RE: Bad weekend with Sprycel - Sharon T

January 28, 2008

Sharon--

We are fellow Kaiser patients. My husband is the one with CML. We have had a

great experience thus far with Kaiser. We live in Southern California. 's

onc is not a CML specialist but she has about 10 other patients with CML (all of

whom are on Gleevec, is the only one on Sprycel). So she is actually alot

more knowledgeable than alot of the other oncs I hear about on this forum. And,

she is very open to what we tell her about CML and info we have found on the

disease.

We are going to be moving up to Northern California this year sometime, and have

started researching Kaiser up there. I have found a Kaiser doctor in the city we

are moving to (Santa ), who did all of his residency at MD , and

focused on blood cancers. We hope to meet with him soon. I also have been in

direct contact with Dr. Neil Shah (a leading CML specialist based out of San

Francisco), who also said he would accept as a patient--Kaiser will not

cover that, but good to know we are in driving distance to a CML specialist! Not

to mention that we is now Dr. Druker's patient since we went and met with

him this last July, and all of 's tests get sent there.

Glad to meet a fellow Kaiser member--where do you live?

From: onthewtr@...

Date: Sun, 27 Jan 2008 15:27:51 -0800

Subject: RE: [ ] Bad weekend with Sprycel

This is such a great group!!!

I was having such a bad time with diarrhea awhile back-lost 15 pounds-felt

real bad. My dr. had me go off the medication for exactly a week. It went

away. So I went back on it it (140mg a day) 70mg twice a day.) after three

months it all came back so I went off it again. Then after 3 months again.

We cut my medication down to 50mg twice a day. I still have diarrhea every

morning but not like I used to. Going in on Tuesday for a colonoscopy but I

know that the problem is Sprycel, nothing else but since I have never had

one they told me I should. My biggest problem with sprycell is the stomach

problems. Yes the stomach gurgles.

By the way-I googled " sprycel " and read all about how they now recommend

100mg a day to be just as safe as 140mg. I was PCRU on 140mg so in a couple

of months I will see if I still am.

This CML is something else!!! I have learned so so much on my own. I know I

know more about it then my Dr. But he is very open with me and takes my

suggestions and listens to me. So that is good. But it took awhile to let

him know and realize that I knew what I was talking about. I was dx in july

of 2004 and I had a BMB and a BMA every three months. I was on a study at

Kaiser (anyone out there on Kaiser?) then about a year ago they just did

BMA. When the study ended. They put me on a " follow up " study and told me

that as long as I stay PCRU no more BMB or BMA. But now I get a PCR every

three months. My quality of life is very good. I do get tired quicker but I

contribute that a lot to going to be 65 on Feb. 10th and to taking care of

and enjoying my grandchildren.

I am totally confused when it comes to this log reduction???? If one is in

PCRU what should their log reduction be??? 1 log, 3 log????? Very confusing

to me so please all of you out there-don't feel stupid when you want to ask

questions. I have had CML for almost 4 years and I still don't know all of

it.

Sharon T

DX July 2004

On Gleevec July 2004 (400mg)

Off Gleevec March 2005

On Sprycel (we called it BMS) April 28,2005 (140mg)

Nov 2007 went down to 50mg twice a day and I feel a lot better.

_____

From: [mailto: ] On Behalf Of

vegasrnjen@...

Sent: Sunday, January 27, 2008 2:10 PM

Subject: Re: [ ] Bad weekend with Sprycel

okay, this is my 2 cents. My personal experience......

I have had bad muscle and bone pain on both Gleevec 600, 800mg as well as

since being on Spyrcel. (Especially in the first 3 months of both) That

seemed to be the worse. I take 100mg of Spyrcel and I take it at bedtime so

that

I can sleep through the worse of it.... I still am occasionally awoken with

muscle and bone pain especially in my long bones in my legs. I also have

numbness in my arms, hands and feet. (off and on)..My GI stomach problems

where

a whole lot worse on Gleevec in which I took Protonix, Zofran, Reglan and

all

that stuff daily.

Since starting Spyrcel, I was told not to take any of those stomach meds as

it messes with the absorption and Spyrcel works better without. So, i

haven't taken them. However, I still get the very watery CMl diarrhea and

stomach

gurgles.

I also take Ibuprofen on my bad days when I simply can't take the pains. It

does take the edge off. I am used to being in pain so my tolerance is

pretty high. I also don't like taking meds, so I only take it when I really

need

some kind of pain relief.

For me, Stomach issues as well as pain as been since my first weeks with

Gleevec. They have never went completely away. they are just a part of me

now.

Good days and bad.

I hope this as helped in some way. I also have it in my mind that if my

bones hurt really bad, its the medicine killing off the bad cells. Sort of

imagery therapy for me.

Best wishes and stay strong-

35

CML 5/13/05

Gleevec 800mg until 8/07

Spyrcel 100mg since 9/7/07

Wife and mother of 3 (12,8,7)

**************Start the year off right. Easy ways to stay in shape.

http://body.

<http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489>

aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489

January 28, 2008

Hi ,

So good to hear from someone on Kaiser. My Doctor is Dr. Russin from Walnut

Crek. He is a great Onocologist but I am his first CML patient so we are

learning together.

I go to the Kaiser in Walnut Creek. I live in Discovery Bay, a little

community on the delta. We are on the water.

You say that was going to Dr. Druker??? Where is he located. I t hink

he is the one that I emailed once a few years ago because I was so unhappy

with my care and very confused and he told me to have Kaiser refer me to

him. But of course my Dr. would not hear of it. Does Kaiser cover

anything that Dr. Drucker does for him?

Very interesting.I thought Dr. Drucker was in SF???

Anxious to hear back.

sharon

_____

From: [mailto: ] On Behalf Of

Cervera

Sent: Sunday, January 27, 2008 7:45 PM

Subject: RE: [ ] Bad weekend with Sprycel - Sharon T

Sharon--

We are fellow Kaiser patients. My husband is the one with CML. We have had a

great experience thus far with Kaiser. We live in Southern California.

's onc is not a CML specialist but she has about 10 other patients with

CML (all of whom are on Gleevec, is the only one on Sprycel). So she is

actually alot more knowledgeable than alot of the other oncs I hear about on

this forum. And, she is very open to what we tell her about CML and info we

have found on the disease.

We are going to be moving up to Northern California this year sometime, and

have started researching Kaiser up there. I have found a Kaiser doctor in

the city we are moving to (Santa ), who did all of his residency at MD

, and focused on blood cancers. We hope to meet with him soon. I

also have been in direct contact with Dr. Neil Shah (a leading CML

specialist based out of San Francisco), who also said he would accept

as a patient--Kaiser will not cover that, but good to know we are in driving

distance to a CML specialist! Not to mention that we is now Dr.

Druker's patient since we went and met with him this last July, and all of

's tests get sent there.

Glad to meet a fellow Kaiser member--where do you live?

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