Re: Dr. oz....response to Greg

[Guest guest]

I think the biggest thing for me is that during the early conversations

regarding the episode, I was under the impression that it was going to be much

more in depth. Who knows how much incredible stuff ended up on the cutting room

floor.

_________________

Hi Greg,

I think the program was about Dr. Druker and the 'magic pill' and how it is

saving lives!!!! no deeper than that

So it was all true. In my viewing area, they are competing with Dr. Phil and

Ellen DeG....and Dr. Oz is holding his own and his audience loves him. Imagine

making medicine and health fun.

_____________________

> Yes, I am aware that you are now on Tasigna and I have been very interested in

reading your posts and hearing your thoughts on how the drug is working for you.

I would really love to hear your comparison of the three drugs across a

timeline...for example, with you now on Tasigna for 2 months, how has this first

two months compared with the others.

_________________________

About all this, I could write you privately but I will put it out here. I know

you attended the Dr. Shah presentation in Montreal. I have what is called

primary resistance (stubborn cml cells), probably his type 1 (per my fellow

turtle ). My counts never crash, blood work is always stable....just

very slow to eliminate the cml cells.

All this was in drug trials (with Dr. Druker at OHSU):

400mg Gleevec did almost nothing, and I had a skin rash for a year;

800mg Gleevec dropped me to 50% ph+ fairly soon, then slowly over about 5 years

down to 35% ph+ (a major response)

I did get rid of the Gleevec rash doing an alternative treatment called NAET (an

allergy elimination technique).

We were waiting for a second generation drug for me.

The Sprycel trial opened first. I went on 100mg once a day. First 5 mo. had lots

of side effects, then really good for 2.5 years and reached CCR for the first

time at the 3 year make. Then had an episode of pleural effusion and we tinkered

with the dose. Lower dose of 80mg did not lower my pcr.....higher dose of 100mg

gave me more epidoses of PE, and eventually even 80mg did. So needed a new drug.

For the first time I am not in a trial.

I am on Tasigna, 800mg right from the start. Worse thing is a skin rash again

(remember this is a remake of sorts of Gleevec which caused a skin rash). In

early June, we will see how it is affecting my pcr. I don't have NAET available

to me locally now, but may look into my options to find it nearby.

If this rash persists as it is (and I have seen a dermatologist) I would not

look forward to this being my 'forever' drug....but it will serve a stop gap

role for sure if it is killing off the cml cells.

New Ariad trials will start maybe in the Fall and I have heard many good things

about this drug, as I think you did in Montreal. This might be in my future. So,

I think I am a pretty typical stable turtle. Unless I have been off drug, my pcr

has not increased...but off drug (like for effusions) it definitely did...proof

that those " sociopathic " (per Dr. Oz) white cells are ready to rumble. I have

had several mutation tests done just to check.....and there are none. I am 'wild

type' cml.

That's the short synopsis of my 10+ year history of cml with the TKIs. I started

with Dr. Druker in Feb. 2000....he's one of the best!

(Before the TKIs, I had a disastrous experience with triple therapy, inf, HHT

and ara-c for 3 months, and hydrea before that, and contemplating a BMT with a

50% chance of survival in my age bracket, in those earlier days.)

If you get to Portland with your family, or other parts of Oregon, we should do

a raft trip! or lunch.

C.

[Guest guest]

Hi ,

Thanks for sharing, I appreciate you refreshing me on your journey. I, too,

hope the rash resolves. I am glad that these things are working for you. Our

situation was one that involved some rogue CML cells as well.

Now, I want to make sure that I haven't upset up with my stating that I thought

the show was going to be a little more in depth. That has certainly not been my

intent. In your reply, I saw lots of exclamation points. :-) " I think the

program was about Dr. Druker and the 'magic pill' and how it is saving

lives!!!! " Just keep in mind that I spoke directly with the producers, who

happened to call me regarding this show. In our initial discussion, the episode

plan was quite different. I'm sure they filmed all of that, but much was

probably left on the cutting room floor. And, that is to be expected to some

extent. My " disappointment " is for the " what could have been " , NOT to complain

about how the show played out. Just want to make sure we are on the same page

with that. :-)

Hoping to get out your way sometime later in the year. Would love to do

lunch..and hey, a rafting trip would be great as well! I've always enjoyed

doing the Ocoee up in Tennessee and know you've probably got some great spots

our your way.

Look forward to talking more!

G

> I think the biggest thing for me is that during the early conversations

regarding the episode, I was under the impression that it was going to be much

more in depth. Who knows how much incredible stuff ended up on the cutting room

floor.

> _________________

> Hi Greg,

> I think the program was about Dr. Druker and the 'magic pill' and how it is

saving lives!!!! no deeper than that

> So it was all true. In my viewing area, they are competing with Dr. Phil and

Ellen DeG....and Dr. Oz is holding his own and his audience loves him. Imagine

making medicine and health fun.

