AA/ Hypo-plastic MDS?? ATG + BMT

[emmajennions]

Hello, my names Emma im 22 and was diagnosed with Severe Aplastic Anemia in Dec 08 during my first pregnancy. Thankfully my son was born in May 09 perfectly fine Since his birth I have had more tests and biopsies and have now been told I have Hypo-Plastic MDS, I do not know much about this and would love to meet somebody who could tell me a little and about there experiences. I had rabbit ATG treatment in Nov 09 but have seen no response from that. Am now being reviewed for a second dose,, have you had ATG or know anbody who has? I have heard peoples stories of having horse ATG, do you know if there is any difference between the 2 and if it is more succesful?

Consultants are currently looking for a Bone Marrow match for a transplant, this really scares me, if you have had a BMT i would love to hear from yo and your success stories!! How long did you have to stay in hospital for?? Did you lose your hair?? Was the transplant a horribl experience and make you very poorly??

Thankyou for any help and support and best wishes to all of you other patients with similar problems. This website has made me very aware that there are many people in the same posiion out there... I had no idea!

[Lisa V]

Hi Emma! Like you, my husband was diagnosed with hypoplastic MDS, although we still tend to think of it as AA. Either way, the course of treatment has been the same. He has had 2 rounds of horse ATG, the second because he relapsed when he tried to taper off the cyclosporine.

I'm not 100% clear on the differences between horse and rabbit ATG. The usual protocol in the US is to try horse first, and then if that doesn't show a response, try rabbit next. I've heard it said that the rabbit serum is both stronger and easier to tolerate, but patient experiences have not always born that out. Once you've done rabbit, however, most doctors don't seem to want to go back to horse, so if you started out with the rabbit serum, that does pose a bit of a dilemma. There are apparently other animal sera as well. I've heard from one person who went on to recieve both skunk and goat ATG before finally seeing success with the last one. This is extremely rare, though. For the most part, horse and rabbit seem to be the two you hear about.

Generally they say to wait 6 months to see a response to ATG, and you are getting close to that. Some doctors like to rush in before that, but given the slow response time of many patients, it seems best to wait and avoid unnecessary exposure to immune suppressants. Some patients can even take as much as a year to respond, but after the 6 month mark it does seem less likely. Sometimes a second round can show a response when the first one didn't. My husband was fortunate to respond both times, but he showed a stronger and faster response the second time. Part of the reason may be that they gave him a double dose the second time. I have not heard from any other patients who have tried this, but our doctor apparently consulted with a specialist who told him that you can get increased response from repeat applications if you increase the duration each time. His first treatment was 5 days of ATG, the second was for 10 days. Presumably, if they ever have to do it again, they'd give him 15 days. This might be something to ask your doctor about.

The other thing is that we did not even attempt to taper off his cyclosporine after the second round, just tinkered with his dose to avoid overtaxing his kidneys. I'm not sure if you have a chromosomal mutation that distinguishes your hypo-MDS from AA, but in our case they found a trisomy 8 after the first round, and there is evidence that people with that mutation will continue to be dependant on cyclosporine, so no taper.

I'm sure there are plenty of others who can respond to your questions about BMT, and you can read the postings in the transplant section of the forum. I have followed a lot of them, and it is a major undertaking, even under the best of circumstances! One good thing, you have youth in your favor.

Best of luck to you, whatever path you choose, and feel free to ask any specific questions that occur to you.

[squirrellypoo]

Hi Emma.

I've also got (had) SAA/hypoplastic MDS, and I'm pretty young, too (30), so I hope my experience helps you (I've got a really long thread in the Transplants forum if you want all the details!).

You've still got some time left on the ATG to see if it works, as Lisa pointed out, but if it were me, I'd start looking for bone marrow matches now so if it turns out the ATG doesn't work, then at least you won't have wasted any time and you know if you've got a donor waiting in the wings or not.

At your young age, I'd definitely consider a transplant. ATG doesn't last forever even when it works (I'm apparently the world record holder at 25 years, but even mine relapsed in the end), and so you've got a choice between doing the less risky but still very invasive ATG again every 5-10-15 years, or doing the higher risk BMT and being done with it for the rest of your life. I didn't have a choice last year, but I know mine would've been the BMT anyway knowing what I do now.

And we're both really lucky in that our type of MDS is by far the best to have for a BMT - I had a "mini transplant" which essentially means you get waaaaay less chemo than everyone else (and no total body irradiation) because there's hardly anything in your bone marrow to kill off before getting the new cells. If youre young and healthy and not worn down by years of treatment before the BMT, you've already got the best odds you can possibly have (and the odds they'll tell you about BMT survival are SCARY, but you've got to remember that most BMT patients are much older and have cancer so they're not odds for cases like YOURS!).

Don't get me wrong, a BMT will be an entire year of sh*t that you've got to take out of your life, but it's not quite as scary as the statistics make it out to be. You do lose your hair though, yeah. I just bought a bunch of fun wigs in funky colours and now I've got a pixie cut. I thought losing my (really long) hair would bother me much more than it actually did!

When I think about where I am today (8 months post transplant) versus where I was this time last year, I am far far better off, even with my few lingering issues.

And by your use of the word "poorly", it makes me think you might be in Portsmouth, England rather than Portsmouth, Virginia? If so, your consultant should DEFINITELY be speaking with Prof Mufti at Kings College Hospital in London (where I had my transplant). He's the leading expert on MDS in the UK (and some might say the world) and a thoroughly lovely man. If you can get an appointment with him, you can come away smiling even if the news is bad.

(and if you are in the UK and want to talk, send me a private message and I'll give you my email or phone number)

melissa

[Laura]

Hi Emma,
I am 26 and I had my transplant June 18, 09 for aplastic anemia. I would recommend taking a look at the transplant part of this forum. There are a few of us that went through transplants last summer and we wrote there about them. For me personally, my physician had me do horse ATG twice before transplant. He said transplant is a huge undertaking, which it is, and wanted to make sure to exhaust all options before heading in that direction. Although, I did not wait 6 months between each ATG as my counts were very low. I also did not wait 6 months after my second round before heading to BMT. The first thing to see is if you have a good bone marrow match. If you do not have a match then it would be more likely that you would try a second round of ATG. If you have a perfect match then I would say go for the transplant. You are young and a transplant is your cure all. Be prepared for your life to be interrupted for at least a year. I had very long hair and losing it didn't bother me as much as I thought it would too. What have your counts been like?
Laura