Re: Sprycel problems, rash......

[Guest guest]

-

I have suffered with the pain, fatigue, nausea and diarrhea for so long that

it is just a way of life for me. I have had every known side effect and

then some. My strawberry blonde hair and freckles that Gleevec took away and

turned white is now coming back with Spyrcel. Go figure.

I have bone pain, nearly ever day it is just severe if I wake up during the

night. I guess maybe that is when the medication is working the hardest?

Don't know. I had my counts done last week and everything actually looked

pretty darn amazing. Couldn't ask for anything better. The rash has not been

told to my doc. I do however have an appointment on Thursday. I do have all

kind of painkillers and ativan that have been prescribed however, I hate

taking pills so I just deal with it. It comes and goes so I just push through

it but on bad days with no relief I due use the pills and rest.

The gastro issues I have had and severe on Gleevec. I guess I didn't

realize people were having it on this too. I guess anything is possible. It

is

such an adventure waking up to see what the day will bring but I am GLAD to

have the option of waking up. Thank God for the medication. I guess it is a

love-hate relationship.

The rash is what worries me because it does probably need to be treated. I

will follow up and see what he recommends.

Thanks for the follow up- As always I appreciate it.

Hugs and Hope-

35

CML 5/13/05

Gleevec 800mg until 8/07

Spyrcel 100 mg since 9/07

Wife and mother of 3 (12,9,7)

# 907 in Zavie's Zero Club

**************It's Tax Time! Get tips, forms, and advice on AOL Money &

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[Guest guest]

,

Sounds to me like you're used to having side effects and for some reason you

don't complain much. You have a PLETHORA of symptoms that all sound very

bothersome and inconvenient. I think there are CML warriors who feel that we've

been fortunate to have all these newfangled drugs and you're right. . . but, you

have a right and really a responsibility to yourself to find out how to treat

these symptoms.

I have heard of the rash and it seems to vary from person to person. I do not

know about treatment as I've been on Sprycel (100 mg a.m.) and the side effects

I've had were dealt with by taking me off the drug for 2 1/2 weeks.

I do hope you're talking to your onc about this. You actually listed bone pain

as an afterthought! It can be a truly horrendous experience. I had it on

Gleevec and the only treatment that worked was Ativan. Honest. They had me on

truly addictive painkillers for awhile and it ended up that Ativan and finally

Clonopin were the best answers. It went away altogether and now I'm on Sprycel.

Sorry to go on and on but I hate to think of people suffering for the privilege

and relief of taking a medication that holds so much promise. I do hope you

find relief right away, .

Sincerely,

L

[ ] Sprycel problems, rash......

Hey all-

I was wondering if anyone on Spyrcel or that has been on Spyrcel could offer

some advice.....

I have been on it since September 07 and I am having some issues and

wondering if this is Spyrcel related.

About a week ago I developed a rashy thing on the left temporal side of my

face. It is small bumps in a red patchy area that itches like crazy and the

more I itch the more it burns. It seems to come and go in severity but has

never disappeared.....

Also, I am having gastro issues. I am bloated (look 4-5 months pregnant)

and having gassy, small loose stool with fluid). What a nice picture this is

painting for ya, sorry about being so specific/graphic.

I also have the usual extreme fatigue, muscle aches, sweating like crazy

with any activity, itching, scalp hurts but the gastro and rash thing is

really

bothersome. Any ideas/suggestion?

I am on 100mg daily that I take at bedtime without any problems. If I wake

up during the night I am having muscle and bone pain but nothing else really.

Is a rash common with this drug? I know it was with Gleevec....

Hugs and Hope-

35

CML 5/13/05

Gleevec 800mg until 8/07

Spyrcel 100 mg since 9/07

Wife and mother of 3 (12,9,7)

# 907 in Zavie's Zero Club

**************It's Tax Time! Get tips, forms, and advice on AOL Money &

Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001)

[Guest guest]

I had the same bloating and tummy problem. Most uncomfortable and

inconvenient. It got really bad. I got really nausous one morning so

I finally drank some MOM (4 tbs or so) and that resolved things! I

know you're having small loose stools but their small and maybe....

this has been my biggest problem. I couldn't fit in anything but my

sweats. AS for the rash, I don't know. Sounds like a contact

dermatitis but I think Sprycel can cause rash. I vaguely remember

having a dotty rash on my back that went away after a few days.

