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,  
argo9...@gmail.com 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 <_candles@originalsbykate.com_ 
(mailto:cand...@originalsbykate.com) >:


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 <_wa2yyx@gmail.com_ 
(mailto:wa2...@gmail.com) > 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 
<_cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) > 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 <_wa2yyx@gmail.com_ 
(mailto:wa2...@gmail.com) > 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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