30 replies to this topic

[pennyarizona]

As off right now I can not afford Gleevec but if I am fortunate to receive help to pay for it I am scared to take it.  I have read many posts talking about the side effects and it scares me.  I have also read about Gleevec on its website.  When ever I have to take any kind of medicine I always first read the warnings and possible side effects.  Then I think to my self, what if those bad side effects happen to me.  It is just really scary.

[PhilB]

Hi Penny.  Please don't be scared.  Compared to what you must have been through with the chemo before transplant and any GVHD issues afterwards you will almost certainly find Gleevec a walk in the park.

Severe side effects are rare and the mild to moderate ones that people do get are something that people really do cope with very well in the scheme of things  (even if we do all like to have a good moan!).  The leaflet with any drug always lists every side effect they can think of just in case, largely at the insisence of their lawyers.  As you are being picked up very early with a very low number of leukemic cells you should hopefully avoid the bone pain that is the worst thing many people suffer.  Get the financial assistance sorted but don't worry about actually taking the pills (although do make sure you lay in a good supply of toilet paper for the most likely side effect!)

[pennyarizona]

Thanks PhilB!  You made me laugh there at the end of your post.    I feel a little better now and I am glad I found this discussion board.  It is good being able to talk to people who are dealing with the same things you are dealing with.  It's comforting. 

[simone4]

Penny, I understand your fear.  I waited two days with Gleevec in the cupboard

before I would take it.  I asked a friend to come over and have a light dinner with

me while I took it.  We talked about my cats (I had them on the dining room table

for support), and we laughed a bit.  I was a "mess" that day, but I took the pill

and I was still the same person I was the night before when I showered.  I thought

my world would come crumbling down around me, but it didn't.  No nausea, no vomiting

but some bone pain in my legs in the evening.  I watched T.V. during that time and

realized that all those side effects that had scared me were just there to protect the

drug company.  Those first few weeks were a bit painful, but be brave- you have

a family that will be there with you for your  first "Gleevec" dinner and they will take care

of you.

I will be thinking of you and wishing away your fears.

Simone

[Susan61]

Dear Penny:

     Its natural to be scared.  Think positive thoughts.  I can tell you  have a lot of faith, and it will

get you through.  Every one of us has different side effects, and if you keep posting to us we will

be here to help you.

    I can only tell  you about my experience, and I am one who does not tolerate medication well at all.

I have been taking Gleevec 400mg. since October of 2000.  I was diagnosed in 1998, and I had no match

for a transplant.  They did not want  me to go with a unrelated donor, and that really scared me.  I thought

how can a pill save my life versus a transplant.  It just seemed so unreal that this new treatment would

work.  Even my Oncologist thought it would not work.  It was in clinical trial when I started, so it was

not even approved by the FDA at that time.

   I wrote all this to you, in hoping that it would relieve some of your worries.  You can write to me

personally if you need to talk.   suzzienovember@yahoo.com

                                                          GOD BLESS YOU

[SunNsand]

  The first pill can be intimidating. I waited a few days until the weekend just in case I grew two more heads or something equally teriffying happened to me, it WAS scary. We went out to dinner on a Friday night, drank a toast(diet Cokes) to my new BFF, Ms. Gleevec, then I swallowed.  It's funny now but we all just stared at each other. I still have only one head, nothing exciting happened. I do have side effects but they seem mild to me after reading other CMLers posts. Just take it a day at a time and talk with your Dr. about any worries you may have. I have good days when I don't think about CML for hours at a time and that wasn't the case in the beginning. It truly is a "one day at a time" task. When I had really bad days, when an entire day was too overwhelming, I would just focus on getting through the next hour. That little trick really helped me deal with stress and get through some days. I've only been on it for 3 mths. so I am far from a veteran G user but the beginning weeks have some extra challenges and stressors so I am hopeful I am seeing the light and I am hoping the same for you~ 

Robin

Dx: 2/09

[shuggins]

I hope that you understand the benefits of Gleevec, even if the side effects can be very difficult, it can very well keep you alive.  When I was trying to find ways to get the med without going bankrupt, I cried because I knew I would not live without it.  G is one of the only options to stay alive, it is something I deal with, not easily, but you have to do it.  I was diagnosed 12/08 and I'm 31 years old.  I have been better since my hospitalization, but I was real bad at dx, 650,000 white blood cell count, to the point I couldn't walk very far, breathe or sleep very well, or read print anymore...so when I say I feel alot better on the G, I'm serious, but I don't see any reason to fear the meds if they will keep ya going. My stomach is always wrong, I get charlie horses consistantly, my ankles feel like they are going to explode everytime I walk and the swelling/weigh gain are uncomfortable, but I know it's better than than letting the disease progress.  So I hope your journey is easy enough to deal with getting G and coping with it too, but I know you can handle it!!!

