Re: Do we have access to Sprycel in Canada?

[Guest guest]

Hi Cam,

I'm sure you'll get more answers but from what I understand, Sprycel

can cause just as much myelosupression as Gleevec and sometimes more

so since it's so much more potent.

It's not available in Canada as an approved drug yet but I'm hoping

that will change soon since it's been available in the US for some

time now.

I don't believe any of the clinical trials are still recruiting

because they expect the drug to be approved very soon but I could be

wrong. Certainly, your doctor should know this.

I know I've said this before but your case is not a " run of the mill "

case and you really should be seeing someone who is very experienced

in CML. I hope you can find someone soon.

Take care,

Tracey

>

> Hello everyone,

>

> After giving it a final shot it appears I have failed Gleevec. My

blood counts refuse to stay

> above required thresholds. I need to have a plan B which

preferrably is not a bone marrow

> transplant. Is Sprycel availiable in Canada or is it only in

clinical trial? Would I most likely have

> the same problem on sprycel or does it bind differently than

Gleevec does? If it is only in

> clinical trial does anyone know a trial that is recruiting?

>

> Cam

>

[Guest guest]

I am sure there is a trial for AMN107 Nilotinib

I have been on it for a few months. and they were

looking for candidates from my area but not sure about

the rest of Canada. It is still in trials so I am

told and will be for some time same as Sprycel in

Canada ... Ask your Doctor I was approached by my doc

to go on Nilotinib..

SkipD

--- Tracey <traceyincanada@...> wrote:

> Hi Cam,

>

> I'm sure you'll get more answers but from what I

> understand, Sprycel

> can cause just as much myelosupression as Gleevec

> and sometimes more

> so since it's so much more potent.

>

> It's not available in Canada as an approved drug yet

> but I'm hoping

> that will change soon since it's been available in

> the US for some

> time now.

>

> I don't believe any of the clinical trials are still

> recruiting

> because they expect the drug to be approved very

> soon but I could be

> wrong. Certainly, your doctor should know this.

>

> I know I've said this before but your case is not a

> " run of the mill "

> case and you really should be seeing someone who is

> very experienced

> in CML. I hope you can find someone soon.

>

> Take care,

> Tracey

>

>

> >

> > Hello everyone,

> >

> > After giving it a final shot it appears I have

> failed Gleevec. My

> blood counts refuse to stay

> > above required thresholds. I need to have a plan

> B which

> preferrably is not a bone marrow

> > transplant. Is Sprycel availiable in Canada or is

> it only in

> clinical trial? Would I most likely have

> > the same problem on sprycel or does it bind

> differently than

> Gleevec does? If it is only in

> > clinical trial does anyone know a trial that is

> recruiting?

> >

> > Cam

> >

>

>

>

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[Guest guest]

Hi Cam,

I still go back to my original suggestion for you.

You need to be seen and treated by a CML specialist.

Any and all of the questions that you have been asking on this list should

be answered by your doctor. The longer you wait, the worse your outcome will

be.

Zavie

Zavie (age 68)

67 Shoreham Avenue

Ottawa, Canada, dxd AUG/99

INF OCT/99 to FEB/00, CHF

No meds FEB/00 to JAN/01

Gleevec since MAR/27/01 (400 mg)

CCR SEP/01. #102 in Zero Club

PCRU 5/02 at RVH

2.8 log reduction Sep/05

3.0 log reduction Jan/06

e-mail: zmiller@...

Tel: 613-726-1117

Fax: 309-296-0807

Cell: 613-202-0204

ID: zaviem

[ ] Do we have access to Sprycel in Canada?

Hello everyone,

After giving it a final shot it appears I have failed Gleevec. My blood

counts refuse to stay

above required thresholds. I need to have a plan B which preferrably is not

a bone marrow

transplant. Is Sprycel availiable in Canada or is it only in clinical trial?

Would I most likely have

the same problem on sprycel or does it bind differently than Gleevec does?

If it is only in

clinical trial does anyone know a trial that is recruiting?

Cam

[Guest guest]

Hi Cam,

I spoke with the dr about this last week and apparently sprycel

(dasatinib) is about to be approved...like I mean within the next few

weeks or so. From the post ASH info the results are great for those

who failed gleevec so I think it would be a great next step.

shalyn

>

>

" Catch on fire with enthusiasm and people will come for miles to watch you

burn. " - Wesley

[Guest guest]

Wow, nothing like making someone feel like they have totally screwed

up Zavie! Maybe if you knew the situation(that they are in a very

small town and don't have access to a specialist at this point you

would be more understanding!)Yes obviously you cannot wait

indefinetly to see someone or change your treatment but making

someone feel that they are going to get worse isn't fair or

beneficial to anyone going through this.Just my opinion-maybe be a

little more compassion for the situation is in order, not judgement.

>

> Hi Cam,

>

> I still go back to my original suggestion for you.

>

> You need to be seen and treated by a CML specialist.

>

> Any and all of the questions that you have been asking on this list

should

> be answered by your doctor. The longer you wait, the worse your

outcome will

> be.

>

> Zavie

>

>

> Zavie (age 68)

> 67 Shoreham Avenue

> Ottawa, Canada, dxd AUG/99

> INF OCT/99 to FEB/00, CHF

> No meds FEB/00 to JAN/01

> Gleevec since MAR/27/01 (400 mg)

> CCR SEP/01. #102 in Zero Club

> PCRU 5/02 at RVH

> 2.8 log reduction Sep/05

> 3.0 log reduction Jan/06

> e-mail: zmiller@...

> Tel: 613-726-1117

> Fax: 309-296-0807

> Cell: 613-202-0204

> ID: zaviem

>

>

> [ ] Do we have access to Sprycel in Canada?

