Guest guest Posted March 22, 2011 Report Share Posted March 22, 2011 Dear Penny, It is good to hear a voice from the past. It must be beautiful in the Cayman's. Where do you get your treatment? You are one of our older subscribers, as I remember when you first wrote. You have a head start of 3 years and some of the more recent drugs that can keep you going for a long time. Let us hear from you on how you are doing from time to time, just to let us know you are o.k. Carpe Diem, Lottie Duthu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2011 Report Share Posted March 23, 2011 Dear Lot Sent from my Verizon Wireless BlackBerry [ ] Penny from Cayman's Dear Penny, It is good to hear a voice from the past. It must be beautiful in the Cayman's. Where do you get your treatment? You are one of our older subscribers, as I remember when you first wrote. You have a head start of 3 years and some of the more recent drugs that can keep you going for a long time. Let us hear from you on how you are doing from time to time, just to let us know you are o.k. Carpe Diem, Lottie Duthu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2011 Report Share Posted March 23, 2011 Dear Lottie, Where do I begin. I moved to the Cayman Islands in 1988 with my husband and our son. I am from New York and my husband moved from Cayman to New York in 1965. In 1990 we had twin girls. Halloween of 2002 I had a halloween party for the twins and I was exhausted, but having 20 12 year olds was tiring in itself, though it was fun. Then thanksgiving, xmas, new years. By the beginning of January I just didn't feel like myself but figured it was the excitement of the holidays. By February, I told my husband I was going to the doctor for I thought something wasn't right. I was feeling feverish all the time...even thought I was getting hot flashes.....he took the usual blood for bloodwork, but by the next afternoon they were panicing, my White Cells was 68,000, of course I was like give me antibiodics and i will be fine...of course that is what he did, cause you never know, but I think he new something wasn't right...(he is also a family friend, so I guess that was a bit harder). Anyway they took another bloodtest after a few days being on the antibiodics and sent it to Miami, in which they said it wasn't an infection and that I needed to get it checked out as soon as possible. By then I went online and " googled " yep...googled what would cause high white blood cells and of course Leukeima was the word. The only thing was I had no bruising, no swollen spleen, nothing but feeling like I was getting the flu. He wanted to send me to Cleveland Clinic in Florida, but I knew someone who actually had acute leukeima and had a bone marrow transplant in the 80s..I called them and Hilda told me to go to MD . If her husband had a transplant in the 80s and here we are in 2003 and he was alive and kicking I figured I had a good chance. Off we went to Houston, the twins and my husband and of course me on the 20th March. On 23rd March 2003 I was diagnosed with CML. They were great. My doctor Dr Ferrijoli told me about the trial Gleevec and of course I agreed on it. 800 mg of the orange pill. I thought this would be easy just four pills in the morning four pills at night....oh boy..I was so wrong...I think I had every side effect there was..rashes, hair loss, water retention, aching, fever..name it I had it. I stayed on the medicine though and just kept hoping i would get over it. It took a while but the majority of the side effects went away. During the beginning, I found the CML Group and Zavie and Cheryl at the time would answer my questions so patiently. I thought I would never get over the side effects...it was horrible..but I knew sooner or later I would get better and I did. I am still on 800 mg. The only side effect I have is sometimes I get tired, but who doesn't???? The twins are now 20 and starting college this year. When they graduated High School it was an emotional time for when I was diagnosed all I wanted was to see them graduate from High School, then when that happen, you start making deals like, okay let me see them through college, then marry, then children..lol..... I think things are better now for there are so many new medicines that if you can 't tolerate one you can go on another!!! This group did help me through it. I know I don't post much anymore which I should but things just have been so hectic...we moved to Florida, but still go back and forth to Cayman for we have a security company in Cayman. Sadly Cayman is no longer the Cayman it was 20 years ago, even 10 years ago. We have a high crime rate, armed robberies, house invasions, drive by shootings, gang shootings..yep no different now. Very very sad!!!! Anyway, I promise I will post from time to time...thanks so much for emailing me back!!! Warm wishes Penny From: Lottie Duthu <lotajam@...> Subject: [ ] Penny from Cayman's " CML " < > Date: Tuesday, March 22, 2011, 2:11 AM Dear Penny, It is good to hear a voice from the past. It must be beautiful in the Cayman's. Where do you get your treatment? You are one of our older subscribers, as I remember when you first wrote. You have a head start of 3 years and some of the more recent drugs that can keep you going for a long time. Let us hear from you on how you are doing from time to time, just to let us know you are o.k. Carpe Diem, Lottie Duthu Quote Link to comment Share on other sites More sharing options...
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