Aa
Aplastic Anemia
My hep/gastro man that referred me to the Univ. of Miami called me last evening to see if I got into a trial. I advised him that I wasnt accepted beacuse I had hepB years ago..which he was aware of. He thought that issue was absurd but understood they wouldnt accept me. I told him I have the Pegasys in the fridge and ready for takoff on Friday. I also told him about my 75mil VL. He was not concerned about that. What he was concerned about was that 6 of his HepC patients came down with Aplastic anemia in the past 12 months.That usually is fatal..but sometimes can be treated.
Now Im terrified to take the Pegasys. He still wants Dr. Jeffers to try to get me in a trial I told him I just went thru this and its not goig to happen. He feels a P.I. is the only way to go...and with all the sx of Pegasys he'd rather see me not go that route. Im betwitched bothered and bewildered. Im going to crawl under a rock now and Im not coming back out. Ive had enough.
Now Im terrified to take the Pegasys. He still wants Dr. Jeffers to try to get me in a trial I told him I just went thru this and its not goig to happen. He feels a P.I. is the only way to go...and with all the sx of Pegasys he'd rather see me not go that route. Im betwitched bothered and bewildered. Im going to crawl under a rock now and Im not coming back out. Ive had enough.
OK. First of all. The patients undoubtedly do not have permanent aplastic anemia. They probably have severe hemolytic anemia brought on by ribarvirin usage which is very common. They also have a reduction in platelets and a reduction in white blood cell counts. These are all very normal side effects of interferon and ribavirin. Interferon and ribavirin can cause low platelets. Interferon almost always causes a reduced white blood cell count and we have addressed this many times before. Ribavirin can and commonly does cause hemolytic anemia, sometimes severe but by no means untreatable, and NEITHER are any of these things an impediment to treatment if managed correctly. Now, who and what kind of doc do you have? Because it concerns me he is not already well aware of this. But get him on the same page. And get a hematologist, if you have trouble with your counts, who has experience with HCV patients. Ok?
Secondly, I will tell you that even with me, who WENT INTO THIS with anemia of chronic disease AND had to have two units of blood transferred last week because I got as low as between 7-8 hgb, I am pleased to announce that although it has been rather hellish, I am now up to YES, almost an 11 hgb and I am at 36 hematacrit. I was going to break the news in a big post but this is as good a place as any!
Now, and you may want to pass this on to your doc, my hematologist, and I know NYGirl's doc did this also, put me on a WHOMPING 80,000 units of procrit per week (1 shot twice per week) until we get me stabiliized at a healthy hgb and know I am going to stay there, and then I will reduce to 60,000 units per week (which is where Jim's doctor had him during treatment) and if I ever get past that, maybe I can move back down to 40,000 units. We'll see. The important thing is, low blood cell lines can be treated with very prompt attention and aggressive use of rescue drugs and your alarmist doc needs to understand how all this works or you need to find one you feel comfortable can get you through this. Because you CAN do this! If I can do this, you can do it. Trust me on that. I am a huge weenie.
Secondly, I will tell you that even with me, who WENT INTO THIS with anemia of chronic disease AND had to have two units of blood transferred last week because I got as low as between 7-8 hgb, I am pleased to announce that although it has been rather hellish, I am now up to YES, almost an 11 hgb and I am at 36 hematacrit. I was going to break the news in a big post but this is as good a place as any!
Now, and you may want to pass this on to your doc, my hematologist, and I know NYGirl's doc did this also, put me on a WHOMPING 80,000 units of procrit per week (1 shot twice per week) until we get me stabiliized at a healthy hgb and know I am going to stay there, and then I will reduce to 60,000 units per week (which is where Jim's doctor had him during treatment) and if I ever get past that, maybe I can move back down to 40,000 units. We'll see. The important thing is, low blood cell lines can be treated with very prompt attention and aggressive use of rescue drugs and your alarmist doc needs to understand how all this works or you need to find one you feel comfortable can get you through this. Because you CAN do this! If I can do this, you can do it. Trust me on that. I am a huge weenie.
I r just read your profile and wanted to congratulate you for completing what must have been a very grueling treatment - 73 weeks on infergen. My hat goes off tos you. Are you officailly SVR (6 months post?)
frijole
frijole
I know what each and every one is saying...he was never an alarmist..just wanted me to beware of "what could develop". I know this is NOT common whatsoever. And your probably right he too was in a "mode of alarming me obviously". What can I say? Its been a crappy month one thing on top of the other. Hopefully this too shall pass fast. :}
]Thanks for all your comments)
]Thanks for all your comments)
Charm, Perhaps frijole has a point in that your doctor just may have been in an alarmist mood that day. The words Aplastic Anemia aren't words you'd easily misunderstand. I heard them at the end of my treatment and I'll never forget them. Aplastic? I don't know, it seemed an odd word to me and so I'm sure I wouldn't forget it. I was very anemic and doing three shots of procrit a week the last six months of treatment. One day in my doctors office his nurse was helping me out with something and I started to ask about the anemia. She talked about bone marrow sometimes shutting down after such a long treatment, (I did the long haul) and explained that's why my blood counts had been so low. She didn't say I was suffering from Aplastic Anemia but she likened it to Aplastic Anemia. Maybe that's what your doc meant. Anyway, I lived, and if my treatment hadn't been successful, hard and long as it was, I would have done it again in a heartbeat. You really don't need this headache just before starting.
I agree with the other guys I've been in here for a few years now and haven't ever heard of one person with aplastic anemia. Yeah we do get hemolytic anemia - maybe he said the wrong thing (doctors do that a LOT).
I bet he meant to say hemolytic and just mispoke. Lots of us have battled with that one and it's no fun but no reason NOT to do treatment.
Can you call and check? Considering nobody who actually HAS HCV has ever heard of anyone having this before and nobody was EVER warned about it...it's a bit odd and like frijole said he sounds like an alarmist to me too.
I bet he meant to say hemolytic and just mispoke. Lots of us have battled with that one and it's no fun but no reason NOT to do treatment.
Can you call and check? Considering nobody who actually HAS HCV has ever heard of anyone having this before and nobody was EVER warned about it...it's a bit odd and like frijole said he sounds like an alarmist to me too.
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