interferon

[Guest guest]

I was very interested to hear about the interferon. I have a very low

PCR and understand that it can be very useful in this situation as long

as the side effects can be tolerated.

I am very seriously considering trying it. I have a multitude of side

effects with the glivec and dasatinib and would prefer to try the

interferon before thinking about a transplant.

My doctor was suggesting a 3 times a week regime.

I am seeing him tomorrow so will know more then.

Leigh

Home Number: 0208-621-1664

Mobile: 07956 269 368

PLEASE NOTE MY NEW E-MAIL ADDRESS

[ ] Magic and Cancer

Hello All,

I haven't posted here in a while but here are my comments.

I think the Globe and Mail article was fairly balanced and represented

the

hardships - thanks for bringing them up Tracey, as well as some of the

blessings - Ron, Zavie and Eleanor being in a slightly different age

category, give us a different perspective.

In defense of Rita and the reference to magic, I think I know where she

is

coming from. When we consider that Gleevec isn't the " first " targeted

drug,

actually Retinoic Acid, or Vitamin A which is used to " CURE " APL was the

first targeted drug (Suzan M. taught us that). Using words like " magic "

is

deceptive because it diminishes the research, work and dedication our

Doctors (and Dr. D. specifically in the case of Gleevec) poured into

getting this drug to market. As we all know, CML is an incredibly

complex

disease and we still have much to learn about it.

Like everyone else I am happy for my fellow CMLers who have achieved a

level

of remission with with Gleevec. But cancer is a formidable enemy and

remission does not equal cure. As long as there are stem cells surviving

(and sleeping happily in a quiescent state) then resistance and relapse

are

concerns.

I prefer to think that there was nothing magical about the research and

determination that goes into discovering these life saving drugs. I

believe

that they represent many long hours of painstaking research and testing

and

re-testing, then the collective holding of our breath while we all wait

to

see if this drug works or not.

From looking over the list I see there was a discussion about

interferon.

Yes, I have gone back to interferon and grateful that it was still an

option

for me. I am on low dose pegylated interferon and doing incredibly well.

Why did I switch back? I developed kidney problems, probably as a result

of

a kidney problem during my adolescence. Pegylated INF is quite

remarkable

in that the side effects are greatly diminished. I can say this because

I

have tried both. I only inject once every 10 days which gives me plenty

of

time to " forget " about CML. I usually have only a very slight achy

feeling

two days after injecting. No more GI problems, no more low Hgb, and I

enjoyed an incredible tan from the summer sun which hasn't occurred in

over

five years. I was careful with sun screen though. I lost 15 lbs without

switching my diet and I exercise and work out more. The Gleevec " foggy "

brain is gone. I am not doing a sales pitch for INF, although I admit it

sounds like one.

As I write this there is the pan European trial called the SPIRIT trial

using combinations of INF and Gleevec. Patients will be given either 400

mg

of IM, 800 mg of IM or 400 mg of IM and low dose Peg INF. The patients

in

the combo arm will eventually be weaned off of IM and then eventually be

weaned off of INF and be closely monitored. I am in contact with

patients

who have stopped IM and are enjoying incredibly low level PCR and

watching

their PCR levels drop even further. This is a hopeful sign. After 25

years

of INF science still doesn't completely understand how it works, but

this is

all interesting. I hear there is a trial starting in Israel, and then

there

is one starting at Hopkins. I sure wish there would be something

here

in Canada.

All this to say that low dose Peg IFN cannot at all be compared to the

horror stories of pre Gleevec IFN, and I would encourage anyone out

there

thinking about a combo trial to give it a try. Especially if you are

younger.

Will I stay on IFN? Who knows? I could go to either Dasatinib or

Nilotinib, although most experts would prefer Dasatinib, but I am

grateful

for having choices. For now I continue to be in CCR and am close to a 3

log

reduction, you do not need to be PCRU on IFN - but it sure would be nice

;-). It was not easy giving up my PCRU status on Gleevec, but I didn't

like

thinking about the possibility of dialysis.

We will all need to manage ourselves according to what works best for us

individually. I encourage the competition because it is clear to me we

will

need even more choices as time goes on. But fingers are crossed for a

cure.

Now, if humanity can figure out a way to get these drugs to all patients

regardless of their financial status and where they live, well, now that

just might be getting a little closer to magic.

