Thread: Need Help
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Old Wed Nov 12, 2014, 06:10 PM
Missy D. Missy D. is offline
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Join Date: Nov 2014
Posts: 12
Need Help

I'm new to the forum and so far have found it very helpful but really need some help with my dad. Quick history: dx with AA in September. Started on cyclosporine right away. Has been getting blood and platelet transfusions once a week since June. Then magnesium once he started cyc. Has had problems handling cyclosporine. Extremely tired(only awake a few hours a day), confusion and not eating. Starting weight in June-132. Yesterday-112. Kidney levels also have gone up. Numbers as of yesterday- WBC-1.1, RBC-2.71, hgb-8, hct-24, ANC-.50 and platelets 24( transfused 4days prior).

History on my dad: my dad is 66. At 35 he had a heart attack and massive stroke. At 48 he had quadruple bypass surgery. Has a seizure disorder and used to be on dilantin and is now on Keppra.

Here's my problem. Yesterday my dad saw his doc and the doc believes he should stop the cyclosporine. He said at a high dose that seems to help(saw a slight increase in his numbers the last few weeks) my dad doesn't tolerate it. At a lower dose the doc feels it's not doing any good. He's been on it for 6 weeks.
He doesn't want to do atg as he believes the side effects will be too hard on him. He also doesn't want to do promacta either for the same reason. His suggestion is to stop treatment and do supportive care only. He would then release him to his old hematologist. The doc he's seeing now was who is other hematologist referred him to when he couldn't diagnose him. We feel like he's giving up on my dad. His doc now is supposed to be the best around my parents( Levine cancer center, Charlotte, NC.)
So here's my questions:

I understand the reason for not doing atg but not sure why not promacta? Are the side effects as bad as atg?

If my dad isnt getting any treatment then what's his prognosis? How quickly does AA progress?

He had a BMB in July do u think it would be good to do another?

Do we need to give the cyclosporine longer time at the lower dose that my dad can tolerate? Are we stopping too soon?

They want to put a pic line in as it's getting very hard for them to find a vein. Thoughts on a pic line over a port?

I would like to get another opinion by my mom is hesitant to do it. I live very close to Duke and would like to have him seen there. What do u think? Is it worth it? I'm 3 hours from my parents so I'm not sure how easy this would be for my them.

I'm really at a loss and just don't know what to do. As of now my dad is staying on cyclosporine at 400mg/day. They meet with the doc again on the 25th, which at that point if my dad's numbers haven't improved then he wants to take him off cyc and put in pic line. Any help would be GREATLY appreciated and just can't say how thankful I am for this forum.
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Missy, daughter of Jerry; diagnosed SAA September 2014; treating with cyclosporine
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