Re: Quick Update Ariad Trial

[Guest guest]

Hi Beth, well, that's a great update, keep up the good work, we want this drug

to work!  Bobby

a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995 02/2000 - Gleevec

Trial/OHSU 06/2002 - Gleevec/Trisenox Trial/OHSU 06/2003 - Gleevec/Zarnestra

Trial/OHSU 04/2004 - Sprycel Trial/MDACC, CCR in 10 months #840  -   Zavie's

Zero Club 09/2006 -  out of CCR 04/29/08 - XL228 Trial/ U.of Michigan

06/02/08 - CCR ( in 4 weeks)

02/13/09 - XL trial ended due to side effects

04/13/09 - New Trial, Ariad / U. of Mich./ Dr. Talpaz

 

From: bethgalliart@... <bethgalliart@...>

Subject: [ ] Quick Update Ariad Trial

" " < >

Date: Thursday, July 16, 2009, 10:19 PM

 

Hi All,

Well, I have been on the Ariad drug for a month today. Today was Cycle 2, Day 2.

I am amazed how quickly the time has flown by. After a rocky start with intense

bone pain, I don't seem to have many (if any side effects). I have mild skin

peeling on my hands and I do like to sleep more than ever (slept 15 hours one

night last week). But, I can live with that. My counts are holding rock steady,

and haven't even really bounced at all over the past month, so I'm glad about

that.

Yesterday was a long day at UCSF with blood draws and EKGs constantly. At least

I had a private room with a bed, so I could nap. But, the nurse had a hard time

starting my IV, so I have four holes in my arm! I couldn't believe it. I have

super big veins that are easy to hit, this was a first. My arm is quite sore and

lumpy today. But, I guess there are worse things in life...

Most excitingly, I rode my horse today for the first time in four or five

months! I haven't felt like I had the energy or that it was safe for me to ride,

so I haven't been. I didn't ride for long, just 20 mins or so. I'm super sleepy

(took a 2 hour nap), and legs are already stiff, but I'm so darned excited to be

back in the saddle. My horse was so sweet as I went to get on (we use a mounting

block) he turned his head and nuzzled my boot! What a nice welcome.

Anyways, that is my quick update.

Beth

[Guest guest]

Hi Beth,

Thank you for the update. I'm so happy you got to ride your horse. Living a

normal life is so important. 

Those long days are the pits aren't they? I feel bad that it took them so many

tries to get your IV in.  Did they try in your hand or your arm? I always

request my arm because the skin on my hands is so tough and the veins don't roll

in my arm.  Just a suggestion. Do we have those long days on Day 1 of each

cycle? I know that after the 3rd cycle we don't have to have the 2 week draws

but I didn't ask about the 8 hour day on Day 1.  My research nurse is doing

better. I guess he is new at this and doesn't have the " routine " down yet. 

Lucky for me!!

It's good to hear from you. Praying your next 8 hour day goes better.

God Bless,

Jackie S.

From: bethgalliart@... <bethgalliart@...>

Subject: [ ] Quick Update Ariad Trial

" " < >

Date: Thursday, July 16, 2009, 9:19 PM

 

Hi All,

Well, I have been on the Ariad drug for a month today. Today was Cycle 2, Day 2.

I am amazed how quickly the time has flown by. After a rocky start with intense

bone pain, I don't seem to have many (if any side effects). I have mild skin

peeling on my hands and I do like to sleep more than ever (slept 15 hours one

night last week). But, I can live with that. My counts are holding rock steady,

and haven't even really bounced at all over the past month, so I'm glad about

that.

Yesterday was a long day at UCSF with blood draws and EKGs constantly. At least

I had a private room with a bed, so I could nap. But, the nurse had a hard time

starting my IV, so I have four holes in my arm! I couldn't believe it. I have

super big veins that are easy to hit, this was a first. My arm is quite sore and

lumpy today. But, I guess there are worse things in life...

Most excitingly, I rode my horse today for the first time in four or five

months! I haven't felt like I had the energy or that it was safe for me to ride,

so I haven't been. I didn't ride for long, just 20 mins or so. I'm super sleepy

(took a 2 hour nap), and legs are already stiff, but I'm so darned excited to be

back in the saddle. My horse was so sweet as I went to get on (we use a mounting

block) he turned his head and nuzzled my boot! What a nice welcome.

Anyways, that is my quick update.

Beth

[Guest guest]

Hi Jackie,

Thanks for checking in, I was getting worried about you. Yes, the long days are

the pits. They were trying in my arm...and I have big, easy veins. It is still

so sore I can't touch it, but I don't think it is infected. Annoys me a bit!

I think we are done with the long days...I don't think there are any more from

what I can tell. Glad to hear your research nurse is getting better...it isn't

fun being a double guinea pig.

How is it being back home again? I bet your family is happy you are back! How

are your counts holding up? Getting better or ?

Take care!

Beth

[ ] Quick Update Ariad Trial

" " < >

Date: Thursday, July 16, 2009, 9:19 PM

 

Hi All,

Well, I have been on the Ariad drug for a month today. Today was Cycle 2, Day 2.

I am amazed how quickly the time has flown by. After a rocky start with intense

bone pain, I don't seem to have many (if any side effects). I have mild skin

peeling on my hands and I do like to sleep more than ever (slept 15 hours one

night last week). But, I can live with that. My counts are holding rock steady,

and haven't even really bounced at all over the past month, so I'm glad about

that.

Yesterday was a long day at UCSF with blood draws and EKGs constantly. At least

I had a private room with a bed, so I could nap. But, the nurse had a hard time

starting my IV, so I have four holes in my arm! I couldn't believe it. I have

super big veins that are easy to hit, this was a first. My arm is quite sore and

lumpy today. But, I guess there are worse things in life...

Most excitingly, I rode my horse today for the first time in four or five

months! I haven't felt like I had the energy or that it was safe for me to ride,

so I haven't been. I didn't ride for long, just 20 mins or so. I'm super sleepy

(took a 2 hour nap), and legs are already stiff, but I'm so darned excited to be

back in the saddle. My horse was so sweet as I went to get on (we use a mounting

block) he turned his head and nuzzled my boot! What a nice welcome.

Anyways, that is my quick update.

Beth