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Sister DX NSCLC


pamlee1

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Just wanted to post a quick update on my sister. She's having so much trouble with pain from bone mets. The oxycoton is making her so out of it she can't function so over the weekend she decided not to take it and to switch back to the motrin. She's more alert but pain management is not good. She thinks the oxycoton is making her have trouble breathing; is very short of breath and smothering.

We have an appt. with her onc today and I'm going to ask about having her evaluated by a pulmon. dr. as she has not seen one of those yet. I'm concerned there has been damage as a result of the radiation that's causing the problem. Her appt last Monday was with her onc as well as an orthopedic dr. He of course recommends surgery to stabalize the bone met; didn't get the impression her onc was totally on board with that but today is supposed to be a re-evaluation of that issue. Seems to me when they manage pain with such strong drugs and you lay in bed all day that would not be good -- fear of pneumonia, etc. So I just don't know what the answer is.

There was a segment on the evening news the other day about a new cancer drug for lung cancer patients called Avastin. Anyone had any experience with that? Said it was showing remarkable improvements in lung cancer patients. I'm going to ask about that today. My guess is that sis. is not going to be able to do next chemo unless they can get this pain stabalized as the pain is just wearing her down to the point she could not handle chemo side effects. Sure would be nice to have some good news occasionally. Well, off to the dr's appointment and will post later.

Thanks for listening, Pam.

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Pam-

I know that when I started to do the taxotere/taxol treatments with the carboplatin (after radiation) that the pain was so bad that I begged my husband to put me out of of my misery. Now that being said, once the chemo ended the pain slowly started to subside. I did not have a very good oncologist then and have since switched. The pain felt like it was down in the bone marrow and just radiated out, my hair even hurt to touch.

There is a way to get the pain under control, just got to figure out the right combo of drugs. But know that you are not alone when it comes to her pain. Nurotin (sp?) helped me (it's like a nerve pain drug) when it was taken with percocet, but it's very easy to over dose on it.

Good luck!

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Dear Pam,

I'm so sorry your sister is having so much trouble with pain management. While I know that everyones experience through this journey is highly individual, I can't help but to relate to the situation your sister is in. It sounds SO familiar. I was having the worst kind of reactions to Oxycontin & Oxycodone. Some of them allergic & others just plain mental. I can't begin to describe the change for the better in my quality of life since I got off that stuff & went on morphine. She might want to look into it.

Before my med change, I really had no decent quality of life. I was miserable. In pain, itching, incredibly crabby with everyone, headaches, nausia, night sweats, totally out of it, sleeping 18 to 20 hours a day, no appetite. I may as well have given up & I really was about ready to do just that when I asked my Dr. is it was possible to try morphine instead. I was taking 20 mg. Oxycontin 2X daily with 5mg Oxycodone every 4 hrs. for breakthrough pain plus 650 mg. tylenol every 4 hours.

We eliminated all 3 of those meds & he prescribed 100 mg. morphine2X daily. The first 2 days were kind of bad. I was totally looped but figured there had to be a way to work around that so I got a pill splitter & cut them in half. I started taking 50 mg. 4X daily. The change was immediate, absolutely life altering & heavenly! By breaking it down to a smaller dose more frequently, I am not out of it & I have better pain control than I had ever had previously And all this with none of the nasty side effects.

My quality of life right now is something I would never dared to imagine before.

My husband & I go out & do more fun things now than before I was dx with cancer. Sure, I "run out of gas" every now & again but not too badly. I had quite a few medical issues prior to LC, like multiple herniated discs in my spine so I had been no stranger to pain & really have built up a pretty high pain tolerance as a result. However, as I said, I would never have dreamed that I could have this great a quality of life at this stage of the game. I just hope you will discuss it with her. It is incredible to me, the change that morphine has made. I really have my life back. Again, I know that not everything works the same for everyone but who knows? She may get lucky like I did.

God Bless & you are both in my prayers.

Melanie

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