Peace, Love and all groovy things,

Cheryl-Anne

[Guest guest]

Is marijuana legal in IN?? It might make the Inf. a better " trip " .

a ( Bobby ) Doyle, dob 12/17/29

Brecksville, Ohio, USA

DX 5/1995

Interferon 9 weeks/Hydroxyurea 5 years

02/2000 to 06/2002 Gleevec trial, OHSU

06/2002 Gleevec/Trisenox Trial, OHSU

06/2003 Gleevec/Zarnestra Trial, OHSU

04/2004 Sprycel Trial, MDACC, CCR in 10 months

04/2008 XL228 Trial, U of Mich.

01/2009 PCR 5.69

04/2009 Ariad Trial AP24534

09/2009 PCR 0.017

11/2009 PCR 0.034

#840 Zavie's Zero Club

From: Bob <bob-stewart@...>

Subject: [ ] Interferon

" -The New Group " < >, " CML-Asian Support "

<AsianCMLSupportGroup >

Date: Monday, February 22, 2010, 12:43 PM

 

Well, I shot myself up with 9miu of Interferon last night--at about 7:30

PM.  I woke up at about 2:00 AM with a temperature of 104, shaking.  I put

some sweats on, no help.  Then I threw up everything I'd eaten yesterday at

about 4:00 AM.  My temp was down to 101.8 this morning.

I HATE INTERFERON!

By the way, the only reason I'm posting my Interferon adventures on the CML

groups (while the Interferon is actually part of a regiment for kidney cancer)

is that so many of my CML buddies have gone thru the Interferon mess.  If

you've survived CML for ten or more years you've probably gone thru Interferon

before Gleevec became available.  I think that the 4 years I was on Interferon

in the late 1990's should exempt me from ever taking it again.

Bob , Granger, IN

PS:  My oncologist just called--I'm off Interferon until we meet on

Wednesday.  I'm going to try to talk him into a lower starting dose.  I know I

took some over the counter stuff before (tylenol and benedryl???) but can't

remember what it was. 

[Guest guest]

Leal or not-I would get some!!!

_____

From: [mailto: ] On Behalf Of

ROBERTA DOYLE

Sent: Monday, February 22, 2010 10:23 AM

Subject: Re: [ ] Interferon

Is marijuana legal in IN?? It might make the Inf. a better " trip " .

a ( Bobby ) Doyle, dob 12/17/29

Brecksville, Ohio, USA

DX 5/1995

Interferon 9 weeks/Hydroxyurea 5 years

02/2000 to 06/2002 Gleevec trial, OHSU

06/2002 Gleevec/Trisenox Trial, OHSU

06/2003 Gleevec/Zarnestra Trial, OHSU

04/2004 Sprycel Trial, MDACC, CCR in 10 months

04/2008 XL228 Trial, U of Mich.

01/2009 PCR 5.69

04/2009 Ariad Trial AP24534

09/2009 PCR 0.017

11/2009 PCR 0.034

#840 Zavie's Zero Club

From: Bob <bob-stewart@ <mailto:bob-stewart%40sbcglobal.net>

sbcglobal.net>

Subject: [ ] Interferon

" -The New Group " <groups (DOT) <mailto:%40>

com>, " CML-Asian Support " <AsianCMLSupportGrou

<mailto:AsianCMLSupportGroup%40> p >

Date: Monday, February 22, 2010, 12:43 PM

Well, I shot myself up with 9miu of Interferon last night--at about 7:30 PM.

I woke up at about 2:00 AM with a temperature of 104, shaking. I put some

sweats on, no help. Then I threw up everything I'd eaten yesterday at about

4:00 AM. My temp was down to 101.8 this morning.

I HATE INTERFERON!

By the way, the only reason I'm posting my Interferon adventures on the CML

groups (while the Interferon is actually part of a regiment for kidney

cancer) is that so many of my CML buddies have gone thru the Interferon

mess. If you've survived CML for ten or more years you've probably gone

thru Interferon before Gleevec became available. I think that the 4 years I

was on Interferon in the late 1990's should exempt me from ever taking it

again.

Bob , Granger, IN

PS: My oncologist just called--I'm off Interferon until we meet on

Wednesday. I'm going to try to talk him into a lower starting dose. I know

I took some over the counter stuff before (tylenol and benedryl???) but

can't remember what it was.

[Guest guest]

I meant LEGAL or not I would get some!!!

