RE: Bad weekend with Sprycel

January 27, 2008

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

January 27, 2008

Wow, wendy.... I hadn't read your post when I answered mine. We really

said quite the same things......

I hope is doing well. Think of you guys often...

Hugs and hope-

jennifer

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

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

January 27, 2008

Marriane:

Sorry to hear of all of your problems. My husband has been on 140mg Sprycel for

7 months now, and doesnt have too many lasting side affects. But, I will tell

you that the first few months they came and went, all the time. So, hang in

there...usually (from our experience and many other's on this fourm), the

affects have subsided with time. Day 15 is still pretty early to have your body

get used to the medication. I know it is probably not what you want to hear, but

in our experience it really does get better with time. Remember this is a very

powerful drug and it will take some time for your body to process it.

140mg is not too high of a dose. Yes, alot of people are on the 100 doseage, but

the recommended doseage is still 140 mg. By now you have probably heard of

doctor Druker out of OHSU...he is often referred to as " the father of

CML. " He invented Gleevec. He is one of the world's leading specialists on CML.

We flew to go see him this last July and he, too, said 140mg is the recommended

doseage of Sprycel. They are seeing that many studies are now showing that the

lower 100mg doseage is showing to be just as effective in treating CML, and in

the near future the recommended daily doseage might be changed to 100.

Many people on this forum are more knowledgeable than I about drug interactions

between some of the drugs you mentioned and Sprycel. I am sure they will answer

you.

I will keep you in my thoughts and prayers, hang in there--it will get better.

Instead of focusing on the negatives you are experiencing right now, I know for

my husband, whenever he would have some sort of pain (joint or muscle) or

headaches, etc. he would focus on the fact that the Sprycel (or, at the time

Gleevec) was doing it's job, and actually making him healthier...and he would

start envisioning that the pains he was going through was " bad " stuff getting

out of his body. I dont know how much into " visualization " you are, but how he

was thinking of things really affected how he was feeling. I still think that is

the case.

Take care,

From: tmtip@...

Date: Sun, 27 Jan 2008 20:34:43 +0000

Subject: [ ] Bad weekend with Sprycel

Hi everyone,

I posted about lymphoma/CML, but now I need your help again, please.

A little background. Dx 11/2007. Gleevac x 3 weeks. Horrible muscle

pain etc..stopped it. (My white count got back down to normal right

before I stopped it). Today is day 15 on Sprycel. I just saw doc on

Friday and WBC back down to 9,000. (GREAT) I was just telling him how

I thought I could handle it and everything would be cool. Well,

Friday night had bad muscle pain again (mostly in my arms). Slept.

Woke feeling fine. By lunch my stomach was really hurting (after I

ate) as it has done a couple of times since starting the Sprycel (70

mg twice a day, 140 mg a day). A few hours later I had worsening

stomach pain right above my navel and upper back pain, and a fever, I

think.

1. Anyone else on 140 mg? Is that too much.

2. Muscle pain common with Sprycel too? (I knew it was with gleevac.)

3. What's with my stomach? I do take Protonix twice a day and also

took first dose of some Reglan doc rx to help with the tummy issues,

but I don't know that it helped all that much.

4. Can you take Ibuprofen with CML/Sprycel. I stopped it because of

my tummy, but need something for muscle pain.

5. I think my onco are slightly clueless. (How do I get a second

opinion from Stanford without insurance (applied for Medicaide and

WAITING!)

6. How did you all get so

smart?????????????????????????????????????????????????????????????????

Thanks...Cheers... You all are wonderful

Marrianne

_________________________________________________________________

Helping your favorite cause is as easy as instant messaging. You IM, we give.

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January 27, 2008

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 Sharon,

PCRU stands for PCR Undetectable.

The big question is Undetectable under what circumstance.

It means Undetectable by the PCR test that is being done at the particular

laboratory that is analyzing your sample.

You can take the same blood sample and send it to two different labs for

analysis and one result will be Undetectable, and the other result will be a

3 log reduction. So what is going on here? Since there is no standard for

the PCR test, each laboratory does its own thing.

I would think that a laboratory that does a very sensitive PCR test (1 in

100,000) would say that you are at PCRU when it reaches a 5 log reduction.

Our local laboratory here in Ottawa says you are at PCRU when you reach a

3.5 log reduction. I send my sample to Toronto where they do a more

sensitive test than the lab in Ottawa.

If you look at my signature, all the PCR results come from the lab in

Toronto. If they were done in the Ottawa lab, they would be PCRU.

I hope this helps,

Zavie

Zavie (age 69)

67 Shoreham Avenue

Ottawa, Canada, K2G 3X3

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

2.8 log reduction Sep/05

3.0 log reduction Jan/06

2.9 log reduction Feb/07

3.2 log reduction Jun/07

3.6 log reduction Sep/07

e-mail: zmiller@...

Tel: 613-726-1117

Fax: 309-296-0807

Cell: 613-202-0204

ID: zaviem

_____

From: [mailto: ] On Behalf Of Sharon

& Denny

Sent: January 27, 2008 6:28 PM

Subject: RE: [ ] Bad weekend with Sprycel