gleevec side effects

[Guest guest]

Thank you all for your quick responses....I am encouraged....and Happy Healthy

thanksgiving to you all....please eat your heads off....it will make the

medicine go

down....hey....while we're on the subject....I have not given up is every

day....is this

good or bad.....love to you all, in Arizona

> > > My eyes stay extremely swollen all day long. I also CANNOT eat.

> I weight

> > > 95lbs and I have to make myself eat. I was wondering if anyone

> else is

> > > experiencing these side effects and if they go away over time?

> Any

> > > responses would be appreciated.

> > >

> > >'

> >

> >

> > HI '

> >

> > Often the side effects get less over time, so maybe knowing this is

> > helpful. You might try putting a mild cold pack on your eyes (they

> make

> > some gel masks) or try moist tea bags (chamomile is good). About

> the

> > eating....do you mean you cannot eat because of nausea or is it

> lack of

> > appetite? both can happen with Gleevec. Discuss this with your

> doctor, or

> > your MDACC physician's assistant......sometimes a medication can

> help.

> > Otherwise, get calories in however you can...like one of the

> supplement

> > drinks or protein drinks. I have had periods of lack of appetite

> and just

> > ate comfort foods, even if they were not the most healthy choices.

> > Hopefully this will lessen for you. Gleevec is a great drug for

> what used

> > to be a very bad disease to have......so keeping it all in

> perspective can

> > also be helpful. Good luck to you,

> >

> > C.

> > dx 8.5 years ago

> >

>

>

>

>

>

>

> Remember to smile at people, someone may see you and return the favor!

>

> Keyon

>

>

> ---------------------------------

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>

[Guest guest]

Hi ;

I have been taking Gleevec for just about 7 weeks now, and while I

don't have the face/eye swelling, I do have pretty significant bone

pain and some nausea. The nausea is pretty well controlled if I take

it with food and lots of water, but I do occasionally need to take a

nausea med. The bone pain is the most bothersome, but I have pain

medication that helps significantly when I need it. I am also pretty

tired most days, especially if I overdo it, but if I rest the

following day I am usually good to go the next! The doctors tell me

that most of these side effects decrease over time in many patients -

I am anxiously waiting! :-)

I hope you are having a good day today, and that you have a wonderful

Thanksgiving!

D.

[Guest guest]

G’day ,

You are definitely not a complainer!

I have been on Glivec since late September and had nasty side effects like

everyone. I actually had to stop for 10 days due to severe migraines, but

with the help of a small dose of an antidepression drug which is being used

to treat migraines, I then restarted Glivec 2nd daily for 2 weeks and back

to everyday now and no problems yay!!!!

I have the eye swelling, but fortunately for me all the aches and pains I

had previously went after 2 weeks of Glivec. I too have inflammatory bowel

disease and initially had problems with diarrhoea and tummy rumbles, but

always make sure I eat lots of yoghurt, eat bananas and have a high fibre

diet which helps for me. For breakfast I eat a high fibre fruit cereal and

yoghurt which helps heaps. Try and avoid any acidic foods – I find this

irritates the stomach as Glivec is a gastric irritant, hence the yoghurt.

Also, I take Glivec half way through the meal.

My haem/t also told me to take 2 tablets of magnesium 3 times a day to stop

the muscle cramps and has worked a treat (as long as I remember to take

them). I also drink at least 2 litres of water a day and at least 1 glass of

water when I take Glivec.

Regards,

(in Australia)

said:

I'd like to know what everyone experiences as they continue on Gleevec. MY

doctor is

convinced I'm in remission (wbc is 4,500 down from only 39,000 - but the

Bone Marrow test

confirmed the presence of the Philadelphia Chromosone)

I have swelling around the eyes and cheeks.....I take a Lasix type pill when

it becomes bad.

I have irritable bowel sydrome..... .(may have had this before Gleevec but

now it's worse)

I am very tired (slightly anemic....10. 3)....and have all kinds of aches

and pains which I can't

differentiate from the normal arthritis.

And muscle cramping in my legs and hands (even with potassium supplement).

The doc

suggested tonic water to alleviate this.

I also have non-specific bumps, or hives, in various places that itch?

Benedry seems to help

but makes me sleepy.

So am I a complainer or amongst you?

in Arizona

__________________________________________________________

Never miss a thing. Make your home page.

http://www.. <http://www./r/hs> com/r/hs

[Guest guest]

Thanks guys for the encouragement....will try all your suggestions....don't know

about yogurt

as I have always been lactaose intolerant.....but maybe this new

stuff...activa....anyone still

drinking alcohol out there?

from sunny Arizona

[Guest guest]

We'll have to make that happen sometime this summer! There aren't very many of

us in this area with CML. What I find strange is that there are two of us here

in St. Maries.. a small burg of 2,500. The fact that Mike lived one block from

me at the time of dx is also amazing. When he was dxed his son came over and got

my binder that I had been putting all my CML info in.

I see his wife all the time and keep up with Mike's progress. He was referred to

an onc in Spokane who was wise enoguh to send him along to OHSU to see one of

Dr. Druker's colleagues. He is doing well now, after some initial problems.

Another case was the husband of one of our nurses here. He had a BMT a few years

back though. What is strange is that we both lived in previous mining

communities in north central Idaho and now live downstream from a Superfund

site.

Take care,

Zazzy

[ ] Gleevec Side Effects

Greetings:

I am a newbie just having been diagnosed on 12-31-07. I am on

Gleevec and have developed a rash. Also, I have a swollen face and

puffiness around my eyes. I have always had a lot of energy but do

have a lot of fatigue and can sleep right after I have had a nap.

Any similar experiences and suggestions about what to do about these

side effects?

I have been reading this site for about three weeks. I noticed that

some of your WBC figures were in the hundred thousand levels. My

highest was only 47,000 and six months prior, the WBC was in the

normal range. Is there any correlation between higher numbers and

time it takes to reach CCR?

