother.  We have and are going through that with our parents and I know it is a sad thing.  Our thoughts are with your family.  I know you want to start treatment but at least you are buying some time to get ready for all of this.  So interesting that Dr. Wang is maybe going to wait.  As we discussed, you are truly in good hands.  We have been thinking about you also.  Bill asks about you everyday.  We will try to call soon.  You sound like you are in good spirits except for your mom of course.  Diane, as I said I have been worried about your dad, please know we care and I know I can speak for Joe also.

Becky