68 replies to this topic

[------]

I think I am nervous now.  I have to wait for the pharmacy to call me about shipping it to me. 

 

I will be glad to start it so I can see what kind of side effects I am in for so I can try to adjust to them.  

[PhilB]

Great news!

 

As others have said, it's a lottery which side effects you're going to get, but if you wanted to lay in a 'Gleevec Survival Kit' for the most common ones then I'd suggest:

Cramps

Indian tonic water helps many.  Ice, a slice of lime and a big slug of gin entirely optional.

 

GI Issues

Put something to read in every loo as you may be spending more time than usual in there.  Large supplies of toilet roll, ditto immodium.  Running shoes. 

 

Welcome aboard!

[rcase13]

Running shoes, now that is funny.

We should also have a dictionary going containing the new lingo newbies like me will need to learn. Examples would be sharts, aboraly etc...

[Marnie]

PhilB and I once had a conversation regarding scuba diving while on Gleevec.  We couldn't decide which would be worse once you were zipped into your wetsuit and underwater:  a shark attack or a shart attack.  I think we came to the conclusion that both might occur simultaneously. . .the shart attack that you were prone to have in the wetsuit might bring on the shark attack as you were swimming furiously to get back to the boat to make use of the head (toilet, in sailor's terms).

[PhilB]

Depending on the size of the shark it may be the other way around.  Anything over about 7 foot is likely to bring on the sharts whether you're on Gleevec or not!

[------]

You guys are funny!  Thanks for the tips.  From one extreme to the other Hydrea had me going every 3-4 days!   Boy is this going to be interesting!  Gin is nasty! 

[Dom]

Hi Mrs DJ.  I'm new here, but I've been on Gleevec for one year now.  No side-effects, except minor swelling around the eyes.  And thanks to Gleevec, I'm now in the cytogenic response, and doing quite well.

 

Dom

[------]

WOW (had to look that up)  LOL  That is awesome!  I am kind of excited to get on it I just want to get to my new normal.  I actually already feel like I spend my entire days on the potty peeing this could get awkward for work.

 

I can deal with the puffy eyes I just don't want to gain weight or bleed.  All remains to be seen.  

[Marnie]

When I was on Gleevec, I found that my skin became quite fragile, and just about anything could give me a cut.  Shaving my legs was a disaster.  I had to resort to an electric razor.

 

I understand your worries about the job and the bathroom.  I am a teacher and can't leave the classroom at the drop of a hat.  There were a few days where it was an uncomfortable problem.  At one point I wondered if I'd have to go on disability because of it.  I just couldn't imagine filling out the paperwork.  Reason for not being able to do the job?  Because filling my pants in the middle of class wasn't appropriate.  I'm on Sprycel now, and don't have that particular inconvenience.

 

Good luck as you find your new normal.  Believe it or not, you will get to the point where you aren't thinking about cml every second of the day.  In fact, you will get to a point that the only time you think about it is when you take your pill.

 

Marnie

[------]

When I was on Gleevec, I found that my skin became quite fragile, and just about anything could give me a cut.  Shaving my legs was a disaster.  I had to resort to an electric razor.

 

I understand your worries about the job and the bathroom.  I am a teacher and can't leave the classroom at the drop of a hat.  There were a few days where it was an uncomfortable problem.  At one point I wondered if I'd have to go on disability because of it.  I just couldn't imagine filling out the paperwork.  Reason for not being able to do the job?  Because filling my pants in the middle of class wasn't appropriate.  I'm on Sprycel now, and don't have that particular inconvenience.

 

Good luck as you find your new normal.  Believe it or not, you will get to the point where you aren't thinking about cml every second of the day.  In fact, you will get to a point that the only time you think about it is when you take your pill.

 

Marnie

Thanks Marine that is very comforting to hear.  I try not to now but at the very least being at work and tired makes me think about it and of course working to get everything situated with the meds, going to appointments blah.  

