Questions to ASK at BMT Consult

[NLJabbari]

Hello Everyone, My 20 y-o son will be going for a third Consult in a few days for a possible BMT. Our first appointment didn't go as well as we would have liked. We found the Dr. was not happy about some of the questions I asked regarding the 4 possible 9/10 donors. I wanted to know at what marker the mismatch was and the Dr. was not happy about me asking this. We left feeling more confused than ever!

Our 2nd Appointment was better, but this new BMT Dr. felt that based on my son's current CBC (normal WBC, Platelets, ANC, but low Hgb), there were still a couple of other (treatment options) to try before considering transplant. My son was Initially dx'ed w/AA in 2004 and then PNH in May 2012. We didn't even get to really talk about transplant as the Dr. felt it was irrelevant at that particular point.

The second BMT Dr. feels that since my son's Hgb is the only cell line that is low, it is probably due more to PNH than AA and therefore he feels that trying Solaris is a better option at this time than BMT.

Since my son's primary Hematologist still thinks BMT is a better option, she has advised us to go for yet another opinion/consult with the head of BMT at Children's Hospital Oakland. We have agreed so that we can proceed with making a decision on either "Optional Treatments or BMT"

I'm reaching out to You the Marrowforums Community to ask if there are any particular questions I should be asking the BMT team? I'm hoping to leave this appointment with clear answers or at least a "feeling of clarity" and not confusion which is what We've felt after the last 2 consults.

I would appreciate hearing from anyone who has been through this process and can share any advice on relevant questions I might want to ask. I'm not sure how much info. I can ask re: the potential donors. Gender, CMV status, ??

Thanks you so much in advance.

[DebS]

I don't know much about searching for donors. My husband was lucky enough to have his brother as a match. But we went through 2 consults before he had his transplant. At both places--Moffitt and Loyola--they gave us tons of information to read. I read everything they gave us and also spent a lot of time on here to get as educated as I could about the situation.

I would not feel bad about asking any and all questions. Any doctor who takes offense to that, shouldn't. This is a stressful and scary time for anyone and, in my opinion, no questions should be off limits.

If I were you, I would want to know the specifics at this time. Why transplant now? What are the alternative treatments? What is the timeline on this? Is there a rush to go to transplant?

Other people can help you with questions about a potential donor. I don't know what is or is not off limits with that. But you do deserve to know as much as possible before undertaking a transplant.

Best of luck to you. Hope that helps a little.

Deb

[susanML]

Hi - I can only tell you what I have gone thru for advise. I started yrs ago with Aplastic Anemia - went into remission - went into MDS and had ATG tx. which lastest 10 yrs - should have only last 5 to 7 yrs. Then relapsed and had Vidaza (didnt work) then had Dacogen (didnt work) Developed Rheumatoid Arthritis and had infusion of Rituxan ( didnt work) Went into consult for a bone marrow transplant - no family members - Most fantastic understanding doctor explained to me that there is no other "cure" but a bone marrow transplant - everything else is a bandaid. I recently found out they found a 10/10 unrelated donor match for me and am going Nov 4th for the time schedule. I am very excited, very scared and very happy at the same time. Hope this gives you some idea of the road that can be taken. If I had to do some things over again - I am still mixed - if I pushed for a transplant earlier - the success rate wasnt as great as it is now. Hope you and your son find the answers that make you feel comfortable with your decisions. Blessings to you

[NLJabbari]

Thank you DebS and SusanML. Yes, it's so much to take in and very difficult also as we have gone from Pedi Hematologist to Adult Medicine. Lots of change...

Initially we were given a binder of BMT information and did go through it carefully. I asked questions in relation to that binder at our followup appointment and was given conflicting responds.

My son's appointment is coming up this Wed. and hopefully we'll have a clearer picture or a better recommendation.

Again, he is currently doing okay and feels well. His Hgb is low but stable at 7.9-8.5, but his WBC/ANC & Platelets are in normal range. There is no immediate urgency, but his Primary Hematologist thinks that this would be the best time for BMT due to my son's age, overall health, etc... One BMT Dr. suggests he should either try another round of ATG or Solaris for PNH. So, we will see what this second BMT Dr. suggests.

Again, Thanks so much!

[NLJabbari]

Dear susanML, I just want to let you know that I'll be thinking about you in your upcoming appointment with BMT. I'm very happy for you. I'll be sending blessing and great healing thoughts your way.

Sincerely,

Norma J.