I need some advice, please! My mother who is 71 has just finished radiation treatments (about a week ago). She had 3 weeks of single rad and three weeks of twice a day and had been doing well until the treatments stopped. Now she has a ton of swelling in her mouth (tumor under her tongue) and sores have developed. She is in constant pain and is getting 15mg of oxycodone(sp?)every six hours, and can get more for breakthrough pain. She is also experiencing alot of confusion...(forgetting conversations, the day, the date) They had also been giving her klonipin 3 times a day to get her to her rad treatments (the mask!), but have started to wean her off of this. I have been very concerned about my Mum's mental status. She is very cloudy and confused. The doctors have told me that it's probably the meds, but have not been open to changing them. I certainly don't want to push for them to cut them back, it's important that my Mum is comfortable, but I'm not sure how to handle this. The doctor who is prescribing the pain meds is my mother's primary care guy who is a geriatric specialist. I'm pretty sure that this is his first radiation experience...she is rehabbing at a nursing home and this seems to be his territory (she was being treated at a local CCC, but they have deferred everyday treatment to the primary guy). Should I be pushing for a med change? Should I ask for a consult at the CCC for pain? I'm feeling very helpless and am being treated as if I'm a little stupid for asking all these questions by the primary guy! Any advise would be appreciated. Thanks

Samantha

I would push for a med change. Most of us used Duragesic, 72 hours time release patches. Additionally, I had morphine sulphate for breakthrough pain. I am surprised that her MO isn't managing the medications.

Most people go through an adjustment period when starting out on long term opioids. Make sure that she is closely watched - meds, fluid and nutrient intake, assistance to the bathroom, etc.

If she has no MO here is a link to the NCCN Oncology Practice Guidelines for pain management - print and give him a copy.

http://www.nccn.org/professionals/physician_gls/PDF/pain.pdf

The pain will get worse for at least a few more weeks due to the residual effect of the radiation.

Pain management is a basic patient right - DEMAND IT!

Be assertive. You don't have to apologize for wanting your mum to get the best care possible. I think it is great that you are there to help support her through this ordeal. Squeaky wheel gets the grease...

Lack of appropriate or adequate pain medication is one of the single greatest failings for cancer treatment -- some doctors are afraid to give enough thinking the patient will become "addicted" -- as long as there is real pain, this is rare. Gary givesyou grera advice -- you *must* ber the advocate for your mother as she cannot do it for herself. You must DEMAND that she get correct pain management. Go to the CCC and speak to their patient advocate person (or equivalent -- the one who oversees these sorts of problems) and speak to your mother's radiation oncologist. Oxycodone is the least powerful of the pain meds, and it is usually given every 4 hours. Oxycontine is next step up but many, as Gary says, actually do better with Duragesic -- fewer side effects and supposedly less apt to cause mental fogginess.

A GP with no experience with radiation patients has no business being the "point person" on her care.

Gail

Oxycodone is great for headaches and it also contains acetomeniphen (Tylenol) It is a medium strength pain killer and not remotely adequate for this stage of her recovery.

Your mother is basically being tortured by inadequate pain medications. You may need to threaten them with a lawsuit, especially if they don't follow the NCCN guidelines.

She's the first one I have heard of who got Klonpin for the anxiety. Most of us got Zanax or Ativan

Make sure they wean her VERY slowly off of the Klonopin. My dad did cold turkey after a fall and he was totally delerious and diagnosed with dementia when it was really Klonopin withdrawal. It took weeks for them to give him back the Klonopin and then to take it away again slowly. It is nasty stuff to come off of.

Zanax and Ativan need a phase out also and they they are addictive.

Good morning!

I thought I would just update you all. Thanks to your advice I have spent the last two days straightening out my mum's meds. I finally got the GP and the RO together and they have decided that we would go with the Oxycontin...apparently because of my mother's weight (89lbs, 5'6") and age there is an absorbtion problem with Duragesic. She is still being weaned from the Klonopin, which is a problem. It also gave my mum a chance to talk about the level of her pain and by sharing some of your experiences...people who have already walked this path, she could be more honest and not be afraid to sound "like a baby"! I can not thank you enough for sharing your experience...it's so hard when you think that you are the only one who has gone through this. I truly think that was the turning point for her. When I told her about all of your replies she seemed so releived! So, thanks to all of you, I can effectively advocate for my mum, armed with the knowledge that I need. Thank you again for your advice and support.

Samantha

Oxycontin is very high-test and can lead to serious constipation problems -- be sure your mother is also getting a stool softener as well as a gentle laxative (usually combination is something like Senekot and Colase). It is also on the "Beer's List" which means it is a drug which can cause dizziness, mental confusion and risk of falling in the elderly so be careful to monitor how your mother responds to this. It is the same drug (an opiate) as Oxycodone but in a time-release, much higher dose.

I do not know enough about Duragesic absorption to speak to the RO's decision but it does come in very low doses (down to 12 mcg/hr). There were older people at Hopkins with about the same physique as your mom using the patches as the oxycodone/oxycotine was causing them too much dizziness and confusion.

Gail

Duragesic is a transdermal patch. My father had such dry skin at his age he couldn't activate "touch sensitive" lights or remote controls (thank God they did away with those). It is the moisture in the skin that lowers the resitance of the skin to a point that enough electricity (or capacitance) can flow through it to activate touch sensitve lights. That might be the answer to the absorption problem. For a transdermal system to work there would have to be a certain amount of moisture in the skin for passage of the drug transcutaneously. Although I suffered from hydration problems throughout treatment I didn't have any problems with the patch, but I was a lot younger.

ALL opioids cause constipation - even medium strength ones such as Vicodin (hydrocodone). She should also be taking Metamucil or prune juice, which is typical for elderly people anyway. I would think that they would have a handle on that in a facility like a nursing home. One more thing to check out.

I am delighted that we were able to help. Thank you for your feedback and kind words.