Guest guest Posted January 17, 2011 Report Share Posted January 17, 2011 Dear Ladies, The new year is suppose to be better than this - Jimmie sick and Beth has a terrible rash. But it is the positive attitude by both of you that is going to change it around! I will keep you both in my prayers and Lottie I hope that you are doing well on Ariad. Jimmie will bounce back too. He is a wonderful husband and caregiver for you. Strong as ever to fight any of lifes challenges. Beth - Hang in there. That terrible rash is back! Ugh! The vacation from the drug should clear it up.. Stay positive and strong but get your rest too. Your body needs to fight this and that alone will wear you out. God Bless you both, Jackie S. From: bethgalliart@... <bethgalliart@...> Subject: Re: [ ] Reply to Beth about Ariad Date: Wednesday, January 12, 2011, 7:21 PM  Hi Lottie, Thank you for your kind words. I think I am coming from feeling a bit superstitious...of course, once I share with the world how great life is, something flares up and kicks me in the pants. Does that make sense? And, partially, I feel a little scared..if this doesn't work I head to transplant (I'm not aware of anything reasonable in the pipeline at the moment for T315i; but I could be wrong there, which would make me happy) My rash has gotten quite aggressive the last 48 hours and now covers my arms, chest, stomach area and is starting on my legs. I look quite attractive, let me tell you! Thankfully it is winter and I can cover up with turtlenecks and long sleeve shirts. I have been given permission to take a drug holiday starting tomorrow. I have my next round of testing on 1/26-1/28 so we will re-evaluate then. So far, my doctor has not been too excited to put me on steroids. Not sure if that is because this is a trial drug or personal preference. He was against it last summer when I had my rash and went with the drug holiday. Oh, and the fatigue has kicked in too. I agree re bumps in the road. I eternaly grateful that with age comes experience and wisdom...bumps aren't as scary as they were when I was in my 20s or 30s. I know I can ride them out and there will be the other side. (and this too, shall pass away). Oh well, frankly, ever since the discovery of my T315i mutation, I have treated every single day as a gift. I know I have many gifts ahead of me and I will get through this. As I've said before, you are such an inspiration. You keep your chin up and moving forward no matter what happens. And, I hope your driver (err, husband) is starting to feel better. :-) Beth [ ] Reply to Beth about Ariad  Dear Beth, I hope you are not feeling bad because you posted all the glowing reports about Ariad. This could happen to anyone at any time. You can treat it with prednisone or just take a vacation, either way, it will go away eventually. I know it must have startled you to see this happening after all this time. Each of us had a different body chemistry. I have learned not to be surprised at anything I see or hear. When I worked in a law office and for a judge, I heard everything and now I think I have seen everything since CML diagnosis. LOL Expect the unpredictable, and it's o.k., because I think it has happened to everyone. Every day you wake up to sunshine, that is a good day. LOL You are correct - this is just another adventure and this, too shall pass. No one knows the origin or the author of this statement, but it is so true to life. Some have attributed it to a story about King Soloman, pertaining to his personality because he was never happy. " He felt sorrow when he was happy, and sorrow when he was not, because he was unable to see his way forward. " Also, Abraham Lincoln said, in an address to the Wisconsin State Agricultural Society in Milwaukee, WI. It is said an Eastern monarch once charged his wise men to invent him a sentence, to be ever in view, and which should be true and appropriate in all times and situations. They presented him the words: " And this, too, shall pass away. " I'm sure there are other interpretions, but I think the true meaning is that we cannot be happy all of the time, there are times when we are sad, but we will live through it. I think it also signifies change, like every day is a new day. I am sure that over the millineum, many things have been said about this saying and many stories have been spun about it in every culture. I trust it to be true, as everything is subject to change. Sometimes, when we are about to pass a bump in the road, we know it will be better once we cross that bump, the ride will be smoother. So, I hope this is temporary for you and hope for you, a small bump and lots of wiggle room. Keep us informed. I don't know how many people are in this trial, but I do know that all of the slots have not been filled. If anyone is interested, they may want to inquire. I don't think you have to go to a particular institution, they do exchange slots. Phase 2 may also have more in the trial than Phase 1. From what I was told, they reserved them for patients who were non-responders or had failed other trials. It's worth looking into for this drug of the future. I missed my trip to Houston because my husband is sick and he is my driver and everything else, he fills all my needs. I just received a package from UPS and it was my month's supply of Ariad. I'm back in the game again. Today, I can truly say that " this too shall pass. " Carpe Diem, Lottie Duthu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2011 Report Share Posted January 18, 2011 Jackie--here you are cheering us up when you are the one who has been walking through fire!! Thank you for your note. I am so inspired by how well you continue to be doing as your body heals. Here's to 2011 getting itself sorted out. :-) Beth [ ] Reply to Beth about Ariad  Dear Beth, I hope you are not feeling bad because you posted all the glowing reports about Ariad. This could happen to anyone at any time. You can treat it with prednisone or just take a vacation, either way, it will go away eventually. I know it must have startled you to see this happening after all this time. Each of us had a different body chemistry. I have learned not to be surprised at anything I see or hear. When I worked in a law office and for a judge, I heard everything and now I think I have seen everything since CML diagnosis. LOL Expect the unpredictable, and it's o.k., because I think it has happened to everyone. Every day you wake up to sunshine, that is a good day. LOL You are correct - this is just another adventure and this, too shall pass. No one knows the origin or the author of this statement, but it is so true to life. Some have attributed it to a story about King Soloman, pertaining to his personality because he was never happy. " He felt sorrow when he was happy, and sorrow when he was not, because he was unable to see his way forward. " Also, Abraham Lincoln said, in an address to the Wisconsin State Agricultural Society in Milwaukee, WI. It is said an Eastern monarch once charged his wise men to invent him a sentence, to be ever in view, and which should be true and appropriate in all times and situations. They presented him the words: " And this, too, shall pass away. " I'm sure there are other interpretions, but I think the true meaning is that we cannot be happy all of the time, there are times when we are sad, but we will live through it. I think it also signifies change, like every day is a new day. I am sure that over the millineum, many things have been said about this saying and many stories have been spun about it in every culture. I trust it to be true, as everything is subject to change. Sometimes, when we are about to pass a bump in the road, we know it will be better once we cross that bump, the ride will be smoother. So, I hope this is temporary for you and hope for you, a small bump and lots of wiggle room. Keep us informed. I don't know how many people are in this trial, but I do know that all of the slots have not been filled. If anyone is interested, they may want to inquire. I don't think you have to go to a particular institution, they do exchange slots. Phase 2 may also have more in the trial than Phase 1. From what I was told, they reserved them for patients who were non-responders or had failed other trials. It's worth looking into for this drug of the future. I missed my trip to Houston because my husband is sick and he is my driver and everything else, he fills all my needs. I just received a package from UPS and it was my month's supply of Ariad. I'm back in the game again. Today, I can truly say that " this too shall pass. " Carpe Diem, Lottie Duthu Quote Link to comment Share on other sites More sharing options...
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