20 replies to this topic

[Augustfirst2010]

Hey ya'll, thanks for answering my previous question, but some missed the second question so I thought I would re-post just that question...

Can you still work a normal "9-5" job while on Gleevec with all it's side effects?

Right now I am missing roughtly one week out of every month...so I don't know how much longer they will keep me.

Thanks for your participation...you guys are great!

[CallMeLucky]

Unfortunately the drug affects everyone differently.  So in my case, I can tell you that I still work a full time job, over 40 hours a week.  However, my side effects are not as bad as yours.  You have to be honest with yourself about the effects you have, this isn't about sucking it up.  I read the side effects you are having and it sounds like they are more sever than most.  Maybe they will settle down in time, I don't know.  As I mentioned in other thread, if it was me, I would be talking to my doctor and looking at the possibility of switching to a different drug that is not as bad.  You can always switch back to Gleevec if you find you are less tolerant to one of the newer ones, but that isn't likely, they tend to have less side effects for most.

Good luck.

[hannibellemo]

Hi, August1st-

I didn't really start having GI issues until about 6 weeks into Gleevec. My issues were mostly gas with a few "surprises" along the way. Oh and foot cramps - mostly at night. I never missed a day of work from Gleevec, I took 2 weeks off when I was diagnosed but that was it for sick leave.

Then about 8 mos. in I had to stop G due to liver toxicity. Hit me out of the blue, still wasn't sick but my AST/ALTs were very high. So I was off anything for 7 weeks waiting for those numbers to come back down. I then started 100 mg. Sprycel and really had a tough time acclimating. It took over 4 months to feel somewhat normal, my main complaint was general malaise and depression that would  come and go, also major fatigue. I did miss work then, I think almost 144 hours last calendar year, but some of that was for doctor appts. etc. There were a few days that I would just sit in my office and hope no one would come in or call with anything I had to deal with because there were days I simply couldn't function.

I'm pleased to say that I feel like I've turned a corner and most of the time I feel pretty good. I've been MMR going on 10 months. The big eye opener for me was when I was off everything for those 7 weeks - I felt fantastic! However good I feel now, I know it's just a fraction of how good I used to feel pre-CML. Nothing I can do about it though so I try not to dwell.

You do have the option of switching to a different drug. Many who switched from G to Sprycel around the same time I did, loved it and felt far better then they had on G. Like janekaye and vwojak -  they talked me through many a bad day when I was new to Sprycel. So many others were incredibly supportive on this board. That helps so much!

It's early days for you yet, you may adjust and have few to no side effects from G after a while. I hope so!

Good Luck!

Pat

[gootzeitb]

Hi .  Talking about working.. I was dx almost 2 years ago.. The first couple of months on G were tricky, sometimes I went to work for a few hours some days not at all.. I had a great boss who was very understanding. I pretty  much resumed work full time by the 3rd month.  I am 60 and have an office job but basically other than the first months I have been working full time. I like having the health insurance and def need the money.

I say it totally something you can do depending on the type of work you do etc... let us know how it goes.

[Marnie]

I teach middle school.  Can't leave the room to use the restroom whenever one needs, and it's far more than a 9-to-5.  It works for me. . .though hasn't been easy.  Only had one really bad day when things got somewhat desperate.   I have taken more annual leave days in the past 2 years than I usually do, and I'm pretty wiped out at the end of the day.  I don't spend the time that I used to working on school stuff. . .but maybe that's because I've decided that life is about living rather than working.  Still trying to find the right balance.

I've been pretty lucky and haven't had terrible side effects. . .but also I refuse to let cml change my life very much.  I've always been stubborn and it's serving me well right now.

Marnie

[Susan61]

If your having a really bad time where you are missing work, you can always let your doctor put you out on temporary disability until you get used to taking your medication.  It would be better than losing the job.  When I was diagnosed over 12 years ago, I had to do the old fashioned line of treatment until I found Gleevec.  At that time, I could not perform on the job.  I took the temporary disability, which if I can remember it was 16 weeks.

I would talk to my doctor, and my employer.  Then decide what you think you can handle.

[MJL]

Susan, how are you doing? Have not seen you post much lately. I do hope things are going alright. I am used to seeing you pop in and give support and hope to others since  joined this site back in the spring of 2009. I hope we can all support you if thats what you need. Sending only good wishes and prayers your way.

