Side effects

[Guest guest]

Hi Troy,

It was interesting to read your post because I, like you, have had virtually

no side effects (except the loose stools). I feel so lucky after I read

about all the difficulties other people in the group are experiencing. I

would really like to know as well if there is anyone in the group who

started out with no side effects and then experienced them later in

treatment. I was DX in June 2006 and have been on gleevec (400mg) until end

of September.

Thanks to all of you who help us ³newbies² out. It really makes me feel as

if I am not fighting this battle alone.

Cam

On 11/4/06 8:20 PM, " trocan722 " <trocan722@...> wrote:

>

>

>

>

> As I have said before, I am a newbie here. Dx 07/05/06. I am a

> daily reader, but seldom respond. Like others have mentioned, it is

> a whole new world and I am trying to get a grip on whats happening,

> whats going to happen, the terminology, etc.

>

> In August, my white counts dropped dangerously low and infection set

> in. I was in the hospital for three days. A week later I was back

> in the hospital for three weeks. Apparently, my white cells had

> been keeping a really bad case of diverticulitis at bay. Now not

> only do I have the challenges of CML, but also learning to live with

> a colostomy while my colon heals. Luckily, they are going to

> reconnect my plumbing after first of the year. I know these aren't

> side effects of CML, but I do believe my white count dropping

> helped " unmask " the infection.

>

> Now I will get to my question. I started 800mg of Gleevec daily the

> last week of July. My side effects were bad but very managable all

> the same. After my release from the hospital my onc reduced my

> dosage to 600mg daily. I went for a CBC last Tuesday. My WBC was

> 2.8k but all my other counts were well in line. I was a little

> alarmed at 2.8 wbc but my onc said, most of those were " healthy "

> cells and wants me back for another CBC in two weeks.

>

> I promise I will get to my question!...haha Since dropping to the

> 600mg dose, I have no side effects, except loose stool. I feel

> great and, after reading some of the post here and the awful side

> effects some of you have, feel almost guilty for saying that. My

> question is, did anyone start out as I did and later down the road,

> the side effects set in with a vengence? Am I an exception to the

> norm or is this the calm before the storm?

>

> Everyone on this post is an inspiration to me. Side effects or not,

> my life is different than it was the Fourth of July. You all give

> me hope in one way or another and I thank you for that! Keep me in

> your prayers as I do the same for you.

>

> Take care of yourselves and thanks for " being " here!

>

> Troy

>

>

>

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[Guest guest]

Hey, Troy and Cam. My guess is that no matter what profile you ask

about, you will find someone who fits the bill. I'm one of those

who started with no side effects (other than severe nausea right

after taking my Gleevec) and then got whacked with a vengeance. I

don't want to worry you, but it does happen occasionally, although

my sense is that I'm in a small minority.

I was dx May 2005. At first, I felt so good that I was in denial

about even having an illness. After about 6 months or so on 400

mg., I started feeling extrememly fatigued and also started noticing

some cognitive effects (short term memory loss, impaired focus and

concentration). I also started getting some physical side effects

(bone pain, rashes, blistering skin, teary eyes, eye bleeds,

diarrhea). Most of the physical things I consider fairly minor and

I can deal with them. It's the fatigue and cognitive stuff that

have really affected my life and which have gotten worse over time.

You shouldn't ever feel guilty for feeling good! No one who suffers

wants to share their suffering with you or feels resentful if you

feel good. We all celebrate each other's good fortune and

commiserate where there's bad.

I pray that you always feel as good as you do now.

Warmest regards.

(Dov)

>

> >

> >

> >

> >

> > As I have said before, I am a newbie here. Dx 07/05/06. I am a

> > daily reader, but seldom respond. Like others have mentioned,

it is

> > a whole new world and I am trying to get a grip on whats

happening,

> > whats going to happen, the terminology, etc.

> >

> > In August, my white counts dropped dangerously low and infection

set

> > in. I was in the hospital for three days. A week later I was

back

> > in the hospital for three weeks. Apparently, my white cells had

> > been keeping a really bad case of diverticulitis at bay. Now not

> > only do I have the challenges of CML, but also learning to live

with

> > a colostomy while my colon heals. Luckily, they are going to

> > reconnect my plumbing after first of the year. I know these

aren't

> > side effects of CML, but I do believe my white count dropping

> > helped " unmask " the infection.

