How to Find a good pain management and/or Quality of life specialist for an advanced metastic prostate cancer patient

[chascri]

My quality of life has gone down greatly over the last six months. I believe it is the result of the side effects from the pain medication (50mcg/hr fentanyl patches and 4mg Hydromorphone tablets every 4 hours as needed) and Xtandi (4 40mg capsules every 4 hours as needed) which I started August 15. I think I need a good pain management and/or quality of life specialist. Any suggestions or ideas would be greatly appreciated. A summary of my treatments since diagnosis is in my profile.

[gusgold]

C,

Holy Nalakrats...the Xtandi dose is 4 caps per day...not 4 caps every 6 hours as needed

[chascri in reply to gusgold]

My typo that should be four capsules nightly not every six hours as needed

[ctarleton]

So sorry to hear of your persistent pain. You have already been through so many treatments, and have had those painful spinal failures due to bone mets, as well.

You might possibly find a relatively nearby palliative team provider using this search tool:

getpalliativecare.org/howto...

Or by asking your doctor(s) for a referral.

This paper discusses some strategies for managing some of those side effects. It may provide ideas to discuss with your care team.

ncbi.nlm.nih.gov/pmc/articl...

Charles

[chascri in reply to ctarleton]

Thanks for the link I will check it out. Already see one

Possibility.

[Hidden in reply to ctarleton]

Great article on pain management. Learned a lot. Very useful information there. Bookmarked that one for future reference. Thanks.

[Hidden]

17 years out with a diagnosed gleason 8.

I think you have had a lot of appropriate treatments, getting at problems as they show up in PSA elevations. The fall and spinal fracture is unfortunate, but that spot may have been weakend to start with.

Provenge is said to be an immune therapy. The trials show a statistical advantage, but it can vary by individual.

Are there any immune therapy trials that you are eligible for? Or something (cabazitaxel??) to try to get the cancer off its game, so that you could be eligible?

Do you know how to search the government clinical trials site?

[MrJack]

Hello Chascri, I too am suffering from metastatic prostate cancer, tumors all over my body, lately my pain is in my lower abdomen, it comes and goes, my palliative care doc. says to use my pain meds as needed, not all at once, but spread it out over the day. my main pain relief meds are

Norco, and Oxycodone , if I need to I can add hydromorphone, then I have some anti anxiety meds and some ambien if I need it, I am being offered the fentanyl patch but I'm saving that one for later. any way.... good luck, do what you got to do.. don't take too much, try some THC.

thanks

jack

[Ian2017]

The Fentanyi patch has worked well for me and I used it for about 8 weeks after radiation down the spine. Upped the dosage from 12 to 25 to 50 mpg/hr. However, my pain is now greatly reduced so I have stopped using the patch. I take one Targinact in morning and evening and supplement if needed with OxyNorm.

About one month ago I developed occasional breathlessness always only at resting and often as I fell asleep (I wake immediately gasping a bit for breath). I still don't have a clear answer to the breathlessness - I have been through a comprehensive cardiology examination which showed heart in good shape as well as a CT scan which showed me clear of clots). However, I did read that one of the side effects of Fentanyl was occasional shortages of breath so one advice of my physician I stopped using the patch two weeks ago. Breathing problem went away immediately only to return during these last 2 days. I don't know if I can attribute this to Fentanyl and am keen to hear if anyone else has had this problem.

[ShenStone]

There is an online university called “ Coursera” take their class on PAIN. It is the finest collection of the factors that cause pain and the comprehensive approach required to live with chronic pain.

[cesanon]

1. There has been a lot of noise lately that a significant percentage of people who are prescribed opioids become addicted to them very quickly... like within weeks. So you may find it not so easy to stop using them. I guess that just varies from person to person.

2. There was also a study saying that over the counter pain medication is as effective as opioids for the purpose of pain reduction.

3. There is research supporting the use of Resveratrol infused cream to reduce pain:tedsbrainscience.com/pages/...

The professor behind the research was not able to raise sufficient funds to do an FDA approved trial, so he mixed it with salicylic acid (a proven pain reliever) and is selling the cream. He has good credentials:

tedsbrainscience.com/pages/...

And he has a lot of theory backing him up. It might be worth a try.

4. You may want to be wary of Cannabis though. Cannabis is being used a lot for cancer related pain lately. I talked to Dr. Myers about this. He had an almost emotional objection to its use by prostate cancer patients. Prostate cancer cells have a greater concentration of cannabinoid receptors compared to normal prostate cells. So you would expect some kind of effect. Dr. Myers casual observation is that there seems to be an effect, an adverse effect. His subjective assessment is that those of his patients who self medicate with cannabis, seem to get more aggression in their prostate cancer. He said he didn't have statistically valid data to verify or confirm this suspicion.... just casual observation. And certainly correlation does not mean causation. He did confirm that at the same time it appears to clearly be good a pain suppression. But you may want to think twice before trying cannabis for pain control.

[Hidden in reply to cesanon]

A correction is in order here. #3 states that salacylic acid is "a proven pain reliever". Not True. Salacylic Acid is a wart remover.

#4 is a lot of gibberish too. Snuffy's "almost emotional objection", "his subjective assessment", "just causal observation". This doesn't sound at all like the Snuffy Myers I've read so much about here. It sounds to me like you are objectionable to Medical Marijuana. Not me.

J

[cesanon in reply to Hidden]

Hmmm

1. My error. It is "Methyl Salicylate" (as opposed to salicylic acid, traditionally used to make aspirin) that is listed as the active ingredient in order to pass FDA labeling requirements. The true active ingredient resveratrol (based on Dr. Price's peer reviewed research) is listed as an inactive ingredient because of the lack clinical studies verifying its pain killing activity. See:

tedsbrainscience.com/produc...

2. I have no ideological objections to Cannabis. I am actually invested in the Cannabis industry. And I am familiar with the endocanabinoid system and have great respect for what it may eventually produce in the way of clinically proven pharmaceutical treatments.

3. Homeopathy and folk remedies do not impress me though.

4. Both regular prostate cells and prostate cancer cells have CB1 and CB2 cannabinoid receptors. The difference is that these receptors are more plentiful in prostate cancer cells.

Given the way endocanabinoid system functions it would be reasonable to assume that cannabiniods likely increase or decrease some activity differentially between prostate cells and prostate cancer cells. That is, it is reasonable to expect cannabinoids to either suppress or accelerate the activity of prostate cancer cells compared to non-prostate cancer cells.

5. "This doesn't sound at all like the Snuffy Myers" Yeah, I know, it surprised me. It actually took me back a bit. This was on an interactive telephone call.

I decided to just not say more about the subject at the time. I did follow it up in another subsequent conversation with him.

Myers has no clinically verified proof of his suspicion (he is always careful to base his opinion on clinical studies). How would you even run such a clinical trial in today's regulatory environment?

I at first thought his vigorous objection to cannabis was because he wanted to head off any request I might make for a prescription that I could take to a dispensary.

When I followed up the subject in a subsequent discussion, I came to the conclusion that it may instead have been a result of frustration at some cohort of his patients with accelerating prostate cancer continuing to religiously take cannabis for its "medicinal effects" and disregarding his recommendations to refrain from doing so.

[Hidden]

Smoke a blunt!

[George71]

Have you looked into Yervoy or Keytruda immune therapy also Dr. Kwon -- look up Dr. Kwon Mayo Clinic on youtube