Suzie,
My story is kinda like yours they found my CML by accident. I weighed over 300 pounds. I had wanted to have bypass surgery the year before but my husband didnt want me to so I hadnt. Plus his new insurance wouldnt pay for it. all of a sudden in like June 2003 I was starving!!! I was craving icecream with chocolate syrup ALL the time and eating everything in site. BUT I was slowly loosing weight. My husband even commented on it that he was worried cause I was eating so much....my reply....what differance does it make.......Im LOOSING weight and besides I am HUNGRY!!!.......lol........Well I found a way to get around not having the bypass. Fundiplication! I have really bad GERD and had barretts esophagus........I researched it and found that a lot of people lost weight after having the fundiplication soooo I went to the surgeon and was scheduled the second or third week in July for the surgery. We went camping the week before I was supposed to have it. W
e got there on a Monday afternoon, it was getting ready to storm. We got the Tent set up (no air, water or lites!) just in time for a huge storm to blow in off the lake (kentucky lake) so we waited it out in the tent, feeling like we were in a steam bath. Finally we were able to come out and start trying to find dry wood to make a fire so we could cook supper......and I started feeling bad. We ate supper and then went in the tent with our daughter to play cards for a while and about 9 we laid down for the night. Now I am a BIG chicken this was only the second time I had EVER been camping and I was absolutley scared to death, I was hot and sticky and scared and just felt reaaaaalllly bad. Finally about ten I told Dale I cant take this I am too hot and I dont feel good. Lets drive BACK to Paducah and spend the night in the apartment then we can come back in the morning we will leave everything here (it was a gated campground) and he agreed up which time my daughter started having a c
ow!!! I promised her (then 12) that we would come back EARLY the next morning. So I got up about six and I felt like you know what but I got them up anyway and we headed back to the lake. By the time we got there I was having really bad cramps across my stomach but I ate breakfast and then we went to take her down to the beach to swim. We had been there for about an hour when the first "attack" hit me I had to RUN for the bathroom. I got back to the water and sat down in the shallows but the weight of the water against my stomach hurt. I went to stand up and almost fainted. That happened twice and then it was time to dash again. I had to run to the bathroom about every twenty minutes and it was uphill thru the woods. Finally we gave up and went back to the tent. I told them to play cards and let me take a nap. It was 90 degree's and I laid down freezing to death I rolled up in a big blanket and dozed off. My husband reached over and felt my forhead and said thats it were goin home.
So we packed up and went home. By friday I was soooo sick I went to the ER. My surgeon happened to be in there and checked my blood work my White count was like 20 and so he put me on an antibiotic and told me to come back to the ER to get it checked again on Sun. Well on Sun it was down to 18 so I thought okay it's gonna be alright. Wed. I went to have my pre op blood work for the next day. My surgeon called me about 7 that night and said I cant operate on you. My white count was back up to 24 so for a couple of weeks or so he checked it every week then one week he said I am sending you to see Dr. Carloss........that scared me. I knew he was an onc. Well every test Dr. Carloss ran came back neg. The very first day they stuck my finger and he came in and said well I can tell you one thing you DONT have......Leukemia! Well like I said everything kept coming back neg. So he did a BMB. Two weeks later siting in his office I thought he is gonna come in and tell me this one is negative
too and its all in my head........WRONG......for the first time he came in all serious and sat down and said well........I was wrong....you do have Leukemia......CML.........and then the gleevec journey began. I lost fifty pounds in the first six months and then gradually lost up to a total of about 80 pounds. I was so sick all the time and tired. I didnt want to eat for one I had no appetite but for another anytime I put solid food in my mouth I was in the bathroom crying and screaming 20 minutes later. Here lately I put 20 pounds back on because I was on prednisone but I have already slowly started to loose that again. Well that is my story suzie I have had every ache and pain I can think of. It has been most miserable and I envy the ones who have taken gleevec and not suffered. Wish it were I too.
Hugs,
Katy
p.s.........dont mind the weight loss though....lol......easier then bypass!!!