What is your opinion about taking below 400 mg of Gleevec? My onc,

due to the rash, has reduced my level to 100, 200,or 300 mg?

I enjoy the info and support that is exchanged on this site. Reading

what you have to say is helpful to me. I found that I live close to

Zazzy and look forward to meeting her.

AndeJane

[Guest guest]

Don't let that rash get ahead of itself, I had the rash from Hell while on

Gleevec, if I could post a picture on this site , I would. Unbelievable, it is

without a doubt the worst thing that ever happened to me. I finally had it

biopsied, they put me on a cortisone cream, and prednisone, but it took months

to get better. I even went to an acupuncturist, parts of my skin had ulcerated

and I was a mess.

On to good thoughts! It is great meeting up with others in the same boat. I

have met Lottie, in Houston, when we were both in the Sprycel trial, and many

others. We would all meet in the lobby at MDACC, get our labs and compare

notes. I met Len and ERnie Paschal, who have gone on to the U. of Mich, in Ann

Arbor in order to stay with Dr. Talpaz who moved there, and we see each other

all the time. Meeting others is the up-side of cml, and the web sites are

another su-side, where else would be all get more information from, it seems the

doctors are not always that forth coming with it.

Take good care of that rash, Bobby

Carol Hanson <chanson@...> wrote:

We'll have to make that happen sometime this summer! There aren't very

many of us in this area with CML. What I find strange is that there are two of

us here in St. Maries.. a small burg of 2,500. The fact that Mike lived one

block from me at the time of dx is also amazing. When he was dxed his son came

over and got my binder that I had been putting all my CML info in.

I see his wife all the time and keep up with Mike's progress. He was referred to

an onc in Spokane who was wise enoguh to send him along to OHSU to see one of

Dr. Druker's colleagues. He is doing well now, after some initial problems.

Another case was the husband of one of our nurses here. He had a BMT a few years

back though. What is strange is that we both lived in previous mining

communities in north central Idaho and now live downstream from a Superfund

site.

Take care,

Zazzy

[ ] Gleevec Side Effects

Greetings:

I am a newbie just having been diagnosed on 12-31-07. I am on

Gleevec and have developed a rash. Also, I have a swollen face and

puffiness around my eyes. I have always had a lot of energy but do

have a lot of fatigue and can sleep right after I have had a nap.

Any similar experiences and suggestions about what to do about these

side effects?

I have been reading this site for about three weeks. I noticed that

some of your WBC figures were in the hundred thousand levels. My

highest was only 47,000 and six months prior, the WBC was in the

normal range. Is there any correlation between higher numbers and

time it takes to reach CCR?

What is your opinion about taking below 400 mg of Gleevec? My onc,

due to the rash, has reduced my level to 100, 200,or 300 mg?

I enjoy the info and support that is exchanged on this site. Reading

what you have to say is helpful to me. I found that I live close to

Zazzy and look forward to meeting her.

AndeJane

[Guest guest]

Hi Sharon... I've never had a rash from Gleevec.. it is Jan who has the rash.

Just wanted to clear that up. Hope everything is going better for you now!

Take care,

Zazzy

[ ] Gleevec Side Effects

Greetings:

I am a newbie just having been diagnosed on 12-31-07. I am on

Gleevec and have developed a rash. Also, I have a swollen face and

puffiness around my eyes. I have always had a lot of energy but do

have a lot of fatigue and can sleep right after I have had a nap.

Any similar experiences and suggestions about what to do about these

side effects?

I have been reading this site for about three weeks. I noticed that

some of your WBC figures were in the hundred thousand levels. My

highest was only 47,000 and six months prior, the WBC was in the

normal range. Is there any correlation between higher numbers and

time it takes to reach CCR?

What is your opinion about taking below 400 mg of Gleevec? My onc,

due to the rash, has reduced my level to 100, 200,or 300 mg?

I enjoy the info and support that is exchanged on this site. Reading

what you have to say is helpful to me. I found that I live close to

Zazzy and look forward to meeting her.

AndeJane

[Guest guest]

Sorry Zazzy,

I get confused sometimes while reading on this site.

Well Jan that was meant for you.

Sharon

_____

From: [mailto: ] On Behalf Of Carol

Hanson

Sent: Tuesday, March 11, 2008 8:19 AM

Subject: Re: [ ] Gleevec Side Effects

Hi Sharon... I've never had a rash from Gleevec.. it is Jan who has the

rash. Just wanted to clear that up. Hope everything is going better for you

now!

Take care,

Zazzy

[ ] Gleevec Side Effects

Greetings:

I am a newbie just having been diagnosed on 12-31-07. I am on

Gleevec and have developed a rash. Also, I have a swollen face and

puffiness around my eyes. I have always had a lot of energy but do

have a lot of fatigue and can sleep right after I have had a nap.

Any similar experiences and suggestions about what to do about these

side effects?

I have been reading this site for about three weeks. I noticed that

some of your WBC figures were in the hundred thousand levels. My

highest was only 47,000 and six months prior, the WBC was in the

normal range. Is there any correlation between higher numbers and

time it takes to reach CCR?

What is your opinion about taking below 400 mg of Gleevec? My onc,

due to the rash, has reduced my level to 100, 200,or 300 mg?

I enjoy the info and support that is exchanged on this site. Reading

what you have to say is helpful to me. I found that I live close to

Zazzy and look forward to meeting her.

AndeJane

[Guest guest]

Hi AndeJane, my wbc was only 25,000 when I was dx. I had an annual physical and

my gp sent me to a cancer specialist. I think we are both lucky that it was

detected so early, and perhaps because of this you will gave great luck in

getting into remission. I know my wbc was normal the year before, so I had cml

less than one year. Too bad we did not have Gleevec then! But lucky you! You

don't have to have that dreaded Interferon which at the time was the only help.

