Pain with mets

I think that you have to find a pain med that is comfortable for you to use. I find that OxyContin makes me nauseous, dizzy and puts me out like a light. I prefer(ed) the Hydrocodone (Vicoden) initally, because, I have taken it before with no side effects, I have since moved to OxyCodone (Percocet) as Vicoden was not working as well anymore. Initially on the Percs, I had a weird side effect, but that is totally gone now. I can drive and do everything without notice that I am on a narcotic.

I also was taking more than prescribed in the past few months, so now I am taking Morphine 15mg 12hr extended release tablets, with the Percs just for breakthrough pain now. Your pain meds will be adjusted as you go. In each of the meds I am taking they are at the lowest doses. The vicoden and percs are at 5/325. They go up to 7.5 and 10s. The morphine is the same, I was told if 15mg does not work I can move up to 30's. I have read on here that the morphine can go up to over 100mg or more.

I do believe that you have to listen to your body, it will give you all the clues to tell you how it will react. There are also other painkillers out there also than the above mentioned. Try them and see how you feel, if not good, try another.

Euro

Europa, you sound like you are getting the drugs I need. Vicoden is not working any longer and I need something more. I'm being referred to a Pain Specialist, have any of you done that route? Getting new MRI's on Tuesday to look at spine mets again for possible radiation again. Yikes, not sure though it I want to go that route since I've had 3 bouts with it already. Worried about my lungs and liver.

You are all making me feel less crazy. My onc went out of town for 2 months. During that time I had a wisdom tooth removed surgically and the mets in my spine have gotten much worse. 

I've been on vicoden 5/500 for about a year now. I called his nurse and told her how bad my pain was and she said my onc doesn't really like to perscribe pain meds. Maybe when my condition became more advanced.

I'm stage 4, grade three with mets in t9 and L2.

I'm palliative at this point. How much more advanced would she like me to be? I was so upset and am having a hard time trusting my onc, who I will see on the 22nd. In the meantime I do have an appointment with a pain clinic within my cancer center. 

I'm so sorry I went on and on but I'm facing some harsh realities and feel like my onc who I've trusted has truly let me down.

Thank you for letting me know I'm not the only person on pain meds.

I hope you find someone who will listen to you for any subsequent procedures. Maybe they have a pain management clinic within your network that could help be an advocate for you.

Good luck to you. Thanks for letting me vent.( like I gave anyone a choice)

Rebecca

Creed,

Thank you for your response. I really appreciate it! I saw a pain specialist this week who put me on MS Contin 15 twice a day, then to three times a day in 10 days with my original Vicodin for breakthrough! Pretty close to what Europa gets. I was so relieved I started crying in the office! 

It's working out beautifully! My mood is better, pain is close to gone. I had a headache the first day, but that's now gone!

Creed, I agree with Europa that you have to listen to your body. If you need the meds your on don't let them pressure you to back off. This has changed my life!

I cooked and cleaned today without horrible pain. The woman I saw was so sweet. 

Anyone who hasn't gone to pain management , please do so. 

Three cheers for quality of life!!!!

Australia,sorry to know your pain is back and you have liver progression. Hope your oncologist starts you on a different treatment plan. In the meanwhile, pain meds are our only solace.

I have spine mets and the pain was totally in control for the past 9 months (had cyberknife radiation). Now slowly, the pain is coming back. Recent MRI (two months ago) showed everything was 'stable'. I don't know why my pain is coming back.

I was wondering if anyone had 'stable' scans and still in pain?

Desi

Desi,  I have just joined this chat room experience and I am so glad!  I have been takin narcotic pain meds since my initial diagnosis. Bone mets are painful!  I am taking an Aromatase Inhibitor which causes even more pain!  My mets have been stable since day one. I know that docs need to be careful about "users" but I think someone who is Stage IV is a different thing!  

I have had two Oncologists,and two GPs (I moved a year ago).  They both have been very upfront that a patient with a metastatic BC is in a different category where pain medication is concerned. My Insurance case manager said the same thing recently. If the Insurance company agrees than you know it's true!!

I think that pain and pain management are a part of our life from now on. I can't function if I am in pain or if I am tense about not having my pain meds. If my doctors were giving me difficulty about pain meds I think I would need to change docs. It is difficult enough not to feel "weak" for relying on pain meds without someone whose job is to promote your quality of life making you feel worse!  I'm sorry to rant but I feel strongly about this! 

You are the one who knows if you are in pain. Your doctor needs to be someone who trusts your judgement!  Fear of pain and real pain can be mostly controlled. It should not control you!

Peace, friends!

My name is  Carolyn and I am a nurse practitioner who specializes in pain management.  I recommend that you be prescribed a time release such as Oxycontin and an immediate release med for the breakthrough pain...Be aggressive in your dealings with the MD.  You deserve to be free of pain. Carolyn

hello everyone!

My onc said some patients will be in some pain until the day they die ( I am one) depending on the severity and type of pain.  I too see a pm and it's a team of residents. I take quite a few pills used for bone and nerve (neuropathy as well) pain.  I take 20mg methadone in the morning, 10mg in the afternoon and 20mg at night.  Break-thru I take either 8 or 16mg of dillaudid every 4hours as needed.  Unfortunately my reoccurrence also left me with a lot of nerve pain as we'll.    I take 60mg Cymbalta every morning and 400mg of Nuerotin 3x a day.  I also take meloxicam for inflammation when needed as well.  Last but not least 1mg Xanax prescribed for 3x a day but I only take at night to sleep along with 5mg of Valium.  Normally I do not take the Valium it makes me nervous ha.  So do you wonder how I can get all that and take but I never ever am pain free except when I am lying down.  I worried that my Drs would think I was a druggie (I imagine some people might on this board as well)  but as my pm Dr. Said, "if you stumble, fumble, and out of control or high than you are taking to much and you are mentally addicted.  Right now my body is defendant on them which is a huge difference."  I had to hear those words to know that I'm in charge of my body the CEO if you will and our oncologists are or should be working for us at this point.  Stage IV to me gives us that right and it's all about Quality of Life.  I was given a week if not days Jan 31, 2013 when I was sent home with pain at level 20.  Hospice came in and everything to prepare for that day.  Here I am June .... Lol unsure some day in June 2014 all because I chose quality.  If I have to take 20 pills oh yah I have had several rad treatments, a cocktail of perjeta and herceptin every 3 weeks then a Xgeva injection to help strength in my bones every 6 weeks analog eith treatment as well as a daily Arimidex (which helps give me pain but keeps me on this side of the grass too) last but not least I just had the gamma-knife done from a new brain met.  If I need more or something else make your onc listen if ever your onc does not and they say no than you stand up for yourself!!  PS all these drugs I take (trick is to take on time even if u think you don't need it because you want to lead it not chase the pain) help me play with my 5 yr old daughter and allowed me to see a graduation.  It was preschool but reality is I might not see her HS one but I did see this one :-). I honestly have no clue if I made any sense but I hope I did.  Chemo Brain ;-) Main point YOU are your OWN ADVOCATE be smart be loud and BE PROUD!!  Good luck to all never give up  XO Jacquee'