>

> Hello everyone,

>

> After giving it a final shot it appears I have failed Gleevec. My

blood

> counts refuse to stay

> above required thresholds. I need to have a plan B which

preferrably is not

> a bone marrow

> transplant. Is Sprycel availiable in Canada or is it only in

clinical trial?

> Would I most likely have

> the same problem on sprycel or does it bind differently than

Gleevec does?

> If it is only in

> clinical trial does anyone know a trial that is recruiting?

>

> Cam

>

>

>

>

>

[Guest guest]

Hi Cam and Coralee

Sorry to hear that the Gleevec ultimately didn't work for you. Just

remember that many of us have had to try 2 or 3 different meds before

we found the one that worked for us. Unfortunately we all react

differently, and that is very frustrating, when what works so well

for someone else doesn't have the same effect for you. Although i

didn't have the same problems that you are experiencing, I am on my

3rd drug-Interferon which for me right now is working well. Keep all

your options open(I thought Trevor said that Dr. L mentioned bone

marrow as a good option?)-although I realize this is a big step which

requires a lot of research and soul searching, As for the Sprycel, I

was on it for 8 months, and had very good resultws-3.9 log reduction-

just couldn't tolerate the side effects. This may be the way to go

for you-If you want to know more about Sprycel(from my experience-or

just have questions) send me an email -you should have it from the

CML meeting. I hope you are both hanging in there-its not an easy

path we have to take

Take Care\

ne

>

> Hello everyone,

>

> After giving it a final shot it appears I have failed Gleevec. My

blood counts refuse to stay

> above required thresholds. I need to have a plan B which

preferrably is not a bone marrow

> transplant. Is Sprycel availiable in Canada or is it only in

clinical trial? Would I most likely have

> the same problem on sprycel or does it bind differently than

Gleevec does? If it is only in

> clinical trial does anyone know a trial that is recruiting?

>

> Cam

>

[Guest guest]

Dear Suzanne,

I have tried in my normal gentle approach to offer my take on his situation.

I also provided him with Druker's paper so that he can see what is required.

It is clear that Cam is not receiving proper treatment for his CML and needs

someone who is experienced in these matters. This time I got tough because I

am concerned for him and worry for his wife and his family.

For me, it is very clear that he doesn't have the run of the mill CML. He

must have someone who is experienced in dealing with CML. He continues to

ask this list for advice, and I keep giving my best advice. He still hasn't

consulted with a CML specialist.

He was in Montreal where he had access to two of the top CML specialists in

Canada. We haven't heard what their opinion was in his case or even if he

spoke to them about it.

I'm sorry that I am so harsh. I am not judging him. I am pleading for him to

take action.

Zavie

[ ] Do we have access to Sprycel in Canada?

>

> Hello everyone,

>

> After giving it a final shot it appears I have failed Gleevec. My

blood

> counts refuse to stay

> above required thresholds. I need to have a plan B which

preferrably is not

> a bone marrow

> transplant. Is Sprycel availiable in Canada or is it only in

clinical trial?

> Would I most likely have

> the same problem on sprycel or does it bind differently than

Gleevec does?

> If it is only in

> clinical trial does anyone know a trial that is recruiting?

>

> Cam

>

>

>

>

>

[Guest guest]

Zavie

I too was in Montreal with Cam and his wife. We are all part of the

CML Society of Canada. There were 2 doctors present at our meeting-

this was not an appointment to get consultations with oncologists!

Of course the Dr's there were gracious enough to offer their opinions

I believe. Whether or not these opinions are considered are none of

any of our business-so when you say, we have not heard what their

opinion was or whether or not he even talked to them should be

irrelevant to you and everyone else. It is not their responsibility

to report to any of us about medical issues unless they choose to let

us in on what is happenening in their situation. If someone asks for

help, we offer what we can. Trust me when I say that these 2 people

are doing all they CAN with what they have at this point in time. I

just found the tone of your message very harsh.

I apologize Cam and Coralee for speaking on your behalf. I hope I

have not offended you-it is frustrating to me to hear someone talk

about another person when they do not have all the facts.

ne

> >

> > Hi Cam,

> >

> > I still go back to my original suggestion for you.

> >

> > You need to be seen and treated by a CML specialist.

> >

> > Any and all of the questions that you have been asking on this

list

> should

> > be answered by your doctor. The longer you wait, the worse your

> outcome will

> > be.

> >

> > Zavie

> >

> >

> > Zavie (age 68)

> > 67 Shoreham Avenue

> > Ottawa, Canada, dxd AUG/99

> > INF OCT/99 to FEB/00, CHF

> > No meds FEB/00 to JAN/01

> > Gleevec since MAR/27/01 (400 mg)

> > CCR SEP/01. #102 in Zero Club

> > PCRU 5/02 at RVH

> > 2.8 log reduction Sep/05

> > 3.0 log reduction Jan/06

> > e-mail: zmiller@

> > Tel: 613-726-1117

> > Fax: 309-296-0807

> > Cell: 613-202-0204

> > ID: zaviem

> >

> >

> > [ ] Do we have access to Sprycel in Canada?

> >

> > Hello everyone,

> >

> > After giving it a final shot it appears I have failed Gleevec. My

> blood

> > counts refuse to stay

> > above required thresholds. I need to have a plan B which

> preferrably is not

> > a bone marrow

> > transplant. Is Sprycel availiable in Canada or is it only in

> clinical trial?

> > Would I most likely have

> > the same problem on sprycel or does it bind differently than

> Gleevec does?

> > If it is only in

> > clinical trial does anyone know a trial that is recruiting?

> >

> > Cam

> >

> >

> >

> >

> >