Re: Scared and confused.....

[Guest guest]

Hi Cam and Coralee,

I'm sorry I've scared you but I do want you to get the best care you

can and frankly, I don't believe that you've gotten that from the

doctor you are seeing now.

You're the patient but yet it's been you that has had to educate your

doctor about the use of blood cell boosters and how to go about

getting them. This is unacceptable. You didn't go to years of

medical school and you shouldn't have to tell the doctor how to do

his job.

From what I can see, Cam does not have " run of the mill " CML, meaning

his case does appear to be more complicated since he seems to have

very severe myelosuppression in all three cell lines. This is all

the more reason that he needs a competent and experienced doctor.

Did you ever ask your doctor about the possibility of Cam having MDS

(myelodysplastic syndrome)? I'm asking because he has such a very

low red count, not to mention all his other counts.

I don't know where in Alberta you are and I don't know of any

specific doctors in Alberta but I would expect there to be doctors

who are experienced with CML at any of the big teaching hospitals.

I did a quick search in the ASH abstracts and PubMed for doctors that

have authored research papers out of Alberta to get some names for

you. I don't know them from Adam but generally speaking, any doctor

who is going to author a paper which is presented at ASH, has to be a

competent and renowned doctor.

Here is one that I found although she appears to be a transplant

specialist:

http://www.departmentofmedicine.ualberta.ca/research/researcher_janows

ka.htm

and here is one of the papers that she was involved in:

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?

cmd=Retrieve & db=PubMed & list_uids=12040448 & dopt=Abstract

If the links don't work, just copy and paste them in your browser.

It seems that the more I searched, the more often I saw the

University of Alberta and the Cross Cancer Institute come up.

As for the price of Neupogen, I don't understand how you can be

expected to pay for it yourself. I don't know how it works in

Alberta but here in Ontario, there is a provincial program that

assists patients who have enormous drug costs as does Quebec so I can

only hope that Alberta has such a program. I encourage you to

contact the Canadian Cancer Society to find out any information you

can (www.cancer.ca)

I hope you are able to get a competent doctor soon.

Tracey

>

> Hello,

>

> I am posting on behalf of my husband, Cam who has been part of the

group for a few

> months. We read all the posts together faithfully. He is feeling

really awful today so I

> thought I would send a post.

>

> I am really panicking about the way his treatment is going. We have

a doctor that we go to

> that is in a small city near our home town. He is a hematologist my

I am not too sure he

> knows a ton about cml. We are thinking about switching doctors,

especially in light of all

> the recent posts, but are unsure who to go to. We live in Alberta,

Canada. How do we find

> out who is in the know concerning this disease? Can we see a doctor

in another province

> without it costing and arm and a leg? Tracey's post did scare me

because that's what could

> be happening to my husband right now. I just have visions of his

PCR coming back stating

> blast crisis.

>

> I know Cam mentioned before that our Neupogen shots are not

covered, so we stopped

> them to see if his counts could hold on their own. They are

slippiing again, so here goes

> another $2000. Now his hemoglobin is in dangerous territory (7.3)

and he is getting a

> transfusion today.

>

> How do we know if he is getting bad care or if he is just an

abnormal case?

>

> Coralee

> Wife of Cam

> DX June 2006

>

[Guest guest]

If I felt like my DR didn't know alot about CML I would look into finding one

that did. You can check with a cancer center and get list of Dr's in your area.

I believe that if you are not comfortable with your Dr or if you feel he is

limited in his ability to treat CML then you need to find someone you trust.

The fact of the matter is it's your (your loved ones) life we are talking

about and I would find the VERY BEST Dr within my means. Good Luck to you.

Cam <coralee.williams@...> wrote:

Hello,

I am posting on behalf of my husband, Cam who has been part of the group for a

few

months. We read all the posts together faithfully. He is feeling really awful

today so I

thought I would send a post.

I am really panicking about the way his treatment is going. We have a doctor

that we go to

that is in a small city near our home town. He is a hematologist my I am not

too sure he

knows a ton about cml. We are thinking about switching doctors, especially in

light of all

the recent posts, but are unsure who to go to. We live in Alberta, Canada. How

do we find

out who is in the know concerning this disease? Can we see a doctor in another

province

without it costing and arm and a leg? Tracey's post did scare me because

that's what could

be happening to my husband right now. I just have visions of his PCR coming

back stating

blast crisis.

I know Cam mentioned before that our Neupogen shots are not covered, so we

stopped

them to see if his counts could hold on their own. They are slippiing again,

so here goes

another $2000. Now his hemoglobin is in dangerous territory (7.3) and he is

getting a

transfusion today.

How do we know if he is getting bad care or if he is just an abnormal case?

Coralee

Wife of Cam

DX June 2006

~Stacey Thacker~

---------------------------------

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[Guest guest]

Hi Cam and Coralee,

I'm not sure if you've seen this but here is a link to a website

about the Alberta Cancer Board:

http://www.cancerboard.ab.ca/patient/patient_online.html

It looks like the Outpatient Cancer Drug Benefit Program may pay for

Gleevec (Imatinib) if it is prescribed by certain doctors. The

doctors' names are listed in the above PDF (search for Imatinib) so

hopefully you can find one who is experienced in treating CML and who

is close to where you live in Alberta.

I'm not sure if Neupogen is covered but if you go to the Tom Baker

Cancer Centre in Calgary or the Cross Cancer Institute in Edmonton,

there are social workers who should be able to help answer your

questions about getting financial assistance.

Hope this information helps. Good luck and I hope you are both

feeling better soon.

[Guest guest]

,

Thanks for your concern. We have contacted the Alberta Cancer board

and have been in touch with their social workers. Neupogen is not on

their approved drug list for myeloid cancers and so they said they

could not help me. We contacted the manufacturer of Neupogen as they

sometimes will give their drug for compassionate reasons. We fit the

criteria financially, but not medically. Again they won't give it for

myeloid cancers. My doctor is trying to appeal their decision and

hopefully build a stronger case for me. The cancer board does pay for

my Gleevec, if I can get back on it.

Cam

On Jan 18, 2007, at 10:01 PM, wrote:

> Hi Cam and Coralee,

>

> I'm not sure if you've seen this but here is a link to a website

> about the Alberta Cancer Board:

>

> http://www.cancerboard.ab.ca/patient/patient_online.html

>

> It looks like the Outpatient Cancer Drug Benefit Program may pay for

> Gleevec (Imatinib) if it is prescribed by certain doctors. The

> doctors' names are listed in the above PDF (search for Imatinib) so

> hopefully you can find one who is experienced in treating CML and who

> is close to where you live in Alberta.

>

> I'm not sure if Neupogen is covered but if you go to the Tom Baker

> Cancer Centre in Calgary or the Cross Cancer Institute in Edmonton,

> there are social workers who should be able to help answer your

> questions about getting financial assistance.

>

> Hope this information helps. Good luck and I hope you are both

> feeling better soon.

>

>

>

>

>

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