Topic: Pain Management

Ask for something stronger if you are still in pain.  Darvocet is not adequate for stage IV cancer pain.  It is not fair for your Dr. to make you wait for the chemo to make a difference.  If he doesn't help you, then find a Dr. who will.  Your QOL is most important right now.  Good luck.  Linda

I'm  so sorry about your pain.  I've been at Stage 4 for 5 years.  I don't think you can have bony mets without being on pain pills.  You MUST get stool softeners (I'd recommend taking them without the laxative additive) EVERY DAY.  There are long-acting and short-acting pain pills.  It took me quite a while to be able to stay awake.  ACTUALLY, it is  almost impossible to just "lounge", i.e., to be horizontal, even with your upper body elevated 50 degrees.  It seems like you need to be standing or sitting upright, if you want to stay awake.  Being horizontal, or near horizontal, will always put you to sleep.  BUT, the pills DO work at helping with the pain as you get close to the correct dose.  Don't feel badly about going that route; pain management is ESSENTIAL, NOT a "guilty" pleasure.  There really is NOT extra "pleasure" component to them; it's just good and HEALTHIER to get rid of the pain.  AND, try to get ahead of the pain; by that I mean:  do NOT think you can go another half hour before you take the pills.  It only makes it HARDER for the pills to work when you're already experiencing a LOT of pain.  My doctors and nurses told me this; I'm not just saying it.  ANOTHER THING I FOUND OUT THAT CAUSED PAIN:  lycra and spandex in ANY clothes:  especially if your mets are in your spine.  I think I personally DISCOVERED this, so I love to share the information!  I would have days that were much worse, and days that were much better.  I finally realized that the lycra in my beloved black tights (they helped define my ENTIRE wardrobe) were exasperating the pain.  Same thing wound up to be true with certain tops.  I finally found all silk tights from L.L. BEAN, but, they  wear out very quickly at the waistband (by the way, tight wastebands on any fabric clothing can have the same effect), and they are so baggy that they don't have the same "chic" look.  In fact, I feel like  I look like a freak in them, but I live up North and I never wear pants (small waist, big hips, huge things -- so, no regular pants for me.  Skirts and some kind of tights).  About the Zometa.  Make sure you see an oral surgeon at about the four and a half year date of taking this VERY NECESSARY MEDICINE.  Five years is when Zometa really starts to give jaw death.  Maybe your doctor can give you a break from it BEFORE this hits.  Zometa has a long half life, so stopping it doesn't mean the jaw death stops immediately, but the jaw bone will start to regrow when the medicine is stopped.  My tongue felt funny surfaces on my gums at about four and a half years of Zometa use.  I WISH I'd gone to an oral surgeon THEN, but I didn't know that is what early jaw death felt like.  NOW I'm off the Zometa until they think it is time for me to go back on.  But the funny feeling on my gums felt like the sand (not gritty) at the beach when the waves are VERY small, so that the sand is very wet and somewhat grooved .  If you get that feeling, go to an oral surgeon right away.  BUT, do NOT stop the Zometa early.  It IS an essential tool in the doctor's arsenal!  I'm sorry, I MUST go to bed now, I keep staying up too late on the computer, but I wanted to sign the petition about the mammography guidelines, so I just went to this website for the first time ever.  Then I saw your posting, and since I DO know something about your question from personal experience, I wanted to write to you.  By the way, I did forget to tell you to have lots of FIBER when you start pain meds.  I've found that half a cup of Fiber One cereal, the Original Style, is excellent to start with.  Some fiber cereals give you too much gas; Fiber One doesn't cause that problem at all.  Also, I found that having honeydew melon and/or cantaloup at least once a day helps.  They are BOTH hard to find sometimes; especially the pre-cut ones which you at least know are ripe and ready to go -- but other fruits do NOT seem to have the same fiber component, not even prunes!!  IF you have a Whole Foods near you, they seem to be the market that is best about having both those melons in cut up style thruout the year.  IMPORTANT!!!   Bye and nice meeting you!  I have no idea if you can ask me more questions directly, because I've never done one of these threads before.  I know that there are directions within the site, but pain meds DO make me almost too impatient to deal with technical matters.  I was like that before I had to start them, so maybe the meds just exaggerate natural tendencies, but I hate to read directions!  Bye!  I'll hoping you find the right combination so you can feel better!  Your doctors DO want you to NOT have pain, I'm sure!  Christine

Hi, this is Christine again.  I just saw the other answers you got from people.  GOOD answers!  Being new to this, I didn't realize I could be quite so frank, so I will ADD to my suggestion:  YES, you should ask for oxycontin and oxycodone, as the other posters suggested.  It is the oxy meds that make it difficult (for ME, anyway) to be horizonal-ish without falling asleep.  So, try NOT to relax in a horizontal position if you just want to relax.  To relax, sit in an upright, soft chair with a hassock for your legs.  When you start taking the oxy's, be careful about what you say in public places.  If you run into a friend, speak softly about feeling better because you've started the meds (as an   example).  You just don't want random people knowing you are taking oxycontin.  I do NOT want to make you fearful about this; it's just good to keep yourself safe by being aware of who knows you have these pills.  My pharmacist concurs.  OH, ALSO:  with MY health insurance plan, it took almost TWO years to learn that the doctor had to prescribe the  pain pills "for 30 days".  Otherwise, insurance only allowed the pharmacy to fill me for 24 days, and I was NOT allowed to re-fill UNTIL day 24.  In other words, I had to have used my last pill before I could refill; when the last pill occurred on a Sunday or holiday, it was torture.  Your plan may be different, but mine is a major U.S. insurance company, so you may find the same thing.  All the doctor has to do is to include:  "for 30 days" on the rx.  Bye for now!

Hi Kirby, I take Lyrica for nerve pain.  During my mastectomy I also had oophorectomy and unfortunately the gyn onc surgeon nicked some nerves across my lower abdomen, which led to me having to get a nerve block but they couldn't get it all so now have to take Lyrica everyday.    hugs, Bonnie

There are pain specialist who specialize in cancer pain; I've been seeing one for a year now; I was actually referred to him by my oncologst.