MJL.

[Augustfirst2010]

Hi all, and thanks for answering, I really didn't expect that many different answers, but like someone said, Gleevec affects everyone differently. Like I said, I am missing just about a week every month, and I believe a big part of it is my work. I am in law enforcement in a jail environment where you are constantly sitting down, getting up, walking over here and there, sitting back down again...etc. I have been lucky to a point where my desk has been an automated raise desk, so that when it has been too painful to sit anylonger, I raise the desk to standing level and I can sort of continue working. But that only lasts so long, because when my feet start aching from standing still in one place for so long, then I begin the roller-coaster up and down for the rest of the day.

That's how it was...but unfortunately, my previous work station dealt with the courts, and since I am no longer "stable" and keep calling in sick, they moved me from that postion to one where I will no longer have the "luxery" of a stand-up raisable desk when I need it...so I don't know how long this will last. Being a county employee, they give us so many sick days...so many vacation days...every year, and I have used them all up, now when I call in sick, I don't get paid for those days. That hurts, especially with four dependents and I'm the sole provider.

Anyways, I think I am going to talk to my doctor about perhaps taking a month or two off, maybe that will help. I was only out for August last hear and then tried going right back to work...evidently, maybe that wasn't the right thing to do for me.

You guys are great, thanks for all your advise!

[Susan61]

Talking to your doctor would be the best way to go right now.  If you can get the time to get yourself together and get some paid time off with temporary disability then take advantage of it.  Take as much time as they will allow.  Then see how you progress to get back to work if you can.

You probably should not have rushed back when you did, but how were you supposed to know how you were feeling.

That is what gets me annoyed with the decision makers for Disability.  They are not going through what you are, and how can they determine what you can or cannot do.  Hope you make out good, and just follow it through to get what you need.

[valiantchong]

I think it depend on individual to handle the side effect. On some people or most of the people these side effect will eventually lessen as time goes, as the body will adjust to it on some occasions.

I think diet helps, more healthy food, like vegetables and fruits, less meat or oily food will certainly help.

For me I still work 9-5 but not as energetic before one thing for sure...,,

[Augustfirst2010]

Ya, I am beginning to think that Gootzeitb hit the nail on the head..."I say it totally something you can do depending on the type of work you do."

I am in law enforcement, in a correctional facility environment...very fast paced and high stress envirnment, constantly getting up and then sitting down again and then getting up again, turning and reaching from a sitting position, etc, etc, etc. Since most of my problems are intestinal and (I don't know how else to say it) sphincter related, every time I have to stand up or sit down or move in the chair or walk long distances (from one end of the facility to another)...I am in pain. I have missed 18 days of work this year so far, and that isn't including the days I had to leave and go home early because I couldn't handle the pain any longer. I think if I have a different kind of job where I didn't have to do so much moving around constantly, and have such a high stress  environment, I think I might be better off.

Unfortunetly, jobs are scarce these days and I don't think I can just quit my current job (after 20 years) and have the necessary skills or desired experience to get hired elsewhere (my job is so specialized that it has been difficult to impossible to even land job interviews before).

Anyways, I hope all you guys had a wonderful Easter and keep close to your hearts the reason for our celebration.

Blessings to you all!

[Susan61]

Blessings to you too, and I think our beliefs get us through a lot.  Your right, it depends on the job and your age.  If you feel like you cannot do what you have been doing anymore, you have to consider where it leaves you fnancially as to looking for a easier job.  I worked in the medical field,and could not perform my job anymore.  There were no ways to accomodate me in my position to make things easier for me, and I had to leave.  Then later on I had other health issues which just reassured me that I did the right thing. So much to consider with pensions etc.

I was fortunate in the fact that I did not have any insurance with my company, but was under my husbands insurance.  So that was one issue that I did not have to consider.  Everyone's circumstances are so different, and I just wish them the best in whatever they  have to decide to do.

Hope you can find the right answers.

Susan 61

[MACELPatient]

I haven't missed a day of work due to Gleevec, minus the trips to the Doctor.

[lala]

hi----and I missed 5+ months of work!!!!  I was sick in bed for 6 weeks before diagnosis----started with a BAD case of bronchitis, then the testing began, then the diagnosis, and then many months in bed or on the couch too darn fatigued to move.  Since then, I have only worked a few hours a day.  Last year, I worked 5+ hours a day, and it almost killed me.  I have to rest all weekend so I can go back to work on Monday---so I guess everyone is different!  ......and I love love love my job......but it is an active one-----so I think that makes a huge difference---if I could sit at a desk, I might be able to work more.......

