Re: Garlic/IM and IM holidays/CML VAX - and everyone

[Guest guest]

Hello ,

I hope to be fully energized enough to post some iformation to the

www.cmlsociety.org site on PCR testing that was presented this

weekend to us by Suzanne Kamel-Reid, PhD at the Banting Institute in

Toronto, Ontario. She is a very energetic lady, and I toroughly

enjoyed meeting her. Importantly, we should all consider ourselves

lucky, as she is the person in charge of coordinating the PCR

standardization testing in NORTH AMERICA. Yes, you read that

right. Her lab is coordinating with the more prominent labs across

Canada and the US to help improve PCR testing. As you can imagine

it is not an easy task. She showed us the results of round two and

three and we should all be relieved to know that slowly but surely

the labs involved are improving in their technique and ability to

increase the level of sensitivity while making sure it is

reproducable; this is a very key element and one that is not always

so obvious. So stay tuned, because I will have some thoughts on

your PCR " wobbler " status.

As far as holidays form IM goes, we all know we are not supposed to

do it. So, I am not going to advocate it. Like you I have taken

breaks much to the chagrin of my doctor. This is the reality we

live with. We clearly need more information like blood serum

levels, etc, if we are to unerstand why we have such side effects at

times. That being said, it was interesting that you noticed an

improvement in your PCR after taking a " holiday " . What if anything

does you doc care to philosophize about with regards to the break

and the improved PCR results?

FYI, I have read that it takes about 7 - 10 days for Gleevec to be

eliminated from your system. Mini-breaks are probably not a good

idea on a regular basis, because the only thing you accomplish is

lowering the overall blood serum level of IM, which is probably not

a good thing as you could be at a sub optimal level and, much like

antibiotics, if it is " under dosed " then you could " potentially " be

teaching your body to build a resistance to it. This is some of the

theory out there anyway. This is also a good reason why we really

shouldn't split our doses if we are on 400mg dosing. As for the

higher doses, I have heard that some people split them, and others

do not. The usual practice is 400mg in the morning and 400mg at

night. But, who knows.

Peace, Love and all good things to you.

Cheryl-Anne

>

> Hi Group!

>

> I'm terribly behind in posting, but I do follow this site as well

as

> Jerry's site regularly. As always, I wish all of you well in your

> chosen treatments.

>

> My personal situation is that I am a PCR " wobbler. " I have been on

> Gleevec 400mg since 4-01, reaching CCR in 12-01. My first PCRU

report

> occured in 2-03, and I've been going in and out of PCRU status for

the

> last two years. I have never been PCRU at MDACC, only at COH. My

last

> RT-PCR at MDACC was my best in a while, .08. I am seriously

> considering the CML VAX trials. I qualify for both arms, as I am

both

> a2 and a3.

>

> I'm happy to hear the experiences of any of you who are in that

trial.

>

> I've just read C.'s posts on mixing natural medicines and

cancer

> therapy based on a series on lectures given by Dr. Bubalo, the

> oncology pharmacist at OHSU. This note about garlic was

interesting:

>

> Dr. Bubalo, #2

>

> Drug Interactions

> * cause reduction of chemotherapeutic effects........

> St. 's Wort, garlic, gingko, grape seed, Kava, nutmeg,

quercitin

> (partial list)

>

> *chemotherapy drugs affected............

> includes Gleevec, Taxol, Tamoxifen

>

>

> , is Dr. B. talking about large quantities of garlic taken as

a

> supplement? Or quantities of garlic used as natural ingredients in

> food? I love garlic, but now I'm wondering whether I should cut

back

> on it.

>

> Also, not long ago I was so sick from edema and other side effects,

> just feeling so " toxic " , that I took a week-long break from

Gleevec.

> It was my longest break from the drug in the nearly five years

that I

> have been taking it. After several days, I felt great. Of course,

my

> oncologist was horrified about it. But the next PCR I had after the

> break found no disease detectable. So who knows? Personally, I

don't

> think my disease is stable enough at lower levels to justify

playing

> around with my dose. I do believe that the longer I have been on

drug,

> the better my overall health has been. So, despite the sometimes

> uncomfortable side-effects, I'm okay with Gleevec, although I hope

> that someday I will not need any drugs. I continue to hope that we

> will all have access to more perfectly tailored, non-toxic

treatments

> for our disease.

>

> Wishing you all peace, love and light.

>

> L.

>