Judy2 wrote:
Hi Teds, GerryL, Pam S,
I'm sitting here reading your posts and I want to express to everyone how sorry I am for all that you have gone through and all you continue to go through. There is so much I would like to say to try and comfort all of you but I am having a very difficult time posting my thoughs due to brain fog. Everyone has been so good to me and I feel very bad that I'm having a hard time offering more support right now. I hope you all understand that I am thinking of you, care about you and wishing I had more to offer.
Judy
Hi Judy2,
Have you talked to the doctor about the brain fog? I think Scuba is on 20 mg Sprycel. Does your onc think you can eventually lower your dose too, and maybe you won't have the brain fog, or maybe it will just take time? I know it is bad to deal with it.
I do remember that first year I was on Gleevec, brain fog and my balance were terrible. I was almost afraid to go anywhere. Sometimes when I would complain to my onc would, she make me feel like my imagination was working overtime. I think perhaps my complaints were ignored, because well what you going to do? Gleevec was the only thing out then. So when I constantly complained, it was always, the onc saying things like; "with a bright sunny smile, aren't you looking wonderful today or I love that necklace" things like that. you always got the impression she didn't want to hear the complaints. ( that is until last year when she wanted me to change drugs, then her hole tune changed, aren't we tired, etc? Then I would think hum you never listen to me for 6 1/2 year now you think I look tired!! It always made feel like I was crazy or imagining things. I would rather she had said lets hope it goes away with time, if not maybe there will be another drug coming out, other then just brushing it off like I was just a complainer. It sure was NOT easy that first year on Gleevec. That is why I hate to change drugs, now, they all have their demons.
I think that it would be fair to say whatever drug you are taking, you are going to have some toxicity at least for awhile. I just feel at 64 years, I would hate to go thru all that again. In fact it causes me a lot of stress, just thinking about changing med's. Sometimes I think if I have to change med's I would just rather, say hey forget it, I'm taking nothing. and just go out and live what life I have left and feel good for awhile. But then reality set in and that gets pretty scary, all though I am not far from it.
I am so glad I will be on Medicare next January, Blue Cross of Mi UAW sucks! People complain about Medicare. I tell people it is kinda like this. Yea I get insurance but we pay cobra, are deductible and copays go up every year and we pay premiun, and my husband medicare is better then mine. I kinda like until you have a catastrophic illness you don't really know how good your insurance is. Not to mention that you have to spend hours on the phone to the insurance company with dispute and refiling claims. That Is another reason I would like to wait until next year before I even entertain the though of changing meds. My husband is on Medicare and we have never had to dispute a claim.
Well actually I am feeling pretty good today and doing a little house cleaning and it is warm out with the sun shining. In fact My Gleevec prescription does not expire until June, so I am not even going to worry about going back to the oncologist until then.
I will be praying for you brain fog to lift, soon, and for you to stay safe. It is hard to adjust to all this.
Thanks for always having something kind to say to others, while you have your own battles. You are a blessing to many.
Hugs PamSouth