I mean Medicare assignment. 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 5:56 PM, Jeanie <[email protected]> wrote: > > 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.