Yuck! After 9 weeks of that I told my onc. I would rather die than have one more

shot. Well, that was 13 yrs ago and I am still here, looking forward to the new

drugs, and saying, I am only 78, and not ready to go yet!! Bobby Doyle

andejane <andejane@...> wrote: Greetings:

I am a newbie just having been diagnosed on 12-31-07. I am on

Gleevec and have developed a rash. Also, I have a swollen face and

puffiness around my eyes. I have always had a lot of energy but do

have a lot of fatigue and can sleep right after I have had a nap.

Any similar experiences and suggestions about what to do about these

side effects?

I have been reading this site for about three weeks. I noticed that

some of your WBC figures were in the hundred thousand levels. My

highest was only 47,000 and six months prior, the WBC was in the

normal range. Is there any correlation between higher numbers and

time it takes to reach CCR?

What is your opinion about taking below 400 mg of Gleevec? My onc,

due to the rash, has reduced my level to 100, 200,or 300 mg?

I enjoy the info and support that is exchanged on this site. Reading

what you have to say is helpful to me. I found that I live close to

Zazzy and look forward to meeting her.

AndeJane

a (Bobby) Doyle

Brecksville, Ohio, USA

DX 05/1995

02/2000 - Gleevec Trial/OHSU

06/2002 - Gleevec/Trisenox Trial/OHSU

06/2003 - Gleevec/Zarnestra Trial/OHSU

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

#840 - Zavie's Zero Club

09/2006 - out of CCR

[Guest guest]

AndeJane

I forgot to tell you

The journey gets even more interesting- bone pain,

muscle spasms, cramping in fingers and toes but at

least for me most symptoms did fade in time. I still

get bone pain and cramps but not on a regular basis.

Again- hang in there warrior sister.

Chi

--- ROBERTA DOYLE <rcd1929@...> wrote:

> Hi AndeJane, my wbc was only 25,000 when I was dx.

> I had an annual physical and my gp sent me to a

> cancer specialist. I think we are both lucky that

> it was detected so early, and perhaps because of

> this you will gave great luck in getting into

> remission. I know my wbc was normal the year

> before, so I had cml less than one year. Too bad we

> did not have Gleevec then! But lucky you! You

> don't have to have that dreaded Interferon which at

> the time was the only help. Yuck! After 9 weeks of

> that I told my onc. I would rather die than have one

> more shot. Well, that was 13 yrs ago and I am still

> here, looking forward to the new drugs, and saying,

> I am only 78, and not ready to go yet!! Bobby Doyle

>

> andejane <andejane@...> wrote:

> Greetings:

> I am a newbie just having been diagnosed on

> 12-31-07. I am on

> Gleevec and have developed a rash. Also, I have a

> swollen face and

> puffiness around my eyes. I have always had a lot of

> energy but do

> have a lot of fatigue and can sleep right after I

> have had a nap.

> Any similar experiences and suggestions about what

> to do about these

> side effects?

>

> I have been reading this site for about three weeks.

> I noticed that

> some of your WBC figures were in the hundred

> thousand levels. My

> highest was only 47,000 and six months prior, the

> WBC was in the

> normal range. Is there any correlation between

> higher numbers and

> time it takes to reach CCR?

>

> What is your opinion about taking below 400 mg of

> Gleevec? My onc,

> due to the rash, has reduced my level to 100, 200,or

> 300 mg?

>

> I enjoy the info and support that is exchanged on

> this site. Reading

> what you have to say is helpful to me. I found that

> I live close to

> Zazzy and look forward to meeting her.

>

> AndeJane

>

>

>

>

>

>

> a (Bobby) Doyle

> Brecksville, Ohio, USA

> DX 05/1995

> 02/2000 - Gleevec Trial/OHSU

> 06/2002 - Gleevec/Trisenox Trial/OHSU

> 06/2003 - Gleevec/Zarnestra Trial/OHSU

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

> #840 - Zavie's Zero Club

> 09/2006 - out of CCR

>

>

> [Non-text portions of this message have been

> removed]

>

>

________________________________________________________________________________\

____

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know-it-all with Mobile. Try it now.

http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

[Guest guest]

I was dx March 2007 and went on Gleevec 400mg daily. After 2 weeks my response

was wonderful but I also developed a horrible rash. The rash started on my arms

then slowly moved to all parts of my body including my face. My arms and legs

got so bad they blistered and were unbearably itchy. Because I have diabetes I

couldn't do cortizone so I just had to grin and bear it. I also developed very

bad edema in my feet, ankles, legs, face and eyes. I stopped taking Gleevec and

it took a month for the rash to clear up. I tried to start on a lower dose of

Gleevec (300 mg) but the same symptoms started again so I stopped. I started on

Sprycel in July and was PCRU by October. I won't say that Sprycel is without

side effects but I found it so much better than Gleevec. I'm still adjusting

the dose to help with the fatigue but have maintained PCRU even when I reduced

my dosage.

Everyone reacts differently but you don't have to suffer if the side effects

get bad. There are other options out there now which are terrific. I would

suggest you talk to your onc about stopping the Gleevec until the rash is better

and then try Gleevec at 300mg. (I haven't heard of anyone going below 300mg but

ask.) If the rash seems to be returning then stop and try something else.

Sprycel has worked well for many and there is also Tasigna and other drugs in

trials that may be soon available as well. It seems like there are new

discoveries regarding CML everyday so I am really psyched that we will see a

cure in the not to distant future. Keep the faith!!

