Re: please refer me to the latest cancer research study

[Guest guest]

>

> Greetings. I am brand new to this group. My allergist yesterday

> recommended that I participate in a new Xolair research study. It

> focuses on whether the drug allows Advair 500mg patients, such as

> myself, to stop using steroid inhalants.

>

> I have tremendous respect for my allergist. She is connected with

> s Hopkins Medical Center, and was the first one who diagnosed and

> properly treated my lifelong asthma (which had been repeatedly

> misdiagnosed, from infancy, as chronic bronchitis).

>

> But I am leery of the newness of this drug, along with the

> anaphylactic and cancer cases that have prompted the FDA black box

> warnings.

>

> My allergist gave me a detailed analysis of the research on those

> problems so far. She thinks both side effects have been exaggerated.

> She said two-thirds of the cancer cases appeared to be pre-existing

> conditions in Xolair patients.

>

> Where are the best sources of information online about ongoing,

> objective research results on Xolair? I want to make as informed a

> decision as I can, and wouldn't dare trust the pharmaceutical

> companies' brochures.

>

> Also, it sounds like many of those participating in this group have

> more severe asthma than I do. Mine is under control most of the year,

> except for the fall, when my system is always overwhelmed by molds. I

> currently take Advair, Singulair, and use a MaxAir inhaler a couple

> of times a day during the fall season. I often end up on short,

> intense does of Prednisone in the fall, when the congestion causes

> severe asthma, bronchitis and/or sinus infections.

>

> By contrast, many of you sound like you've been living on Prednisone

> (I love that " evil candy " nickname)on a regular basis. I've been on

> Prednisone frequently over the past 10 years, but only during certain

> high pollen periods (fall, and sometimes the spring).

>

> I can see wanting to get off the evil candy, if you've been forced to

> take it regularly. I can't sleep on the stuff! But I usually am cured

> with one or two 60mg tapers of prednisone. I've never had to take it

> for months or years at a time.

>

> My question is: Do I have severe enough asthma to warrant

> participating in this Xolair trial? I also risk getting the placebo,

> which would be good for science, but not for me.

> cheers, Lin

>

Welcome Lin,

You have found the right place for friendship and support. I am going

through the same thing right now for another ailment. My doctor is

encouraging me to do the study but I am still debating if I should be

a part of it or not. Note: I am not mentioning this ailment because

this is a Xolair/Asthma group. If anyone would like to know, please

email me.

These would be the initial trials so I would be one of the first to

try it out and that concerns me greatly. So far, there is nothing on

the web about these trials. I have a choice of going through them to

get relief or having painful surgery.

I agree with your doctor. I personally believe that all this reaction

stuff is just a bunch of hype. As for the cancer, I was told by

several medical professionals that everyone that came out of the

xolair trials had to report ALL ailments they had afterwards. The

people with cancer ALREADY WERE DEVELOPING IT before they started

Xolair but it still HAD to be reported.

I am NOT a doctor, just a severe asthmatic on my 5th year of Xolair.

Here is my personal opinion:

If reactions are a serious concern then, why aren't we required to

have epi pens and wait 2 hours after a regular allergy or penecillin

shot? These have caused FAR more reactions than xolair in the past 4

years since xolair came out on the market.

I had a BAD reaction as a kid to a regular allergy shot. Why am I not

required to bring my epi pen to that injection?

My doctor's office has 15 xolair patients. NONE of us have had any

reactions whatsoever but in the same period of time, they have had at

least 25 reactions to regular allergy shots.

Here is my advice as another patient: Trust your doctor. It is your

right to get 2nd opinion. It's your health and you need as much info

as you can before you take a trial plunge.

As for me, I am going to call another doctor and get another opinion

about my other illness. I don't want surgery but I also want some

relief from this condition.

Once again WELCOME )))

Doug

Group founder

Started 5th year of Xoliar

treatment last month )

[Guest guest]

Welcome, Lin:

My doctor also feels like the reports of anaphylaxis have been

overemphasized and all the info I have on the cancer reports jives

with Doug's info, although we've known each other so long now our

info is probably from the same sources.

I think your doctor is probably recommending you for the study as

much for trying to get you out of the regular steroid use as to help

you improve and maintain your asthma outcomes. Even a couple or

three courses of pred a year over time can be enough to do some

serious damage to your system, esp. if you maintain a fairly high

dose of inhaled ICS on a daily basis.

Just my two cents

Addy

Group co-owner

On Xolair four years this month

--- In , " linmill225 " <linmill225@...>

wrote:

>

> Greetings. I am brand new to this group. My allergist yesterday

> recommended that I participate in a new Xolair research study. It

> focuses on whether the drug allows Advair 500mg patients, such as

> myself, to stop using steroid inhalants.

