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Newbie Mest Breast Cancer spread to bone and scolosis

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Chronic Pain
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Posted 5/1/2008 6:59 AM (GMT 0)

Hello all

I am a newbie here...I have Mest Breast Cancer that has spread to colon,lung and now my bones( spine) New CT Scans show no new masses thank heavens....I also have severe scolosis and compression deformites of T5,T9,and T12...demineralization....compression fractures of several lumbar vertebrae and rotatory dextroscolosis whatever that is...

My Oncologist has had me on Percocet5mg....and my family Dr who is also the hospice Dr here in Ky put me on MS Contin 3 30mg tabs in am and 3 30mg tabs at night plus Morphine Sulfate 15mg IR 3 times a day...

I was taking the Percocet to save on the Morphine....but now that no new masses are present they took me off that...

I was on 50 Fentanyl patches but they really zonked me and I had to get off those....I am also on Ambien5mg for sleep...

The problem is I am crying in pain.......sitting on the sofa it's soft and helps but lying in bed...I can't...I still end up in ER for a pain shot and I know the nurses and Dr's think I am there for a quick fix but I am not I am truly suffering...now my family Dr is saying with no more new masses he is wanting to cut down my meds...so yesterday he didn't refill my Percocets....they really helped me my Oncologist had been giving them to me for a year.......no one not even the Drs know what pain I am in........

I am thinking about cuttinb back the MS Contin and telling the Dr next month to keep me on the Morphine Sulfate15mg Immediate Relase and Percocet for the breakthrough pain....

What would you all do........Some days I can barely go...with what all I have wrong me I should be pain free and with the MS Contin and Morphine you think I would be but I am not..I am so dishearted that they took away the Percocet but don't want to appear to be begging for it........I don't want back on the patches again.......and I have no problem paying for it with my Insurance I have my perscriptions are free....180 MS Contin cost $180...I could not afford that with no insurance..and in May it goes up to $2.15....if this were you all how would you go about saying keeping me on the Percocet...yet want to cut one..........

Thank you and it's nice to meet all of you

I am glad there is a place like this for people like me......I am not a druggie just suffering and tired of hurting........how I would love to not hurt for just one day........

Thank you for any input you might have...also now that I have no new masses I am still wondering why I am having to take chemo......they say it's to prevent the cancer from spreading..yet I am being treated with poison from this treatment making me sick with no new masses........just confused on cutting back meds and the chemo

Many thanks

Blush802~ confused

Posted 5/1/2008 12:19 PM (GMT 0)
Blush:

First, welcome to the forum. I am still fairly new myself, but I can tell you that you will find the most caring of people here.

Second, you are right. You deserve to have your pain managed properly. Have you seen a pain management doctor? It sounds like your primary care doc is not taking care of you the way he should. I would think your ER visits would attest to that rather than prove the opposite. Percocet is really not a super potent narcotic, and I've noticed a lot of people take that as breakthrough med along with some of the other meds you've said you are on. It is ridiculous for the doctor to pull those from you if they are working.

I would start looking for a PM clinic if you can. I think they will help you more.

Best of luck. I hope you find relief soon.

Ry
Posted 5/1/2008 2:03 PM (GMT 0)
Welcome blush, it's sounds like u have a very heavy load...I hope that u get help here with advice. I agree with RY about the PM clinic, your docs don't seem to be handling your pain at all. God bless.
Posted 5/1/2008 2:10 PM (GMT 0)
Hi Blush,

And welcome to our family! One way to impress upon the doctors the amount of pain you're having is to keep a pain journal. Several times a day write down your pain level from 1-10, like they ask at the doctor's office. Then write down what you took, if anything, if it helped, what you were doing, and anything else that will explain to the doc what your quality of life is like. Do this until your next appointment. Then take the journal in to your doc and make him read it. This will force him to see your pain on an hourly basis and that you are miserable. This often helps you too to better manage the medications you have.

Personally...and I'm NOT a medical person... you should be on some long acting pain med and break through pain med. You will never be pain free, but you should be comfortable. It is disrespectful and almost criminal for a doctor to leave you in so much pain.

Keep us posted,
Chutz
Posted 5/1/2008 2:31 PM (GMT 0)
Hi, welcome to the group! I am new to the group to....im so sorry to hear of the pain you are in....but thank goodness you have NO new masses! (my mom is a BC survivor, my aunt passed from it, and i have had two lumps removed, both benign thankfully)

I know alot of people say that percocet does not work as well as someof the other drugs, or is not as strong....however, I personally get GREAT relief from it! I was switched to opana (long acting morphine like drug), which had NO effect for me, even tho the PM doc was telling me it was much stronger than the percs.... I amnow back on the percs and getting better PM.

Anyways, i agree w/ the others, find a good PM doc and also take to your oncologist....they deal w/ people in pain all the time, they should treat that pain and should listen to you about what works well for you...be assertive (i am having a little problem w/ that mysef also, as i don't want to appear as a drug seeker either, i just want to have a day w/o severe pain)

If you are unsure about your chemo, you should talk to your oncologist also about that. My cousin had BC and had a lumpectomy and was considered "cured" however, she did do chemo based on her docs recommendations. You have alot of cancer that had spread, im sure it is done as a precaution. I know it's hard to continue to poision your body when you have no new masses (i know my cousin had many days that she was very upset that she was having chemo after have the cancer out). But you want to be around in the long run!!!! Im by no means a doctor, so please contact your doc and discuss it w/ them.

Hang in there, my heart goes out to you! Best wishes, shannon
Posted 5/1/2008 3:18 PM (GMT 0)
Dear Blush,
I am so sorry for all you are having to deal with right now, and for them to take away anything that's helping with your pain is...well, there are no words! You mentioned your doc is also the hospice doc in your area, so he/she should be even more sensitive to your situation. Like others, I think you need better PM. I'd suggest contacting yoru oncologist and discussing pain management strategies. One doc should be finding the meds that give you the best pain relief.

If you have a family member or friend that can help advocate for you, that would be even better as I know this takes a lot of valuable energy. But I'd have a good serious heart to heart with your doctor about the quality of your life and that means being as pain free as possible. The pain journal idea is good because you will have something to take with you.

Keep in touch with us.

Hugs, to you,
PaLady
Posted 5/1/2008 6:00 PM (GMT 0)
Thank you all so much for all the advice...
I have a new Oncologist that is dead set against giving me the Percocet that my original Oncologist gave me to start with...Original Oncologist was comming down from Louisville once a month to Campbellsville to treat the patients at the Cancer Center I go to...they were so nice and caring not like this new at all...he is almost rude..I really dislike him...
I may just try the Morphine 15mg IR and try to get back on the Percocet since summer is comming on and try to wean down a tad....if that doesn't help I am sure my family Dr would put me back on the MSContin he is very caring and I really like him he is a sweetie......
Thank you all so much for caring and be supportive and may we all have a half pain free weekend......
Blessing to all
Blush802 aka Susan~
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