Re: using steriods to treat liver toxicity WENDY

[Guest guest]

-

If you decide to go to Portland and cant get into see Dr. Druker, I see his

partner Dr. Mauro. We have found him to be VERY educated, compassionate and

top notch with CML including all the clinical trials, new meds and lines of

treatment. He works closely with Dr. Druker. I was originally told (2 years

ago) when I was dx. that Dr. Druker wasn't taking anymore new patients as he

was spending much of his time in the lab on research. I don't know if that

is still the case. OSHU is wonderful and the whole treatment team is the

best. You will be in good hands with either doctor. Much worth the trip. I

fly

up there every 3-6 months, as well as I have my PCR and bone marrows done

there. I have a local oncologist in case I get sick but OSHU runs my regimen.

Hope all works itself out for . Take care of you.

35

CML 5/13/05

Gleevec 800mg PCRU

Wife and mother of 3 (11,8,6)

************************************** See what's free at http://www.aol.com.

[Guest guest]

Thanks much, --I will keep this in mind! is going to call and

get all the information tomorrow. We do live in the states--California, so

we are actually pretty close to Oregon. And, it turns out, OHSU does accept

our insurance-we dont know to what level yet, but is going to check

into all of this tomorrow.

You take care of you, too! Thanks for the info...

Regards,

>From: vegasrnjen@...

>Reply-

>

>Subject: Re: [ ] using steriods to treat liver toxicity WENDY

>Date: Mon, 28 May 2007 02:01:36 EDT

>

>-

>

>If you decide to go to Portland and cant get into see Dr. Druker, I see his

>partner Dr. Mauro. We have found him to be VERY educated, compassionate

>and

>top notch with CML including all the clinical trials, new meds and lines of

>treatment. He works closely with Dr. Druker. I was originally told (2

>years

>ago) when I was dx. that Dr. Druker wasn't taking anymore new patients as

>he

>was spending much of his time in the lab on research. I don't know if

>that

>is still the case. OSHU is wonderful and the whole treatment team is the

>best. You will be in good hands with either doctor. Much worth the trip.

> I fly

>up there every 3-6 months, as well as I have my PCR and bone marrows done

>there. I have a local oncologist in case I get sick but OSHU runs my

>regimen.

>

>Hope all works itself out for . Take care of you.

>

> 35

>CML 5/13/05

>Gleevec 800mg PCRU

>Wife and mother of 3 (11,8,6)

>

>

>

>************************************** See what's free at

>http://www.aol.com.

>

>

>

[Guest guest]

wrote:

We are seriously considering trying to see Dr.

Druker. As I have stated before, we really like and respect 's onc., but

it seems he is slightly " different " than the normal Gleevec patient,

therefore we might try and see about visiting Dr. Druker as Zavie

recommended. Have you seen him?

It sort of seems like having CML in this day and age is sort of all about

" buying time " ...getting the most years you can out of Gleevec, then if you

have to, you have Sprycel as an opton, then if you have to, AMN-107 (though

I know that is not approved as of yet)...and so on...although he really

really wants to try and stay on Gleevec right now. We are hoping his liver

has recovered enough to go back on Gleevec, even if it is at a reduced

doseage.

________________

Hi ,

When you are not 'garden variety' CML and having some issues (like liver

toxicity), I think that is the best reason to see a CML specialist who has

more experience....at least for a consult, but many stay under their care

and see them every 6 months.

I am a long term patient of Dr. Druker and you can't do any better than

seeing one of the OSHU cml specialists....there are 3 (Druker, Mauro and

Deininger). They work as a team and you get the same care from any of them.

I want to dispel the notion that you need to get as much mileage as your

can from Gleevec (the 1st approved drug) before you move onto Sprycel. In

most ways these drugs are interchangeable. Sprycel is more potent and has a

significant side effect of pleural effusion.........so Gleevec is sometimes

thought of as the 'safer drug' but maybe less effective for some people.

But now they know that the pleural effusion is much reduced on the 100mg

dose (vs 140mg) and that the treatment is just as effective....also better

to dose 1x per day. Dr. Druker told me that he can see in the

future....starting all newly dx on Sprycel (to get a quicker response), and

then using Gleevec as a maintenance drug. They are now doing trials using

Sprycel first....and I believe a side by side trial with Gleevec as 1st drug.

When you have a specific complication, like liver toxicity......a

specialist might think that Sprycel is the better drug to use. The folks

that have had to go off Gleevec because of this problem have not developed

it on Sprycel. So, Sprycel seems to spare the liver more.

This is where it is good to see a CML specialist who has lots of experience

with side effects and complications. You local onc is not in a position of

any experience to make these calls. I hope this explanation helps to see

the picture more clearly.

I was on 800mg Gleevec for over 5 years and never got to CCR....so my

reason to switch was for a sub-optimal response. I have a better response

now with Sprycel and also feel better........but Dr. D told me right from

the start that I could always go back to Gleevec (which was working) if I

wanted or needed to. So, these drugs are not a progression....they are just

different drugs and one drug might suit someone better than another.

C.

Druker patient since 2000

[Guest guest]

-

One other thing I wanted to throw out there is, when traveling to get a

" second opinion, " check your insurance transplant and cancer coverage. I have

United health care and even though I wasn't " getting a transplant " they paid

for all of my travel expenses to Oregon for a 2nd opinion. You'd be surprised

what your insurance can cover that most people don't know about until a time

like this. Check into this and I hope you find they help cover the costs.

Best of luck and keep us posted.

35

CML 5/13/05

Gleevec 800mg PCRU

Wife and mother of 3 (11,8,6)

************************************** See what's free at http://www.aol.com.