When one thing in your battle with prostate cancer becomes so overwhelming that all other issues are reduced to “no big deal”, what do you do?
My issue is pain. Even before diagnosis pain started as an early indicator that something was wrong. Now it has become so overwhelming that I can barely move. Provider appointments are Thursday and Friday.
It is dark and lonely. I lack optimism that medical solutions are out there. How do you recover from these situations?
Several years ago, I developed a chronic painful injury. I saw a physical therapist who tried to tell me that I had to “look at the pain differently” which sent me into an internal rage.
Chronic pain is horrible and I’m sorry to hear you are dealing with it. I understand how people end up dependent on pain killers.
I hope your Drs are able to provide treatment and medicine which can reduce or eliminate your pain.
Use marijuana.
Hey Twoofus . True! Pain can take over everything? I’m sorry ..what kindof pain and where ? If you don’t mind me asking?
Have you had any imaging to help find if any pain areas are definitely associated with metastases? If so, perhaps SBRT spot radiation may help..... not a cure , but palliative.....which sounds like what you need ASAP. Have you contacted any center of excellence and asked for referrals to a specialist? Is there a well-regarded med school within traveling distance? Evidently ADT is not effective at this point.....sometimes that greatly reduces the metastases and associated pain, as you already understand of course.
This may be of interest and help with additional ideas......
Two answers:
1) Focus only on the overwhelming issue. I've ignored other symptoms and canceled "off-topic" appointments. If the overwhelming issue isn't fixed, nothing else matters.
2) For the overwhelming issues I've had, including pain, effective cancer treatment has far and away been the most effective remedy. I had increasingly painful urination for months before a tumor was found in my bladder. One infusion of platinum based chemo dramaticly dropped the pain level.
The caveat is that chemo always causes me some amount of pain that's managed with drugs, but it's not the kind of pain that redefines what "10" means that I've experienced from cancer. Hope that's helpful.
Get to a palliative care specialist. I had incredible pain where I could barely walk. I’m now on fentanyl patch that has taken away my pain with minimal to no side effects. We started with low doses and worked ur way up until the pain was gone.
Stay strong we are all on this journey together.
I've found oncologists don't want to give me anything. They talk a good game when you sign on but once you talk pain they get off the phone quick.
I agree with you neither of my oncologists would prescribe something for pain. My medical oncologist did recommend me to my palliative specialist who has been a god send in dealing with severe back pain, nausea, and neuropathy.
Also they do natural remedies as well which I like.
I'm glad it works for you. If one has a job, all this buck passing could drive you crazy , if retired u have to stand it there's nothing else. In the old days, oncologists handled everything. Now no one wants to hand out addictive medications. They'd rather send you to a pain specialist.
I agree but given the level of addiction I understand their reluctance . Being stage IV with spinal compression I could barely walk. Now2.5 miles daily
Jack
It appears we are twins on this one. I was diagnosed this afternoon with spinal compression on top of my stage IV. Guess I never knew pain.
Please slide insights my way.
Doug
Doug,
I know the first time it hit I couldn’t walk on my own and the pain was unbearable. In talking with the palliative care doc. We focused on the pain first with 30mg of morphine 4 times daily, we ended up at 75 mg 3 times daily. I have recently broken through the morphine with Oxy for breakthrough pain. I am now on a 3 day fentanyl patch which work great on the pain.
So my advice is start at a low level until you find a dose where the pain goes away and then have a kicker for breakthrough pain days. If I have 3-5 bad days in a row even with breakthrough meds I contact my doc and we see what might work.
I was concerned about going on opioids but I couldn’t take the pain. I’ve found I don’t have pain or brain fog with any of the drugs I’ve used,
Hope this is helpful.
Jack
Jack,
Thank you. I believe you (and your doc) are on the correct path. I moved several months ago and am still establishing new provider relationships. Even the pain guys seem afraid to allow us stage 4 dudes with significant pain to ease this burden as much as possible.
Good luck as you continue this part of our journey. I hope to get back to your status soon.
Doug
You join a local support group.You participate in this forum.
You get up every day and do something physical.
You get up every day and follow a spiritual practice.
You use medicine to reduce the intensity of the pain.
You use your body and your mind to reduce further the intensity of the pain.
Great advice. Even though I usually don't take advice from cat people.
I'm Bi: cats and dogs
That's funny. Some perverted people, they know who they are, like chickens.
Pluck you. I have a feather to pick with you.
lol x 5
That is from the following worst seller: Jokes for Mega Dummies by j-o-h-n
That's the last time I'll give you a dedicated signed autograph book to you...(and at 1/2 price too)....
Good Luck, Good Health and Good Humor.
j-o-h-n Wednesday 02/10/2021 7:07 PM EST
Eh...you would think you'd be gratefull for the plug.
Your two books: Thinking for Dummies and Jokes for Mega Dummies are on the
Amazoo best seller list after my endorsements.
Also on Amazoo audible. Read by the author. Couldn't understand a word he said, but the hysterical laughing will keep you up till dawn.
Thanks for the plug........ I'd like to give you a plug from my new book: You're on top of the "List of Mega Dummies who buy and read my books"
The Next one is on "How to Kill Friends and Acquaintances for Dummies"
I expect the Kill book to sell like hot cakes...........
Good Luck, Good Health and Good Humor.
j-o-h-n Wednesday 02/10/2021 7:38 PM EST
I am sorry you are in a dark and lonely place. My chronic pain is j-o-h-n. He has an endless supply of bad jokes, gags, puns and one liners. Three Tramadols a day lessens this pain. Jackpine seems to give good advice. Your pain has been with you for so many years, I would be foolish to try to give you any advice. Hopefully someone can figure this out for you.
Twoofus I am so sorry you are in such pain. My heart goes out to you in your suffering.
My husband was diagnosed based on intractable pain that wouldn't go away. From the beginning, he has a great primary care physician who is completely supportive of the need for effective pain management.
In short, it's imperative to find a doctor who will work with you to help you get relief. Opiates are effective for many people--they have allowed my husband to function for many years. He describes his pain as "a burning coal in my back." Opiates have literally saved his life--he couldn't go on living with that kind of pain, 24/7/365. Someone who has not experienced unrelenting pain, either in themselves or in a loved one, cannot understand how brutal it is.
Unfortunately, depending on where you live, you may have a hard time finding a doctor who will prescribe effective pain meds such as fentanyl or oxycodone. It's also likely that you will get all sorts of people giving you ignorant opinions about how awful opiates are and try to scare you off from getting effective medication.
YOUR life is YOURS to live, however you can manage that. It IS possible to manage pain for a better quality of life. Don't give up! Keep fighting for your right to find relief from your pain.
(For mods: I posted about my husband's pain management recently on this forum but was personally attacked by a troll who went on and on with absolutely irrelevant information. Mod didn't back me up and I had to delete all my comments, and I considered leaving the forum altogether due to this harassment. If this happens again I will make an unholy stink about it!)
Overwhelming hot flashes. Orgovyx/Relugolix
Dropping Stuff
Cant find old post about PCa overwhelming body.
'Other stuff' that increases PSA values 
