Pain Management

[rudiger]

I had a CT brain scan and just off that was told that i had a Grade 4 tumour thats inoperable and that radiotherapy and chemotherapy would probably not work i was only given a 30 % chance of that working so i have decided not to do it.I am choosing Quality of life over quantity

I have been put on Nortriptyline and Codeine Phosphate for my pain management would you say that this is correct.

[OtisDaMan]

My aunt had a brain tumour, was operated on, and then a second one was discovered. Three weeks later she was dead. In a bizarre coincidence, her daughter - my cousin - was discovered to have a brain tumour roughly 10 years ago now. She is currently in a care facility - she falls easily and often needs help with getting into and out of a shower etc, but she is quite capable of holding a conversation, going to the movies etc. They can't remove the whole tumour because it wraps around and through the brain stem, but by periodically removing the component in the brain they have kept the likelihood of an early death to a minimum. She has also undergone various drug treatments and anti-psychotics/anti-convulsants to prevent seizures, but so what. I also take anti-convulsants for chronic pain control as do millions of other people - lyrica is my poison of choice.

My feeling is that you are on the right track to consider quality of life, but perhaps it is worth talking with some other patients in your predicament to see what they have managed to do about it. Maybe you will be surprised at what is possible now, as opposed to a couple of decades ago, concerning chemotherapy and pain treatment. For long term pain - being optimistic about life - is not well managed with codeine. Other drugs can inhibit its metabolism by the liver (nortriptyline can do this for some people, as can most SSRIs and tricyclics, unfortunately), and there is also something of an upper limit on what the liver can metabolise per hour - any more codeine is just colouring for the urine. Codeine is actually converted through liver metabolism into morphine, which is the active drug. If you respond well to codeine then morphine is also a possibility to consider, especially the MS-Contin (Morphine Sulphate, Continuous Release - a slowl release pill). Finally, if the codeine isn't enough the big pharmacological problem is that it is usually combined with acetaminophen (paracetamol), and the liver can be damaged if it receives too much aecetaminophen per day (2 to 4 grams per day is the recommendation based on current information, to the best of my knowledge). Practically speaking that limits Panadeine Forte (500mg paracetamol, and 30mg codeine per tablet) to 4 to 8 a day. The paracetamol is the limiting factor here, preventing a higher codeine level from being tried, although as I said above, codeine also displays an upper metabolic limit, maybe 350 to 450mg per day, maybe less than 240mg per day; it is quite individual because it depends greatly on the type of genes the liver possesses.
I would suggest speaking with someone from a reputable pain clinic to see if they have some alternative pain medications for consideration with respect to your condition.

Nortriptyline is used for both pain assistance and for depression. The pain assistance takes a few weeks to kick in, and then it may require some experimenting over time with the dosage, in order to find the best dose with the minimal side effects possible. Coincidentally I just started on nortriptyline too and I noticed a massive increase in dreaming, although after three weeks on it the dreams have faded away for the most part. Its worth sticking with it for a few months to see if it works, and if so what is an appropriate level for you to take long-term.

All the best, and I hope you have at least the chance my cousin has had - she made it to 45 which is more than 5 years past the expectations of others and herself - and may well make it to 50 with most faculties intact.
OtisDaMan

[porcheduzza]

I don't know why you would choose death over treatment. 30% is still an ok outcome. I recently completed chemotherapy and radiotherapy for stage 4 breast cancer that had spread to my lung. The chemotherapy cleared the tumour from my lung and shrunk the original tumour considerably. Now my prognosis is very good. The chemotherapy was no where near as bad as I thought and the radiotherapy was a walk in the park and just like having a bit of sunburn. Although the chemotherapy is not pleasant , I think my positive outlook did not let me get very sick from it. They give you all sorts of drugs to control a lot of the side effects. I don't know how old you are as I am 39 so your age may make a big difference as I have 2 young kids and have so much to live for . I am not telling you to do the treatment but make an informed decision and talk to doctors about side effects and find a support group for people with your type of cancer and talk to people who have done the treatment  as all chemo meds are different with different side effects. Good luck