I would really appreciate your thoughts . . .

[KimO]

We're trying to decide if BMT makes sense for Shauna and will meet with SCCA in Seattle on May 20th to get their opinion. I'm still really struggling with the idea of a transplant with all the risks when she has low normal counts, although they appear to be dependent on cyclosporine. Both of her hematologists recommend transplant. I'm wondering about the possibility of suggesting a VERY slow taper to see if her counts will hold this time. If they don't, we probably have our answer about transplant, but if they do . . .

Then again, if she can consistently recover her counts using cyclosporine and she's able to be off the medicine for some periods of time (14 months last stretch), is that a more reasonable long-term option than risking GVHD etc. from a transplant? Of course, what if the next time she relapses the cyclosporine doesn't work? and is the toll of the cyclosporine and AA on her kidneys and marrow better or worse than potential GVHD, prednisone side effects, radiation, etc.

Then of course there is the whole issue of being covered under our health insurance policy only until she is 26 . . .

Sorry if I'm rambling. It's a hard decision, but we're VERY thankful that we have options. I continue to pray for those that struggle with this disease, many of whom don't have any options. Thanks for any thoughts.

[Neil Cuadra]

You should certainly ask about the slow taper because continuing on cyclosporine is one choice, and you want to hear what they have to say about it.

Have the doctors suggested repeating ATG if cyclosporine doesn't maintain Shauna's counts? See Andrea Pecor's profile for one patient's experience with repeated ATG.

My wife and I faced the same decision that Shauna has. She too had stable counts. We too had a consultation at the Fred Hutchinson Center ("the Hutch"). They recommended a transplant, but we had to keep in mind that transplants are their speciality, so they might be more likely to favor that choice. That was the second opinion my wife got, and the first and third opinions at other treatment centers also recommended a transplant. Like Shauna my wife had no sibling match but a match unrelated donor had been identified.

However, your situation differs too. My wife had MDS, not AA, had not responded to ATG, and her chromosomes were apparently changing/unstable. We decided that the alternative to a transplant was "waiting for something bad to happen" and that it eventually would. We chose the transplant and that was the right choice for us.

You can't discount the immediate risks of the transplant procedure but you also have to weigh the long-term tradeoffs. Even with a successful transplant she might face graft-versus-host disease and other lasting side effects. You'd have to plan ahead for the fertility issue. On the other side, continued cyclosporine and possibly repeating ATG could carry Shauna for many years. The question is whether that would work for a lifetime, and whether the possibility of a relapse would be a constant burden for her. Making the decision harder is the fact that if she'll eventually have a transplant, the sooner it's done the better. If only one potential donor was identified then there's also the concern about that donor's long-term availability.

You can look at statistics on both sides but a big part of this decision is how Shauna herself feels about it. It's a very personal decision and she might not even have the same gut feeling that you her parents do.

The insurance issue has to be considered but Shauna may be able to get her own health insurance through an employer, especially if the restrictions on pre-existing conditions are eliminated by the 2010 Affordable Care Act.

[Hopeful]

Hi Kim,

This is such a hard decision! I hope I don't confuse you more with my thoughts.

One thing that I have read about that could provide additional insight is the prognostic value of telomere length on AA patients treated with IST in terms of survival, relapse, and clonal evolution. I've heard they can measure lymphocyte telomere length at NIH, but perhaps they can do it at Fred Hutchinson as well. If you knew her telomere length was very short, it may influence your decision. Here's a general paper on a recent study. If you want, I can dig around for a more detailed study that I found a while back on this topic:

http://www.nih.gov/researchmatters/s...2010anemia.htm

Other random thoughts...

I've read studies comparing slow tapers to very slow tapers. The relapse rate was the same for the two groups. It was significantly higher for the faster taper group. So, if she previously had a slow taper, a very slow taper may not make much difference.

Kidney transplant patients are on cyclosporine for life. So, perhaps she could eventually do well on a much lower dose of cyclosporine, without removing it completely.

It's such a tradeoff between her young age now vs advancements in treatment options if you waited! Although she is covered through your insurance now, perhaps she could start her career in her chosen field more easily now and get her own medical coverage in addition to yours.

Here are some recent presentations from the Hutchinson center that may help you think of other questions:
http://www.fhcrc.org/research/diseas...lies-2010.html

Let us know what you learn! It seems almost inevitable that we fellow IST patients will be in your shoes someday

[mscrzy1]

I'm not much help in terms of deciding too much, but I thought I might have some words of insight with the insurance dilemma and possibly taking that off your plate of concerns. As far as I know, she can safely have continuation of care if she gets health insurance through an employer before she is no longer able to be covered on your insurance and even then you can carry her for about 18 months with Cobra. I've always had to worry about insurance coverage since I was dx when I was 19. I was on my parents insurance at that time, but I've been sure to maintain constant health coverage with NO lapse. When there is a lapse in insurance, they can hit you with the pre-existing condition issue.

[KimO]

Just thought I would post about our consult in hopes it would provide info for anyone else in the same boat. The takeaways were that 1) with normal cytogenics, Seattle Cancer Care will not consider transplanting for AA unless the patient's disease meets criteria for severe, 2) the original BMB sample was too small for their liking and they would like us to repeat just to confirm that the cytogenics are still normal, 3) Shauna apparently has a reasonably common HLA profile so there are multiple 10/10 matches available if necessary down the road, 4) it's ok to stay on the cyclosporine long term as long as the side effects are tolerable but they agreed that tapering would be possible and even desirable. However, they didn't want to go on record as to recommending a specific taper schedule to try other than "slower than last time" since last time resulted in a relapse. I did ask about telomere length as it relates to AA and was told that they didn't think it was applicable in Shauna's case.

We were praying for a definitive answer and the doctor actually said if she recommended Shauna for transplant she would be laughed out of the room and then fired. It couldn't have been more definitive than that. Hopefully the BMB this summer will be normal again and she can concentrate on getting into nursing school and getting on with her life.

[Lisa V]

Originally Posted by KimO

We were praying for a definitive answer and the doctor actually said if she recommended Shauna for transplant she would be laughed out of the room and then fired. It couldn't have been more definitive than that. Hopefully the BMB this summer will be normal again and she can concentrate on getting into nursing school and getting on with her life.

That does sound pretty definitive, Kim. I don't know about you, but I would be feeling pretty relieved to hear that, despite the fact that it doesn't exactly resolve all the issues.

We were in a similar position, with our hem/onc saying he couldn't imagine the transplant team not recommending BMT. Well, guess what, they reviewed his case and did not recommend it. We were relieved, and his counts have continued to improve, even though it means he's still on cyclosporine. Sometimes there is no clear "right" answer, but erring on the side of caution seems like the better option to me.