New member with SAA - introducing myself

[KMac]

Hello everyone,

I have been reading this forum for several months now. The stories and information presented here have meant a great deal to me during this most trying and worrisome time in my life. I would especially like to thank Neil and Ruth Cuadra for all they have done here. To be honest, at first I was so overwhelmed with symptoms and fears that I wasn't sure where to start with my questions and concerns.

Very fortunately, I am slowly but significantly improving 7+ months out from ATG treatment. Life is seeping back into my body. I am more relieved and grateful about this than I can put into words! An outline of my story follows below:

To others with SAA, my story will sound familiar. In the months leading up to my diagnosis, I felt increasingly fatigued, but simply chalked it up to stress. The thought of severe illness didn't cross my mind. Then in the second half of January 2012, the telltale symptoms hit me with the force of a Mack truck - headaches, strange bruises, bad cold sores, soaking night sweats, nearly constant nose bleeds, fever, and an exhaustion unparalleled in my previous 42 years of life. I was too tired to even stand up in the shower.

Googling my symptom list, I feared some strange sort of leukemia (I guess not far off the mark, in a way), and I went to my family doctor. Most of you know the drill from here. They took a CBC. The next morning I received the fateful call to report directly to a hematologist/oncologist for a bone marrow biopsy. Upon my arrival, the hematologist looked worried. She basically told me it looked like either AIDS or leukemia, and that I needed a lot of blood and quick. I received 4 units of red blood over 24 hours and was sent home to await biopsy results.

I've been lucky to have excellent doctors and nurses to guide me in my treatment path. Within 3 days, I had the diagnosis of SAA, and treatment options explained to me. I was just happy what I had didn't have the word 'leukemia' in it. Little did I know!

I decided to try for a bone marrow transplant. My case was dire enough to go for that option, if one of my two brother's were a match. Neither of them were. I appear to have some good matches on the registry, but I understood that barring a sibling match, ATG/cyclosporine was probably my best first line of treatment.

I had many of the symptoms that can occur during and after ATG - allergic reaction, hives, fever, irregular heartbeat, fairly nasty serum sickness. We had trouble getting the first doses into me - the rate had to be slowed from 4 down to 24 hours. My ANC went down to 0 during treatment, my platelets down to 3 shortly thereafter.

After ATG improvement was slow. While waiting for treatment to work, I needed about 24 units of red blood and 12 units of platelets. First two months, little change. But I showed some response to neupogen, which my doctor saw to be a good sign, and also 4/30 (7 weeks post-ATG) was my last platelet transfusion. Three months post-ATG, 6/13, was my last red blood transfusion. Months 4 and 5 red blood held steady just above transfusion levels, and platelets rose above 50. Finally just before the 6 month mark, my red blood started rising as well. What a relief!

Here is a list of the main issues I have feared related to this disease and its treatment. Worrying about all of these things at once was overwhelming to say the least:

1) severe anemia
2) very low WBC, infection
3) bleeding from very low platelets
4) allergic reaction to blood products, fear of becoming refractory to transfusions
5) severe iron overload (serum ferratin over 4000)
6) liver distress (GGT over 800, billirubin at 1.7)
7) kidney distress (creatine at 1.8)
8) fear of evolution to PNH, MDS, AML (but BMB on 09/2012 thankfully showed no indication of this)

...of course most of us with SAA have to deal with most or all of the above issues. This is a scary disease with an uncertain path. Yet there is also great hope. As of today (10/17/2012), with the exception of low WBC, each of the above issues has improved very significantly for me, and even the WBC shows promise on some levels.

I have some WBC and other questions I will post in separate threads.

I look forward to being a part of this forum.

Thank you,
Kevin McNamara

[Neil Cuadra]

Kevin,

You're a good writer. Most importantly, you've successfully fought back against SAA. We're glad to have you here.

From the succinct summary you've provided, it almost seems as if you were following a clearly defined path, but as we all learn there are many doubts, uncertainties, and swings of fortune during the journey.

Seeing your list of simultaneous worries makes clear why these diseases are so overwhelming to face. Even though you still have concerns, and a challenge in getting your white count up, congratulations on your success so far.

[KMac]

Neil,

Thank you for welcoming me aboard! Yes, I've been trying to follow the most clearly defined path I could find. But as you say, things don't always go as hoped or planned.

I've had a few people at the hospital tell me that (although there is no definite data on this) the people who have the most obstacles to fight, with the slowest recoveries, sometimes achieve the most durable remissions. It has been very inspiring to read Ruth's story of the challenges she has faced and overcome, and hear how well she is doing today.