47 replies to this topic

[MargieAD]

Hello,

I am new to the community here, and new to CML.

I am 41 years old, and was diagnosed earlier this summer.

It was found kind of by accident, via CBC - with increased

white blood cells and platelet counts - not enough

for my family dr. to refer me - but I pressed and was referred

anyway.

I am to start Gleevec next week, and I am not embarrassed

to say that I am scared. I don't have any symptoms now

from the CML (maybe fatigue?) ...and the idea of taking

something that could make me feel crummy (or worse)

is pretty scary. I have read the side effects and I know everyone

is different...but was wondering if someone could tell me

what to expect the first day...first week?

I work about 30 min. from home - and am wondering if on

day one I should stay at home....just in case?

For most of the summer it has been pretty easy to forget

that I have anything "wrong" with me...but we are coming up

on "D-Day" or should I say "G-Day" and now the reality is

kicking in.

I am hoping I can go about my normal daily activities....

Any words of wisdom....anything would be appreciated.

I don't know anyone who has CML or any form of Leukemia,

so this is all new to me.

thank you in advance,

Margaret

[Lori's okay]

Hi Margaret,

Welcome!  Sorry you need to join us but very glad you found us!!  This forum has been a huge help to me and I'm sure it will be to you!

Many people on G keep right up with their employment and go on pretty normally!  Some of us it hits a little harder, (I'm older than you are, 58, that may make some difference).  You'll know soon, but your relatively young age is I think a big asset.  About day one, seems reasonable to take a day to see how your stomach responds (everyone says taking G with food is a key.)  But you'll get better advice from others soon.  I'm not the best to respond since I take Tasigna instead of Gleevec.   You'll soon have answers from others who can help with that....but I'll  make some general comments. 

First, you're way lucky to catch this early.  That happened to me too, my primary was rechecking CBC for 4 months before sending me to the Oncologist.  It is a big advantage to start this early.  Starting early may make it easier and may predict a better long term outcome. 

When we start these meds, my opinion is that we start several processes at once.  There are the side effects and getting used to those.  I wish I had believed people when they say you adjust to them because we really do over a few months.

Another process is the medication killing off the leukemic cells.  Then there's our bodies re-growing the healthy bone marrow cells. All this takes energy.  This all happens pretty early in the process.  Someone on here told me that it all gets a good bit better after the first 3 months and then another bump up at 1 year.  So far that's been true for me!  I started meds in December and by March felt a big improvement.

Sorry to ramble.  Do keep in touch.  I hope this goes great for you!

Hugs,

Lori

[Badger]

When I was diagnosed a few years ago, I had already been a quadriplegic for 25 years. I never missed a day of work from the cml or Gleevec side effects. I worst thing I had to deal with was a bad case of acid reflux.

[Tom1278]

Hi Margaret,

I was diagnosed in late July 2012, and began 400mg Gleevec a few days later.  About two weeks into treatment, I had really bad muscle/joint/bone pain.  My hematologist said this was normal and should subside within a month.  It lasted only a week, and during that week, I found that Aleve knocked the pain to a low level.  Since then, I've had "twinges" of discomfort, and the Aleve knocks it right out.

About 1-2 times per week, I get nauseous after taking the pill.  It usually is minor and subsides within an hour.  Make sure you take it with a hearty meal and a full glass of water.

I'm relatively young (soon to be 34), and in otherwise good health, so I think this helped me adapt as well.  Gleevec, so far, has not forced me to change anything abouy my life or routine.

So far, I'm having a great response.  I was diagnosed with WBC at 140,000, and 12 days into treatment, it was down to 19,000.  I'm hopeful I'll have a complete hematological response at my appointment next week.

Let us know if you have any more questions.

Tom

[Rissa]

Welcome Margaret,

Everyone is different.  I can only tell you what I've experienced.  I was diagnosed April 29, 2011.  Started gleevec two weeks later.  I dreaded taking that first pill, but I didn't notice anything different until my third dose.  That's when the bone pain started.  My arms and legs hurt.  My feet and hands would cramp up.  I had edema around the eyes, my ankles got puffy too.  I had some funny bubbling of my skin once.  It wasn't that bad though.  Just weird.  The first 3 months were the worst, but I never stopped working.  Since then I've had about one month of "dry mouth", still get the occasional swollen eyes, once in a while my feet and hands cramp up.  I always take my gleevec with something starchy (bread, crackers).  If I take it with anything else I get sick, like curl up in a ball sick.  I don't take it with a full glass of water.  That also makes me sick.  My skin is very splotchy now, don't know if that's a side effect or not but I blame gleevec anyway.  I would have to say the worst thing of all is how people treat you after they find out you have CML.  Some handle the news beautifully and others not so much.  So expect some side effects, but don't worry too much about it.  You'll get through it. 

