Hi Chrissy, and Allyson,
I was dxed in April of 04 and have been on 400mg of Gleevec since. In fact it put me in remission about a month or so after I started taking it. It really knocked me on my butt for the first several months, and my side effects were very bad. As I have said before in the past, the swelling around my eyes was very bad, along with the nausea, muscle and bone pain, etc. At first I was taking it during the day, and about 30 minutes after taking it, I would be couch bound for about three hours. I then started taking it at night before I go to bed along with something to help me sleep and that helped tremendously.
About 2 months after being on Gleevec my side effects lightened up some and I tried to go back to work the last part of June of 04. That only lasted through the first week of July of 04. The reasons were I just could not function like I use to at all. The nausea, and pain, along with my concentration made it nearly impossible to do my job. In fact I nearly made a mistake that would have cost my company about $60,000. I got it in time but that scared me to death and I realized I just couldn't do it anymore.
I haven't worked since, but the side effects I have now are being managed with medication. I take 4 500mg/7.5 Loritabs per day for my pain, and over the counter stuff like Tum's and Zantac for the nausea. I have been prescribed Xanax, but I use that at night to help me sleep. I am 5'9 and weighed around 155 to 160 before going on Gleevec, and unfortunately at the last time I was weighed I was at 137lbs. I really have a hard time eating, but I have been using some "home" remedies at night to help me eat so that I can at least gain some weight back. I work out very lightly at a gym with my fiance. That has helped my stamina some and has made me pretty much nothing but solid muscle, it is just I have little to no body fat. So I do not look like a skeleton, but I do seriously need to gain some weight.
I am very very happy for those of you that can work and function better than I can, but I don't feel sorry for myself at all anymore, because I realize there are those with CML and other diseases that have it far worse than I do. Not to mention I was very happy not to have lost my hair or anything. I consider myself lucky actually, because my side effects are now managed and I have a decent life now. Take care,
Terry
On 8/27/06, Allyson Morris <[EMAIL PROTECTED]> wrote:
Be careful mixing acidic fruits and Gleevec....that really does a number on my stomach.
From: "Chrissy" <[EMAIL PROTECTED]>
Reply-To: [email protected]
To: "CMLHope" <[email protected]>
Subject: [CMLHope] Re: Reactions...
Date: Sun, 27 Aug 2006 16:10:26 -0700
>
>Thank you Allyson! I remember you writing me in the past stating you
>did well with 800mg. I am so happy for you! I, like you, tend to take
>my pill between late morning and lunch and then another at supper. I
>have 400mg tablets, so I take one in the 'morning' and one at 'night.'
>I feel much better than I did awhile ago...just thinking about this
>time last year makes me cringe (I was in a lot of pain, especially in
>my legs, and having trouble sleeping and eating). I've been feeling
>really good for about 6 months, and of course I'm hoping that means I
>am having a good response to Gleevec and that the disease is heading
>towards remission. I had an appointment in June and was told the
>molecular study that was done showed "excellent evolution" in regards
>to my cytogenetic response. Now I have an appointment coming up and
>I'm hoping that because I'm feeling good, I will be told I am doing
>good. I would definitely say I live a 'normal life' too, besides the
>occasional nausea from taking the pill. I should, however, start
>eating a better diet. Unlike the response some people have had of
>gaining weight, I lost a great deal of weight, and got into some bad
>eating habits trying to put weight back on. Now I am a good size for
>me, but not as focused as I was pre-CML on a really healthy diet with
>lots of fresh fruit and veggies. I do try, but I don't like cooking
>much, either! Oh, well, anyhoo, that's about it for me...thank you so
>much for responding, I am glad to hear about your excellent response to
>Gleevec.
>
>Best wishes to you!
>Chrissy
>
>
>
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