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]> > 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] 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]> > 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] 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]>: >> 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]> 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]> 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]> 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... >>> >>> >>> >>> GLORIA >>> >>> Forward >>> Edit subject >>> Pop out reply >>> >>> >>> To >>> >>> [email protected] >>> >>> CcBcc >>> Cc >>> >>> Bcc >>> >>> >>> >>> Replies will be sent from [email protected] >>> Loading... >>> >>> >>> >>> >>> <image.png> >>> >>> >>> >>> Image: >>> Small|Best fit|Original size|Remove >>> >>> >>> >>> >>> >>> >>> Sans Serif >>> -- >>> -- >>> [CMLHope] >>> A support group of http://cmlhope.com >>> ------------------------------------------------- >>> >>> You received this message because you are subscribed to the Google Groups >>> "CMLHope" group. >>> To post to this group, send email to [email protected] >>> To unsubscribe from this group, send email to >>> [email protected] >>> For more options, visit this group at http://groups.google.com/group/CMLHope >>> --- >>> You received this message because you are subscribed to 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options, visit https://groups.google.com/d/optout. > -- > -- > [CMLHope] > A support group of http://cmlhope.com > ------------------------------------------------- > > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To post to this group, send email to [email protected] > To unsubscribe from this group, send email to > [email protected] > For more options, visit this group at http://groups.google.com/group/CMLHope > --- > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To unsubscribe from this group and stop receiving emails from it, send an > email to [email protected]. > For more options, visit https://groups.google.com/d/optout. > -- > -- > [CMLHope] > A support group of http://cmlhope.com > ------------------------------------------------- > > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To post to this group, send email to [email 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