44 replies to this topic

[TeddyB]

Thank you Billie!

Gleevec is affecting my skin aswell, i look like a racoon around the eyes, this is the biggest issue i have with Gleevec so far, well that and the brain fog from time to time. The skin issues seem to come and go a bit, but now that winter is setting in, and temperatures are falling down to 10-15ºF, the skin is even more dry. In jan and feb it usually goes down to -5ºF but i hope my skin will have gotten somewhat more used to the cold by then.

I hope you find a iron supplement that works for you without the nausea. We give our 3 year old son an iron supplement on a bottle, and were told by the doc to always give it with food, maybe you could try that

Enjoy the Irish Coffee

[TeddyB]

Dan:

I personally think i would ask to be told if went above 0.5%.

But at this point its hard to tell, currently im following every number as if my life depended on it (Pun intended )

Hope you get your results back soon, please share with us when you do.

[Pin]

Great news Teddy! I am very glad to hear this today Cheers, Pin.

[Pin]

Dan - I hope your next PCR test gives you some relief - I am having the first of my (3x) monthly tests on Monday so here's hoping that both of us get good news

[LivingWellWithCML]

Thanks Pin and Teddy!  Wishing you all the best as well ...

And agreed Ray - 1.0% seems like a threshold where I (and my hematologist) would start to get concerned...

[TeddyB]

Thank you Pin

[LivingWellWithCML]

Teddy,

"racoon around the eyes"

It's minor, but I have that side effect as well.  Crazy!  Fortunately, it's pretty minor for me at 400mg ... I think I notice it more than others do ... or they just don't want to tell me, LOL -

[TeddyB]

Hehe, yeah, people dont tend to tell you stuff like than when you have cancer. Like: Hey you look like crap today, or hey you look like a wild animal. 

Well lets just embrace the new funky racoon look then, and be glad we are alive

[Trey]

You could look like crap or like a wild animal, or you could look like wild animal crap.  I could digress into scatological sciences, but will wait until Marnie sees that Moose again. 

Well, at least you don't look like this:

[GerryL]

Hi Teddy,

I still get a bit of dry skin in winter, though our winter is nothing compared to yours - I take Evening Primrose Oil, Vitamin E Oil and the Fish Oil, this seems to help with my skin. I still take everything at the opposite end of the day to the Glivec, just to be sure.

By the way, I had to go to the GP today, issues with tendons in my left foot, I feel it is Glivec related as I didn't do anything to set if off. Got my PCR results another negative, which means a bit more to me now I'm on 300mg Glivec. Next stop, appointment with my specialist at the end of the month and a conversation about stopping Glivec in October next year.

[TeddyB]

Trey: Lol, what a good way to start the day, thank you

Bille: Id sell that recliner if i were you

[TeddyB]

GerryL: None of these have interactions with G? Since you are PCRU and taking these oils i guess there arent, but did your onc say they were ok?

I take a sip of fish oil from the bottle myself every now and then, yukk, but havent tried Vit E oil or EPO.

Fish oil, mmmm.

[TeddyB]

Hehe, yes i do, its a Norwegian thing i guess. Now they have fish oil with lemon taste so that it doesnt taste so bad

When my mother and father went to school, everyone had to take fish oil, they lined up and were each fed a spoonful. Those who didnt, got physical punishment.

I give my kids a spoon of fish oil each day as well, but they have the choice not to take it if they dont want to. So far they havent said no

Good luck with the chair!

[GerryL]

Hi Teddy,

I tried to tell my current doc what supplements I was taking, he wasn't overly interested. I also listed them out with my first Hematologist and he was okay with them. I only take the recommended dose and take them at the other end of the day to the Glivec. The majority of fish oil here in Australia comes in gel tabs, but you still need to watch the brand you are taking as some can taste worse than others - particularly the ones that are supposed to leave no fishy after taste. LOL I also don't take them with any hot liquids. None of the supplements I take appear to have any impact on my Glivec uptake, even with the reduction to 300mg.

[TeddyB]

Yeah get the high quality Omega 3 gel capsules if your taking those.

Im thinking of getting a Magnesium supplement as i feel my muscles are aching a bit more than they should these days, and im already taking a Vitamin D2 on the order from my GP as i had low levels of those. Yeah, i take them before i go to bed (VitD, VitC and Fish Oil), and i take the G in the morning. Im thinking Gleevec and Fish Oil together isnt the greatest idea, hehe. I eat a lot of cheese and at least one yogurt pr day, so the calcium part should be covered through food intake. Thanks for the advice on the skin issues though, if i get worse i will definitely look into it I thought id maybe ask my GP to send me to a dermatologist to have my skin checked out, maybe they can recommend some creams or lotions that will help.

[GerryL]

I take a magnesium supplement - was on it prior to diagnosis as it was supposed to help with migraine for some people. I found the Glivec side effects slowly increased for me as time went on. Even the reduction to 300mg hasn't totally helped. I feel stronger now and have gone back to lifting light weights, but at the moment I seem to be having some issues with a tendon in my foot, which also for me, means that it will take longer to recover.

Best of luck with the dermatologist, hopefully they can help.

[TeddyB]

Thanks GerryL

[TeddyB]

Trey: One last thing.

On the front page of my test results are a few other notes that ill try to translate:

BCR-ABL Fusiontranscript (e13a2/e14a2) demostrated.

Low Quantity. Results below/outside quantifiable area.

Any idea this means?