_____

From: [mailto: ] On Behalf Of

ROBERTA DOYLE

Sent: Monday, February 22, 2010 10:23 AM

Subject: Re: [ ] Interferon

Is marijuana legal in IN?? It might make the Inf. a better " trip " .

a ( Bobby ) Doyle, dob 12/17/29

Brecksville, Ohio, USA

DX 5/1995

Interferon 9 weeks/Hydroxyurea 5 years

02/2000 to 06/2002 Gleevec trial, OHSU

06/2002 Gleevec/Trisenox Trial, OHSU

06/2003 Gleevec/Zarnestra Trial, OHSU

04/2004 Sprycel Trial, MDACC, CCR in 10 months

04/2008 XL228 Trial, U of Mich.

01/2009 PCR 5.69

04/2009 Ariad Trial AP24534

09/2009 PCR 0.017

11/2009 PCR 0.034

#840 Zavie's Zero Club

From: Bob <bob-stewart@ <mailto:bob-stewart%40sbcglobal.net>

sbcglobal.net>

Subject: [ ] Interferon

" -The New Group " <groups (DOT) <mailto:%40>

com>, " CML-Asian Support " <AsianCMLSupportGrou

<mailto:AsianCMLSupportGroup%40> p >

Date: Monday, February 22, 2010, 12:43 PM

Well, I shot myself up with 9miu of Interferon last night--at about 7:30 PM.

I woke up at about 2:00 AM with a temperature of 104, shaking. I put some

sweats on, no help. Then I threw up everything I'd eaten yesterday at about

4:00 AM. My temp was down to 101.8 this morning.

I HATE INTERFERON!

By the way, the only reason I'm posting my Interferon adventures on the CML

groups (while the Interferon is actually part of a regiment for kidney

cancer) is that so many of my CML buddies have gone thru the Interferon

mess. If you've survived CML for ten or more years you've probably gone

thru Interferon before Gleevec became available. I think that the 4 years I

was on Interferon in the late 1990's should exempt me from ever taking it

again.

Bob , Granger, IN

PS: My oncologist just called--I'm off Interferon until we meet on

Wednesday. I'm going to try to talk him into a lower starting dose. I know

I took some over the counter stuff before (tylenol and benedryl???) but

can't remember what it was.

[Guest guest]

Bob,

So sorry you had a rough start with this..Hopefully the DR will be open to the

idea of starting out slower..What a night..

SharonS

>

> Well, I shot myself up with 9miu of Interferon last night--at about 7:30 PM. 

I woke up at about 2:00 AM with a temperature of 104, shaking.  I put some

sweats on, no help.  Then I threw up everything I'd eaten yesterday at about

4:00 AM.  My temp was down to 101.8 this morning.

>

> I HATE INTERFERON!

>

> By the way, the only reason I'm posting my Interferon adventures on the CML

groups (while the Interferon is actually part of a regiment for kidney cancer)

is that so many of my CML buddies have gone thru the Interferon mess.  If you've

survived CML for ten or more years you've probably gone thru Interferon before

Gleevec became available.  I think that the 4 years I was on Interferon in the

late 1990's should exempt me from ever taking it again.

>

> Bob , Granger, IN

>

> PS:  My oncologist just called--I'm off Interferon until we meet on

Wednesday.  I'm going to try to talk him into a lower starting dose.  I know I

took some over the counter stuff before (tylenol and benedryl???) but can't

remember what it was. 

>

>

[Guest guest]

Good idea!  You with blue hair, and me bald ( I am involved in baldacious fund

raiser, and will shave my hair)  I can get bong from " someone " I know!! 

Here is a bit long but funny story:

When my son was about 16 he gave me a huge bag of his Xmas presents and asked me

to keep them in my closet til he wrapped them.  I knocked the bag over and

heard a crack. I opened the package and there was a very large, long green

plastic bong in it, and it had a crack about an inch long at the top.  A friend

of mine said, no problem, I'll just cut off the top part, bevel it down and he

will never know.  Xmas morning came around, Donnie gave me my gift, and 'lo and

behold, it was the green bong!!! (why he would give his mother a bong is beyond

me)  He said, sorry Mom, but it has a crack in it at the top, right here, and

when he went to show me, of course the crack was gone.  He was very puzzled,

said he got it half price because of the crack.  But his choice of presents for

his mother was odd to say the least......but I bet I could still get a pipe or a

bong if I really wanted to.  You just say when and I'll bring some brownies

too.

a ( Bobby ) Doyle, dob 12/17/29

Brecksville, Ohio, USA

DX 5/1995

Interferon 9 weeks/Hydroxyurea 5 years

02/2000 to 06/2002 Gleevec trial, OHSU

06/2002 Gleevec/Trisenox Trial, OHSU

06/2003 Gleevec/Zarnestra Trial, OHSU

04/2004 Sprycel Trial, MDACC, CCR in 10 months

04/2008 XL228 Trial, U of Mich.

