Jack&KatiesMommy wrote:Yes. I had this pretty bad. My oncologist said that it was not the Xelox. He said he could test me for rheumetoid arthritis....but I never had that done. I would wake up at night because the joints in my hands hurt so bad...I could barely move them in the morning. My hips and leg joints hurt so badly, I felt like I was 80 years old. I thought I did have rheumetoid arthritis. However, about 2 1/2 years after completing my Xelox regime (it is the Oxy that causes this not the Xeloda...because I am still on the Xeloda only)....all of the pain is completely gone. 100%. It gradually got better over the 2 1/2 years....but it took that long.
I searched on this board at the time of my pain and could find no other reference to this issue...so I figured that the oncologist was right. Thankfully he wasn't and it was not a permanant conditiion. I took nothing for the pain, other than ibuprofen when it was really bad.
larway wrote:if I didn't have just 4 cycles left I would be doctor shopping.
WriterGirl1969 wrote:As someone with only 4 cycles left, I would *still* be doctor shopping (and am in the process of getting a 2nd opinion even as we speak). Don't let them dictate your pain. They're not the ones that have to live through it. If they were, they'd be a lot more understanding.
larway wrote:I am really considering it. I like my doctor but me and his nurse practitioner dont communicate very well. When she told me they dont treat pain because it isnt related to my treatment I nearly lost it. I am an easy going guy but she makes me angry almost everytime we talk and she is the person I see the most. I tried explaining to her that my regular dr. And my rheumatologist wont touch me bc they dont want to give me anything that will react with the chemo she kinda scoffed like I was lying.
I may not change doctors but I will not be discussing my side effects with her again. She wouldnt even change me from steriods to a non steriodal appetite med when I told her I am only getting about 4 hours of sleep at night, which is my normal reaction to steriods.
I am seriously considering telling them that I am done with oxy. I have used all of my fmla and have to work, two in college and a daughter getting married require it.
MissMolly wrote:Pain and its treatment, or more likely pain and its lack of treatment, is going to be a point of more discussion in the days and months ahead.
In March 2016, the DEA in collaboration with the NIH and CDC released a comprehensive report called the "National Pain Strategy." The aim of the report is the curb the widespread and growing reliance on opiates/narcotics and to prevent the number of deaths associated with overdose.
The effects of the National Pain Strategy on ordinary people, as well as long-term chronic pain patients, is already being felt.
Any individual who is prescribed a narcotic/opiate in an amount of 120 mg morphine a day, or of another drug with a morphine equivalent of 120 mg a day, will be required to adhere to strict federal monitoring and diversion protocols.
If you go to an ER, you can no longer expect to receive an opiate/narcotic to relieve pain.
If you undergo a surgical procedure, you can expect far less generous dosing of narcotics post-operatively. And you can expect even more frugal prescribing of an opiate/narcotic at discharge and the days/weeks at home recuperating.
I had a 92 year old neighbor who fell and fractured her hip last month. She was provided with one day of IV narcotics. Day 2 she was told that plain Tylenol would be sufficient for her pain. My elderly neighbor was beside herself - in both physical and emotion pain.
Nik wrote a post where she described an ER visit a few days ago where she was provided with an ineffective dose of IV dilaudid, 0.5 mg as opposed to a 1.0 mg dose that she was familiar .
I receive Palliative Care (care and comfort) due to compromised and fragile health. Even under the auspice of Palliative Care (which is generally generous in doing whatever it takes to keep patient comfortable) the narcotic prescriptions that I am provided are under careful watch and oversight.
My sense is that people are going to hurt more now in our present medical reality than would have been the case 2 or 3 years ago. It is a difficult political and societal climate to be an individual with ongoing and/or chronic pain.
- Karen - .
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