Patti

[Guest guest]

Susie, I hear you! I know what you are going through--I just ended

8+ months in bed with much the same symptoms. Slowly I've managed

to get better with lots of: Prayer, medication (Cymbalta) and the

help and support of my friends, including those in this group. I

think the Cymbalta was the thing that really turned the tide for me--

I was taking it for diabetic neuropathy in my feet, along with

neurontin and lyrica--and together, maybe the combination of those

drugs, somehow helped and I started to feel better. Now I am back

working full-time and still tired and achy sometimes, but much, much

better. Talk to your doctor about Cymbalta. It may be depression

is causing the problem, it may be some biochemical thing that

happens that helps with pain and digestive problems. I still

have " diarrhea days " and I keep imodium in my purse at all times. I

rely on it to stop things before they get out of hand. Good days

number many more than bad now--so hang in there. God is watching

and he loves you! We are here to listen and support any way we can.

Tell your doctor about how awful you are feeling and I know there

are medical interventions that can help. Try walking a little bit

every day--get some sun on your face (or rain if it is raining).

Try to get outside a bit every single day. Take Vitamin D, 2000 IU

per day. It is very important and those of us in dark and rainy

parts of the world tend to be deficient in it.

I am sending a big HUG your way and hope that you will keep posting--

we will help you through the dark times...

Vicki

>

>

> Hi, my name is susie and i was diagnosed with cml november 2002. I

> know we have to be thankful for Gleevec but please can I talk to

> someone with servere vomiting, diarreah and the joint aches are

> unbearable. Im on 600 of Gleevec (was on 800 until trial finished

> october 2004) 10 sickness tabs a day and im on upto 10 pain

killers

> aday. Somedays I just dont verture out from my house due to

bathroom

> reasons and i end up in my bed with my electric blanket on three

to

> help me cope with the joint ache. Many times I walk and feel like

a 60

> year old due to joint ache and im only 41 . I also visit the

shower or

> bath many times through the night just to leaviate pain.. please

> someone talk to me....Please don't get me wrong I am thankful for

> Gleevec but does someone know of other drugs that I can take as

well

> as just to give me a little bit of quality of life....talk to

me....

>

[Guest guest]

Susie, It's been a while since I was on Gleevec, but sometimes the way you eat

has a lot to do with being sick, or not sick. Have you tried this: Eat a

little, take a pill, eat a little more, take another pill, we used to call it a

Gleevec Sandwich. Do you take 300 twice a day? And do you take it with enough

food? One day I had too light a breakfast, left the house to have my nails

done, and had to stop and toss my cookies in a parking lot right in front of a

bank!

So a full meal, or even a sandwich with a glass of milk worked well for me.

And never lie down directly after taking Gleevec, it is not a good thing to do,

can make you sick. I'm sorry, there's not much to help out with diarrhea, just

Immodium. And I never had the terrible aches and pains, not even on 800mg.

Maybe Lottie can help out there. As time went, it got better for me to handle

all the side effects, then I was thankful for Sprycel. Now I am having side

effects with Sprycel, and I think, not really sure, but I think I am looking

forward to Tasigna. If you haven't tried the Gleevec Sandwich, maybe it will

help you, more food is better than less food.....good luck, Bobby

vickistu <vickistu@...> wrote:

Susie, I hear you! I know what you are going through--I just ended

8+ months in bed with much the same symptoms. Slowly I've managed

to get better with lots of: Prayer, medication (Cymbalta) and the

help and support of my friends, including those in this group. I

think the Cymbalta was the thing that really turned the tide for me--

I was taking it for diabetic neuropathy in my feet, along with

neurontin and lyrica--and together, maybe the combination of those

drugs, somehow helped and I started to feel better. Now I am back

working full-time and still tired and achy sometimes, but much, much

better. Talk to your doctor about Cymbalta. It may be depression

is causing the problem, it may be some biochemical thing that

happens that helps with pain and digestive problems. I still

have " diarrhea days " and I keep imodium in my purse at all times. I

rely on it to stop things before they get out of hand. Good days

number many more than bad now--so hang in there. God is watching

and he loves you! We are here to listen and support any way we can.

Tell your doctor about how awful you are feeling and I know there

are medical interventions that can help. Try walking a little bit

every day--get some sun on your face (or rain if it is raining).

Try to get outside a bit every single day. Take Vitamin D, 2000 IU

per day. It is very important and those of us in dark and rainy

parts of the world tend to be deficient in it.

I am sending a big HUG your way and hope that you will keep posting--

we will help you through the dark times...

Vicki

>

>

> Hi, my name is susie and i was diagnosed with cml november 2002. I

> know we have to be thankful for Gleevec but please can I talk to

> someone with servere vomiting, diarreah and the joint aches are

> unbearable. Im on 600 of Gleevec (was on 800 until trial finished

> october 2004) 10 sickness tabs a day and im on upto 10 pain

killers

> aday. Somedays I just dont verture out from my house due to

bathroom

> reasons and i end up in my bed with my electric blanket on three

to

> help me cope with the joint ache. Many times I walk and feel like

a 60

> year old due to joint ache and im only 41 . I also visit the

shower or

> bath many times through the night just to leaviate pain.. please

> someone talk to me....Please don't get me wrong I am thankful for

> Gleevec but does someone know of other drugs that I can take as

well

> as just to give me a little bit of quality of life....talk to

me....

>

a (Bobby) Doyle

Brecksville, Ohio, USA

DX 05/1995

02/2000 - Gleevec Trial/OHSU

06/2002 - Gleevec/Trisenox Trial/OHSU

06/2003 - Gleevec/Zarnestra Trial/OHSU

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

#840 - Zavie's Zero Club

09/2006 - out of CCR

[Guest guest]

Susie, Get yourself to a GI!!!!! I was like you, didn't leave the house due to

severe diarrhea. One visit to the GI solved that. I was dxed with IBS-D

(Irritible bowel syndrome-diarrhea) and was prescribed Lotronex, which can only

be prescribed by a qualified GI, who is certified to prescribe it.

