Re: Skip's ordeal

[Guest guest]

Dear Lottie and Jimmy,

I do hope things will settle down for the both of you.

I am on a drug for high ferritine (Iron) which is

Exjade, I was on desferol but my tummy got so black

and blue (very low platelets) they asked Norvitis for

the drug Exjade. Norvitis help with the cost, my

insurance pays 80% Norvitis pay $500, and I pay $143 a

month. I started out with 1000mg a day but my iron

count kept going up, due to so many transfusions, I am

on 2000mg a day. We are hoping that it will come down

soon. As I was the first one in the Atlantic

provinces, they were not sure how I would react. It

is like drinking water with sand mixture, very gritty.

The normal ferritin is about 40 for men and 50 for

women, mine as of last month was 2880, and as you know

Too much iron in body organs, such as the pancreas or

heart, can affect how the organ works.

that is the reason I wish Dasatinib would slow down

the infusion rate, as of this month I get two bags of

Hgb around twice month. I get platelet infusion at

least 4 times a month and a lot of time 5 or 6 times a

month, but they claim these drugs which are working

for me, cause low blood and platelet, just a vicious

circle. I do hope your iron does come up a bit, and I

am glad Jimmy is doing well, guess that is all we can

hope for.

Skip and Kim Duffie

dx'ed 30++++ years ago

--- Lottie Duthu <lotajam@...> wrote:

> Dear Skip,

> I am sorry you had yet another drill to go

> through. Those hospital stays can be a pain, but I

> perfectly understand not wanting to get so many

> blood products, as you can go on iron overload. I

> thought I would take iron to see if it would help my

> my anemia and it made me very ill for the past few

> days, so I am stopping it. Our roles were reversed

> and Jimmy was waiting on me. I really don't

> understand the logic in giving someone like you and

> me these massive doses of drugs without testing for

> PK levels. I hope you get the proper dosage for

> you.

> Blessings,

> Lottie

>

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