Re: CML-ALL

[Guest guest]

Lottie,

Beth might very well have access to an Ariad trial as that trial is

opening world wide and will likely be in England (as Dr. Goldman is on

the steering committee overseeing the trials).

http://www.medicalnewstoday.com/articles/201716.php

When CML progresses to blast phase it can either look like ALL or

AML. Sometimes people go into lymphocytic blast crises and sometimes

myeloid. The disease is still CML and not ALL or AML. It's also

possible to get 2 leukemias. It sounds like we don't really know if

Beth has lymphocytic blast crises of CML or whether she has a second

leukemia (ALL). In either case the Ariad drug (ponatinib) might work

for her as the trial is open to CML blast crises and Ph+ ALL. Beth

should ask her doctors about this trial.

Dorothy

On Nov 5, 2010, at 9:46 PM, Lottie Duthu wrote:

> Dear Leah,

> I hope you understood all of that technical language. I understood

> enough to know I don't know enough. LOL. Someone asked the question

> and I tried to find something

> we could all relate to. I guess if you understand parts of it as I

> did, you know more

> then you knew before. It is interesting, but for our friend, Beth, a

> tragic occurence,

> and as all good soldiers do, we rally the troops. Faith and prayers

> are our weapons.

>

> Our dear friend Len from the Asian group was in blast stage and Dr.

> Talpaz has been taking care of her for years, at lease since I first

> met her. He put her on heavy chemo in & out of the hospital for

> about 2 years and then put her in the Ariad trial. Miracle of

> miracles, she is responding, so I have high hopes for the Ariad

> trial which I hope to be in next week or ASAP.

>

> I do appreciate your message to the group about the article and I

> hope Beth is energized by all the positive messages she is

> receiving. I thought of dear Len

> and how she is responding to Ariad. It would be wonderful if Beth

> had the same

> opportunity. I don't know all the technical details about Len's

> case, but it sounds

> very similiar to Beth's. What would you say, Bobby, you see Len more

> than anyone?

> Is there anything else you can add to this discussion?

>

> In my case, Leah, I am a prime example of chronic late stage CML. I

> was told that when I was only 4 years into CML and it is now over

> 15, so it is possible to stay in chronic late stage for some time

> and not get beyond CHR. Irony of it is I am not a good responder

> to the TKI's we have all come to embrace, but each one has played a

> part in keeping me alive, which is what we hope for Beth, that they

> can change the progression so that she will respond, even if

> temporarily until more concrete plans are in order, remembering that

> they do not have access to the drugs that we have.

>

> It is too bad that an orphan drug status is not applied to every

> nation, if they would accept the data that our researchers have

> accumulated. I believe the Ariad trials will extend around the

> globe. My hope is that all CML patients would have the same access

> to all of the drugs. Even if it was not approved by their national

> health service, the patient could sign a waiver, allowing them to

> receive the drug.

>

> I should backtrack and say that all cancer patients should have

> access to all cancer drugs, whether in a trial or not. Novartis and

> Bristol Byers-Squipp make their drug available to anyone who cannot

> afford the drug - anywhere through GIPAP. I do know in trying to get

> Gleevec for patients in third world countries, I was referred to

> GIPAP. Someone in China answered me and said that they took care of

> their own, but the man I was assisting at the time was only getting

> 100 mg. because he was old. Seems (I was told the way it works) that

> the drugs are sent to the countries and the little provinces have

> their little political clicks and they decide who gets what and how

> much; it is a quagmire like what is happening in Haiti today. Money

> was donated, food is in warehouses blocks away from starving people,

> but the government does not want to put the local merchants out of

> business by giving away food and other necessities. We all feel

> powerless in both instances.

>

> Yes, it is all puzzling, and for Beth's sake, I hope it can be

> resolved soon. She may not

> have been chronic when she was diagnosed, but we are not privvy to

> that part of the little mystery surrounding the issues; namely, what

> does she really have?

