Oh I see. I had a private onc until I got so sick he didn't know what To do. Then I went to Moffitt. The do PCR every 3 months. I have a really good team there. Not doing too well lately but blame it on the flu I had. Blessing. Sent from my iPhone
> On Jun 3, 2016, at 10:38 AM, Myvety2k via CMLHope <[email protected]> > wrote: > > 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]> >> 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 >>>> 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