> >

> > Now I will get to my question. I started 800mg of Gleevec daily

the

> > last week of July. My side effects were bad but very managable

all

> > the same. After my release from the hospital my onc reduced my

> > dosage to 600mg daily. I went for a CBC last Tuesday. My WBC

was

> > 2.8k but all my other counts were well in line. I was a little

> > alarmed at 2.8 wbc but my onc said, most of those were " healthy "

> > cells and wants me back for another CBC in two weeks.

> >

> > I promise I will get to my question!...haha Since dropping to

the

> > 600mg dose, I have no side effects, except loose stool. I feel

> > great and, after reading some of the post here and the awful side

> > effects some of you have, feel almost guilty for saying that. My

> > question is, did anyone start out as I did and later down the

road,

> > the side effects set in with a vengence? Am I an exception to

the

> > norm or is this the calm before the storm?

> >

> > Everyone on this post is an inspiration to me. Side effects or

not,

> > my life is different than it was the Fourth of July. You all

give

> > me hope in one way or another and I thank you for that! Keep me

in

> > your prayers as I do the same for you.

> >

> > Take care of yourselves and thanks for " being " here!

> >

> > Troy

> >

> >

> >

>

>

>

> This email has been scanned by Barracuda Network's Anti-Virus and

Spam Firewall.

>

>

>

[Guest guest]

I had a very bad side effect with spycel...Shortness of breath which came on

quite suddenly, required an ambulance ride to the ER to find that both lungs had

filled up with fluid...all in less than one hour. Its one of the major side

effects listed, so watch out because this could be life threatening... only took

it for 4 weeks and am going back on Gleevec.

Margaret

<stephenraymoore@...> wrote:

wendy,

i've had some one the same side effects on sprycel also. i'm also at 140 a day.

my main complaint is the daily nausia. i can be reached at

stephenraymoore@... if you want to compare more notes. it would be nice to

talk with others experiencing the same as me. steve

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

Shape in your own image. Join our Network Research Panel today!

[Guest guest]

Margaret,

I am sorry for your experience with Sprycel, but at least you can go back on

Gleevec. From my understanding Sprycel was supposed to be a back up for

Gleevec? I for one will never stop my Gleevec unless I have to.

Terry

On 8/9/07, Margaret Peake <mpraymond@...> wrote:

>

> I had a very bad side effect with spycel...Shortness of breath which

> came on quite suddenly, required an ambulance ride to the ER to find that

> both lungs had filled up with fluid...all in less than one hour. Its one of

> the major side effects listed, so watch out because this could be life

> threatening... only took it for 4 weeks and am going back on Gleevec.

>

> Margaret

> <stephenraymoore@... <stephenraymoore%40>>

> wrote:

> wendy,

> i've had some one the same side effects on sprycel also. i'm also at 140 a

> day. my main complaint is the daily nausia. i can be reached at

> stephenraymoore@... <stephenraymoore%40> if you want to

> compare more notes. it would be nice to talk with others experiencing the

> same as me. steve

>

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

> Shape in your own image. Join our Network Research Panel today!

>

>

[Guest guest]

Margaret--Wow. 1 hour? Your lungs filled with fluid in one hour? That is

scary. We just went to see Dr. Druker 2 weeks ago, and asked him about this

side affect. We asked how often needs to be " checked " for fluid in the

lungs. He said, first that you will know if it is happening, and he also

said that since goes to the onc monthly, that as long as his onc

listens to his lungs each time (which she does do regularly), that is what

to do. We asked if needed xrays, he said no, cuz will know if it

is happening. How do they expel the fluid? And, why did you go off Gleevec

in the first place? went off due to liver intolerance.