Rissa

[CindyS]

Hi Margaret,

Sorry you had to join us here!  I was diagnosed in August 2011 and started on 400mg Gleevec 9/12/11.  I was also diagnosed after a routine blood test showed an elevated white count.  I always say, I felt great until they told me I was sick!  Anyway, I had zero side effects for the first 6 weeks - some fatigue, but I was already tired from the CML so it wasn't any different.  Then it all went south - I had a lot of GI issues and had an allergic reaction to the medication - broke out in rashes, my eyes were itchy and swollen shut, my face puffed up.  All this happened right before Thanksgiving.  They took me off of Gleevec for 2 weeks and put me on steroids for 7 days.  Everything cleared up and I started back on the Gleevec.  The rash came back, but subsided after about a week.  We thought about switching to another med, but my onc thought the issues would stop and they did for the most part.  It's been almost a year and I still have some GI issues but Imodium helps with that.  Occasionally I'll get a little sick at my stomach and eating a few saltines usually takes care of that.  I'm also a lot more sensitive to the sun than I was before, which is kind of a pain. I work from home, which makes the GI issues a lot easier to deal with, I just need to always be aware of where the bathrooms are when I'm out, just in case it hits me unexpectedly.

On a positive note, I reached MMR at 6 months, even with a 2 week G break, and my one year bone marrow biopsy was clear.  Sorry to ramble so much, but to answer your question, everyone reacts differently, but for me, it took a while for the side effects to show up.  I think you should be fine to go to work.  Think positive - you may be one of the lucky ones who have no side effects - there are a few of them on the board.

Good luck! - Cindy

[CallMeLucky]

I still remember taking the first pill, I held the bottle like it was a grenade just waiting for it to explode in my hand.  I got myself together and took the pill, the rest of the day was pretty uneventful and so it was for a while.  My side effects have built up over time.  Nothing too horrible, I still go to work everyday.  Many of the side effects cycle so good days and bad.  I have some fatigue, muscle pain and sensitive skin issues.  I started my pill on the weekend in case I had an upset stomach.  I also now take my pill before I go to bed to sleep off the nausea I sometimes get about a half hour or so after I take the pill.  Some times that doesn't happen, but other times it does so I find if I take it right before I go to sleep I don't have any issue.  I try to have food in my stomach when I take it and I suggest drinking at least 8 oz of water with it.  I also try to avoid taking anything else at the same time.

Best of luck....

[TeddyB]

Yes everyone reacts differently indeed.

My journey started in april, i was dx with wbc of 270k and started 400mg Gleevec. G got my numbers down quickly but i have had a few side effects. Nothing too scary though.

• Leg pain. (Minor, went away after a few days and didnt hurt much, just annoying)
• Rash. (Very annoying, not painful, went away after a month or so)
• Eye bleed (Only one time, and didnt hurt a bit, just a bit freaky)
• Dry skin. (That has been the longest lasting side effect for me, but it is much better now)
• GI Issues (Constipation and some minor nausea, i still have a hard stomach but i dont have the nausea any more, not very much at least. I take my G at breakfast time with 2 slices of bread and a glass of apple juice + a glass of water, this works very well for me)
• Infections. (Easier to get infections, but they are manageable)
• Fatigue (A daily 30 minute walk helps with this)

It might sound bad, but it was more scary than painful, and the side effects have all gotten better with time, now i dont have much much to complain about, so hang in there, if you have any side effects they get better over time, at least they did for me

[Antilogical]

Hi, Margie. I was dx with CML in late Feb., 2012, started on Gleevec late March (insurance red tape). 

SIDE EFFECTS come & go, including fatigue (cut back my work schedule slightly), nausea (eat a cracker), rash (benadryl), bone pain (ow!), edema (pcp cut blood pressure meds), diarrhea (Imodium), dry/fragile skin (lotion).  They are all manageable - better than the alternative, I like to say.  The bone pain is interesting. I was prepping for a knee replacement when diagnosed, and now both knees have equal pain, though only 1 needs surgery.  I've just been given permission to get the "bad" one done.

RESULTS:  The Gleevec is doing it's job.  I reached CHR by 3 months, and I was close to MMR.  Just had another PCR test at 6 months, & am waiting for results.

MENTAL HEALTH:  Just after diagnosis, I used to think about the CML 24/7:  I have cancer...  I have cancer...  I have cancer....

Now I don't.  It's more like this:  I have cancer...  I have cancer...  OOOoooooh!  Chocolate!...  I have cancer....

So you see, it's no longer the only thing on my mind! 

[Cliffee]

I was dx last July 2011. I was 44 at the time. I was terrified to say the least!

Started Gleevac 400 and had almost no side effects at all. A little fatigue for the first 2-3 weeks. I also had some puffiness areound the eyes that seems to come and go. Still does especially if I don't watch my sodium intake. Other than that, absolutely nothing! I don't take any other pills for any other medical issues so that might contribute to me having zilch.

I work out 3-4 times an week and never missed a days works since starting the pill. I pray it stays this way

I have a friend here in AZ that has been taking 600mg for over 8 years and has no side effects at all either. He is in his late 50's.

