What should we be sure to ask?

[KimO]

Our 23 yo daughter has a consult with Seattle Cancer Care Alliance (Fred Hutchinson Center) on May 20th about the possibility of a bone marrow transplant for her Severe Aplastic Anemia. She was diagnosed in Oct 2007, had ATG in Dec 2007 and had a complete response. Cyclosporine was tapered over 9 months after 7 months at full dose and she remained at normal blood counts for another 14 months before relapsing last August. Resuming cyclosporine has thankfully recovered her counts and she will graduate from UW this spring.

I have two questions: Does it make sense to consider BMT when her counts are normal, although they appear to be cyclosporine dependent (siblings are not a match but they did identify a match shortly after she was diagnosed)? In order to help us make this decision, what should we be sure to ask the doctor at the consult? We have a full hour of time of a very (I hope) expert resource and I want to make sure that we use it wisely.

[Neil Cuadra]

Kim,

I shared my thoughts about your transplant decision in your thread about your consultation at the Hutch. Regarding questions to ask, here are some suggestions.

I'd ask them how they see Shauna's suitability as a transplant candidate. Is she an ideal candidate or are there caveats? If they recommend a transplant, I'd ask for a detailed explanation of why.

If not, ask the same question: why? Should she continue on cyclosporine as long as it works? Typically how long do other patients at her age and with her history successfully stay on cyclosporine or stay in remission after tapering off? What are the long-term risks of that approach? How slow a taper makes sense? If she repeats ATG, should it be horse or rabbit ATG?

What statistics can they give you about each of these choices? What are her chances of being cured? Of not surviving the transplant and the months immediately afterwards? If she waits a couple of years to see if she can reach remission with drugs alone, how will that change her transplant prospects?

What are the long-term effects of a transplant? Could the SAA return? If the transplant fails, what would they do?

How can Shauna's fertility be preserved? How successful is that approach?

What medications will she need to be on after the transplant and for how long? What side effects of transplant treatment and medications are very likely or somewhat likely?

Is the transplant completely covered by Shauna's insurance? What about travel and lodging? The medicine she'll need? This consultation?

Practical aspects of a transplant: How long would Shauna have to be in the hospital? What is the transplant experience like? How long would she have to stay in the Seattle area? What would your role be during the transplant? What should you expect when she's home again? Would she need to keep returning to Seattle for followup care or could that be done where you live? Should she see her current doctor or do they recommend someone in your area for post-transplant care?

When we had our consultation at the Hutch we also got a short tour of the transplant facilities. You could do that too.

They will give you printed materials that may answer some of your questions, and you often have to play it by ear when you have a short consultation appointment, but showing up prepared will help you make the most of it. I hope it goes well.

[KimO]

I'm in the hotel re-reading your excellent reply and making additional notes of our own. Tomorrow will be an interesting day to say the least. Thank you so much for helping us to feel better prepared!