Lotronex was banned by the FDA a few years ago. When it first came out any docs

could prescirbe it, which they did, even to patients who were constipated. It

led to blocked bowels with some patients dying. It is only for severe diarrhea.

It has made such a change in my life!

Achiness.. oh boy can I relate to that! I am currently taking Lyrica, which is

usually prescribed for fibromyalgia. My onc prescribed it to help me until I can

get to the right doc to deal with some of my pain issues.

Right now I am waiting to see my neurologist... April 22nd! My left leg has been

numb since October. It has progressed from my ankle to my knee around

Christmastime.

Some of the drugs I take, in addition to Gleevec are: Lyrica, Oxycodone,

Piroxicam (for hyperreflexia or sudden startle syndrome), Lasix (when needed),

potassium (when I take Lasix); and Lexapro (depression).

Try buckwheat heating packs on your joints. They hold the heat in better than

rice does.

I'm not sure if my problems are caused by Gleevec. My grandmother did have

arthritis, but no one else has had the problems I've had.

Hopes this helps you!

Take care and feel better!

Zazzy

[Guest guest]

Two things. First, Zazzy are you saying OZ is down under, Australia, and if

that is what you mean, what does OZ mean? Is it a village? An area?

OK, second, have you gals ever tried Amway's Glucosamine with boswellia for

Arthritis?

Dr. Talpaz took me off Celebrex, my kids talked me into trying the

Glucosamine, and for me it works. No more pain, at all, only on a very damp

day. I'm sure if your arthritis is bad you have all tried everything on the

planet. The lady at the health food store said boswellia is an

anit-inflammatory, and said Amway's product was better than hers.

Now here's a funny! my daughter in law is a nurse, and she called me today

asking me what it was my mother in law told me to use on my breasts when my milk

came in, to stop the pain....it's been many years , but one day when I had one

of my many babies, my mil came in and said, I smell camphorated oil, are your

breasts sore? Yes, I replied, and she said, well, in MY day, when MY milk came

in my mother would take bees wax, wrap it in flannel, put it in the oven and

bake it # 325 deg. and bring it to the hospital. She would put one across one

breast and the other across the other breast and I would be just fine. My

doctor walked in the room at that point and after listening to her said, no

wonder she didn't have any more problems with the milk glands, she now had 3rd

deg. burns !! So much for old fashioned cures, although some of them did work, I

have to admit it. I have often wondered what the old dear would have put on

arthritis? she put goose grease on a sore

throat.

Well, Joan, my dil, had a patient with the same problem, and I told her I was

not sure what store she should go to for the bees wax, maybe she should try the

camphorated oil.!!

I hope you gals all feel better, does acupuncture help at all? Bobby

Carol Hanson <chanson@...> wrote:

Susie, Get yourself to a GI!!!!! I was like you, didn't leave the

house due to severe diarrhea. One visit to the GI solved that. I was dxed with

IBS-D (Irritible bowel syndrome-diarrhea) and was prescribed Lotronex, which can

only be prescribed by a qualified GI, who is certified to prescribe it.

Lotronex was banned by the FDA a few years ago. When it first came out any docs

could prescirbe it, which they did, even to patients who were constipated. It

led to blocked bowels with some patients dying. It is only for severe diarrhea.

It has made such a change in my life!

Achiness.. oh boy can I relate to that! I am currently taking Lyrica, which is

usually prescribed for fibromyalgia. My onc prescribed it to help me until I can

get to the right doc to deal with some of my pain issues.

Right now I am waiting to see my neurologist... April 22nd! My left leg has been

numb since October. It has progressed from my ankle to my knee around

Christmastime.

Some of the drugs I take, in addition to Gleevec are: Lyrica, Oxycodone,

Piroxicam (for hyperreflexia or sudden startle syndrome), Lasix (when needed),

potassium (when I take Lasix); and Lexapro (depression).

Try buckwheat heating packs on your joints. They hold the heat in better than

rice does.

I'm not sure if my problems are caused by Gleevec. My grandmother did have

arthritis, but no one else has had the problems I've had.

Hopes this helps you!

Take care and feel better!

Zazzy

[Guest guest]

G'day AndeJane and welcome.

I like you wonder about the correlation of lower blood counts and how well

we do on Glivec. Mine was only 23 ~ 23,000 US and within 1 month my bloods

were nearly normal.

I count myself very fortunate I have only had the headaches (migraines)

rather then rashes, but they seem to be resolving now. I had a 2 week break

from Glivec in the first few months, but now apart from my puffy eyes have

no real probs and I commenced Glivec late Sept 07. To me it is the devil I

know then the devil I don't! I take frusemide 20mg (fluid tablet) and

potassium supplement to help with the wonderful puffy eyes and help prevent

migraines, which does help heaps.

I had bad fatigue in the early days ~ I would lie shaking on the couch, but

that soon passed and as long as I get at least 7 hours of sleep I'm fine. I

do get tired still - but like Zazzy I made a commitment to myself that

nothing would stop me doing the things I WANT TO DO, which includes showing

my dogs and they get me out of bed every morning!

How old were you when dx? I was 50.

Talking about old time remedies - Zazzy or was it Bobby ?.....the best

remedy for nursing mothers is cabbages leaves from the freezer (ues in our

mid wards) - by crikey it is great mate! For rashes - try bicarb soda baths,

1 cup bicarb in a bath is one of the best things you can do for rashes and

aches and pains. Others say vinegar is good too.

Regards,

from Dowununder

From: [mailto: ] On Behalf Of

andejane

Sent: Tuesday, 11 March 2008 2:46 PM

Subject: [ ] Gleevec Side Effects

Greetings:

I am a newbie just having been diagnosed on 12-31-07. I am on

Gleevec and have developed a rash. Also, I have a swollen face and

puffiness around my eyes. I have always had a lot of energy but do

have a lot of fatigue and can sleep right after I have had a nap.

