20 replies to this topic

[chuckb2]

Hey guys, I was wondering how long after you started taking Gleevec did you start having side effects. I have only been on G a week now.

Thanks!

Chuck

[azteri]

I/ve been on it almost 2 months. i think it was about 3 weeks when edema in my legs got bad, which is the first one I remember noticing, and different ones come and ago, execpt fatique which is pretty much a constant, even though some days are worse than others. Mine seem relatively mild compared to some, although my burning, wet eyes affect my vision and I really dislike bad vision. I hope you have no or mild side effects.

I need to go take the crap now. Thanks for reminding me.

[hannibellemo]

Chuck,

I started having leg and foot cramps immediately, but I have since been taking 1000 mg calcium and 1200 IU vit D and they have almost disappeared. (I've been taking Gleevec since Jan. 6, 2009 with a break of 17 days to let my ANC recover. Then around Feb. 20 I started having excessive gas (we have no secrets or bodily function reservations on this site ) and one bout of diarrhea but I brought that on myself, I found Gleevec to be constipating at first so I was taking metamucil and 100 mg Colace. I didn't take the hint that the gurgly guts meant I needed to make a change. Now I still take metamucil because it gives bulk and I don't have diarrhea. My most recent side effect is watery eyes and puffiness in the upper inner corner of my eyelids that goes away as the day goes on. Oh, yeah, I had a couple of weeks of nausea in March, not sure where that came from but it went away. I think I'm going to have problems with neutropenia (low WBC and ANC (absolute neutraphil) for a while until my body adjusts and I get a deeper response; from what I understand that is not unusual.

That's it for me so far, I feel great, my energy level is high, I've never tanked in the RBC and hemoglobin department so I think that helps with energy. I've got a pretty positive outlook and the support we get from others on this site helps tremendously. Sorry you have to be here but you came to the right place. Good luck!

Pat

dx 12-08

Gleevec 1-09

CHR and partial CyR 4-09

[chuckb2]

Thank you very much for the info!  So far I am doing very good on Gleevec and other than upset stomach a couple of days that is about it.

Chuck

[pennyarizona]

Hi Chuck,

My name is Penny, I am going to be starting Gleevec soon and was just wondering how you have been doing with the side effects.  Did you ever have any?  What were they?  I am really nervous to start it.  I received the G a couple days ago but I just can't talk myself into taking it.  Maybe if I hear something good from you I will feel a little better about taking it.

Thanks,

Penny

[azteri]

Hi, Penny!

I'm in Arizona, too. I see on your profile you're in Chandler. I'm just outside of Phoenix in the in Youngtown. I'm sorry you're in this boat with us now. My email is k.tmunroe@yahoo.com. It's always good to find local people for support. Drop me a line if like.

[hannibellemo]

Hi, Penny,

So glad you got your G!! Maybe if you have a friend come over and stay with you while you take it the first time you will feel better. Truly, I don't think anything will happen to you, as I said I only had a tiny bit of nausea and foot cramps, but I understand the fear of taking medicine for the first time! I absolutely hate taking drugs but I've made friends with my G since I hope it will be with me for a long time. Let us know when you get your first dose down so we can celebrate with you!!

Pat

[MomMom]

Hi, Penny.  Go ahead and take the G.  I still remember last summer (by the way tomorrow is the anniversary of my diagnosis) when I started G.  The thought of taking a 'cancer' drug just made CML very real.  But, I also know it will give me years of quality life that I might not have had.  If you have side effects and you most likely will, there are many ways to overcome them.  I have been taking Gleevec at night just before bedtime with a small snack.  I don't have the nausea anymore since doing that.  If you have a sympathetic onocologist it helps to call your doc and say HELP!  I need something for ... whatever is happening at that moment!  I am praying that you have great success taking the G.  I had one 'vacation' and one episode of low RBC's.  Once that settled down, things have been a little better.  I have a lot of other "sides" but can deal with them.  Just know we are all here for you.

Blessing to you as you take this journey with us!

MomMom

[chuckb2]

Hello Penny. I can honestly say I have had no real side effects to speak of. I can tell you that Gleevec works! My counts have dropped below normal on everything but are now starting to work their way back up again to normal ranges.  The only side effects that I have had is upset stomach a few days & for some reason 1 or 2 days a week I may get nauseous after my meal but that could have to do with what I ate. I take G with my evening meal. When I first started taking Gleevec I was afraid to start because most of all the posts you read are people that are having problems. I think there are many more people taking G that are not having bad side effects than those that are having the side effects. It may be helpful to start a poll or discussion for those of us on G that are doing good. I don't think you will have any problems..

Keep me updated!

Chuck

[Susan61]

Hi Penny:

     We all know how you feel with taking that first dose.  I can still remember when I got my first 30 pills back in 2000, and I was waiting for all kinds of things to happen, and I sat there for hours and did not feel any different.

     I had some nausea, until I learned that I had to take it with a full meal.  People do it whenever they feel its more convenient for them.  I like to take mine first thing in the morning to get it over with before I get into my daily routine.  I guess I was always afraid I would forget to take it or something.  I am not a breakfast eater, but I learned to be.  I used to just try some toast and coffee, and I would get a little queasy.  I never had any vomiting, and like I said I learned to eat more before taking it.

    Some people like to eat a substantial dinner so they have plenty of food in their stomach, and then take it.

    As you can see by all the advice everyone posted, we have all been okay.

    I think it was Pat who said to have a friend or someone be there when you take your first dose.  Thats a good idea, just to have some moral support with you.  It will make you feel better.

