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Hi All,

Some of you may remember me as you answered a post I had put up a couple of weeks ago regarding my sister and what seemed to be an impending Leukemia diagnosis. I did fly to Florida immediately and she was diagnosed with leukemia, AML-M3, also known I am told as APL.

She is currently being treated with ATRA and idarubicin. The ida she took every other day for 6 days and then stopped for one week and started up again. I have no idea how many times they do this. All they said was that she was going to be in the hospital for at least 6-8 weeks.

Her platelet count is running about 5-6 and that is with several transfusions of platelets a day. She went into respiratory distress and was on 15L of O2 by cannula and mask in order to keep her 02 sats above 90%. They talked about venting her because her lungs were full of pneumonia but instead used a BiPAP at night. She has been having constant nosebleeds for hours . Her mouth and throat are covered with ulcerated sores and she cannot eat. Now, over the last 36 hours, she is pouring straight blood out of her ileostomy bag. Her pulse is up to 160 and her B/P is on average 60/30. They are going to do a scope today to see if they can locate the source of the bleeding. The ileostomy was from a previous cancer diagnosis which she received radiation for but never chemo. Even though the doc says they are not related and that it is just plain bad luck, i cant help but think there is some kind of correlation there. Both the APL and the Gardners syndrome are caused by chromosomal abnormalities and I just think that it is totally bizarre that a person winds up with two different diseases because of chromosomal abnormalities.

I am writing this because I am hoping that those of you out there who are discussing APL and being in remission can share with me some of the things that you went through with your initial chemo and any complications/major side effects that you had. It seems as if everything that could go wrong with all of this has and I am just wondering if all of the difficulties she is having with her treatment will play a part in her overall prognosis. I know that chemo is rough and it sucks, but did anyone else go through so many of the major complications? Is this usual? According to her doc it is not, but I figured I would get it straight from those who have been there themselves.

Any info that anyone wants to share with me would be greatly appreciated!
My heart goes out to all of you who have fought through this illness and are in remission. You will be in my prayers that you stay that way!

P.S. Talk about bad luck......the reason I am not still with her in Florida right now is that within 12 hours after landing at the Tampa airport when I went down, I was in the ER trying to get something for this horrible headache that I had. Come to find out I had viral menengitis. Everyone in the hospital was talking about the fact that I had come down to take care of her and got sick myself. The charge nurse for the hospital that night arrranged for me to be admitted into the isolation room across the hall from my sister on the cancer floor so that we could at least look across the hall and see each other. This was great until her respiratory status went downhill and they sent her to the ICU. But before I left, everyone knew the story and did what they could to make things easier for us. I had to stay in a motel room for a week after I was discharged before I could fly home and I was only allowed to see her the last two days I was there before I flew home. I am still pretty tired but as soon as I get over this completely, I plan on flying back down.
I'm really sorry to hear your story about your sister and yourself, I will keep her and you in my prayers. GOD BLESS YOU ALL.

[QUOTE=mejcgirl24;3278390]Hi All,

Some of you may remember me as you answered a post I had put up a couple of weeks ago regarding my sister and what seemed to be an impending Leukemia diagnosis. I did fly to Florida immediately and she was diagnosed with leukemia, AML-M3, also known I am told as APL.

She is currently being treated with ATRA and idarubicin. The ida she took every other day for 6 days and then stopped for one week and started up again. I have no idea how many times they do this. All they said was that she was going to be in the hospital for at least 6-8 weeks.

Her platelet count is running about 5-6 and that is with several transfusions of platelets a day. She went into respiratory distress and was on 15L of O2 by cannula and mask in order to keep her 02 sats above 90%. They talked about venting her because her lungs were full of pneumonia but instead used a BiPAP at night. She has been having constant nosebleeds for hours . Her mouth and throat are covered with ulcerated sores and she cannot eat. Now, over the last 36 hours, she is pouring straight blood out of her ileostomy bag. Her pulse is up to 160 and her B/P is on average 60/30. They are going to do a scope today to see if they can locate the source of the bleeding. The ileostomy was from a previous cancer diagnosis which she received radiation for but never chemo. Even though the doc says they are not related and that it is just plain bad luck, i cant help but think there is some kind of correlation there. Both the APL and the Gardners syndrome are caused by chromosomal abnormalities and I just think that it is totally bizarre that a person winds up with two different diseases because of chromosomal abnormalities.

I am writing this because I am hoping that those of you out there who are discussing APL and being in remission can share with me some of the things that you went through with your initial chemo and any complications/major side effects that you had. It seems as if everything that could go wrong with all of this has and I am just wondering if all of the difficulties she is having with her treatment will play a part in her overall prognosis. I know that chemo is rough and it sucks, but did anyone else go through so many of the major complications? Is this usual? According to her doc it is not, but I figured I would get it straight from those who have been there themselves.

Any info that anyone wants to share with me would be greatly appreciated!
My heart goes out to all of you who have fought through this illness and are in remission. You will be in my prayers that you stay that way!

P.S. Talk about bad luck......the reason I am not still with her in Florida right now is that within 12 hours after landing at the Tampa airport when I went down, I was in the ER trying to get something for this horrible headache that I had. Come to find out I had viral menengitis. Everyone in the hospital was talking about the fact that I had come down to take care of her and got sick myself. The charge nurse for the hospital that night arrranged for me to be admitted into the isolation room across the hall from my sister on the cancer floor so that we could at least look across the hall and see each other. This was great until her respiratory status went downhill and they sent her to the ICU. But before I left, everyone knew the story and did what they could to make things easier for us. I had to stay in a motel room for a week after I was discharged before I could fly home and I was only allowed to see her the last two days I was there before I flew home. I am still pretty tired but as soon as I get over this completely, I plan on flying back down.[/QUOTE]





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