Re: [CMLHope] Merry Christmas, Happy Holidays, and Happy New year
Hi Marty and thanks a lot. It is with help from people like you that keep us up and running. My oncologist is a famous dr and the head of senior oncolology at mofffit. I like what you wrote about their oaths. But it's not all their fault. They have the government watching them all the time. Let's just keep praying and hoping for one more day. Keep giving us our uplifts. I very much enjoy them. ❤️❤️❤️💔🎄😇😇 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 Dec 25, 2017, at 3:09 PM, Marty Gartenberg wrote: > > What is wrong with people? Let me remind your soon to be departed doctor of > his OBLIGATION to remember his Hippocratic oath including pain. This oath > deals with a lot of requirements, and one that deals specifically with pain. > > Listen pain should not be tolerated, and let me repeat this again pain should > not be tolerated! If you can avoid it then so be it but if you can not then > the people that are intolerable of compassion better change their jobs. > > I am personally angry at any one that doesn't try to help relieve someones > pain, and i can tell you lot of facts that personally happened to me but you > have already heard of one but not the fault of those that were treating me. > > And one more thing that you are going through.. It doesn't matter if your > pain is caused by your TKI or back or anything else but what does matter is > that you are experiencing pain and the people that are treating you have the > responsibility of treating your pain. I am so sorry that your going through > this. > > The ten commitments are addressed to doctors of all specialties. > > > > The Decalogue > > I. I am a doctor and respect the Hippocratic Oath > > II. I have to treat pain > > III. I must take care of the suffering that comes from pain > > IV. I have to work for the wellness of the person > > V. I have to consider essential the quality of care > > VI. I have to commit myself to ensure that access to care to all people is > guaranteed, wherever they are born and live > > VII. I have to avoid inequalities and treat all people, regardless of age, > gender, ethnicity and religion > > VIII. I have to base treatment decisions on the respect of the will of the > person and in defence of human dignity > > IX. I have to share and promote the knowledge on pain care > > X. This is my commitment to improving the quality of life of people with pain > > > > 18's > > Marty > > >> On Mon, Dec 25, 2017 at 12:36 PM, 'Jeanie' via CMLHope >> wrote: >> >> Hi all, >> This has been a pretty good year for me and most you I hope. Marty I just >> don't know how you made it through all that pain without some good pain >> medicine. There is nothing any worse than your but hurting. >> Here's my story. >> About 6 months into treatment with Ponatinib, the pain under my right rib >> became unbearable and I asked my oncologist for some Oxycodone. I had >> researched it as I do everything I take, but I missed out on all the >> governments trying to do to doctors for giving these medicines however my >> onc agreed to give me small dose of oxy. He had been giving me this medicine >> for about 6 months when he just announced out of the blue he would not write >> me another script. Then he started insisting I go to a pain clinic. He said >> he would release me from Moffitt if I didn't. I didn't even know there was a >> thing such as a pain clinic. He said he would write it for 3 more months but >> then all of s sudden said he wouldn't write not even one. I didn't know you >> had to titrate off these drugs and evidently he didn't either. >> So with no more pain pills my pain increased and the side effects from going >> cold turkey off these drugs were making me really sick. My daughter has to >> come from Sanford to Moffitt so now she would be having to come once a month >> for the pain clinic. I again explained to my onc the situation I was in but >> he didn't care. He just said go to pain clinic or leave Moffitt. >> Now, there are 2 pain clinics at Moffitt but neither one would take me >> because my onc said the pain wasn't from cancer or chemo but it says that >> cml causes pain and the chemo causes all kinds of pain. >> So anyway my nurse at Moffitt has back problems and she recommended a pain >> clinic she uses. They are nice but they make you come once a month no >> exception s. I don't drive and am dependent on someone to drive me. >> It seems the government doesn't want your doctor who knows your problems to >> treat your pain anymore. >> Sorry so long and the point I'm trying to make is how brave I think you are >> in handling all that pain with no help. >> I know you say use your mind and I have tried everything. It just goes back >> to the pain and how to get a few hours of reli