 

That would have been some interesting paperwork.  Kudos to you for dealing with this while being a teacher.

[PhilB]

I forgot the fragile skin.  Mine breaks very easily and heels slowly, but it's just another of the things you come to accept.  Add some gloves for yard work to your Gleevec survival kit and, if your nails are anything like mine,  I'd recommend keeping them trimmed short so you don't keep taking lumps out of yourself with them.

 

A hat and some sunblock might also be needed when the summer arrives as many find it makes them burn more easily.  In the meantime scout out a good supplier of thermal underwear just in case as some find they feel the cold a lot more.

 

Finally,some of us also find the occasional afternoon nap becomes necessary so don't forget your teddybear!

 

Basically there is a huge long list of possible side effects, but everyone's experience is different, and they all tend to fade into insignificance compared to the overwhelming feeling of gratitude that you are living in a time when they have these amazing drugs to treat our disease.

[Marnie]

Yep. . .sunblock for sure.  I burn just THINKING about the sun.

 

Can you tell that I'm playing hookey today?  I don't usually do that, but I have such a huge load of paperwork that an annual leave day to get caught up is something I take advantage of every once in awhile. 

 

One more thought. . .it's important that you put yourself FIRST for awhile.  Many women don't do that.  You need to take care of yourself.  You need to cut yourself some slack.  You need to realize that you can't always do everything.  Learn to prioritize, and learn to let the little things go.  Life is too short to sweat the small stuff.  CML is a big deal.  For awhile.  And then it just becomes an annoyance that you have to monitor.  Get on with living and enjoying life.  You will be around for a very long time.

 

Marnie

[Antilogical]

This thread should be required reading for CML newbies.

 

The only thing I would add is:

1.  A spoonful of CHOCOLATE makes the medicine go down.

2.  So does WINE.

3.  Keep your sense of humor.  You'll need it, and so do we.

 

Welcome to The Club!

[gerry]

My supply cupboard included

a fibre supplement - helps bulk up the stool

probiotic

calcium and magnesium - take them at the other end of the day from the Gleevec

fish oil - for the skin

 

and coffee wasn't always a friend to me

[Dom]

Is anyone else having trouble with milk? Oh God, it's like a dead skunk sitting in my stomach. Started the first month I took gleevec.

[Billie Murawski]

Running shoes, now that is funny.

We should also have a dictionary going containing the new lingo newbies like me will need to learn. Examples would be sharts, aboraly etc...

Depends for traveling.

[CallMeLucky]

I remember holding my first Gleevec like a grenade. Ultimately the moment was quite unremarkable. Over time I had some fatigue and muscle cramps. I did have the sun burn and skin abrasions .
Over time the fatigue became too much and I switched to Sprycel but lots of people stay on Gleevec and many don't have stomach trouble. Everyone is different and many side effects are transient or go away so don't assume if you hit a rough patch that's going to be it for rest of life. Side effects tend to cycle for a lot of people.

[Billie Murawski]

Is anyone else having trouble with milk? Oh God, it's like a dead skunk sitting in my stomach. Started the first month I took gleevec.

Dom, I had trouble with milk and dairy products it took me a while to figure it out because cottage cheese didn't bother me. Once I cut back on the dairy I felt a lot better. I can handle it fine now but I'm on Sprycel, it seems like we exchange one s-e for another but it's well worth it and less bothersome as time goes by.

[Billie Murawski]

You guys are funny!  Thanks for the tips.  From one extreme to the other Hydrea had me going every 3-4 days!   Boy is this going to be interesting!  Gin is nasty! 

I prefer Vodka & tonic I would love to try indian tonic water. Any kind of vodka will do.

[------]

Oh my!  I will be looking back on this thread for a long time so much good information all in one place.  You all are awesome!  Thank you so much.  I think I am ready for it.  Just waiting for the pharmacy now.  The pharmacy name is Accredo.