As of July 6th when I was released from the hospital I am right back where I started three years ago when I was diag. with CML. I am on my fourth medication and a little discouraged. I asked the onc. who released me from the hospital if there was anything I could do help this disease go in the right direction, preferable away. Having missed school on the day they taught good bedside manner he said " Absolutely not, this medication either works or it doesn"t nothing you can do about". Seeing I have pretty well run out of options I thought that sounded kind of harsh. For the last three years I have tried to eat right, walked two miles every day, got plenty of rest and really tried to live a healthy life style. Since I am starting over from square one I think I will add a glass of wine each night. No it won't help but I will be less stressed about what does not help!
Starting over !
#2
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Posted 17 July 2011 - 10:39 PM
Dear Donna,
Congratulations, I remember you were in a dark place not to long ago.You have to keep going,you can't give up bon bons, or Lucky running around in fishnet stockings? Marnies new best friend is a Moose, and I don't like your doctor. He sure sounds like my first onc. But he may be a very good doc with a rotten personality. Is it possible for you to get another opinion? You said you have been on 4 meds there are only 3 that I know of. Gleevac,Sprycel,and Tasigma. It's probably your healthy lifestyle your living.I don't think you're starting over think of all the knowledge you have just being on this site.And there are some of us on antidepressants. They don't take the cml away but they sure help you cope with it especially if you're depressed.
I drink a couple glasses of wine every night. Sometimes I have 3 and whatever else I can find in my house. Just kidding but my onc and cardiologist actually told me to have a couple glasses of wine. It's okay to drink in moderation occasionally. 2 glasses of red wine every night is really healthy for you. I don't like red wine so I drink white wine. Hang in there don't skip any of your meds and you'll always have this board if you have any questions.
Sincerely Billie
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Posted 17 July 2011 - 11:12 PM
Hi Donna: Its okay to start off at square one again. What is the new medication that you will be on? I think I would start off with a new Oncologist who I felt I could talk to better. He might be good doctor, but as far as beside manner he has none. If you are not satisfied after you are into this new treatment, then go get another opinion to make yourself feel better that you are getting the right care. This is your body, and you can do whatever you want to get the right treatment for you. Just give it a chance. I only know of the 3, other than ARIAD which I believe is still in trial. I know people who are doing very well with that new TKI. Please keep in touch with us, and know that we are here to support you anytime you need us.
Susan
#4
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Posted 17 July 2011 - 11:34 PM
Dear Donna, I completely agree with Susan. Why don't you call the nearest cancer center and talk to someone there and at least tell them what is going on. If it isn't close by then at least maybe they can recommend someone else in your area.
Billie
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Posted 18 July 2011 - 07:41 AM
I have been on Ponatinib, Gleevec, and Tasigna. I am now on Sprycel. The onc. I was dealing with in the hospital was not my regular onc. He only works at the hospital. My onc. did attend school the day they taught bedside manners and took notes! Thanks for the encouragement ! Donna
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Posted 18 July 2011 - 07:54 AM
Hi, Sorry your going through all this! I know how you feel I'm on the 3rd drug and feel like I'm not very far along as others who were dx same time I was. My numbers spiked and I got sick now on sprycle and waiting for the results from my fish praying its workin toin the downward trend too. Just remember to keep up the fight. They will find the drug that works for you and there are plenty of good onc out there just get another one. Maybe that would be a fresh start. I wish you all the luck and health in the future! Your support is here for you !
take care
Cathy
Cathy
DX 5-2010 Started normal hydra then Gleevec for 9 months stopped working
Tasigna after 5 pills pancreatis numbers jumped up quickly
Started Sprycel 100, 8-2010 for a 3 years went down to 50 mg numbers at one point really jumped up quickly
currently on 70 mg for last 2-3 years trying to get onc to reduce dose Numbers never stabilize never MMR till 4-2017 bearly and jump up and down in and out of MMR stayed MMR for 3 months then
After 6 years on sprycel fluid on both lungs, drained still have some fluid on lungs, and currently off drug 4 months now
numbers lower then ever go figure I've never been this low of a number
last 2 tests .0686 and .0181 !!
#7
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Posted 18 July 2011 - 08:23 AM
Prayers coming your way, donnadavis! Keep up the fight! Much love. -Josh
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Posted 18 July 2011 - 10:25 AM
Hi..I like your attitude...you sound spunky! 
. That onc missed the lesson that day at school! Glad your real doc attended that day! Best of luck.....hope the glass of wine helps!! Lala Billie.......I laughed at the red wine part.....it is recommended but you prefer white.....FUNNY!
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Posted 18 July 2011 - 01:16 PM
donnadavis wrote:
As of July 6th when I was released from the hospital I am right back where I started three years ago when I was diag. with CML. I am on my fourth medication and a little discouraged. I asked the onc. who released me from the hospital if there was anything I could do help this disease go in the right direction, preferable away. Having missed school on the day they taught good bedside manner he said " Absolutely not, this medication either works or it doesn"t nothing you can do about". Seeing I have pretty well run out of options I thought that sounded kind of harsh. For the last three years I have tried to eat right, walked two miles every day, got plenty of rest and really tried to live a healthy life style. Since I am starting over from square one I think I will add a glass of wine each night. No it won't help but I will be less stressed about what does not help!
On the one hand, I feel terrible about your situation and will be thinking about you every day, hoping it gets better the next time around.
On the other hand, contrary to most opinion, we prefer the above approach to vague positivities that will never materialize. Imagine if you'd been told at the beginning of all of this to just exercise and eat right and "life a healthy lifestyle", whatever that is. Here you would be, still in the same spot, but with lots of broken promises.
Truth is, this is all a crapshoot, and the docs don't want to say it and the patients(the imperial patients, not anyone here specifically) don't want to accept that. Our oncs will very nicely say "eating right and exercising are never not good for you...", BUT, "no, we don't see where this or that is going to help very much...". Supplements and weird things like marigolds and stuff will get very stern lectures. Remember, not very long ago these drugs didn't even exist, so to me it is no surprise when these guys just don't really know. I'd just rather they just SAY they don't really know or think so, just SAY "don't waste your time with..." whatever it might be. My Mrs lived a pretty darn clean life, got diagnosed 5 years ago, and it has SUCKED since, and seems only to go downhill from here, no matter HOW much she eats well and exercises. Fact is, them two things are about the least of the impacts on her life right now, about third and fouth after CML and Gleevec. We recognize the value of the good eats and exercising in our lives, but as part of helping or making CML or Gleevec more tolerable or affecting the outcome(s) in any way, no, we recognize that carrot juice and aerobics have none on any of it.
Good luck Donna, I really hope it goes well.
rct
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Posted 18 July 2011 - 01:54 PM
Hi Donna: I will pray that the Sprycel works for you. There are a lot of people on here who switched to Sprycel, and had amazing response.
Glad you added that note about this guy not being your regular Oncologist. If you have any problems with side effects, just get on here to talk to those who are on Sprycel so they can help you.
Susan
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