~lala

[Marnie]

I had an 8:00 blood draw this morning, and took the entire day off from work because I'm having so much trouble dealing with the stress right now.  Mostly it's the job. . .end of year at a middle school, on the contract negotiations team, geocaching club, tons of work to do for a special all-school weeklong project, grading, CSAP testing, and the list goes on.  Unfortunately, staying home today isn't helping my stress level.  Spent the whole morning working on school stuff and I'm still buried.  Gah!!  This job is killing me right now!!!  AND I'm still waiting to see if Sprycel is working!!  I either need a brain transplant right now, or I just need to be unconscious for the next month!  I have resorted to cleaning out my closet and drawers hoping to take my mind off of what I can't control.  Too early to start drinking!!!

I NEED SUMMER VACATION.. .that's the kind of 9 to 5 job I can handle.   Of course. . don't even get me started thinking about all the schoolwork I need to do over the summer. . .new math curriculum, new teaching model adopted by district, Smartboard lessons to create for the new curriculum. . . .I NEED TO BE RETIRED!!!!

[Susan61]

Cleaning out closets and drawers is exactly what I had planned for this week, how odd that you mentioned that.  Well, so far its not getting done.  I figured I would do it slowly at my own pace, but my pace is that of a snail today.  Its been so hot here past 2 days already, and holding off using the A/C so early in the season. The heat will take your energy away also.  At least in my case.  Try to relax and just do what you can and take that break when you need it.

[lala]

Marnie,  Holy cow!  Is there any way you can lighten your load?  I have had to say no to many things-----I teach 4th and 5th graders----and it is all I can do to work a few hours a day!  I used to work full time.  You sound sssssoooooo busy! Have fun cleaning the closets---I actually love doing that!!!!!!  :-)   .....i love to organize!!!!!!  :-)

[Marnie]

Thanks, lala. . .

I usually do better with dealing with things, but the past couple of weeks have taken a toll.  I used to be on every committee in our school district that there was to be on, and I've dropped off of nearly everything (time for those young, and energetic new teachers to take over). . .but you know how it goes. . if you want it done right, do it yourself.  So I stay on the really important committees.  I work in a very small metro-area school district, and because we're so small, things are pretty awful right now, due to budget cuts.  I taught 5th grade math/science for the past 10 years, and really loved it until my wonderful principal retired and a new and totally incompetent woman was hired.  She ruined the school, and all of the top-notch teachers in the building left.  Finally, I was the only one left who was not an ass-kisser.  I have trouble holding my tongue in the face of incompetence, so she made my last 3 years there hell.  Then the building closed due to budget cuts.  Luckily, she was fired (after ruining a wonderful school).  I was placed at the middle school.  Taught at this level 10 years ago and enjoyed it. . .but there's new administration here that is almost as bad as at my former school.  The lack of leadership adds so much to our plates. .. it's pretty awful.   And not knowing if Sprycel is working is just about killing me.  Had the PCR test done today, so my stress level will drop considerably in a week and a half, I'm sure.  But I'm also feeling like I need to have a BMB, since I've only had the one at diagnosis 2 years ago.  I'm stressing out over convincing my onc to do it. . .and I shouldn't stress out, because he's always very good at listening to me and doing what I want.  But I know that he feels that BMBs are not particularly useful if you are doing well.  My problem is that I keep hearing about all the new folks on here who. . zip. . got to PCRu in no time. .. and I'm still slogging along at a turtle's pace.  I am NOT USED to losing the race.  I was a competetive runner who was too stubborn to EVER come in second, dammit!!

Whew!! Sorry for my rant.  I need to mellow out. . .just don't quite know how to do it.  The glass of wine isn't helping.  In fact, I lost it a few minutes ago and had to search the entire house to find it again, sigh.

And. . .I'm out of the classroom for negotiations tomorrow, and there's no money, and insurance rates are going up dramatically, and they will bring furloughs to the table, which will affect my retirement. . .and. . . .it goes on and on. . .tomorrow will be an ugly day.  AND it's been so rainy that I can't even ride my motorcycle to work!!   I think I need to refill my wine glass.

Marnie