ATG & Leukemia later?

[alanderson]

First I want to let everyone on here know I'm sorry that you're here. This disease sucks.

I was diagnosed and treated in July 1992.

I honestly cannot remember all of the medicines I took, it was just too long ago. I do know for sure that I had ATG, not sure which one though. I remember the doctor telling me there were two different kinds but I don't remember which one I got. I also know that I took Cyclosporine, Prednisone, an antibiotic, iron, an inhaler and there were more, just don't remember.

A few years ago I was declined for life insurance. The company I applied with has a "permanent decline" for SAA. They didn't specify why tho, just told me I would never get insurance through them. So, I scheduled an appointment with the doctor who treated me (he was still there after all these years). Since the disease was so rare in 1992 and I was his first patient ever with it (3rd in the history of the hospital) I asked him to review my records and if he knew then what he knows now, would he still diagnose me as SAA. I had a lot of markers for SAA, but not all, and I also had characteristics of Lupus and Leukemia that aren't usually found with SAA. But not enough markers of either of those to diagnose as that. I made that poor man earn his salary and education. I was thinking that since I was such an odd case, maybe I didn't really have it and I had something else?

Anyway, the answer was yes, he would still say that was SAA. I then asked him why he thinks that the insurance companies doctors would put a permanent decline on SAA. His thoughts were because ATG can cause Leukemia later in life. Makes sense to me.

Does anyone know a true statistic of my odds and how long it takes? I'm 20 years post ATG so I think I'm in the clear but I just want to make sure.

I still get an annual CBC done and I've had good counts. I've had three children and my counts would always rise during pregnancy and dip after, but they have always leveled again within a few months.


Thanks in advance for any insight.

[Neil Cuadra]

It seems that the insurance companies have statistics about it. I can understand why you'd want to know what those statistics say, both because of your life insurance issue and because you want to know whether you are still at risk.

I know people who were turned down for life insurance more than a dozen years after signs of a marrow disease had vanished.

My guess is that the statistics would show that your life expectancy is practically normal, but the insurance company bases their denials on whatever difference there is between people who once had SAA and people who never had SAA. Since aplastic anemia can resurface years after ATG (and be treated again with ATG), the risk is not zero. The possible indicators for lupus and leukemia might have indicated that some other risks were present too.

Every year that you've been free of disease makes it less likely that you'll ever have to deal with it again, and I'm glad you're doing so well. It's a shame that insurance companies make blanket decisions like this, even though if you're a non-smoker I bet your life expectancy is better than a smoker who never had SAA.

[Karenish]

In the UK there is an insurance company who will take you on, but life insurance is slightly higher about £40 a month as opposed to £12 a month - all they want is a letter off your consultant to say that you are now transfusion independent. Their belief replicated mine really - you have just as much chance getting killed driving to work, but nobody stops insuring drivers.....
as for the leukemia bit - I was told it was more likely while you are on cyclosporin, as this suppresses T cells which would normally fight cancer cells, but don't quote me. xx 20 years. wow, if I last 20 years I will be 73!