>

> I have tremendous respect for my allergist. She is connected with

> s Hopkins Medical Center, and was the first one who diagnosed

and

> properly treated my lifelong asthma (which had been repeatedly

> misdiagnosed, from infancy, as chronic bronchitis).

>

> But I am leery of the newness of this drug, along with the

> anaphylactic and cancer cases that have prompted the FDA black box

> warnings.

>

> My allergist gave me a detailed analysis of the research on those

> problems so far. She thinks both side effects have been

exaggerated.

> She said two-thirds of the cancer cases appeared to be pre-existing

> conditions in Xolair patients.

>

> Where are the best sources of information online about ongoing,

> objective research results on Xolair? I want to make as informed a

> decision as I can, and wouldn't dare trust the pharmaceutical

> companies' brochures.

>

> Also, it sounds like many of those participating in this group have

> more severe asthma than I do. Mine is under control most of the

year,

> except for the fall, when my system is always overwhelmed by molds.

I

> currently take Advair, Singulair, and use a MaxAir inhaler a couple

> of times a day during the fall season. I often end up on short,

> intense does of Prednisone in the fall, when the congestion causes

> severe asthma, bronchitis and/or sinus infections.

>

> By contrast, many of you sound like you've been living on

Prednisone

> (I love that " evil candy " nickname)on a regular basis. I've been on

> Prednisone frequently over the past 10 years, but only during

certain

> high pollen periods (fall, and sometimes the spring).

>

> I can see wanting to get off the evil candy, if you've been forced

to

> take it regularly. I can't sleep on the stuff! But I usually am

cured

> with one or two 60mg tapers of prednisone. I've never had to take

it

> for months or years at a time.

>

> My question is: Do I have severe enough asthma to warrant

> participating in this Xolair trial? I also risk getting the

placebo,

> which would be good for science, but not for me.

> cheers, Lin

>

[Guest guest]

Given the 30% placebo effect, even the placebo might

have some positive effect!!! In my humble opinion, any

drug that costs as much as xolair does might warrant

being restricted to the more severe cases. You only

need your rescue a couple of times a day in the fall?

Otherwise you don't need it? Does that warrant a drug

taken by injection every two weeks or every month that

will cost your insurer (and you with the co-pays

etc..) thousands? These are just some things to

consider. The risk of anphylaxis is not greater than

for penicillin. As for cancer, you doc is right. Those

pts had long-growing tumors before they started on

xolair.

In the end, it is a decision everyone needs to make

for themselves with their doctors recommendations.

who is on pred non-stop since 2003 and uses ventolin

many times a day every day (even with 2+ years of

xolair in me)

--- linmill225 <linmill225@...> wrote:

> Greetings. I am brand new to this group. My

> allergist yesterday

> recommended that I participate in a new Xolair

> research study. It

> focuses on whether the drug allows Advair 500mg

> patients, such as

> myself, to stop using steroid inhalants.

>

> I have tremendous respect for my allergist. She is

> connected with

> s Hopkins Medical Center, and was the first one

> who diagnosed and

> properly treated my lifelong asthma (which had been

> repeatedly

> misdiagnosed, from infancy, as chronic bronchitis).

>

> But I am leery of the newness of this drug, along

> with the

> anaphylactic and cancer cases that have prompted the

> FDA black box

> warnings.

>

> My allergist gave me a detailed analysis of the

> research on those

> problems so far. She thinks both side effects have

> been exaggerated.

> She said two-thirds of the cancer cases appeared to

> be pre-existing

> conditions in Xolair patients.

>

> Where are the best sources of information online

> about ongoing,

> objective research results on Xolair? I want to make

> as informed a

> decision as I can, and wouldn't dare trust the

> pharmaceutical

> companies' brochures.

>

> Also, it sounds like many of those participating in

> this group have

> more severe asthma than I do. Mine is under control

> most of the year,

> except for the fall, when my system is always

> overwhelmed by molds. I

> currently take Advair, Singulair, and use a MaxAir

> inhaler a couple

> of times a day during the fall season. I often end

> up on short,

> intense does of Prednisone in the fall, when the

> congestion causes

> severe asthma, bronchitis and/or sinus infections.

>

> By contrast, many of you sound like you've been

> living on Prednisone

> (I love that " evil candy " nickname)on a regular

> basis. I've been on

> Prednisone frequently over the past 10 years, but

> only during certain

> high pollen periods (fall, and sometimes the

> spring).

>

> I can see wanting to get off the evil candy, if

> you've been forced to

> take it regularly. I can't sleep on the stuff! But I

> usually am cured

> with one or two 60mg tapers of prednisone. I've

> never had to take it

> for months or years at a time.

>

> My question is: Do I have severe enough asthma to

> warrant

> participating in this Xolair trial? I also risk

> getting the placebo,

> which would be good for science, but not for me.

> cheers, Lin

>

>

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