[chuckb2]

Penny, I have only been on Gleevec for a week now but I can honestly tell you that I have not really had any side effects to speak of.  After being put on allopurinol I actually feel better than I did before I started G.  You just have to get in the frame of mind that you are going to stay with your normal lifestyle/routine.  Mind over matter! Keep a positive outlook & pray to God for continued strength. You can do it & I have confidence in you!!

Chuck

[pennyarizona]

I just wanted to thank you all for your kind words, support, and own personal stories with Gleevec.  It has taken the edge off quite a bit.  I will let you know when I take that first pill and my experience.  I am sure I will be freaking out and want to park my car in the emergency room parking lot.  LOL  But I will be sure to let you know what happens or doesn't happen.  Thanks again so much!!

[DancingRain]

Penny,

We are all here to support you as you take that first step with Gleevec. Like many others who have posted, we have had different experiences. My oncologist told me it was well tolerated, and it has been. I've been on it for 18 months and the only side effects that is bothersome is the slight swelling around the eyes, nothing else that can't be managed.

I will be praying for strength for you!

DancingRain

[sandimartini47]

Hi Penny,

I was exactly like you; I was scared to start the gleevec when I was diagnosed in September 08.  I had the pills for a week or so and still felt nervous.  I am the type of person, like Susan, who gets reactions to medications.  One time I had a reaction to a bladder medication where my eyes went into spasms for 3 weeks; IT WAS AWFUL.  I had to stop teaching and everything.  The doctor told me that my reaction to this little purple pill for bladder was less then .005% of people.  That is how sensitive I am to medications so I told my oncologist about my apprehension and my reactions to medictions and she was great.  She said, let's try taking 200 mg first (I could do that because my WBC was under 30,000) so I had a little time at least that is what she told me.  I took 200 mg for about one week and had no problem; then my onc. told me to go to 300mg and still no side effects.  I could not believe it; I was absolutely fine.  A few days later, she started me on my full dosage at 400 mg and I had some of the same side effects that many of us has had but even though my WBC was no where near as high as a lot of people on this site, I felt tired a lot before I was diagnosed.  I have the leg and arm cramps, some night sweats (which I had actually before I started g), chills, fatigue and I am anemic but other than that I actually feel  better than I did before.  This medication will help you get better--just ask you doctor if you can start it slow and it is okay with him or her, maybe you can do that.  Good luck and God Bless, sandi

[Terrasage]

Boy, and I thought it was just me!  My "Taking of The Pill" the first time should have been a movie, with music similiar to that in Jaws.  It felt that huge and was so scary.  I didn't know if I'd immediatly start barfing, or pass out from exhaustion or what.  But I had none of it, and as a matter of fact my worst side effect is worse PMS.  Well, that's kind of bad.  But not as bad as some!

[JaniePoo2U]

Penny,

   I too was recently diagnosed with CML (4/16/10).  I have never been so frightened in all my 47 years.  When I got my first prescription about 12 days ago I had myself so worked up before I even took it that I think that was made me feel queasy with the first pill.  After that I was okay.  I still haven't gotten over the cost of it yet, but thank God for insurance.  I still cannot for the life of me see how someone can justify $4200 for a 30 day supply of a pill that someone needs to stay alive.  It didn't cost me that much through insurance, but it makes me feel for all those out there that don't have insurance.  The only side affect I have started experiencing in the past two days is some bone pain.  Just kinda feels like an aching pain.  First it was in both legs near where the top of your leg connects to the torso.  Then last night it was just my left leg in the same area and around my knee.  If this is the only side affect I get from it I'll consider myself fortunate.  I try to keep my mind off having CML, but it is so hard.  Seems I always come back to it somehow.  My husband keeps telling me we have to take it one day at a time and not worry about all the "what if's" and keep a positive attitude.  Hopefully with the support of the people on the LLS website I will be able to do that.  I need all support I can get!  Hang in there Penny....I'm right there with you!