Any similar experiences and suggestions about what to do about these

side effects?

I have been reading this site for about three weeks. I noticed that

some of your WBC figures were in the hundred thousand levels. My

highest was only 47,000 and six months prior, the WBC was in the

normal range. Is there any correlation between higher numbers and

time it takes to reach CCR?

What is your opinion about taking below 400 mg of Gleevec? My onc,

due to the rash, has reduced my level to 100, 200,or 300 mg?

I enjoy the info and support that is exchanged on this site. Reading

what you have to say is helpful to me. I found that I live close to

Zazzy and look forward to meeting her.

AndeJane

[Guest guest]

Bobby,

I was on interferon and ARC for one entire year! From 5-24-00 to June 2001

Every single day. It was horrible to say the least and I guess that's why

some of us who been there and are now on one of the new drugs don't find the

side affects as debilitating. I see some of the trials they have now which

include interferon and I'm like " I don't think so " not unless I have to! I

will never forget that I was told I would experience mild flu like symptoms.

My first night after my first shot was the worst thing I have ever

experienced physically. I was scared to death. I woke up with a fever 104,

chills so bad and literally crawling from my bed to the bath room so that I

could vomit. Weak wasn't even close enough word to describe how horrible I

felt.

After being on the support group like this one and sharing our experiences,

together we learned how to combat the side affects the best way we could.

Benadryl, lots of water, nausea pills and anti anxiety drugs or depression

drugs. Etc. All these remedies we tested really did help many of us.

What did you do after the 13 weeks? Were you able to get in some trial?

ez

[Guest guest]

The puffiness in my eyes that I had every day for about 4 years has actually

caused my eye lid skin to stretch and become very thin. I now am asked often

if I am of some oriental origin.

Finally it subsided after learning to drink lots of water- watching my

sodium intake and I guess a bit of me just got plain use to it. I only have

it now if I happen to cry for some reason or when I am premenstrual.

I have tried everything too but have decided that it is only cosmetic and

although I must be honest and admit that some days it can bother me mentally

and emotionally- I consider the alternatives and the others who have much

more to deal with then I.

Oh by the way. I had been prescribed a very low milligram water pill to help

with the retention, but it caused me to have more severe cramping since it

depleted my potassium. Therefore, I only took them a few times.

Recently I had a Dr ask me how I handle the fluid retention and I told him I

drink lots of water and his response was " why would I add more water intake

if I had too much water already " I was confused?

However, I continue to drink lots of water because I know it flushes the

toxicity and therefore has made my side affects minimal.

ez

[Guest guest]

That was back in '95, and theyput me on hydroxyurea for the next 5 years. Then

my onc told me she was trying to get me in an ARA-C trial, I had no idea what

she meant by trial. I did not qualify, and she hemmed and hawed and I finally

got the messag I was not doing real well at all. I don't remember my labs, but I

was fortunate enough to see Dr. Druker on TV that night, talking about his

little magic orange pills, so called my dr. the next day. She said she had

already written him a letter asking to put me in his trial, I never did believe

her, I think she did that after I called her attention to Dr. Druker. That is

neither here, nor there, I did go to Portland Oregon, and I did qualify for

phase 2 of the STI571 trial. And aside from the rash from hell, and aside from

taking the next 2 months to get used to the other side effects, the drug worked

until about the summer of 2002. Then it was Gleevec and Arsenic, then in 2003

it was Gleevec and Zarnestra, both for

about 6 months each.

Then I was back on 800mg Gleevec, and got into the BMS trial for Sprycel, IN

jULY OF 2004. And here I am, most likely going to start Tasi, not sure until

the results come in from my bma, which is next week.

Those first 5 years, I never questioned my onc., I just listened, had labs

done and took my pills. It was not until after the Gleevec trial I even knew

there was a cml website. By the time I got into the BMS trial, I had an

education. I found out so much more about cml through the websites that were

available. I wasn't alone anymore, I now had a whole bunch of people to talk

to. Wish I had them in Portland.

And what was really the best thing ever, Jerry Mayfield kept a diary of his

entire journey in the BMS trial. I read every word, so I knew what to expect,

and then we all got to post our own story on our experience in the trial. And a

lot of us got to meet all the time, as we had to live in Houston in order to be

in the trial. I was only there 3 months, others, like Jerry, were there up to 10

months before they could go home and resume their normal lives. I met Lottie

there too. Lottie and I and Len Paschal, we've all had cml for 12 - 13 years,

and still get a lot of information from all the other cmlers. I can't say

enough about a good support group, all you guys and gals are just super.

GOOD ON YA !!!

ez <lmartinez@...> wrote:

Bobby,

I was on interferon and ARC for one entire year! From 5-24-00 to June 2001

Every single day. It was horrible to say the least and I guess that's why

some of us who been there and are now on one of the new drugs don't find the

side affects as debilitating. I see some of the trials they have now which

include interferon and I'm like " I don't think so " not unless I have to! I

will never forget that I was told I would experience mild flu like symptoms.

My first night after my first shot was the worst thing I have ever

experienced physically. I was scared to death. I woke up with a fever 104,

chills so bad and literally crawling from my bed to the bath room so that I

could vomit. Weak wasn't even close enough word to describe how horrible I

felt.

After being on the support group like this one and sharing our experiences,

together we learned how to combat the side affects the best way we could.

Benadryl, lots of water, nausea pills and anti anxiety drugs or depression

drugs. Etc. All these remedies we tested really did help many of us.

What did you do after the 13 weeks? Were you able to get in some trial?

ez

[Guest guest]

LINDA, I HAD LUNCH TODAY AND WE WERE COMPARING OLD FASHIONED CURES, AND ONE OF

THE GIRLS POPPED UP AND SAID, GUESS WHAT COLD CABBAGE LEAVES ARE GOOD FOR!! I

NEVER HEARD THAT ON IN MY LIFE, AND HEARD IT TWICE IN LESS THAN ONE DAY. BY

CRIKEY THAT WAS FUNNY!! (IS THAT RIGHT?)

