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Old Sun Dec 14, 2014, 10:13 PM
KMac KMac is offline
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Join Date: Oct 2012
Location: Golden, Colorado
Posts: 103
Hi Suz,

I am sorry to hear your ANC has fallen down. How are your other counts doing? My hematologist often mentions that a fall in ANC alone, even a steep one, can sometimes be a viral or other infection, and not always a relapse. I hope that is the case with you!

If not though, I agree with Hopeful that it is very important to receive ATG in a hospital where they have extensive experience administering it. I actually started at a hospital where they did not have a lot of experience in ATG, I began to have a bad reaction about halfway through the first dose, and they got concerned and stopped the procedure. At that point I decided I wanted to find a more experienced hospital with respect to ATG. And this is not to put down the hospital where I began my treatment. I think they were a fine hospital. They diagnosed me very quickly, and in a very selfless professional manner, helped get me where I wanted to be once I told them of my wishes. But with something as rare as what we have, it is so crucial, as I have often heard Dr. Young at NIH say, that the patient get to a treatment center with specific extensive experience treating aplastic anemia.

Since you are already considering hospitals far from home, I can highly recommend my hospital - Colorado Blood Cancer Institute (CBCI) at Presbyterian Saint Luke's in Denver. My Dr. is Dr. Richard Nash, he is an immunologist/hematologist with extensive SAA treatment (both BMT and ATG). He is excellent. Also, if you ever needed a BMT, CBCI has very good success rates for that.

For my ATG at CBCI, I too had mainly nurses at my bedside for the majority of my treatment. But I was really OK with that, because they were so experienced with ATG admin, and just plain good at it. And I was a pretty tough case. My first dose which should have taken 4 hours, took 24 hours (due to bad allergic reactions). But they got me through it (not quite sure how), and anytime things got scary, the nurses got right on the phone with Dr. Nash, even in the middle of the night. After my treatment I thanked the department head for getting me through the process, and he just smiled and said, "oh around here, we make sure everyone makes it through the ATG".

Besides Cleveland Clinic and Dr. Maciejewski, I am not familiar with the other doctors you mentioned. But so far as him being busy, I have read this story which speaks very highly of his willingness to focus on individual patients and spend time with them:

http://www.newsweek.com/falling-medical-abyss-86537

...he sounds like quite a doctor. I personally wouldn't be too concerned about the lower BMT survival rates at Cleveland Clinic. I have heard about those too, but also heard the specific reason for that is that Cleveland Clinic sees very difficult cases, due to their excellent reputation and deep expertise.

I can tell you a bit of a story of my experience with Dr. Maciejewski, admittedly second hand, so I might get it somewhat wrong. But at my first hospital I had a wonderful hematologist that I will always hold in high esteem for getting me diagnosed properly and quickly, doing an expert job explaining to me what I had, and for her compassion and respect in helping me get where I wanted to be. But at first I had little idea what was going on, or where I wanted to be. I came across Dr. Maciejewski online and gravitated to him in my mind's eye. I asked my hematologist if she could try to contact him to review my case (informally). She managed to do that for me, and was taken by his passion, humanity, expertise, and colorful manner. While he said he really couldn't say much on my case without seeing me, he agreed with my hematologist that perhaps one way to get me through the ATG would be to bring me into ICU and attach me to a machine to keep my heart beating (one of my adverse side effects was dangerously low heart rate). But when I went to CBCI, Dr. Nash decided before trying that, we might as well slow down the infusion rate to see if that helps. And it did.

My point in the above story isn't that one way or the other was right or wrong, but rather that perhaps a doctor working in a cutting-edge research facility (with especially difficult cases) such as Cleveland Clinic, may be used to taking a more intensive treatment route. Whereas CBCI, while also excellent, is more of a treatment facility, so maybe they had a mindset of trying a less intensive route first. Which in my case worked well. So broadly speaking, in choosing your treatment center, you might want to think about whether your preference is to be somewhere that is pushing the envelope in clinical trials/new treatments (NIH also comes to mind there), or you'd be more comfortable somewhere that focuses on administering the already proven 'gold-standard' treatments.

Well, in closing, again it would be wonderful if you didn't have to go through another round of treatment. But if you do, we are fortunate to live in a place and time where the outcomes keep getting better, and we have multiple good choices.
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Kevin, male age 45; dx SAA 02/2012 - Hgb 5.8, platelets 14, ANC 200, 1% cellularity. Received ATG 03/2012. As of 03/2015, significant improvement - Hgb 15, platelets 158, ANC fluctuates around 1000, Lymphocytes 620. Tapering cyclosporine. BMB 20-30% cellularity.

Last edited by KMac : Sun Dec 14, 2014 at 10:24 PM.
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