Decision

January 15, 2010

9:45am- Meeting with my doctor at Cross Cancer Institute to discuss further cancer treatments that are available to me for my rare form of cancer. . . aka . . Ewings sarcoma!!
okay so we got there and got out and in the truck by 10:40am wasnt even there for an hour it was pretty crazy. . . very very fast and i know me, i normally get al foggy brained and such when trying to listen. SOO i basically ignored my parents and everything else tryed not to think of any questions that my mind would make up on there own. AND pay attention to what he said about everything so i could actually comput what he was saying and understand and really think of good questions instead of not listening and panicing!!!
SO right now a few options not including alternative treatments!!! very big words and many phrases soo it is pretty intense.

I.E drugs. . . . .aka. . the standard i have taken b4 a matter of years ago.

ETOPOSIDE (VP-16, Vespesid) basically interferes with the growth and spread of tumor cells. Ive only taken this drug by IV in liquid form but you can take it orally but that would be gross. . .

Second I.E drug IFOSFAMIDE (Ifex, Holoxan) also interferes with the growth and spread of tumor cells. So i would be taking these two drugs at the same time both by IV. Basically the same side effects yatta yatta yatta.

CLINICAL TRIAL DRUGS . . . . . . . . . (extremely new)

So new it doesnt have a name yet. . . sound familiar!! I think soo! lol SCH 717454 at least i think thats what it is but anyway my last drug is called IGFR Anitbody (insulin antibody) which is techincally not a chemo but a treatment none the less. Anyway the new one is as follows:

P1446A-05 - acts to stop the activity of a group of proteins called Cyclin dependent Kinase (Cdks) which plays an important role in regulating the body's cell cycle and cell growth.
Okay this drug is so new it doesnt even have observed side effects, as of now they started testing in Dec of 2008 and well only 52 subjects and they just started to expand the trial!

Another trial consists of two drugs combined.
SORAFENIB and PLD (pegylated liposomal doxorubicin) this next part is a lil freaky to take in at once.
Its a study to determine the safest dose of Sorafenib and pegylated liposomal doxorubicin when combined together and the side effects from this regimen!! HAHAHA they dont even know the safest dose!!! they had people have severe side effects they cut the dose in half, mind you the side effect was severe diareah still it could of been worse at 500mg!! they cut it down to 350mg the subjects are reported to be doing just fine and the drug shows some promise, but actually being some Phase 1 investigators ginny pigs like literally lab rats kind of frightens me. Even if the drugs had no side effects!!



As of now these are my optioions that my doctor is provided for me, i am of course aloud to pursue other alternative treatments i have not put that much effort into looks just yet i have asked around from my many medical connections to let me know if they find anything. Right now its deciding which treatment to start on when 1 month is up and the IGFR antibodies are somewhat out of my system to start me on another drug. Now as for when start dates can occure is another issue aswell, most drugs are so new that only so many patients will get in because they are such small trials! like 52 so i would have to wait until someone comes off until i can recieve a spot on the trial! And others i have to wait to see if its been approved or not in the 3rd quarter. So that means waiting for over 2months just to see if it will be approved and some more time to see if it will start a trial. So a lot of waiting and searching for treatments that will work for my cancer.

Now i didnt ask for a prognosis and trully i dont want to but i cant help but feel rushed. He never said it but he said he wanted to start before it became 3 months in without treatment to get my chances up, unfortunatly even if i do there is no knowing if a treatment will work or not. More unfortunate the chances of any drug prolonging my life or shrinking or vanishing for a while is 5-10% if that much.

Funny i have everything anybody could need in the world, but i lack the one thing i would give anything for like anything. . . . . . . . . .to be healthy to be cancer free.
To many people that would just mean to be disease free but for someone who has been there and lived it for years and have dwelled with thoughts you only think of when your grey and wrinkly. It means FREEDOM, it means to be carefree it means lets take it slow and do what ever we want whenever we want because we have the time to do it.