BOBBY

Malseed <rodorbal@...> wrote:

G'day AndeJane and welcome.

I like you wonder about the correlation of lower blood counts and how well

we do on Glivec. Mine was only 23 ~ 23,000 US and within 1 month my bloods

were nearly normal.

I count myself very fortunate I have only had the headaches (migraines)

rather then rashes, but they seem to be resolving now. I had a 2 week break

from Glivec in the first few months, but now apart from my puffy eyes have

no real probs and I commenced Glivec late Sept 07. To me it is the devil I

know then the devil I don't! I take frusemide 20mg (fluid tablet) and

potassium supplement to help with the wonderful puffy eyes and help prevent

migraines, which does help heaps.

I had bad fatigue in the early days ~ I would lie shaking on the couch, but

that soon passed and as long as I get at least 7 hours of sleep I'm fine. I

do get tired still - but like Zazzy I made a commitment to myself that

nothing would stop me doing the things I WANT TO DO, which includes showing

my dogs and they get me out of bed every morning!

How old were you when dx? I was 50.

Talking about old time remedies - Zazzy or was it Bobby ?.....the best

remedy for nursing mothers is cabbages leaves from the freezer (ues in our

mid wards) - by crikey it is great mate! For rashes - try bicarb soda baths,

1 cup bicarb in a bath is one of the best things you can do for rashes and

aches and pains. Others say vinegar is good too.

Regards,

from Dowununder

From: [mailto: ] On Behalf Of

andejane

Sent: Tuesday, 11 March 2008 2:46 PM

Subject: [ ] Gleevec Side Effects

Greetings:

I am a newbie just having been diagnosed on 12-31-07. I am on

Gleevec and have developed a rash. Also, I have a swollen face and

puffiness around my eyes. I have always had a lot of energy but do

have a lot of fatigue and can sleep right after I have had a nap.

Any similar experiences and suggestions about what to do about these

side effects?

I have been reading this site for about three weeks. I noticed that

some of your WBC figures were in the hundred thousand levels. My

highest was only 47,000 and six months prior, the WBC was in the

normal range. Is there any correlation between higher numbers and

time it takes to reach CCR?

What is your opinion about taking below 400 mg of Gleevec? My onc,

due to the rash, has reduced my level to 100, 200,or 300 mg?

I enjoy the info and support that is exchanged on this site. Reading

what you have to say is helpful to me. I found that I live close to

Zazzy and look forward to meeting her.

AndeJane

[Guest guest]

He he Bobby - too right mate!

Regards,

from Downunder ....now the hairless one!

_____

From: [mailto: ] On Behalf Of

ROBERTA DOYLE

Sent: Thursday, 13 March 2008 6:53 AM

Subject: RE: [ ] Gleevec Side Effects

LINDA, I HAD LUNCH TODAY AND WE WERE COMPARING OLD FASHIONED CURES, AND ONE

OF THE GIRLS POPPED UP AND SAID, GUESS WHAT COLD CABBAGE LEAVES ARE GOOD

FOR!! I NEVER HEARD THAT ON IN MY LIFE, AND HEARD IT TWICE IN LESS THAN ONE

DAY. BY CRIKEY THAT WAS FUNNY!! (IS THAT RIGHT?)

BOBBY

[Guest guest]

Hi Bobby,

Thank you for your response last week. I appreciate

your doing so and also the others who responded to my

e-mail. We are about the same age...I am 71.

I am still fighting the rash. On Sunday when I woke

up my eyes were swollen to the degree that they were

almost shut. My hands and arms were swollen. The

rash is not as bad as it was when I got it the first

time and now is only on my hands, arms, ankles, and

chest. I was visiting friends in Canada and decided

to not take any Gleevec that day. On Monday, I

reduced my dose to 200 cause I didn't want to push it

to 300 and get the rash all over my body. I have not

been able to take 400 mg again. My doc doesn't want

me to return to 400 until I see him next week.

I have been in contact with Dr. Druker and with his

nurse Carolyn. I wish that my doc would do what Dr.

Druker says to do. I do have an appointment with Dr.

D on May 1.

Not using Gleevec with the prednisone that Druker says

to do is postponing my getting to the 400 therapeutic

dose. I know that I could develop a resistance to

Gleevec by not taking the higher amount. I keep

hoping that I am in the real early stages of CML since

I didn't have it six months prior to November when I

had a CBC and consequently have some time.

You have been through a lot for a long time. How are

you doing now?

Jan

--- ROBERTA DOYLE <rcd1929@...> wrote:

> Hi AndeJane, my wbc was only 25,000 when I was dx.

> I had an annual physical and my gp sent me to a

> cancer specialist. I think we are both lucky that

> it was detected so early, and perhaps because of

> this you will gave great luck in getting into

> remission. I know my wbc was normal the year

> before, so I had cml less than one year. Too bad we

> did not have Gleevec then! But lucky you! You

> don't have to have that dreaded Interferon which at

> the time was the only help. Yuck! After 9 weeks of

> that I told my onc. I would rather die than have one

> more shot. Well, that was 13 yrs ago and I am still

> here, looking forward to the new drugs, and saying,

> I am only 78, and not ready to go yet!! Bobby Doyle

>

> andejane <andejane@...> wrote:

> Greetings:

> I am a newbie just having been diagnosed on

> 12-31-07. I am on

> Gleevec and have developed a rash. Also, I have a

> swollen face and

> puffiness around my eyes. I have always had a lot of

> energy but do

> have a lot of fatigue and can sleep right after I

> have had a nap.

> Any similar experiences and suggestions about what

> to do about these

> side effects?

