One patient with glioblastoma still alive nine years later
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Discuss concerns with your doctor
Thu Mar 28, 2013 12:57 PM
I am stage 4 caner dealing with oesophageal cancer spread to lynph nodes. and have developed a frozen shoulder which has led to chroni pain in the left arm/shoulder for 2 months. I just started my first round of chemo this week but had had to deal with the pain separately, It has been a long time with much time spent on my own research and dealing with consultations with my oncologists, family physician, physio therapist, lymphatic drainage specialist, pharmacist, and other resources such a compression vest, sling, meds, meditation, visualization, etc. I still have the pain and have had the hardest time dealing with the med that will do me the most good. There are many different opinions on how much to use, and which will be the most effective. I have taken Tyelnol 3 (with codein) but had learned recently that some peopl may have difficulty metabolising the codein and that there is a more effective med that would be quicker. In the meantime, I have only used the Tyelnol ( delaing with constipation) which has not been most effective. I must take responsibility for not having asked more questions.
Thu Mar 28, 2013 11:00 PM
Constipation is the number one complaint even after chemo. I have used Mirlax or it's generic version and have been real pleased with the results. I have been dealing with Breast Cancer #4 for 4 years and do have a spot in my back yet. I also have had CFS for 20 years and suggest to find something each day to laugh at or lift your spirits! Life is tough but fight back:)
Tue Apr 02, 2013 12:25 AM
It is difficult coping with cancer pain, especially when there is a public backlash against giving patients pain medication. The State of Tennessee and the FDA are making it harder for physicians to prescribe pain medications, and cancer patients to get them - trying to punish the "abusers." In Tennessee, as a cancer patient, my HIPPA rights are violated as the narcotic I am prescribed must be listed on a public website, with the name of the medication and the prescriber to prevent a patient from getting medication from more than one doctor. All MD's and Nurse Practioners, as well as office staff can look up a person's records if they know the name and date of birth. In my small town, when the only radiation oncologist in town has prescribed me a narcotic, anyone who views it can assume my diagnosis. I have no way to see who viewed it or restrict access as a consumer. This could affect my ability to get life insurance down the road or to get or keep a job. The pharmacists are hostile when I tried to fill my prescriptions. I feel discriminated against. Recently the pharmacist refused to fill a new prescription for me for a medication which was tirated to a higher dose by my physician. I was told because it was a narcotic and I should have enough of the lower dose left, that it could not be filled. I had to go on a long awaited family vacation without the increased dose of medication. Why are pain patients being punished? How can HIPPA allow this? I had a tumor in my hip on the sciatic nerve and hip joint and I have severe pain limiting my mobility without medication. I still have to work and take care of my children. I have never taken medications for pain before I had cancer. It is hurtful to be treated like a drug addict along with the difficulty coping with cancer.
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