It really depends on the individual. I think you are more likely to have nothing or very little than bad effects.

Just remember that your body will need to get used to it at first and don't get discouraged if you do feel something. Just concentrate on being thankfull we have these pills and just imagine if this was 20 years ago how screwed we would all be.

Cheers!

[MargieAD]

Thank you Lori,

I am very happy to find this community.

I will definitely post how it goes.

hugs!

[MargieAD]

Thank you Badger,

It is good to know that you were able to continue with work.

I get reflux now pre- Gleevec,so I know that isn't much fun, but

hopefully manageable.

[MargieAD]

Thank you Tom!

It looks like we were diagnosed around the same time.

I was diagnosed in June. I wish I had my blood work here

with me, but as I recall my counts were just a little above normal.

I am glad to know that you are doing so well on the Gleevec, that

you haven't had to change your routine, and that it seems to be working

well! All good news!

[MargieAD]

thank you Rissa!

It is so nice to get first hand accounts.

Prior to this all I had was the Gleevec website's side effects -

and reading that alone...is pretty intimidating.

I am glad to hear that things subsided for you.

I hear you on how others handle the news...it has been

interesting...yes it has.

[MargieAD]

Hello Cindy

thank you, I will definitely stay positive!

I think that will help for sure.

" I felt great until they told me I was sick!"

I can relate to that as well.

I really appreciate you sharing.

Such great news about reaching MMR and that your

biopsy was clear!

[MargieAD]

Thank you Lucky!

I felt the same way when the medicine arrived in the mail.

It is scary...not know what it will do...or when something "could" happen.

It is too bad that you aren't guaranteed after 1 week...you will know all the

side effects    It's nice to dream I guess.
It sounds like most side effects are annoying but manageable.

I will hope for that too!

[Susan61]

Hi Margaret:  Glad you joined us.  Sorry its a club nobody really wants to join, but we have a bunch of great people here who can help you with any issues you might have.  I was diagnosed with CML in 1998, but could not start Gleevec till Oct. of 2000, because it did not exist yet.  Oct. 25th of this year will be 12 years that I am on Gleevec 400mg, and it has worked for me.  I will not deny that I still get the eye edema, fatigue, and foot and leg cramps.  I also gained weight.

When I look at the alternative that I could have had, its been worth it for me.  I think some of my other health problems bother me more than my CML.  Most of us were diagnosed with a routine yearly blood test that showed a elevatec WBC,and no symptoms.  I was working hard at my  job, and I assumed the fatigue was from the job,'

    I will tell you this. I do not know what meal is more convenient for you to take your Gleevec, but be sure its a substantial meal so you can avoid the nausea that some people get.  We are all different in how we handle our TKI drug.  Some people prefer to take it with their biggest meal of the day, like your dinner.  I also developed the reflux pretty bad, but I was put on Nexium and it has stopped the problem completely.

   I remember the first day I had to start my Gleevec because it was my daughters Birthday. I sat there waiting for something unusual to happen, but nothing happened.  I felt fine.  IT was after awhile that I would get the nausea etc. and then learned how to avoid it.

  Just ask anything you want.  Never feel like its not an important question.  All questions are important to help you know how to Live With CML.

Susan

[Happycat]

Margie,

Welcome, and sorry you had to join in the first place!  That said, the people on here are great, very nice and knowledgeable, and fun, too.

First few wks were a piece of cake for me. Then the pain set in in my joints and bones. We were on vacation, which made it worse, since I couldn't call my onc for pain meds.

The pain tapered off over the next 6 wks or so. I did need some prednisone, too, to tamp down the inflammation in my bones. My counts weren't too high at dx, either, about 43K.

However, thru it all I worked full time. I crashed at home, but my dh helped out there. The only bad aprt was eating his cooking. He's much better at dialing for dinner!

I still work FT, I have a demanding job, and I 3 demanding kids. I'm in the chauffeur phase of parenting right now. I spend way too much time in the car!

HTH, must cook dinner,

Traci

[MargieAD]

Thank you Teddy B,

It is good to know that the side effects were not too scary, and

that they have been manageable.

I am of course nervous to take the first pill (tomorrow is day 1 for me.)

It will be hard for me not to sit and wonder...hmmm...what will it be?

a rash?

GI issues?

Swelling?

Will I go to bed and wake up the next day looking like Stay Puff the Marshmallow Man?

At least I know there is a good chance that whatever I experience will get better!

[MargieAD]

Thank you Antilogical!

I am looking forward to the time where this is not the only thing on my mind.

I enjoyed that over the summer...for a while because I knew I had a little

while to go until I had to start the medication...now the last week mentally

I feel a bit like a zombie...cant seem to get the "what is going to happen to me"

thoughts out of my head. I am glad to know it gets better. I just hope

the medicine does it's job! Have you received your PCR results yet?