Re: Mistletoe & Ariad CML trial

September 1, 2010

Hi Lottie and everyone.Â I have failed everything for the past 10 years.Â I am

presently on Ariad, since April of last year.Â I am PCRU, and I have no

significant side effects.Â Any problems I have are most likely due to " old

age " , although, at 80, I hate to admit that!!

I am only on 15 mg a day, and I think the starting dose of phase 2 will be

45mg.Â I would have to say the most difficult thing for me is fasting.Â Eat,

wait 2 hours, take the pill, wait 2 more hours.Â I can't go that long without

eating, so I now have a snack at 10 PM, and take the pill at 12, and go to

sleep.Â Works fine for me. This trial works well for me, I am only 175 miles

from Ann Arbor, the trial is at the U. of Mich, under Dr. Moshe Talpaz.Â So

when I have to be there once a month, it is not a big thing for me to drive up,

see the good doctor, do labs etc. and get back home the same day. I have been

PCRUÂ (I have never been PCRU in 15 years!!) since Feb. and pray every day I

remain there, with no complications.Â Love this drug!!!!

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: [ ] Mistletoe & Ariad CML trial

" CML " < >

Date: Wednesday, September 1, 2010, 4:27 PM

Healing with mistletoe is used in Europe to treat cancer.Â The FDA however does

not approve this treatment because it has not proved its efficacy.Â There are

some websites that are promoting the use of mistletoe and we should remember the

slogan Caveat emptor or buyer beware.Â Just passing this along in case you have

questions about its overall safety.Â Â Â Mistletoe by the way, is a

semiparasitic plant that grows on several types of trees, including apple, oak,

maple, elm, pine, and birch.Â It has also gained usage for other ailments such

as arthritis and infertility. My words.

" Mistletoe is one of the most widely studied complementary and alternative

medicine therapies for cancer. In certain European countries, products made from

European mistletoe are among the most prescribed therapies for cancer patients. "

" Very few bad side effects have been reported from the use of mistletoe extract,

though mistletoe plants and berries are poisonous to humans.Â The U.S. Food and

Drug Administration (FDA) has not approved mistletoe as a treatment for cancer

or any other medical condition.Â The FDA does not allow injectable mistletoe to

be imported, sold, or used except for clinical research. "

http://www.cancer.gov/cancertopics/pdq/cam/mistletoe/Patient/allpages/print

FYI,

Lottie Duthu

" Enlighten the people generally, and tyranny and oppressions of body

and mind will vanish like evil spirits at the dawn of the day. "

by: Jefferson

_______________________________

The initial findings from this study show AP24534 to be well-tolerated and to

produce beneficial anti-leukemia activity in patients who have failed prior

tyrosine kinase inhibitor therapy for CML,â€ stated Cortes, M.D.,

professor and deputy chair, Department of Leukemia, M.D. Cancer Center

and the studyâ€™s principal investigator. â€œPending further clinical trials,

AP24534 appears to represent a potential significant advance for CML patients

who have become resistant or refractory to currently available therapies and who

are in great need of new treatment options.â€

http://www.news-medical.net/news/20091208/Positive-data-from-ARIAD-Pharmaceutica\

ls-ongoing-AP24534-study-in-advanced-hematological-cancer-patients.aspx

We have several members who are in this trial.Â Perhaps you would like to share

your own experience, positive and negative.Â This is the trial I am waiting

for, but I have the opportunity to get into the DCC 2036 trial and need to make

a decision.Â I know other members would be interested to know as well.

Thanx,

Lottie Duthu

Â Â Â Â

September 1, 2010

Hi everyone,

First of all, let me say that Bobby and Lottie are amazing and both of them have

been incredibly supportive during my journey with CML. I've been quiet for

awhile, but figured this was the perfect thread for an update!

After nine months on Gleevec, I was found to have the T315i mutation. Through a

series of wonderful events, I ended up in the Ariad trial (UCSF site; Dr. Shah

is my doctor ) starting at the 30mg dose. I had a wonderful response, and was

undetectable on FISH and cytogenics and " faintly positive " by PCR within 6

months. Unfortunately, at 9 months, I showed an increase in my PCR (not a lot,

but enough for my doctor to take notice). We took another PCR by peripheral

blood and waited a month--another small bump. As a result, I was moved up to

45mg--the dose they are starting the Phase II trial at. Unfortunately for me, I

developed a severe rash over half my body--it was ugly and burned like hell! lol

This earned me a two week drug holiday and a re-start at 30mg. My last BMB

showed a small increase in FISH (2/300) and PCR-- I'm now at .031; my cy

togenics are still undetectable. I attribute this bump to the drug holiday and

we are waiting to see what happens inÂ three months. Throughout all of this

excitement , my CBCs have been absolutely, rock- solid normal.

All of the above being said, I must say I love this drug! I feel mostly normal

all the time (I do get some fatigue and dry skin, which I can easily manage). I

have sorted out the eating thing, so I eat an early breakfast, take my pills two

hours later, and then I'm about ready for lunch two hours after that. I can't

say enough good about it! It is so much easier on me than Gleevec ever was. If

someone is facing the need to enter a drug trial for whatever reason, I have no

hesitation in recommending it.

Knowing many of you haveÂ lived with a low disease burden for years and years

gives me comfort. According to my doc, my numbers are so small that I shouldn't

be worried. I was a little freaked out last week by my last BMB results, but

then decided that I have done everything I can to treat my disease, I feel well

now and I'd rather live and enjoy life now than be worried and fearful for the

next three months. If my disease gets cranky and works around the drug, I'll

deal with it then, but I don't believe that will happen and I want to enjoy

today.

Sorry for the novel, but it seems like a few of us on the list are facing some

uncertainty in their treatment and I was wayyy overdue for an update. (For

background--I was diagnosed in June 2008, mutation discovered Feb. 09; been on

Ariad since June 2009)

Hugs to my fellow CML-warriors!

BethG (from California vs. the new Beth from the UK) :-)

Re: [ ] Mistletoe & Ariad CML trial

Â