I had those awful rashes with all the tkis except the One I am on now. Have you had a bone marrow aspiration? I had a lot of them in the beginning. Tasigna didn't help me at all and I was put on sprycel for about 5 years. They all have bad side Effects. Just keep fighting warrior.
Sent from my iPhone > On Jun 2, 2016, at 5:14 PM, Marty Gartenberg <[email protected]> wrote: > > Hi Kathy, > > Just so you know fear of anything is just a human reaction. Everyone does > have fears however you just have to know how to deal with them. I'm not > suggesting that you have to bury your head in the sand because everyone know > that this only works for Outrages and they think that everything will just go > away. > > What I am trying to say is just take one thing at a time and see what you and > your doctor can come up with some sort of a balancing act. You will see that > sometimes a bump in the road seems to work it way out. > > The last time that I was with a few of my kidney transplant teem a few > mentioned to me that after all that I have been through I am living on my > ninth life. I had to set them straight and corrected them by disagreeing by > my next statement. I mentioned that I was actually living on my eleventh > life... > > This is just my attitude but it has always gotten me through everything so > far... > > Since I believe that your a "new-bee" here just try to listen to some of us > old timers and you will see what a difference in your life it will be. 🍒life > is a bowl of cherries isn't it. > > 18's, > > Marty > >> On Thu, Jun 2, 2016 at 10:38 AM, kathy walls <[email protected]> >> wrote: >> Thanks a bunch for the info will go over it with my onc next week. Im just >> really afraid of the massive skin issues with the tasigna! >> >> 18's >> Kate >> >> Sent from my iPhone >> >>> On Jun 1, 2016, at 1:34 PM, XRISTINA <[email protected]> wrote: >>> >>> 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] 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