01/2009 PCR 5.69

04/2009 Ariad Trial AP24534

09/2009 PCR 0.017

11/2009 PCR 0.034

#840 Zavie's Zero Club

From: bob1234stewart <bob-stewart@...>

Subject: Re: [ ] Interferon

Date: Tuesday, February 23, 2010, 10:38 AM

 

Dear Bobby,

I just had this flash of you and me sitting on the deck, smoking pot, and

drinking beer. Might not be a bad way to go.

Bob , Granger, IN

PS: Pot's not legal in Indiana but it is in Michigan, 1/2 mile north of where I

live.

>

> Is marijuana legal in IN?? It might make the Inf. a better " trip " .

>

> a ( Bobby ) Doyle, dob 12/17/29

> Brecksville, Ohio, USA

> DX 5/1995

> Interferon 9 weeks/Hydroxyurea 5 years

> 02/2000 to 06/2002 Gleevec trial, OHSU

> 06/2002 Gleevec/Trisenox Trial, OHSU

> 06/2003 Gleevec/Zarnestra Trial, OHSU

> 04/2004 Sprycel Trial, MDACC, CCR in 10 months

> 04/2008 XL228 Trial, U of Mich.

> 01/2009 PCR 5.69

> 04/2009 Ariad Trial AP24534

> 09/2009 PCR 0.017

> 11/2009 PCR 0.034

> #840 Zavie's Zero Club

>

>

[Guest guest]

HI Bob, start with lower dose and slowly increase. I hate the same side effect

the very first time I did my shot, but the next day I was already fine. I was

very scared to give myself a shot the next day, but I did it and I was

completely fine. I had a high fever and I was shaking so much, too. I couldn't

stop it, it was almost like a long time seizure that I couldn't stop:) good

luck, i hope you will get used to it. livia

From: Bob <bob-stewart@...>

Subject: [ ] Interferon

" -The New Group " < >, " CML-Asian Support "

<AsianCMLSupportGroup >

Date: Monday, February 22, 2010, 12:43 PM

 

Well, I shot myself up with 9miu of Interferon last night--at about 7:30

PM.  I woke up at about 2:00 AM with a temperature of 104, shaking.  I put

some sweats on, no help.  Then I threw up everything I'd eaten yesterday at

about 4:00 AM.  My temp was down to 101.8 this morning.

I HATE INTERFERON!

By the way, the only reason I'm posting my Interferon adventures on the CML

groups (while the Interferon is actually part of a regiment for kidney cancer)

is that so many of my CML buddies have gone thru the Interferon mess.  If

you've survived CML for ten or more years you've probably gone thru Interferon

before Gleevec became available.  I think that the 4 years I was on Interferon

in the late 1990's should exempt me from ever taking it again.

Bob , Granger, IN

PS:  My oncologist just called--I'm off Interferon until we meet on

Wednesday.  I'm going to try to talk him into a lower starting dose.  I know I

took some over the counter stuff before (tylenol and benedryl???) but can't

remember what it was. 

[Guest guest]

Hi Bob,

It was only 6 years ago that I was diagnosed and at the time my choices were

Interferon, BMT, or MDACC. My oncologist skipped right to 3rd choice - she said

that interferon was brutal...but look where it has gotten you today. Strong as

nails! Get er done, as that one comedian would say (chemo brain - can't think

what his name is right now) but I'm sure you know who it is.

Sending prayers and strength your way,

Jackie S.

________________________________

From: hey00nanc <ncogan@...>

Sent: Tue, February 23, 2010 3:07:53 PM

Subject: [ ] Re: Interferon

>

> Well, I shot myself up with 9miu of Interferon last night--at about 7:30 PM.

I woke up at about 2:00 AM with a temperature of 104, shaking. I put some

sweats on, no help. Then I threw up everything I'd eaten yesterday at about

4:00 AM. My temp was down to 101.8 this morning.