Re: [CMLHope] Merry Christmas, Happy Holidays, and Happy New year
What is wrong with people? Let me remind your soon to be departed doctor of his OBLIGATION to remember his Hippocratic oath including pain. This oath deals with a lot of requirements, and one that deals specifically with pain. Listen pain should not be tolerated, and let me repeat this again pain should not be tolerated! If you can avoid it then so be it but if you can not then the people that are intolerable of compassion better change their jobs. I am personally angry at any one that doesn't try to help relieve someones pain, and i can tell you lot of facts that personally happened to me but you have already heard of one but not the fault of those that were treating me. And one more thing that you are going through.. It doesn't matter if your pain is caused by your TKI or back or anything else but what does matter is that you are experiencing pain and the people that are treating you have the responsibility of treating your pain. I am so sorry that your going through this. The ten commitments are addressed to doctors of all specialties. *The Decalogue * *I. I am a doctor and respect the Hippocratic Oath* *II. I have to treat pain* *III. I must take care of the suffering that comes from pain* *IV. I have to work for the wellness of the person* *V. I have to consider essential the quality of care* *VI. I have to commit myself to ensure that access to care to all people is guaranteed, wherever they are born and live * *VII. I have to avoid inequalities and treat all people, regardless of age, gender, ethnicity and religion* *VIII. I have to base treatment decisions on the respect of the will of the person and in defence of human dignity* *IX. I have to share and promote the knowledge on pain care* *X. This is my commitment to improving the quality of life of people with pain* *18's* *Marty* On Mon, Dec 25, 2017 at 12:36 PM, 'Jeanie' via CMLHope < cmlhope@googlegroups.com> wrote: > > Hi all, > This has been a pretty good year for me and most you I hope. Marty I just > don't know how you made it through all that pain without some good pain > medicine. There is nothing any worse than your but hurting. > Here's my story. > About 6 months into treatment with Ponatinib, the pain under my right rib > became unbearable and I asked my oncologist for some Oxycodone. I had > researched it as I do everything I take, but I missed out on all the > governments trying to do to doctors for giving these medicines however my > onc agreed to give me small dose of oxy. He had been giving me this > medicine for about 6 months when he just announced out of the blue he would > not write me another script. Then he started insisting I go to a pain > clinic. He said he would release me from Moffitt if I didn't. I didn't even > know there was a thing such as a pain clinic. He said he would write it for > 3 more months but then all of s sudden said he wouldn't write not even one. > I didn't know you had to titrate off these drugs and evidently he didn't > either. > So with no more pain pills my pain increased and the side effects from > going cold turkey off these drugs were making me really sick. My daughter > has to come from Sanford to Moffitt so now she would be having to come once > a month for the pain clinic. I again explained to my onc the situation I > was in but he didn't care. He just said go to pain clinic or leave > Moffitt. > Now, there are 2 pain clinics at Moffitt but neither one would take me > because my onc said the pain wasn't from cancer or chemo but it says that > cml causes pain and the chemo causes all kinds of pain. > So anyway my nurse at Moffitt has back problems and she recommended a pain > clinic she uses. They are nice but they make you come once a month no > exception s. I don't drive and am dependent on someone to drive me. > It seems the government doesn't want your doctor who knows your problems > to treat your pain anymore. > Sorry so long and the point I'm trying to make is how brave I think you > are in handling all that pain with no help. > I know you say use your mind and I have tried everything. It just goes > back to the pain and how to get a few hours of relief. > Maybe my new doctor will listen and help. > My appointment is the 30 of January. I think my new doctor is a woman and > she was already working close with Dr Balducci so she is probably familiar > with my case. > If anyone on this list has been through the pain problems I would like to > hear how you are coping. > Happy New Year > > 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 Dec 23, 2017, at 4:29 PM, Marty Gartenberg wrote: > > Hi Jeanie, > > First thing, don't be concerned with changing you'r doctor. Moffitt is a > big place and I am sure that this new new doctor will take good care of > you. just give him or her the chance to