Good luck. I know oncos don't like to treat side effects sometimes

and you need to know what you're dealing with before they do.

>

> ,

>

> Sounds to me like you're used to having side effects and for some

reason you don't complain much. You have a PLETHORA of symptoms that

all sound very bothersome and inconvenient. I think there are CML

warriors who feel that we've been fortunate to have all these

newfangled drugs and you're right. . . but, you have a right and

really a responsibility to yourself to find out how to treat these

symptoms.

>

> I have heard of the rash and it seems to vary from person to

person. I do not know about treatment as I've been on Sprycel (100

mg a.m.) and the side effects I've had were dealt with by taking me

off the drug for 2 1/2 weeks.

>

> I do hope you're talking to your onc about this. You actually

listed bone pain as an afterthought! It can be a truly horrendous

experience. I had it on Gleevec and the only treatment that worked

was Ativan. Honest. They had me on truly addictive painkillers for

awhile and it ended up that Ativan and finally Clonopin were the best

answers. It went away altogether and now I'm on Sprycel.

>

> Sorry to go on and on but I hate to think of people suffering for

the privilege and relief of taking a medication that holds so much

promise. I do hope you find relief right away, .

>

> Sincerely,

>

> L

> [ ] Sprycel problems, rash......

>

>

> Hey all-

>

> I was wondering if anyone on Spyrcel or that has been on Spyrcel

could offer

> some advice.....

> I have been on it since September 07 and I am having some issues

and

> wondering if this is Spyrcel related.

> About a week ago I developed a rashy thing on the left temporal

side of my

> face. It is small bumps in a red patchy area that itches like

crazy and the

> more I itch the more it burns. It seems to come and go in

severity but has

> never disappeared.....

> Also, I am having gastro issues. I am bloated (look 4-5 months

pregnant)

> and having gassy, small loose stool with fluid). What a nice

picture this is

> painting for ya, sorry about being so specific/graphic.

> I also have the usual extreme fatigue, muscle aches, sweating

like crazy

> with any activity, itching, scalp hurts but the gastro and rash

thing is really

> bothersome. Any ideas/suggestion?

>

> I am on 100mg daily that I take at bedtime without any problems.

If I wake

> up during the night I am having muscle and bone pain but nothing

else really.

>

>

> Is a rash common with this drug? I know it was with Gleevec....

>

> Hugs and Hope-

>

> 35

> CML 5/13/05

> Gleevec 800mg until 8/07

> Spyrcel 100 mg since 9/07

> Wife and mother of 3 (12,9,7)

> # 907 in Zavie's Zero Club

>

> **************It's Tax Time! Get tips, forms, and advice on AOL

Money &

> Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001)

>

>

[Guest guest]

Hi Mari,

Is it true that some oncs don't treat side effects? I can't imagine why they

wouldn't. CML is enough, never mind side effects that can literally be even

more uncomfortable and as dangerous than the disease itself!

L

[ ] Sprycel problems, rash......

>

>

> Hey all-

>

> I was wondering if anyone on Spyrcel or that has been on Spyrcel

could offer

> some advice.....

> I have been on it since September 07 and I am having some issues

and

> wondering if this is Spyrcel related.

> About a week ago I developed a rashy thing on the left temporal

side of my

> face. It is small bumps in a red patchy area that itches like

crazy and the

> more I itch the more it burns. It seems to come and go in

severity but has

> never disappeared.....

> Also, I am having gastro issues. I am bloated (look 4-5 months

pregnant)

> and having gassy, small loose stool with fluid). What a nice

picture this is

> painting for ya, sorry about being so specific/graphic.

> I also have the usual extreme fatigue, muscle aches, sweating

like crazy

> with any activity, itching, scalp hurts but the gastro and rash

thing is really

> bothersome. Any ideas/suggestion?

>

> I am on 100mg daily that I take at bedtime without any problems.

If I wake

> up during the night I am having muscle and bone pain but nothing

else really.

>

>

> Is a rash common with this drug? I know it was with Gleevec....