> _____________________

>

> > Yes, I am aware that you are now on Tasigna and I have been very interested

in reading your posts and hearing your thoughts on how the drug is working for

you. I would really love to hear your comparison of the three drugs across a

timeline...for example, with you now on Tasigna for 2 months, how has this first

two months compared with the others.

> _________________________

>

> About all this, I could write you privately but I will put it out here. I know

you attended the Dr. Shah presentation in Montreal. I have what is called

primary resistance (stubborn cml cells), probably his type 1 (per my fellow

turtle ). My counts never crash, blood work is always stable....just

very slow to eliminate the cml cells.

>

> All this was in drug trials (with Dr. Druker at OHSU):

> 400mg Gleevec did almost nothing, and I had a skin rash for a year;

> 800mg Gleevec dropped me to 50% ph+ fairly soon, then slowly over about 5

years down to 35% ph+ (a major response)

> I did get rid of the Gleevec rash doing an alternative treatment called NAET

(an allergy elimination technique).

>

> We were waiting for a second generation drug for me.

> The Sprycel trial opened first. I went on 100mg once a day. First 5 mo. had

lots of side effects, then really good for 2.5 years and reached CCR for the

first time at the 3 year make. Then had an episode of pleural effusion and we

tinkered with the dose. Lower dose of 80mg did not lower my pcr.....higher dose

of 100mg gave me more epidoses of PE, and eventually even 80mg did. So needed a

new drug.

>

> For the first time I am not in a trial.

> I am on Tasigna, 800mg right from the start. Worse thing is a skin rash again

(remember this is a remake of sorts of Gleevec which caused a skin rash). In

early June, we will see how it is affecting my pcr. I don't have NAET available

to me locally now, but may look into my options to find it nearby.

> If this rash persists as it is (and I have seen a dermatologist) I would not

look forward to this being my 'forever' drug....but it will serve a stop gap

role for sure if it is killing off the cml cells.

>

> New Ariad trials will start maybe in the Fall and I have heard many good

things about this drug, as I think you did in Montreal. This might be in my

future. So, I think I am a pretty typical stable turtle. Unless I have been off

drug, my pcr has not increased...but off drug (like for effusions) it definitely

did...proof that those " sociopathic " (per Dr. Oz) white cells are ready to

rumble. I have had several mutation tests done just to check.....and there are

none. I am 'wild type' cml.

>

> That's the short synopsis of my 10+ year history of cml with the TKIs. I

started with Dr. Druker in Feb. 2000....he's one of the best!

> (Before the TKIs, I had a disastrous experience with triple therapy, inf, HHT

and ara-c for 3 months, and hydrea before that, and contemplating a BMT with a

50% chance of survival in my age bracket, in those earlier days.)

>

> If you get to Portland with your family, or other parts of Oregon, we should

do a raft trip! or lunch.

> C.

>

[Guest guest]

> Now, I want to make sure that I haven't upset up with my stating that I

thought the show was going to be a little more in depth. That has certainly not

been my intent. In your reply, I saw lots of exclamation points. :-) " I think

the program was about Dr. Druker and the 'magic pill' and how it is saving

lives!!!! "

>

> Hoping to get out your way sometime later in the year. Would love to do

lunch..and hey, a rafting trip would be great as well!

__________________________

Hi Greg,

I don't get upset with what other people say.....I just always state my own

opinion. The explanation point was just to emphasize that the drug is saving

lives! it is not a cure, but it was the start at least of saving

hundred/thousands of lives. For the general public, knowing that a drug is

saving lives (for up to 10 cancers) is enough....they don't need all the details

about what the side effects are, etc. I never expected this to be a show about

CML and was actually surprised to see how many people were on stage...but that

emphasized that this drug has affected a lot of lives.

Also, at the end of each Dr. Oz show they say IF you want more information, go

to the website. I did at the library yesterday, there is a big article about the

drug, CML, targeted treatment, etc. I just scanned it and was going to post it

here for all to see. Maybe you want to do that? When you read what is posted on

the website, maybe you will be more satisfied with what the show has

accomplished.

Also, I don't really consider my cml cells to be rogue cells...they are actually

garden variety 'normal' (wild type) cml cells....they are just a bit smarter or

trickier. One theory is that something in my cell pumps the drug out as soon as

it penetrates the cell wall.

Also, I wrote raft trip, which I have done and love....but I was really thinking

a jet boat trip, like out of Portland on the Willamette River.....that's also a

fun ride.

Have a great summer.

As for the rash....I know what is supposed to happen, will happen....that is my

philosophy about life.

your cml friend,

C. (the Maui Turtle)