Jan

[MACELPatient]

Your experience is very similar to mine thus far.  I am on ~40 days now with Gleevec and the only side-effects have been the minor bone pain discomfort and some swelling now under the eyes (minor).  I also consulted with my oncologist who said that given the amount of pain meds I am taking, which is minimal, I can take any OTC pain med. without any issues.  Best of luck to you in the course of your treatment.

[Trey]

For the new folks, welcome.  We have all "been there".

Here is a previous posting for the newly diagnosed:

http://community.lls.org/thread/2600?tstart=0

[JaniePoo2U]

Trey....thank you so much for that information.  That is the most positive thing I've read!!!  Good luck with your CML - here for ya whenever you need an ear although being newly diagnosed I won't have much to offer except a shoulder.

Jan

[PhilB]

I can totally understand how someone would be scared to take that first pill, but I'm amazed that everyone except me seems to have had that reaction.  For me it was much more: 'This is the drug that will fight my cancer.  I want to swallow the whole packet.  Right now'

Am I unique?  (I know, open goal for Trey)

Best to all

Phil

(And if Penny is still out there I'd love to know how you're doing)

[Tedsey]

Wow, I guess I am a little different than most people here.  I could not wait to go on it.  I was so wiped out from the 1st drug they gave me (not Gleevec).  I downed the little sucker.  However, I cannot say that I didn't keep the front door unlocked and tried to go over 911 with my just three-year-old at the time...  I have been on it for 4 months total.  I do not feel too horrible at all.  When placing my first order, the online pharmacist took it upon herself to first say that it could give me sudden cardiac arrest and I must never drink alcohol because it and Gleevec will destroy my liver (however, from what I read, it is probably a good idea to limit alcohol consumption while on the drug).

I seem to meet a lot of gloom and doomers.  However, now I know how to avoid them.  They are mostly wrong.  So, I can understand after reading all the side-effects you would get freaked out.  Over the little time I have been on the drug, and through this wonderful LLS blogspot, I have learned that the scary sice-effects are few and far between.  Like Phil said, it is mostly for litigious reasons they list all the side-effects on the insert--and more might come.  I just keep in mind that they have to figure everything into the equation when doling out a drug to the public.  Many side-effects listed could be a result of pre-existing problems or just other problems NOT related to CML or Gleevec.

Good luck to you!  I hope you can find a way to afford this drug.  The sticker price is shocking.  I am here for you.  Please keep us posted with your progress.

[CherylLynn]

Penny

I was diagnosed in Nov '09 with CML in blast crisis - as such I was put on 800 mg/day of Gleevec - twice what the average person takes if in chronic phase.

That being said, I have relatively no side-effects.  The reason I'm able to tolerate it my Dr. says is because I am conscious to drink alot of water...I drink 10-12 glasses per day.  That way it flushes it through your system.. I do suffer from the odd bout of fatigue but I make sure to get exercise, which believe it or not gives me more energy.  I have puffy eyes in the morning when I get up but they disappear shortly after.  I have no nausea and get only the odd bout of diarrhea which I think is more due to what I've eaten then the drugs.

You need to be on Gleevec asap.  It's the only drug that will keep the PH+ chromasome from producing the leukemia cells.  Everyone gets different side-effects.  A good website to check out is www.newcmldrug.com - under the CML tab you can post your side effects and many will chime in on what to do to help you cope with them...I'm sure if you post here as well we will all give you suggestions.

I do very well on Gleevec and there's no reason to think that you won't as well!

Cheryl

[JaniePoo2U]

I love, love, love your humor!!  I think I was so scared because all I could think was "chemo" pill.  I had myself convinced before I even took it that I would get sick.  I may have been a little gunshy because I just went through seeing my Mother-In-Law die from pancreatic cancer and how she was sick from "chemo".  Now that I have found this site and this wonderful group of people I know I can get through anything.  Thank you for your support.  I am thinking like you are now....this is a pill that will save my life and for that I am thankful.

Jan