Re: HHT

[Guest guest]

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> Dear (Cogan),

>

> You brought back more memories of HHT. I, too had a cvc (central venous

catheter) in my chest. Every time Jimmy changed the dressing, the skin would

come off with it and the bleeding would be visible immediately after. He had

to put more tape right back in the same spot. Did you have to do anything like

that? I had to turn my head away from the hole in my chest, so I did not

breathe any bacteria on it. Now that was taken with INF, so it was a double

whammy. I am still wondering how you pulled it off by yourself - you have some

determination.

______________________

Hi Lottie,

I rarely think of those old days with CML.....but being on triple therapy was

probably the worst 4 or so months of my life....and I did wonder if I would

survive " cml treatment! " MDACC put in the catheter, without anesthesia (just a

local) and other medical facilities considered it archaic looking....just

applied to the outside chest wall with large black stitches that kept tearing

the skin. I did learn how I was supposed to change the dressing, but I could not

do it with my left hand in a cast, so I went to my onc's office 2 or 3 times a

week for them to change it. The interferon made me loopy and I was really only

borderline safe living alone with friends checking in on me. Because of low hgb,

I passed out in my kitchen one night...and when I came to, I wondered why I had

decided to lie down on the floor for a nap??? My counts crashed and I was off

drug more than I was on it....and my hgb dropped to 8.7, the lowest it has ever

been.

At 3 months on this trial, I traveled back to MDACC (a 17 hr travel day with my

lay-overs). I had a long laundry list for Dr. Kantarjian of all the reasons that

this trial was too hard for me....he took one look at me (thin hair, glazed

expression, shoulder in a sling because of my fall in the kitchen) and

said... " this is obviously too toxic for you " ...yeah. STI was in trial but I did

not qualify because you had to be on inf for 6 months without a response and I

had only been on for 3 months (no response) but he said he would try to get an

exception from the FDA and drug company. My sister actually came from Calif to

help me get back to Oregon because I did not even feel safe traveling alone, and

then she stayed with me for a bit. When MDACC saw that my hgb was only 8.7, they

gave me my 1st Procrit shot and when I got home I had a red cell transfusion.

About a week later, I was feeling really off.....demanded that my local onc put

me in the hospital and figure out what was wrong....ends up I had septicemia

(staph in the blood) and was there for a week on IV anti-biotics. Dr. K had got

me into the MDACC STI trial but I was not healthy enough to travel and it was

going to close (Dec. 1999).

I decided to consult with Dr. Druker, right here in Oregon and he still had some

openings for STI (now that I qualified). I was one of 3 people who started STI

together and then his trial closed! AND he had Carolyn pull that damn catheter,

which he said he hated and that they were always a source of infection. That was

Feb. 2000.....and I am still with Dr. Druker and nothing since as far as CML has

been as hard as this period of time. Sometimes it is better to get the worst

over with first. I think we earned our 'survivor's wings' with these early cml

treatments.

C.

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