>

> I HATE INTERFERON!

>

> By the way, the only reason I'm posting my Interferon adventures on the CML

groups (while the Interferon is actually part of a regiment for kidney cancer)

is that so many of my CML buddies have gone thru the Interferon mess. If you've

survived CML for ten or more years you've probably gone thru Interferon before

Gleevec became available. I think that the 4 years I was on Interferon in the

late 1990's should exempt me from ever taking it again.

>

> Bob , Granger, IN

>

> PS: My oncologist just called--I'm off Interferon until we meet on Wednesday.

I'm going to try to talk him into a lower starting dose. I know I took some

over the counter stuff before (tylenol and benedryl???) but can't remember what

it was.

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

Hi Bob,

I was briefly on interferon (3 months of triple therapy at MDACC) and the dose

was 9miu daily.....my first few doses were horrible (painful back cramps, etc)

but then it got better. I used to wait until Jay Leno was on TV to shoot up, so

that I would have something to laugh about. I think we did take tylenol at the

same time, for some of the symptoms.

MDACC gave it to me in a vial....but when I got home I got something MUCH

better....it was an interferon pen (you dial up a dose and then just push the

pen against the skin....very easy...and the easier the better when you are doing

something you don't particularly want to do). I remember later telling Dr.

Druker that my dose was 9miu right from the start and he did not agree with

doing it that way....he thought that you should build up your dose.....so maybe

you will have that option (I know you are taking it for something other than

cml).

I was pretty 'out to lunch' on interferson but I was not as aware of it as my

friends were!!

I hope things go well for you with this treatment. Sounds like your doctor will

work with you.

Best wishes,

C.

[Guest guest]

Room for one more?

Don

> >

> > Is marijuana legal in IN?? It might make the Inf. a better " trip " .

> >

> > a ( Bobby ) Doyle, dob 12/17/29

> > Brecksville, Ohio, USA

> > DX 5/1995

> > Interferon 9 weeks/Hydroxyurea 5 years

> > 02/2000 to 06/2002 Gleevec trial, OHSU

> > 06/2002 Gleevec/Trisenox Trial, OHSU

> > 06/2003 Gleevec/Zarnestra Trial, OHSU

> > 04/2004 Sprycel Trial, MDACC, CCR in 10 months

> > 04/2008 XL228 Trial, U of Mich.

> > 01/2009 PCR 5.69

> > 04/2009 Ariad Trial AP24534

> > 09/2009 PCR 0.017

> > 11/2009 PCR 0.034

> > #840 Zavie's Zero Club

> >

> >

>

[Guest guest]

You betcha!!

a ( Bobby ) Doyle, dob 12/17/29

Brecksville, Ohio, USA

DX 5/1995

Interferon 9 weeks/Hydroxyurea 5 years

02/2000 to 06/2002 Gleevec trial, OHSU

06/2002 Gleevec/Trisenox Trial, OHSU

06/2003 Gleevec/Zarnestra Trial, OHSU

04/2004 Sprycel Trial, MDACC, CCR in 10 months

04/2008 XL228 Trial, U of Mich.

01/2009 PCR 5.69

04/2009 Ariad Trial AP24534

09/2009 PCR 0.017

11/2009 PCR 0.034

#840 Zavie's Zero Club

From: dadkins88 <donaldadkins@...>

Subject: Re: [ ] Interferon

Date: Sunday, February 28, 2010, 4:26 PM

 

Room for one more?

Don

> >

> > Is marijuana legal in IN?? It might make the Inf. a better " trip " .

> >

> > a ( Bobby ) Doyle, dob 12/17/29

> > Brecksville, Ohio, USA

> > DX 5/1995

> > Interferon 9 weeks/Hydroxyurea 5 years

> > 02/2000 to 06/2002 Gleevec trial, OHSU

> > 06/2002 Gleevec/Trisenox Trial, OHSU

> > 06/2003 Gleevec/Zarnestra Trial, OHSU

> > 04/2004 Sprycel Trial, MDACC, CCR in 10 months

> > 04/2008 XL228 Trial, U of Mich.

> > 01/2009 PCR 5.69

> > 04/2009 Ariad Trial AP24534

> > 09/2009 PCR 0.017

> > 11/2009 PCR 0.034

> > #840 Zavie's Zero Club

> >

> >

>