>

> Hugs and Hope-

>

> 35

> CML 5/13/05

> Gleevec 800mg until 8/07

> Spyrcel 100 mg since 9/07

> Wife and mother of 3 (12,9,7)

> # 907 in Zavie's Zero Club

>

> **************It's Tax Time! Get tips, forms, and advice on AOL

Money &

> Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001)

>

>

[Guest guest]

-jenifer

have you seen a dermatologist? perhaps they can do a culture of some

kind and help with something

aliza yaffa

-- In , " seloew12 " <seloew12@...> wrote:

>

> ,

>

> Sounds to me like you're used to having side effects and for some

reason you don't complain much. You have a PLETHORA of symptoms that

all sound very bothersome and inconvenient. I think there are CML

warriors who feel that we've been fortunate to have all these

newfangled drugs and you're right. . . but, you have a right and

really a responsibility to yourself to find out how to treat these

symptoms.

>

> I have heard of the rash and it seems to vary from person to

person. I do not know about treatment as I've been on Sprycel (100

mg a.m.) and the side effects I've had were dealt with by taking me

off the drug for 2 1/2 weeks.

>

> I do hope you're talking to your onc about this. You actually

listed bone pain as an afterthought! It can be a truly horrendous

experience. I had it on Gleevec and the only treatment that worked

was Ativan. Honest. They had me on truly addictive painkillers for

awhile and it ended up that Ativan and finally Clonopin were the best

answers. It went away altogether and now I'm on Sprycel.

>

> Sorry to go on and on but I hate to think of people suffering for

the privilege and relief of taking a medication that holds so much

promise. I do hope you find relief right away, .

>

> Sincerely,

>

> L

> [ ] Sprycel problems, rash......

>

>

> Hey all-

>

> I was wondering if anyone on Spyrcel or that has been on Spyrcel

could offer

> some advice.....

> I have been on it since September 07 and I am having some issues

and

> wondering if this is Spyrcel related.

> About a week ago I developed a rashy thing on the left temporal

side of my

> face. It is small bumps in a red patchy area that itches like

crazy and the

> more I itch the more it burns. It seems to come and go in

severity but has

> never disappeared.....

> Also, I am having gastro issues. I am bloated (look 4-5 months

pregnant)

> and having gassy, small loose stool with fluid). What a nice

picture this is

> painting for ya, sorry about being so specific/graphic.

> I also have the usual extreme fatigue, muscle aches, sweating

like crazy

> with any activity, itching, scalp hurts but the gastro and rash

thing is really

> bothersome. Any ideas/suggestion?

>

> I am on 100mg daily that I take at bedtime without any problems.

If I wake

> up during the night I am having muscle and bone pain but nothing

else really.

>

>

> Is a rash common with this drug? I know it was with Gleevec....

>

> Hugs and Hope-

>

> 35

> CML 5/13/05

> Gleevec 800mg until 8/07

> Spyrcel 100 mg since 9/07

> Wife and mother of 3 (12,9,7)

> # 907 in Zavie's Zero Club

>

> **************It's Tax Time! Get tips, forms, and advice on AOL

Money &

> Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001)

>

>

[Guest guest]

-jenifer

how are you eliminating? and are you retaining water?check out all

posibilities I know when you feel crapy you feel like giving up been

there but you have us to give you the boost and you are not whining

thats the purpose of the group so we can k'vech about what bothers us

no none understands like we do

.. sooner or later we all get our turn to k'vech it's yours now.like

we say in hebrew " kol koakh " ( you should have all the stregth)

lov aliza yaffa

-- In , vegasrnjen@... wrote:

>

> Aliza-

>

> I haven't yet but I intend to call me MD in the morning and see if

I can get

> in before Thursday. With the rash and my belly/weight gain I

figure I need

> to probably get seen and get labs checked out. I am SOB

(exertional) with the

> weight and swollen gut, which then makes me increased fatigue and

crabby.

> Ya'll know how it goes, the vicious circle...... I'm whinning.

Sorry, I know

> everyone here suffers with their issues. Just been a rough 48

hours. I am

> sure by the time I wake up tomorrow morning, everything will feel

better and

> I will be better. Tomorrow is always a brighter day.

>

> Peace and love to all and thanks for writing back Aliza, I

appreciate the

> thoughts and support.

>

> Hugs and Hope-

>

> 35

> CML 5/13/05

> Gleevec 800mg until 8/07

> Spyrcel 100 mg since 9/07

> Wife and mother of 3 (12,9,7)

> # 907 in Zavie's Zero Club

>

>

>

>

> **************It's Tax Time! Get tips, forms, and advice on AOL

Money &

> Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001)

>

>

>