Hi all Went to Moffitt today and blood is good. Dr recommending going off meds but I've always gone out of remission without my pills. I have decided to cut back a few days at the time. My playlets were borderline low. I tried to see dr pinila but the appointments got mixed up and my other onc recommended Balducci. So I've been with him for 7 years. I would go for Pinila because he is the head of the leukemia department there. I've paid very little the whole time there. I know it's hard to change but things will work out for you. Good luck. Maybe they could do a story on your journey through Gleevec. I like Moffitt because you don't have to run around for tests-it's right there in the center. It's not just leukemia. They have large departments for other sicknesses right there for you plus the hospital is connected to the department I go to. Don't worry everything will be ok and we are here for you if you need us. Jeanie
My Motto: Faith and Pills With Love 🐠18's Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/2015 Doctor Balducci Moffitt Cancer Center > On Aug 6, 2017, at 9:15 PM, 'Susan Zimmerman' via CMLHope > <[email protected]> wrote: > > Greenie, > > I recommend Moffitt also. You know I go to Dr. Altman becuz I'm up here in > Indiana. But my old doc was Pinilla that Jeanie recommended. They will help u > get your medicine. A lot less expensive to go there!!! > > Blessings, > > Susan F. Zimmerman > > > > On Sunday, August 6, 2017 Myvety2k via CMLHope <[email protected]> > wrote: > > Jeanie thank you I wait and see what happens if things don't work out for me > I will go their. > > greenie > > In a message dated 8/6/2017 5:56:57 P.M. Eastern Daylight Time, > [email protected] writes: > Hey Greenie, > I would like to suggest Moffitt cancer center here in Tampa. They will do > everything to help you to get your meds. It's where I go and they have saved > my life twice. They accept Medicare and medicate assignment. If you need > help with copayment a there is a cancer copayment company called PSI. They > paid my copayment for several years. You just need to start making calls and > get the ball rolling. However I pray they keep sending the meds. You and I > have been fighting this for years. > I go to dr Balducci head of senior oncology center in Moffitt but the head > of leukemia is dr Pinnalla. Check spelling. It's great/ you go in an hour > ahead of Drs meeting for bloodwork right at hospital and by the time you meet > your dr your blood work is done for him. Every three months they do a PCR. > They have vallet parking. > Praying for you. > Jeanie❤️❤️❤️❤️ > > My Motto: > Faith and Pills > With Love > 🐠18's > Dx 1/2004 CML Leukemia > Started Gleevec 2/2004 > Started Tasigna 9/2009 > Started Sprycel 11/2009 > Started Ponatinib 1/2015 > Doctor Balducci Moffitt Cancer Center > > On Aug 5, 2017, at 6:25 PM, Myvety2k via CMLHope <[email protected]> > wrote: > > Hi Rien, I started a study the first week in Jan. 2000 at Northwestern > Hosp. in Chicago at 400 mg each day before it was approve my the FDA. They > changed it later to 300 mg because of the Gleevec rash. I got sick in 2009 > and stopped Gleevec for 26 days because of sinus infection and the Doctor at > home put me on an antibiotic which made me sick so I stopped for those 26 > days. > > Then I started up again and had my blood work done at Northwestern and > started on a trip out west. My Cancer Doctor called me while driving and > said," David your blood work showed that their are cancer cells back in your > blood". I told him remember I quit for 26 days and he replied that's right I > forgot, did you start Gleevec again I told him yes and he said " well if it > worked before it will work again and hung up and I never heard from again. I > later received a letter from him that he moved on to a different Hosp. in New > York, NY. and that was the end of that. > > So, June 7th of this year I flew in from South Fort Myers. FL. to Chicago to > get my blood work see my new Doctor pick up my drugs and be on my way home. > But instead I was told their no longer a study and you won't be getting the > drug any longer. That took my breath away. Before I left they then told me > that they changed their mind and would give me the drug and 7 month supply > and would sent the rest later because they were short on Gleevec.. > > Last week I received a call telling me that for me to receive the drug that I > would have to fly in every 3 months, that's not going to happen with the cost > of flights, car rental, etc., not with my income at 78 years old. They > called me last week and they are suppose to have a meeting and let me know. > > When I started this study their were 8 of us out of 200 people nation way and > that I would receive the drug STI571 for as long and I could tolerated it or > stay alive. Well that changed. I am waiting for a phone call and I'm afraid > it's not going to be good news, So, my question is should I take a chance > and stop the drug and get blood work in 3 months and see was happens with my > blood count? I am a basket case waiting to see what happens. > > If you have some answers please let met know. > > Thank you, > > David (greenie) Greenberg > South Fort Myers, Florida > > > > In a message dated 8/5/2017 5:26:55 P.M. Eastern Daylight Time, > [email protected] writes: > Hello! > > I stopped taking Gleevec after 13 years. I had my checkups every month, but > only in the first year. In the second year every two months and from now on > every three months for the rest of my life. > It seems that everybody reacts in a different way. I myself had more > bonecramps after having stopped than while taking Gleevec; but after the > first year it gradually went better and now I have these cramps only a few > times per year during the night. The swallen eyelids completely disappeared > and unfortunately, my face became a lot thinner. Another side-effect: my hair > was not grey anymore after havinig stopped, it is still dark, which was not > the case before. After all I am glad that I took the decision, the problems > of the first year will disappear, so I strongly advise you to do like I did. > Feel free to contact me for further information. > Greetings from the Netherlands - and let's be grateful that Gleevec exisits!! > > Rien > > 2017-08-05 19:18 GMT+02:00 Vivi <[email protected]>: >> After seventeen years on Gleevec, and considered "in remission," my >> oncologist asked me if I would like to stop taking Gleevec. >> At first glance, this sounded spectacular but then she said: >> "you'll have to come in once a month to be tested." >> After deep thought (about twenty seconds), I said, "Talk to me about this >> again in ten years." >> Has anyone else stopped taking Gleevec after years of being "in remission?" >> If so, how's it going? >> What has changed in your life? Have any of the obvious physical >> side-effects (leg cramps, blood in the whites of your eyes, swollen eyelids, >> abdominal fat) retreated or been reversed? >> I'd appreciate any information other CMLers might have. >> Best to all. >> -- >> -- >> [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. > > > > -- > Dr. Marinus Jonkers > Ravenhoflaan 5 > NL- 4706 WD Roosendaal > Tel. +31 165 8 22128 > 117 Bd de la 1ère Armée, no. 21 > F – 83330 Le Beausset > Tél. +33 494 06 01 87 > email: [email protected] > > -- > -- > [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 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 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 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 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. 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