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 <cmlhope@googlegroups.com> > 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, > rien16...@gmail.com 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 <vkrei...@gmail.com>: >> 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 CMLHope@googlegroups.com >> To unsubscribe from this group, send email to >> cmlhope-unsubscr...@googlegroups.com >> 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 cmlhope+unsubscr...@googlegroups.com. >> 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: rien16...@gmail.com > > -- > -- > [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 CMLHope@googlegroups.com > To unsubscribe from this group, send email to > cmlhope-unsubscr...@googlegroups.com > 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 cmlhope+unsubscr...@googlegroups.com. > 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 CMLHope@googlegroups.com > To unsubscribe from this group, send email to > cmlhope-unsubscr...@googlegroups.com > 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 cmlhope+unsubscr...@googlegroups.com. > 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 CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com 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 cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