> Thank you and God bless,

> Carpe Diem,

> Lottie Duthu

>

>

[Guest guest]

Hi, I would be hard put to explain Len's ups and downs with CML.  for one

thing, this brain of mine does not retain things any longer.  I do know she has

had a rough time with it for several years, last year she had her spleen

removed, she has been in as many trials Lottie as you and I, but finally Ariad

seems to be doing the job.  I saw Len and Ernie the other day, I drove to Ann

Arbor because  she had an appointment with Dr. Talpaz, and it had been a while

since I had seen them.  We had a great dinner together, and Len looked

absolutely fabulous, best I have seen her in years. Bobby

a ( Bobby ) Doyle, dob 12/17/29

DX 5/1995

Interferon 9 weeks/Hydroxyurea 5 years

02/2000 to 06/2002 Gleevec trial, OHSU

06/2002 Gleevec/Trisenox Trial, OHSU

06/2003 Gleevec/Zarnestra Trial, OHSU

04/2004 Sprycel Trial, MDACC, CCR in 10 months

04/2008 XL228 Trial, U of Mich.

01/2009 PCR 5.69

04/2009 Ariad Trial AP24534

09/2009 PCR 0.01

11/2009 PCR 0.034

02/2010 PCRU

#840 Zavie's Zero Club

From: Lottie Duthu <lotajam@...>

Subject: [ ] CML-ALL

" CML " < >

Date: Friday, November 5, 2010, 9:46 PM

 

Dear Leah,

I hope you understood all of that technical language. I understood enough to

know I don't know enough. LOL. Someone asked the question and I tried to find

something

we could all relate to. I guess if you understand parts of it as I did, you

know more

then you knew before. It is interesting, but for our friend, Beth, a tragic

occurence,

and as all good soldiers do, we rally the troops. Faith and prayers are our

weapons.

Our dear friend Len from the Asian group was in blast stage and Dr. Talpaz has

been taking care of her for years, at lease since I first met her. He put her

on heavy chemo in & out of the hospital for about 2 years and then put her in

the Ariad trial. Miracle of miracles, she is responding, so I have high hopes

for the Ariad trial which I hope to be in next week or ASAP.

I do appreciate your message to the group about the article and I hope Beth is

energized by all the positive messages she is receiving. I thought of dear Len

and how she is responding to Ariad. It would be wonderful if Beth had the same

opportunity. I don't know all the technical details about Len's case, but it

sounds

very similiar to Beth's. What would you say, Bobby, you see Len more than

anyone?

Is there anything else you can add to this discussion?

In my case, Leah, I am a prime example of chronic late stage CML. I was told

that when I was only 4 years into CML and it is now over 15, so it is possible

to stay in chronic late stage for some time and not get beyond CHR. Irony of it

is I am not a good responder

to the TKI's we have all come to embrace, but each one has played a part in

keeping me alive, which is what we hope for Beth, that they can change the

progression so that she will respond, even if temporarily until more concrete

plans are in order, remembering that they do not have access to the drugs that

we have.

It is too bad that an orphan drug status is not applied to every nation, if they

would accept the data that our researchers have accumulated. I believe the

Ariad trials will extend around the globe. My hope is that all CML patients

would have the same access to all of the drugs. Even if it was not approved by

their national health service, the patient could sign a waiver, allowing them to

receive the drug.

I should backtrack and say that all cancer patients should have access to all

cancer drugs, whether in a trial or not. Novartis and Bristol Byers-Squipp make

their drug available to anyone who cannot afford the drug - anywhere through

GIPAP. I do know in trying to get Gleevec for patients in third world

countries, I was referred to GIPAP. Someone in China answered me and said that

they took care of their own, but the man I was assisting at the time was only

getting 100 mg. because he was old. Seems (I was told the way it works) that

the drugs are sent to the countries and the little provinces have their little

political clicks and they decide who gets what and how much; it is a quagmire

like what is happening in Haiti today. Money was donated, food is in warehouses

blocks away from starving people, but the government does not want to put the

local merchants out of business by giving away food and other necessities. We

all feel powerless in both

instances.

Yes, it is all puzzling, and for Beth's sake, I hope it can be resolved soon.

She may not

have been chronic when she was diagnosed, but we are not privvy to that part of

the little mystery surrounding the issues; namely, what does she really have?

Thank you and God bless,

Carpe Diem,

Lottie Duthu