--
xanga.com/katybug45
xanga.com/katybug45
-------------- Original message --------------
From: "suzieq" <[EMAIL PROTECTED]>
>
> Chrissy & Terry: It amazes me when I hear of those who have been on
> Gleevec and couldn't eat or lost so much weight. I had just the
> opposite to happen to me. Before being dxed my husband & I had started
> out doing the Atkin's diet early in 2003. I lost thirty pounds and he
> lost over fifty.......never felt better in our lives. He stayed as
> strict as ever on it while I began to implement more nutritious foods
> to my diet. In the fall of that year I began to notice that I kept
> losing weight no matter what I was eating and at first I was thrilled,
> but then I begin to worry that something was not right. I had no other
> symptoms other than my "bones & joints" hurt a lot, especially when I
> would go to bed. It felt like I had bad shin splints in my lower legs.
> I just thought it was "old" age setting in as I had turned fifty. I
> never told anyone about the weight loss........was just enjoying being
> "small" once again. Our son met his future wife that fall and she went
> with us down to Florida to be with my Mom & Step-dad for Christmas
> along with both of my brothers. It was the last Christmas for my
> Stepfather and we were all together. The morning we got up to leave and
> come back to Missouri, I woke up with a terrible, terrible sinus head
> cold. It stayed on for two weeks and I coughed and coughed (like now,
> :-) ) and then about mid Jan. of 2004, I began to have this sharp pain
> under my lower rib cage on the left side. It was constant and several
> of my friends and I decided that maybe it was pluercy (sp.?), but after
> the second week I remember laying on the bed crying it hurt so bad.
> Decided to go to my doctor the next morning as a walk in patient. He
> thought I had a bad case of Diversticulitis and sent me home with two
> strong anti-biotics and told me to come back in a week. I did, and he
> said he was a little concerned as he could still feel a hard mass when
> he pressed on my side (of course I still had the pain, too) and set me
> up for a second opinion the next day. I went and he wanted to do some
> tests of which the first was a simple CBC. The other was a cat scan of
> which I had to drink all this horrible stuff before hand. That evening
> that doctor called me and scared the living daylights out of me by
> saying something like you have something really bad and I can't help
> you. Your white cell count is off the page and we're sending it out
> for another lab to count. He still wanted me to go ahead with the cat
> scan of which o nce I got to the department, he changed the test and the
> did a full upper catscan with i.v. (I wasn't prepared for that and
> almost went into hyperventilation because of my fear needles, but just
> prayed alot and God helped me through it). Two Days later my regular
> doctor called and informed me of the CML (white cell count was around
> 200,000 and spleen tripled in size) was very informative and told me
> that it was a form of Leukemia that could be controlled with medication
> and he had patients who had lived for many years. He set me up with a
> onc/hema doctor and that began my long journey. It took about another
> three or four weeks before I was able to be put on the Gleevec. My
> first few months, I did have bad nausea & diarreah as well as other
> side affects. But, my appetite wasn't bothered, in fact I noticed
> eating bananas and drinking chocolate milk seemed to be a "craving"
> like when one is pregnant. (smile) I did begin to notice the weight
> began to start up again gradually within about a month. Before that,
> I probably had lost a total of fifty to fifty-five pounds and I'm only
> five foot tall. I see pictures of myself back then and I did look ill.
> I remember my girlfriend telling me about three months before being
> dxed that I could stop the weight loss now as I was beginning to look
> sick, but I didn't believe her. I recently began to sort of watch what
> I'm eating and found that taking the Gleevec with just a snack works
> great for me instead of eating a full meal. I've dropped around ten
> pounds. I would like to take off about twenty to twenty-five more and
> stay at that weight.........I know I would feel much better. The side
> affects I've had from the Gleevec are mild now compared to how they
> were in the beginning. I still have a little s welling around the eyes
> (especially the right one for some reason) each morning, but is gone
> pretty much by mid day. Once in a while I get an occasional bout of
> mild nausea. I still have a problem with diarreah, but manage. I
> don't have too much pain any longer all though I still get occasional
> muscle cramps (calf muscle, foot, & hand cramps). I've learned to live
> with them and just make do the best I can. For those of you starting
> out, you will learn by trial & error what works best for you.
>
> God Bless You All,
> Keep Looking Up,
> Sheila W. (suizeq)
>
>
>
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