[CMLHope] Merry Christmas, Happy Holidays, and Happy New year
Hi all, This has been a pretty good year for me and most you I hope. Marty I just don't know how you made it through all that pain without some good pain medicine. There is nothing any worse than your but hurting. Here's my story. About 6 months into treatment with Ponatinib, the pain under my right rib became unbearable and I asked my oncologist for some Oxycodone. I had researched it as I do everything I take, but I missed out on all the governments trying to do to doctors for giving these medicines however my onc agreed to give me small dose of oxy. He had been giving me this medicine for about 6 months when he just announced out of the blue he would not write me another script. Then he started insisting I go to a pain clinic. He said he would release me from Moffitt if I didn't. I didn't even know there was a thing such as a pain clinic. He said he would write it for 3 more months but then all of s sudden said he wouldn't write not even one. I didn't know you had to titrate off these drugs and evidently he didn't either. So with no more pain pills my pain increased and the side effects from going cold turkey off these drugs were making me really sick. My daughter has to come from Sanford to Moffitt so now she would be having to come once a month for the pain clinic. I again explained to my onc the situation I was in but he didn't care. He just said go to pain clinic or leave Moffitt. Now, there are 2 pain clinics at Moffitt but neither one would take me because my onc said the pain wasn't from cancer or chemo but it says that cml causes pain and the chemo causes all kinds of pain. So anyway my nurse at Moffitt has back problems and she recommended a pain clinic she uses. They are nice but they make you come once a month no exception s. I don't drive and am dependent on someone to drive me. It seems the government doesn't want your doctor who knows your problems to treat your pain anymore. Sorry so long and the point I'm trying to make is how brave I think you are in handling all that pain with no help. I know you say use your mind and I have tried everything. It just goes back to the pain and how to get a few hours of relief. Maybe my new doctor will listen and help. My appointment is the 30 of January. I think my new doctor is a woman and she was already working close with Dr Balducci so she is probably familiar with my case. If anyone on this list has been through the pain problems I would like to hear how you are coping. Happy New Year 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 Dec 23, 2017, at 4:29 PM, Marty Gartenberg wrote: > > Hi Jeanie, > > First thing, don't be concerned with changing you'r doctor. Moffitt is a big > place and I am sure that this new new doctor will take good care of you. just > give him or her the chance to know you, and may i suggest having your current > doctor get in touch with your new doctor and let them acquaint each other. > > Our friends and family's are what keeps us going because they care about us, > well mostly anyway. > > Now do i take any Opiates? Well there was a time that i had to, but let me > explain: When i was in that plastic bubble for many months receiving my BMT i > had so much pain caused by mucocytes from the Chemotherapy and Radiation. > > Similar to terrible mouth sores that go to most of the mucus membranes from > your lips through your entire digestive track including my "solid waste > excretion point", causing extreme uncontrolled pain. > Worse yet was that i was not allowed to eat any solid food but kept me on IV > nutrition called TPN which caused me diarrhea. > > It was so bad that at first they would try and have me gargle with Viscos > Lidacaine but it did absolutely nothing for me. They then tried Mycostatin. > Just made me throw up. Then they brought a Morphine drip and there was a > button on it so i could press it whenever i needed it. All that did was to > make my hallucinate and caused little or no relief but they kept on on me > because i would eventually go to sleep, but once i got up the pain was also > back again. So much to the point i became addicted to it. > > It took me by my own will and couple of months to end my addiction but the > pain was still there so i decided to not use any types of Opiates again. > > I once helped a young woman about thirteen years ago who was about to go > through a BMT and advised her of what mat happen to her after she started her > BMT which was in the same environment that i went through and mentioned about > the mucocytes and she paid attention to what i said. Yes she did get > mucocytes and suffered through all of that pain but she knew how to handle > it, and ended up dealing with it. Mind controlling her body > > You may always hear me s
