Re: Echinacea.

[Guest guest]

Hello everybody,

To add to Novartis's recommendation I would like to remind everyone that

Echinacea is an immune stimulant. We and many others would think it would be

a good idea to take this supplement but indeed it is NOT GOOD for any one

with Leukemia.

A dear friend who has CLL and who also use to see the same ONC I do had a

continuous rising of the WBC and for the life of our ONC he could not figure

out why since he looked for every possible reason and found none.

Finally my friend admitted to taking Echinacea and the Dr. explained that it

induces the growth of the WBC and of course this would be very dangerous for

any one trying to rid their blood of them. Especially Leukemia Patients.

With that short story, I urge all of you to always tell your Dr about any

supplements you may be taking or thinking of taking.

Both my Doctors (Primary and Cancer center) ask me to refrain from anything

other than a daily multi vitamin such as Centrum.

M

Message: 23

Date: Tue, 22 Mar 2005 22:29:04 -0000

From: " nettee0 " <elizabeth.constable@...>

Subject: Re: New File (FAQ)

Dear Tracey

You have done such a good job on the FAQ, I can remember asking all

those questions when Rich was diagnosed, well done.

You have mentioned St 's Wort being contra-indicated with

Glivec, but Novartis have also advised not to take Echinacea as

well. Below is an email I received from Novartis when I enquired

about Rich taking Echinacea.

" Thank you for your recent enquiry regarding the combined use of

Glivec® (imatinib) and echinacea. The two products are not

recommended for use together because they are both metabolised by

the liver and it is thought there is the potential for an

interaction to occur " .

This was received from the Medical Information Officer at Novartis.

Sending lots of love and appreciation.

Annette

>

> Hi Everyone,

>

> I just wanted to let everyone know (especially the newbies) that I

> created a CML FAQ and put it in the files section. I'm hoping

that

> it will help answer some of the basic questions that most new

> members have. If anyone has any other questions that they think

> should be added, let me know and I'll be happy to add them.

>

> To go to the file, just click on " files " at the left of the screen

> then click again on CML FAQ.doc.

>

> Take care,

> Tracey

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[Guest guest]

OK, here's my question about the dangers of echinacea. Would the same

hold true for other nutritional supplements and herbs that allegedly

boost the immune system? I already took a range of supplements, but

really started loading up when I got my diagnosis last week. CoQ10?

Green tea? Amino acids, such as L-lysine, L-carnitine? I feel like a

number of these things have helped ease the rough spots of midlife

for me, but this email was a stunner ... better to scrap all immune

boosters?

Birdie

[Guest guest]

Hi Birdie

It was quite a shock to me when I received Novartis' email saying

not to take Echinacea with Glivec, I too thought as a immune booster

supplement it would be good for . I can't answer your

question about the other supplements, but you can go to Novartis'

website and contact them. They are very good, they answer quickly.

Best wishes

Annette

>

> OK, here's my question about the dangers of echinacea. Would the

same

> hold true for other nutritional supplements and herbs that

allegedly

> boost the immune system? I already took a range of supplements,

but

> really started loading up when I got my diagnosis last week.

CoQ10?

> Green tea? Amino acids, such as L-lysine, L-carnitine? I feel like

a

> number of these things have helped ease the rough spots of midlife

> for me, but this email was a stunner ... better to scrap all

immune

> boosters?

>

> Birdie

[Guest guest]

Birdie,

You do need to be very careful with supplements. Many supplements --

even so-called " natural " products -- can affect your blood counts in a

variety of ways. They can affect platelets and blood clotting, your red

and white cells, etc. You should always consult your doctor and do your

own research to see exactly what effects supplements may have. There are

numerous legitimate sites online with this information -- just be sure

you look for an independent Web site, not one run by the supplement.

Look for information affiliated with major medical institutions, for

instance. Not all supplements are bad, but some can do you more harm

than good, especially when you already have a health problem. C.

is the supplement guru.

jennifer g.

=======================================

You can make a difference today in the life of a cancer patient

tomorrow.

Please support the Leukemia Society with your donation:

http://www.cmlsupport.com/seejenrun.htm

=======================================

[ ] Re: Echinacea.

OK, here's my question about the dangers of echinacea. Would the same

hold true for other nutritional supplements and herbs that allegedly

boost the immune system? I already took a range of supplements, but

really started loading up when I got my diagnosis last week. CoQ10?

Green tea? Amino acids, such as L-lysine, L-carnitine? I feel like a

number of these things have helped ease the rough spots of midlife

for me, but this email was a stunner ... better to scrap all immune

boosters?

Birdie

[Guest guest]

At 07:44 AM 3/24/05 -0600, you wrote:

> Not all supplements are bad, but some can do you more harm

>than good, especially when you already have a health problem. C.

>is the supplement guru.

Hi Birdie and list,

I don't have much time for a response....I am packing and heading to

Santa Barbara today......we'll be celebrating my Mom's 85th birthday

(my Dad is 89). When Dr. Druker and I talk about treatment options,

I always remind him if it wasn't for my cml, I have 'longevity genes'.

Most of my supplement recommendations come from the licensed

naturopath that I see......and then often I cross-check that with the

clinical pharmacist at OHSU, to make sure there is no interaction

with Gleevec. I am not really using any immune boosters per say....

but I am doing some things to improve the functioning of the immune

system. Much/most of your immune system stems from the gut, so

it is important that your gut is functioning well. Mainly this means that

you have good bacteria in your gut vs. bad bacteria....and this is

where the alkaline diet helps. The good bacteria wants an alkaline

environment. Gleevec is dumping lots of acid (esp if you take 800mg

like I do) into the system. I also take liver support, a combination

of stuff including milk thistle.

When I return maybe I will write a little more about these topics if

there is some interest. Especially more about diet....which is a

starting point.

C.

[Guest guest]

Oh, a couple other comments that I forgot to make. When I was first

dx and was looking for supplements, I think that when I picked up a

bottle of echinacea, it said right on it 'not for myeloid diseases'...

so I never gave it another thought. I think of this supplement as

something that people use when they want a quick, short term boost to

their immune system....like when they feel they are coming down with

a cold.

A good basic and good book about supplements is The Green Pharmacy by

Duke, PhD, and very qualified. Worked for the US FDA for many

years. He traveled the world looking for 'natural' medicines, used

for centuries...and he has a nice writing style. This is in paperback

and not costly.

C.