Regards

>From: Margaret Peake <mpraymond@...>

>Reply-

>

>Subject: Re: [ ] side effects

>Date: Thu, 9 Aug 2007 15:30:06 -0700 (PDT)

>

>I had a very bad side effect with spycel...Shortness of breath which came

>on quite suddenly, required an ambulance ride to the ER to find that both

>lungs had filled up with fluid...all in less than one hour. Its one of the

>major side effects listed, so watch out because this could be life

>threatening... only took it for 4 weeks and am going back on Gleevec.

>

> Margaret

> <stephenraymoore@...> wrote:

> wendy,

>i've had some one the same side effects on sprycel also. i'm also at 140 a

>day. my main complaint is the daily nausia. i can be reached at

>stephenraymoore@... if you want to compare more notes. it would be

>nice to talk with others experiencing the same as me. steve

>

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

>Shape in your own image. Join our Network Research Panel today!

>

>

[Guest guest]

The pulmonary edema happened very quickly. My first symptom was shortness of

breath and had no notice of fluid in my lungs until that " attack " ...At the ER

they actually thought I'd had a heart attack. I'm not sure what they did to get

the fluid off, I was out of it in ICU for a couple days. Evidently the fluid

came off quickly. I went on Sprycel because of problems with side effects with

Gleevec (vomiting, nausau, abdominal pain, etc) but later found out that I had

diverticulitis and had 8 inches of my large intestine removed. Now after

recovery from that abdominal surgery and a recess from CML drugs, I'm going back

on Gleevec. We hope the problems I had before were related to the diverticulitis

not side effects of Gleevec. Only been a couple days, so far so good, hope so

because I'd have to go to one of the drugs still in clinical trials.

The moral of the story is to have very good physician's care. My problems with

diverticulitis were not diagnosed because the docs thought it was side effects

of Gleevec and so I suffered needlessly for many months.

Margaret

...

Cervera <weez_555@...> wrote:

Margaret--Wow. 1 hour? Your lungs filled with fluid in one hour? That

is

scary. We just went to see Dr. Druker 2 weeks ago, and asked him about this

side affect. We asked how often needs to be " checked " for fluid in the

lungs. He said, first that you will know if it is happening, and he also

said that since goes to the onc monthly, that as long as his onc

listens to his lungs each time (which she does do regularly), that is what

to do. We asked if needed xrays, he said no, cuz will know if it

is happening. How do they expel the fluid? And, why did you go off Gleevec

in the first place? went off due to liver intolerance.

Regards

>From: Margaret Peake <mpraymond@...>

>Reply-

>

>Subject: Re: [ ] side effects

>Date: Thu, 9 Aug 2007 15:30:06 -0700 (PDT)

>

>I had a very bad side effect with spycel...Shortness of breath which came

>on quite suddenly, required an ambulance ride to the ER to find that both

>lungs had filled up with fluid...all in less than one hour. Its one of the

>major side effects listed, so watch out because this could be life

>threatening... only took it for 4 weeks and am going back on Gleevec.

>

> Margaret

> <stephenraymoore@...> wrote:

> wendy,

>i've had some one the same side effects on sprycel also. i'm also at 140 a

>day. my main complaint is the daily nausia. i can be reached at

>stephenraymoore@... if you want to compare more notes. it would be

>nice to talk with others experiencing the same as me. steve

>

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

>Shape in your own image. Join our Network Research Panel today!

>

>

[Guest guest]

Hi Anita - at first we thought it was coincidental, but after a number of

months, we are sure it isn't. The day of the shot, I'm very sleepy, and the day

after, I have trouble focusing and being creative. I'm a writer, and we've

concluded there's no point in my trying to write the day after a shot. I can

still write, of course, buy it isn't up to my usual standard of brilliance - he

said in total modesty.

Ohldepharte

----- Original Message -----

From: dahiya

Sent: Sunday, December 16, 2007 8:28 PM

Subject: [ ] Side effects

After my first shot of xolair on last Monday, I still feel my head

heavy and my energy level gone down than before. Any one else feel the

same type of side effects? Please let me know.

Thanks,

Anita

[Guest guest]

I guess everyone is different. I have been on Xolair since September

2003 and have never have had any side effects at all. Only thing that

has happened is that I am now OFF of Prednisone (was on 40 mg a day

for a months) and I now have my life back.

