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Posted

Good morning. Ok. Here goes. 5 years ago, pleural effusion in the right lung. Ca125 levels were up but I felt fine. 2 years later masses and nodules in pleural sack creating calcifications. Diagnosed with probable stage 4 ovarian cancer.....papillary adenocarcinoma. Chemo for that did nothing. During 2nd round of chemo, we moved and I got a new oncologist who disagreed with diagnosis and called it mesothelioma. Suspended chemo for a year. Tried a chemo to help me qualify for a clinical trial. I was refused because I was asymptomatic at the time. No known exposure to asbestos so no money. So here we are. Mets to chest wall, ribs and lymph nodes. On Fentanyl25 mcg patch and oxycodone. Breathing is ok as long as I don't walk much. My poor hubby waits on me all the time. I feel so badly for him and we both have no one to talk to about what we are going thru. I don't mind dying, it's living a long time as this gets worse that I am afraid of. The pain doc's here in Las Vegas seem to be young and business oriented. I was just told by a PA that the CDC has passed some laws and I have to wean down my oxycodone to a lower dose by June. What? Seriously??? Cancer patients????

Posted

Heyygirl,

 

Welcome here.  I'm not where you are but have been where you are.  I still have difficulty breathing.

 

Federal government medicine is a mess.  We've got to find a way to take the politics out of medicine.  Pain meds ought to be easily available, especially for those with lung cancer.  I had to jump through hoops to renew my last script for pain meds and I've had them for 12 years.  One would think after that period of time if I were abusing, it would be evident.  But the good bureaucrats at the CDC just assume everyone that takes narcotic medication is Stage I for addiction.  

 

Maybe if the whole lot of them were to experience lung cancer, things might change.

 

I'll get off my soap box.  Stay connected with us.

 

Stay the course.

 

Tom

Posted

Thank you for responding. 12 years? Is it in your bones? Are you exhausted and can't function?

Posted

Heyygirl,

 

Thankfully, my cancer never made it to my bones.  But radiation and chemotherapy were exhausting.  There were some days - about 3 - after each infusion where I just couldn't do a thing.  And the last 3 weeks of conventional radiation sapped all the energy from me.  I was bed-bound save for trips to the clinic.

 

Now with residual chronic pain from extensive surgery and chemo, the more I do, the more I hurt.  My pain level is constant, but if I sneeze or have an abdominal cramp, my suture-area chronic pain soars. My toes burn all the time and certain joints of my feet also ache but if I'm on my feet for a lengthy period, that pain soars also.

 

Pain from treatment is such a pain!  I've tried to move away from narcotics because they make me groggy the next day and adversely affect my digestion.  About 6 in 10 days, I can sleep without narcotics. My doctor found a study that shows Xanax, an antidepressant, was shown to have a therapeutic effect on chronic pain and I take 1 mg every night about 30 minutes before bedtime.  Sometimes I need to add 1/2 a milligram.  It relaxes me and assists in sleeping.  But some nights, nothing works and I have my night of the long knives....

 

Stay the course.

 

Tom 

Posted

Ooooo.....it sounds like you have neuropathy from the taxol. I'm so sorry. I've got just a bit of that but my new diagnosis stopped the taxol before it got too bad.

Yes, carbo platain and taxol were a beast for me, then I became allergic to the carbo. Interesting experience.

Staying the course. You too. Thanks for being here.

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