How did I just now find this site???

[Brendan]

Hi everybody!
I was diagnosed with SAA back in 2005. I didn't do a BMT because there wasn't a related match, and after several months of Cyclosporine my counts started to rise, so they stuck the BMT option on a shelf. I've been on Cyclosporine ever since, and last year we started a 15 month effort to taper me off of it. That was unsuccessful, so I'm back on full strength CyA dosage.

This is a great site! Too bad I couldn't have found it back when I was diagnosed (if it was around then) since it would have been a great resource. There weren't a ton of AA blogs when I was diagnosed, or I was just too daft to find them, so I started my own: aplasticanemia.brendangates.com. The way I found this site is actually through a link another AA blogger had on her site. She's a member here (kathrnclark) and hopefully recovering nicely from her BMT earlier this fall.

I'm looking forward to participating in this site any way that I can. Thank you all for making such a great community, and sharing your stories.

Brendan

[triumphe64]

I assume you are aware of this site too.

http://www.aamds.org/

[Neil Cuadra]

Hi Brendan. Marrowforums has been around since 2006, the year after you were diagnosed. Bruce Lande's Aplastic Central site was already around in 2005.

Have you been tempted to consider a stem cell transplant from an unrelated matched donor, given the improved success rates for unrelated donor transplants since 2005?

[Ryan Jay]

I have been a lurker on your blog for about 2 years.

I have been meaning to send you a message for some time.

Your site helped me a ton when the stuff was hitting the fan back in 2010.

[Hopeful]

Hi Brendan!

I also have read your blog occasionally through the years. I was rooting for a durable remission for you and am sorry to hear that you have relapsed. Platelets are also my biggest worry. Hopefully, restarting the cyclosporine will bring back your counts.


Thanks for all of your contributions!

[Brendan]

Thanks for the welcome, all.

@triumphe64 I have been to the AA&MDS site a few times, yes. In fact I think I might have just received the latest newsletter from them earlier today!

@Neil thanks for putting this site together. I haven't been tempted to push for a BMT; my docs are happy with where I am right now (as am I). I've been fortunate to not need one so far, and I have my fingers crossed that I won't. How much have the unmatched donor success rates improved? Can you point me towards any articles?

@Ryan thanks for visiting the site... there were a couple of sites that really helped me so I felt like I ought to contribute too. Glad to hear the stuff is no longer hitting the fan!

@Hopeful thanks for visiting my site, for rooting for my durable remission! I can happily say that I'm still in remission, at least by my definition. My docs were trying to wean me off of the CyA, but my counts started to drop so they abandoned that plan. Since getting back up to my old dose my counts have come back up to where they were before too. We'll both get those platelets up someday!

[Neil Cuadra]

Originally Posted by Brendan

@Neil thanks for putting this site together. I haven't been tempted to push for a BMT; my docs are happy with where I am right now (as am I). I've been fortunate to not need one so far, and I have my fingers crossed that I won't. How much have the unmatched donor success rates improved? Can you point me towards any articles?

This page on the National Marrow Donor Program website describes a number of transplant advances.

Take a look at this presentation by the Center for International Blood and Marrow Transplant Research. Silde 19, titled "Probability of Survival after HLA-matched Sibling/Unrelated Donor Tranplants for Severe Aplastic Anemia 1992-2003 By Transplant Year", shows that unrelated-donor AA transplantation success rates have increased dramatically in just a decade. There have been more improvements in the 8 years since that data was compiled.

[kjraimondi]

Hey Brendan! Glad you found the site... I have been following your blog since my VSAA diagnoses in September. btw...looking at your blood counts in 2005 it looks like your were VSAA unless I misunderstand how they draw the line there. My WBC is at near 0, RB around 8 and plates around 6 when I was first diagnosed. Now I'm about 2.5 WBC, 8 RB and 18 plates. I am still transfusion dependent every week or two for plates and every couple of weeks or longer for Red. I am on 300mg of the stink pill. How long before you were no longer transfusion dependent?

[Brendan]

@Neil thanks for the links. It looks success with unrelated donors has been rising at a much greater clip than the related donor success rates. That's good news for me, if I ever have to undergo the procedure.

@Ken thanks for checking out my site. You might be right that I was VSAA; to be honest I didn't know there was a VSAA versus SAA distinction. My doc referred to my initial diagnosis as severe a few years back, and I just ran with that. As for my transfusion timeline, I think it took about 2 months of transfusions before my counts started to trickle up "on their own". Have you considered the Apotex brand cyclosporine? That was given to me a couple of months back when my other brand was out of stock. I think the Apotex are considerably less stinky... though my nose could just be dead to the smell after 6 years of taking them.

[Neil Cuadra]

Originally Posted by Brendan

You might be right that I was VSAA; to be honest I didn't know there was a VSAA versus SAA distinction. My doc referred to my initial diagnosis as severe a few years back, and I just ran with that.

The distinction is merely for categorizing patients based on their absolute neutrophil count. If your ANC fluctuated above and below 200 then you were technically SAA one day and VSAA another. If it stayed between 200 and 500 then by the book you were consistently SAA. But the cutoff points are just arbitrary dividing points between the risk levels.

[Robi1Knobi]

Congratulations on finding this awesome site where we all come together, talk, & share what works )