   Start taking it so you can move on with your life and toward remission.

  God Bless You

        Susan

[pennyarizona]

Hi Everyone,

I wanted to thank you all for your kind words and support.  I think on top of being scared to start the medicines do to side effects I am also just wishing none of this was really happening.  I have been fine for 7 years and still feel fine.  I am just wishing I would wake up from a bad dream.  I don't want to take the medicine because I am scared to take ANY kind of medicine and because if I take it, it would make all this even more real then it already is.  I keep telling myself, "What if these tests are wrong?  What if it really hasn't come back?"  It is just very frustrating!!!!  Sorry to complain.  I know there are people in the world who are dealing with things way worse then me and I try to remind myself that everyday.  Well I have semi-decided to take the pill this Wed. but probably Thurs. so I will report back and let you all know how it went.  Thanks again so much!  It's so nice being able to talk to all of you.

Penny

[pennyarizona]

Hi azteri,

You are the second person I have talked to that lives in Arizona.  I have never been to Youngtown.  Have you been to City of Hope at the Good Samaritan Hospital?  That's where I had my BMT.  So how are you liking the heat we have been having?  I can't stand it!!  LOL

Take care,

Penny

[Ambermariedog]

I started Gleevec 4 years ago.  I had swelling of my ankles and around my eyes.  I was given a water pill.  It also caused my potassium to go low so I was given potassium pills.  2 years ago I went into complete remission.  I still have to rest when I get tired.

[cfoley1215]

I don't believe I had any immediate side effects to the G.  Of course, I was dx'd when my wbc was at 100,000 so I was pretty out of it as it was and the added stress of waiting for a diagnosis didn't help.  But, I know I didn't have vomiting or anything like that.  Truly, if it wasn't for the G screwing with my cognitive difficulties, I could handle the fatigue and such.  Hopefully you will be another person for whom the G doesn't make you real sick.

[elvee]

I am dx'ed with CML beginning July 09.  New to this post.  Great to see people sharing their pain and experiences.

I started G on 7/9/2009 and on it for roughly 3 weeks. First week I had some nausea but slowly went away with increased food intake before medicines.

But last two days I have severe pain near my right knee to some degree in my left knee was well (a little below the knee in the bone).

Have anyone experienced this?  I have my appointment with Onc this Thursday and am going to raise this.

Any help is appreciated.

[SunNsand]

     Today my Oncologist told me to take a 7 day vacation from Gleevec and he is lowering my dose to 300 mg. from 400 mg. I did this about 6 wks. ago and I felt better while off of it then when I started the Gleevec back up again my problems started up again. I started Gleevec in Feb. of this yr. and I did pretty well for about 4 mths. then I started having problems. My Onc said 400 mg. just might be too toxic for my body. Everyone handles meds different, if you have problems, you and your Dr. can do some tweaking. If I could go back in time, I would have always taken my Gleevec with food, I didn't most times and I think I am may be paying for it now. That's my story and probably won't be yours, everyone seems to have a different one.

Take care

Robin

[Ambermariedog]

I've been on Gleevec for four years.  Because of the medication my face and eyes were swelling, so I was given a water pill.  Because of the water pill my potassium level went very low.  I'm now having to take potassium.  I have to take my Gleevecn at night time because I get very nauseated.  My body has rejected all the nausea medication that were prescribed so I have to be very tired before I go to bed so I will fall asleep.  If I don't fall asleep quickly some times I vomit.  When I do fall asleep I sleep of 9-10 hours each night.  I have learned to not plan to much in my schedule so I won't feel overwhelmed.  In the past year I have been having migraine headaches.  It is being caused my the Gleevec.  

[Lisal]

My main side effects now are fatigue, gas and bloating.  Doctor tells me that gas and bloating are not a side effect, but I really think it is!  My skin texture on my face has changed and gotten darker-also told me that it is not a side effect!

I take G before bed with a small snack most of the time and if I don't fall asleep pretty quick, then I feel nauseous.

[Susan61]

Hi Elvee:  It seems odd everytime I welcome someone to our posts, due to it not being such a pleasant welcome.

Glad you did join us though.  It really helps, especially when you think that you might be the only one with a specific problem, and then you see others having the same thing.

     Your knee pain may not have anything to do with your CML or Medication.  When your first diagnosed, you have a tendency to think everything different is related.  I have pain in both knees for years, and its Arthritis.

    As for food and Gleevec.  Most people who have tryed to eat a light meal have complained about Nausea.

You have to find the right routine for you.  A snack might not be enough.  Some people like to take it with Dinner to be sure they have enough food in their stomach.  I have always taken mine with breakfast along with all my other medications.  If I just grab a piece of toast with coffee then I would get nausea.

   I was diagnosed in 1998, and we have a lot who were just diagnosed recently like you.  I hope you find getting on here helpful to you.

[azteri]

Sorry to hear you had to join our little club, but welcome.

I started taking gleevec in April. I had strange pains like in my shins or my shoulder but they went away in a few days or a week. then another one might show up. I try to take my g with super since that's when I eat the most. Then I try to drink water all evening. If I forget and don't take it until bedtime, I don't lay down right away because I get nausous. G can be dissolved but it tastes horrible and I don't recommend it. Everybody reacts differently. Some people say the side effects get better after a few months. Mine got better when I was on summer break for a few days but I go back to my teaching jobs in a few weeks and the stress will return so we'll see if they come back. If your knee pain is really bad and doesn't go away in a week or so, it might be something else. We get really good at listening to our bodies. I hope things go well for you.