I have to stay with Northwestern because I'm still in a study going back to January of 2000. greenie In a message dated 6/3/2016 7:58:31 A.M. Eastern Daylight Time, [email protected] writes:
Hi Greenie. Have you ever thought of going to Moffitt? It would be closer for you and they have a great CML program. Sent from my iPhone On Jun 3, 2016, at 6:49 AM, Myvety2k via CMLHope <[email protected]_ (mailto:[email protected]) > wrote: Hi Susan, sorry your having these problems I know it can be hard to deal with. The next day I was sore from so much going on, lot's of walking having to keep up with appointment, etc. then getting back to the airport. As they say hurry up and wait. Dr. Altman is such a great person I love her to death. Always give her a hug with I see her. Well nice to hear from you and please take care of yourself. greenie In a message dated 6/2/2016 10:34:28 P.M. Eastern Daylight Time, [email protected]_ (mailto:[email protected]) writes: I'm glad you got to see our doc, Greenie! Sorry it was a hard day... I bet today was better! How is all going? We are enjoying this spring season....up here in no. Indiana. I"m struggling without medicine. Got a bad eye bleed Sunday and a rash. Then yesterday fell off a top step of a stepstool and am bruised and sore. So very thankful nothing broken. Had all kinds of suggestions on fb re. bubble wrap, etc. to keep me safe. A month ago my bcr/abl revealed 3.56. Been off med. since Dec. 28th. Took another blood test today. I have much to be thankful for and just laying kinda low for awhile. Dr. Altman is keeping in touch w me. I'm doing blood tests locally for awhile. Blessings and 18's, Susan ____________________________________ On Thursday, June 2, 2016 Myvety2k via CMLHope <[email protected]_ (mailto:[email protected]) > wrote: Hi Group, Well I awoke at 3 a.m. to get ready to fly to Chicago to see Dr. Altman, get my blood work, etc. and fly home. But when I got to the airport 2 hours early their was a line of about 100 young people that were on their way to Washington D. C.. My plane came in 35 min. late after getting fuel we had mechanical problems and that put us behind. My appointment was at 10:15 and we arrived at 8:55 a.m. and my son picked me up and got me their on time. Saw the Doctor, got my blood work which came back O. K. and Derek picked me up and took me to the airport. Another 2 1/2 wait to get through. Got ready to take off put their was a head count problem. Let's say their was 100 people aboard and the paper work showed 99. We had to start over again and called each and every one to find out the problem and the computer didn't read the persons ticket right, so took of 55 min. late. Was up at 40 thousand feet and ran in to clouds and turbulence so we dropped down to 10 thousand feet and a much smoother ride. I used to be a private pilot and I can tell you it was like riding on a roller coaster. Well anyway he made up time on the way their but we ran into thunderstorms and lightning so we circled and circled and circled until we had to fly up to Tampa, FL. to refuel. More time lost, took off again for Fort Myers which took only 26 min. it's a 2 1/2 hour drive. Landed many hours late and instead of having my wife pick me up I took a taxi home for $36.00. They wouldn't let us text or call while we were on the plane so my wife was worried sick. She called Southwest to find out what happened and gave them a piece of her mind. So life goes on and I home tired but as the song goes on (I will survive). Was a fun day, greenie In a message dated 6/1/2016 1:34:18 P.M. Eastern Daylight Time, [email protected]_ (mailto:[email protected]) writes: HI KATHY, i'm Christina, from Greece. I'm 52 years old and i have been diagnosed in 2009 when i was 45 years old. I started with Gleevec 400 mg every day for 5 1/2 years, i was in recession for 3 years so in 2015 my doctors said that i could try to stop the medicine. But after 3 months my bcr-able was 2,3. So i started tasigna 600 mg (300 mg in the morning and 300 mg in the evening). One year after i'm in recession again (the latest 6 months i'm negative, bcr-able can not be detected). I'm so happy for it and i feel great!!! But after 9 months with tasigna i get high LDL(175) and cholesterole (280) and a few pimples sebum ιn my arms. For the pimples i used an intensive exfoliating creme with olive.For the LDL i take care of my diet (only mediterranean diet, not junk food at all). My doctors told me that i don' t need a medicine for the cholisterole yet. Only swimming in the sea. walking, good diet, good psychology and faith something like an holistic approach (like HIPPOCRATES said) to this problem. For me the Gleevec effects where terrible (diarrhea, vomiting, blood -storms in my eyes ). I prefer Tasigna and i take my risks. Maybe it would be a good idea to talk once again with your doctors (dermatologist,hematologistic, gynecologist). best wishes thinking of you C. 2016-05-31 4:27 GMT+03:00 kathy walls <[email protected]_ (mailto:[email protected]) >: I'm still a newbie was diagnosed 1/9 and started tasigna on the 23rd, oh yeah I'm lucky enough to have the ph chromosome to boot. I stopped tasigna in December because of horrible side effects, I got an awful rash and cysts. Switched to Gleevev and I feel much better, but did dr said at this level i will never see remission. I'm ok with that. Quality of like is much important to me than quantity. I'm 56 I have a 4 yr old grandson and 3 month old grandson. I'd much rather a little pep in my step than being in remission but to sick to anything! Just my thoughts. We all are fighting the same fight each in our way BEST TO ALL. -18's Kate Sent from my iPhone On May 30, 2016, at 8:55 PM, Marty Gartenberg <[email protected]_ (mailto:[email protected]) > wrote: Yes Jeanie, we are still all kicking! Jeanie what happened in the past according to your oncologist about you being to old should remain in the past and I will tell you why. I also want you to think about something called BASHERT, which I have already mentioned many times. It's meaning is it was meant to be. Sound familiar? I believe that things that are meant to be are predestined. For instance this site, and everyone that reads it or posts on it are meant to be because all of us are still kicking (as you said) and we all share this disease called CML and let's not forget that. There are so many stories that surrounds us and every one of them are meant to be. We all stand here and try help each other. Why? it's because it is meant to be. We give of each other, and also to each other, and you know what I am talking about. It is all about trying to live our lives the best way that we can. Also, all of these new TKI's weren't they all predestined or if you like, meant to be? That is how I look at things, how about you? And how about everyone else here? Why do you think I always end any of my posts with those two numbers? 18's, because it stands for life, and isn't that we have now. 18's, Marty On Mon, May 30, 2016 at 5:41 PM, 'Jeanie' via CMLHope <[email protected]_ (mailto:[email protected]) > wrote: Thank you so very much Marty. If I knew then what I knew today I think I would have Had the transplant. My onc at that time thought I Was too old. However I'm still alive and kicking After 4 tkis. I am sick; I can't seem to kick this flu. Just resting after my vacation. I sure had a good time with family. Thanks for all as usual. Sent from my iPhone On May 30, 2016, at 4:57 PM, Marty Gartenberg <[email protected]_ (mailto:[email protected]) > wrote: Hi again Jeanie, I just spoke with my good friend Gloria today and I asked her if she wouldn't mind for me to send you and the rest of the group three of her pictures. One before her BMT, one during her BMT and one about one year after her BMT. She thought it was a very good idea. She also mentioned that she would like to try getting onto this CML site and introduce herself so please be on the lookout for her. The main thing here is those pictures which proves that there is life after a bone marrow transplant. Think about something else... What about those 1,286 people, including myself which now makes it 1,287. 18's, Marty Scroll down please... 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