Re: Team In Training Update/Warfarin, Etc.

[Guest guest]

At 12:34 PM 6/25/06 -0500, you wrote:

>For those of you who are interested, I just wanted to let you know that

>the Leukemia Society's Team in Training groups (from across the US) that

>ran in the Anchorage marathon and half-marathon last week raised more

>than $4 million, collectively, for the LLS! That money goes to patient

>services and treatment research.

Hi ,

That is an amazing amount of money raised for important research.....the

LLS is still funding Dr. Druker's reasearch and I believe Dr. Sawyers

(UCLA) among others. Thanks for once again being a part of this fund

raising campaign and I hope you did enjoy your visit to Alaska and your run.

Because of your issues with Gleevec and the anticoagulants, do you think

you might switch to dasatinib (Sprycel) when available......did the OHSU

doctors have any opinion about that?

or would that just be a 'new experiment? "

Glad to hear that your PCR is holding.

C.

who also remembers the daily inf jabs......I do Procrit with an insulin

needle right in the belly and it is not bad

[Guest guest]

Hello

I am soooo thankful for all of you that ran/walked that marathon and

half marathon! My 22 year old son, has CML and through doing

this you all have a direct hand in his future, in his life! Thank

you so very much.

We will be in Alaska on a fundraiser for the LLS in August this

year, Fairbanks and Anchorage. Hopefully we will be able to raise a

meaningful amount of money in our efforts too.

If any of you want your name written on the rv for the journey, send

me an email and ride with us You can see what the rv will look like

by going to www.livingwithcml.blogspot.com

, I hope you PCR goes negative really soon and all your

counts settle down. My son just got the results from his 2nd pcr -

0.028! Hopefully he next one will show even better results :-)

I loved your www.upstairswindow.org site

Again, deep thanks.

Love

Annie - mom of

www.livingwithcml.blogspot.com

>

> Hi all,

>

> For those of you who are interested, I just wanted to let you know

that

> the Leukemia Society's Team in Training groups (from across the

US) that

> ran in the Anchorage marathon and half-marathon last week raised

more

> than $4 million, collectively, for the LLS! That money goes to

patient

> services and treatment research.

>

> I personally ran the half-marathon and am happy with how I did, all

> things considered. I got a nasty case of food poisoning right

after I

> arrived in Alaska (I'm thinking from the airplane deli sandwich),

but

> thankfully I had two days before the race to recover. So although I

> wasn't in best form, I did have a good time. Anyone else here who

was in

> Alaska for the TNT races?

>

> I'm doing OK overall. My PCR remains positive, but I can live with

that.

> Unfortunately, I've had to switch to daily heparin injections and

stop

> taking the warfarin pill because my INR refused to stabilize -- it

was

> just all over the place. So, I'm back to daily jabs, sort of like

my old

> interferon days. :-) My stomach is a mass of bruises thanks to

the

> anticoagulants, but at least they're not painful. I'd be

interested in

> hearing how others taking both Gleevec and warfarin (Coumadin) are

doing

> (Zavie -- I know you're doing OK). The good doctors at OHSU told

me a

> few weeks back that the interaction between these two drugs can

cause

> unpredictable swings in INR, and that's indeed what was happening

to me,

> and that can be a bit dangerous. The question that remains to be

> answered is whether the warfarin changes the blood levels of

Gleevec.

> Apparently that is a possibility, but without monitoring of Gleevec

> blood levels, we won't know for sure.

>

> Novartis has become very interested in my case because of my

unexplained

> deep vein thrombosis and pulmonary emboli and managed to track me

down

> both by phone and email. They've requested a copy of my records

and to

> speak to my current hematologist. I did talk to a pharmacist and a

> safety specialist at Novartis. They told me that they have had

reports

> of thrombosis in Gleevec patients, but they claimed that they did

not

> keep statistics on how many incidents there have been (which I

find hard

> to believe!). The current Gleevec prescribing information has

listed

> DVT/PE as a possible but rare adverse event since it was updated in

> 2004.

>

> I'm sorry that I don't keep in better touch with you all, but I do

read

> your emails and hold you all in my thoughts.

>

> G.

> www.cmlsupport.com

> www.upstairswindow.org

>

>

>

>

[Guest guest]

Hi ,

Congratulations on your marathon. You are such a trooper, battling

food poisioning, coumadin issues, not even to mention CML!

Sorry you are experiencing such troubles with DVT. It will be

interesting to hear more on what might be the cause of it.

I guess I am just a little bit curious as to how Novartis tracked you

down. From what you posted it doesn't seem that you contacted them.

The usual procedure for things like this is for the doctor to get in

touch with Novartis through their medical information department and

work with them in recording this incidence and investigating it

thoroughly. It is unusual for a drug company to seek you out. If

your doctor is in touch with them, your doctor would not give out

your information unless you consented for him/her to do so.

Have you posted this information anywhere else publicly?

Of course, it wouldn't be hard to imagine that some Novartis people

are lurking here on this list.

Note to everyone, be very careful of the personal information you

provide here.

, please keep us posted on any new developments. I am sure

this is no fun for you.

Love and all good things,

Cheryl-Anne

>

> Hi all,

>

> For those of you who are interested, I just wanted to let you know

that

> the Leukemia Society's Team in Training groups (from across the US)

that

> ran in the Anchorage marathon and half-marathon last week raised

more

> than $4 million, collectively, for the LLS! That money goes to

patient

> services and treatment research.

>

> I personally ran the half-marathon and am happy with how I did, all

> things considered. I got a nasty case of food poisoning right after

I

> arrived in Alaska (I'm thinking from the airplane deli sandwich),

but

> thankfully I had two days before the race to recover. So although I

> wasn't in best form, I did have a good time. Anyone else here who

was in

> Alaska for the TNT races?

>

> I'm doing OK overall. My PCR remains positive, but I can live with

that.

> Unfortunately, I've had to switch to daily heparin injections and

stop

> taking the warfarin pill because my INR refused to stabilize -- it

was

> just all over the place. So, I'm back to daily jabs, sort of like

my old

> interferon days. :-) My stomach is a mass of bruises thanks to the

> anticoagulants, but at least they're not painful. I'd be interested

in

> hearing how others taking both Gleevec and warfarin (Coumadin) are

doing

> (Zavie -- I know you're doing OK). The good doctors at OHSU told me

a

> few weeks back that the interaction between these two drugs can

cause

> unpredictable swings in INR, and that's indeed what was happening

to me,

> and that can be a bit dangerous. The question that remains to be

> answered is whether the warfarin changes the blood levels of

Gleevec.

> Apparently that is a possibility, but without monitoring of Gleevec

> blood levels, we won't know for sure.

>

> Novartis has become very interested in my case because of my

unexplained

> deep vein thrombosis and pulmonary emboli and managed to track me

down

> both by phone and email. They've requested a copy of my records and

to

> speak to my current hematologist. I did talk to a pharmacist and a

> safety specialist at Novartis. They told me that they have had

reports

> of thrombosis in Gleevec patients, but they claimed that they did

not

> keep statistics on how many incidents there have been (which I find

hard

> to believe!). The current Gleevec prescribing information has listed

> DVT/PE as a possible but rare adverse event since it was updated in

> 2004.

>

> I'm sorry that I don't keep in better touch with you all, but I do

read

> your emails and hold you all in my thoughts.

>

> G.

> www.cmlsupport.com

> www.upstairswindow.org

>

>

>

>