Doug

Group founder

[Guest guest]

Does that mean I should wipe the top of the bottle a second time before

I withdraw the dissolved med? i.e., the packet they send me contains 6

alcohol wipes, 6 18 gauge needles, 3 26 gauge needles, 3 vials of

Xolair, and 3 vials of soluent. I pop the top on the Xolair & soluent

bottles, wipe each bottle with its own alcohol pad, (think that was in

the directions plus the nurse told me to do it) w/draw the water,

(never wipe a sharp) and stick the water needle into the Xolair bottle

where I let it drip slowly into the Xolair on its own via gravity.

Since I'm preparing 3 syringes (and bottles) for injection I figure

that I can move on to the next vial's preparation while the water is

dripping.

So, when the med is mixed and I used a NEW 16 gauge needle to w/draw

it, should I wipe with alcohol pad AGAIN? I was saving the second set

of pads to wipe the skin and press after the injection.

I also fan my arm/stomach/thigh dry after wiping w/alcohol. I'm at

home and mixing it up on my breakfast table - assume that's ok. I

always recover the needles for fear of sticking myself or husband. No

infections so far - just a couple of bruises and I don't mind.

BTW, no band-aid in the kit I get! Guess they assume that if I inject

in such a way that I bleed that it's my problem!

One thing about alcohol - it's really hard on the finger tips - dries

them out and stings any little abrasions. Probably that's one of the

reasons why nurses wear gloves.

--- In , " tiredofsteroids " <sitesee@...>

wrote:

>

> I wouldn't wipe alcohol onto the sharp (if any got carried into the

> vial from inside the needle it would inactivate a bit of the Xolair)

> but you should re-wipe the septum before introducing any needle

> again, new or used. Also, anytime you put the cover back on a sharp

> (considered to be an incorrect practice due to risk of accidental

> needlestick injury), you should lay the cover on the table and then

> ease the sharp back into the cover without holding onto the cover.

> Best by far would be to use a second 18-gauge needle to draw the

> mixed Xolair up after rewiping the septum. The risk of contamination

> is not from you but from the exposed surface of the septum, even

> though it's been protected in a sterile way until you uncap it. -Fran

>

[Guest guest]

Lottie,

Thanks for the info.I am saving it to review.Sorry you are having

the side effects during your trial.Hope things improve.

Thanks again

SharonS

In , " Lottie Duthu " <lotajam@...> wrote:

>

> Dear Sharon S,

> In reply to your post, yes, I do have side effects in my

current trial. The pain is not all related to the drug for CML. I

have arthritis and fibromyalgia. You will work out a majority of

your problems as your treatment continues. I see specialists for

everything, as I don't think an oncologist or general practioner has

all the information needed at their fingertips to treat all of our

problems that develop. If I had diabetes, I would see an

endocrinologist. I see a rheumatologist for the fibromyalgia and he

gives me Kenalog injections every 3 months. http://www.health-

reports.com/fibromyalgia.html

> There are a hundred different kinds of rheumatic diseases; one

is arthritis and the another is gout. I have seen people with gout

and their joints in their fingers and toes are so swollen and

twisted. It's possible you were misdiagnosed if you don't have the

classic signs. With treatment and diet, it can get better.

> The yeast infection may need a combination of drugs. If it

keeps coming back, the meds are not getting rid of it. Cutaneous

candidiasis involves infection of the skin with candida. It may

involve almost any skin surface on the body, but usually occurs in

warm, moist, creased areas such as armpits and groins. Cutaneous

candidiasis is fairly common.

> http://www.nlm.nih.gov/medlineplus/ency/article/000880.htm.

> Here is a website dedicated solely to yeast infections.

http://www.yeastinfectionresource.com

> Symptoms of yeast infections.

http://www.monistat.com/SignsSymptoms/ There are also yeast

infections on the skin, around the groin and armpits.

> I hope all of your problems get ironed out and we all look forward

to getting your results once you have started Gleevec.

> Best of luck to you, Sharon, all of this will take time to sink

in. You are not devoid of hope, there are good doctors and many good

drugs out there.

> Blessings and peace,

> Lottie

>

>