>

> I have been reading this site for about three weeks.

> I noticed that

> some of your WBC figures were in the hundred

> thousand levels. My

> highest was only 47,000 and six months prior, the

> WBC was in the

> normal range. Is there any correlation between

> higher numbers and

> time it takes to reach CCR?

>

> What is your opinion about taking below 400 mg of

> Gleevec? My onc,

> due to the rash, has reduced my level to 100, 200,or

> 300 mg?

>

> I enjoy the info and support that is exchanged on

> this site. Reading

> what you have to say is helpful to me. I found that

> I live close to

> Zazzy and look forward to meeting her.

>

> AndeJane

>

>

>

>

>

>

> a (Bobby) Doyle

> Brecksville, Ohio, USA

> DX 05/1995

> 02/2000 - Gleevec Trial/OHSU

> 06/2002 - Gleevec/Trisenox Trial/OHSU

> 06/2003 - Gleevec/Zarnestra Trial/OHSU

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

> #840 - Zavie's Zero Club

> 09/2006 - out of CCR

>

>

> [Non-text portions of this message have been

> removed]

>

>

________________________________________________________________________________\

____

Be a better friend, newshound, and

know-it-all with Mobile. Try it now.

http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

[Guest guest]

Hi Jan, I'm doing just OK. My pcr has gone up, I am visiting with Dr. Talpaz

today. The Sprycel has caused pleural effusion, so I have to take 30 mg

Prednisone a day and it is a killer! I am almost hoping he stops the Sprycel

and puts me on Tasi.

The effects of Gleevec took me 2 monthsto get used to . It was sheer hell,

but I eventually got used to even 800 mg. Takes time, with all these drugs, you

just have to go with the flow and hope things get better. If theydon't, well,

usually there are other options now. It's a lucky time now for newly dx cmlers,

great drugs are available, and if you can bear with the effects until they

subside you will be better off for it. Have to run, I'm off to Ann Arbor, MI

with my daughter Jean. Have a great day, blessings, Bobby

andejane <andejane@...> wrote:

Hi Bobby,

Thank you for your response last week. I appreciate

your doing so and also the others who responded to my

e-mail. We are about the same age...I am 71.

I am still fighting the rash. On Sunday when I woke

up my eyes were swollen to the degree that they were

almost shut. My hands and arms were swollen. The

rash is not as bad as it was when I got it the first

time and now is only on my hands, arms, ankles, and

chest. I was visiting friends in Canada and decided

to not take any Gleevec that day. On Monday, I

reduced my dose to 200 cause I didn't want to push it

to 300 and get the rash all over my body. I have not

been able to take 400 mg again. My doc doesn't want

me to return to 400 until I see him next week.

I have been in contact with Dr. Druker and with his

nurse Carolyn. I wish that my doc would do what Dr.

Druker says to do. I do have an appointment with Dr.

D on May 1.

Not using Gleevec with the prednisone that Druker says

to do is postponing my getting to the 400 therapeutic

dose. I know that I could develop a resistance to

Gleevec by not taking the higher amount. I keep

hoping that I am in the real early stages of CML since

I didn't have it six months prior to November when I

had a CBC and consequently have some time.

You have been through a lot for a long time. How are

you doing now?

Jan

--- ROBERTA DOYLE <rcd1929@...> wrote:

> Hi AndeJane, my wbc was only 25,000 when I was dx.

> I had an annual physical and my gp sent me to a

> cancer specialist. I think we are both lucky that

> it was detected so early, and perhaps because of

> this you will gave great luck in getting into

> remission. I know my wbc was normal the year

> before, so I had cml less than one year. Too bad we

> did not have Gleevec then! But lucky you! You

> don't have to have that dreaded Interferon which at

> the time was the only help. Yuck! After 9 weeks of

> that I told my onc. I would rather die than have one

> more shot. Well, that was 13 yrs ago and I am still

> here, looking forward to the new drugs, and saying,

> I am only 78, and not ready to go yet!! Bobby Doyle

>

> andejane <andejane@...> wrote:

> Greetings:

> I am a newbie just having been diagnosed on

> 12-31-07. I am on

> Gleevec and have developed a rash. Also, I have a

> swollen face and

> puffiness around my eyes. I have always had a lot of

> energy but do

> have a lot of fatigue and can sleep right after I

> have had a nap.

> Any similar experiences and suggestions about what

> to do about these

> side effects?

>

> I have been reading this site for about three weeks.

> I noticed that

> some of your WBC figures were in the hundred

> thousand levels. My

> highest was only 47,000 and six months prior, the

> WBC was in the

> normal range. Is there any correlation between

> higher numbers and

> time it takes to reach CCR?

>

> What is your opinion about taking below 400 mg of

> Gleevec? My onc,

> due to the rash, has reduced my level to 100, 200,or

> 300 mg?

>

> I enjoy the info and support that is exchanged on

> this site. Reading

> what you have to say is helpful to me. I found that

> I live close to

> Zazzy and look forward to meeting her.

>

> AndeJane

>

>

>

>

>

>

> a (Bobby) Doyle

> Brecksville, Ohio, USA

> DX 05/1995

> 02/2000 - Gleevec Trial/OHSU

> 06/2002 - Gleevec/Trisenox Trial/OHSU

> 06/2003 - Gleevec/Zarnestra Trial/OHSU

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

> #840 - Zavie's Zero Club

> 09/2006 - out of CCR

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________________

Be a better friend, newshound, and

know-it-all with Mobile. Try it now.

http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

a (Bobby) Doyle

Brecksville, Ohio, USA

DX 05/1995

02/2000 - Gleevec Trial/OHSU

06/2002 - Gleevec/Trisenox Trial/OHSU

06/2003 - Gleevec/Zarnestra Trial/OHSU

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

#840 - Zavie's Zero Club

09/2006 - out of CCR