cancer pain?

[ellie2211]

how does cancer pain present? Does it bounce around different areas on different days?

My dad seems to be worsening very quickly. He is on Xofigo. We are devastated.

[Fiddler2004]

One of the side effects of xofigo pain. ( low back, side and chest) has anyone of the docs had any suggestions to mitigate the discomfort? Does your Dad have a palliative care specialist? And yes my pain moves around daily/hourly. I find not staying in one position too long helps. I also use topical vicks vapo rub and CBD Oil with THC to rub on the spots. Usually the spine, and pelvis are the worst. Advils, low dose Prednisone and others that can be discussed with a pain management specialist 🙏

[ellie2211 in reply to Fiddler2004]

Thank you for sharing your experience. I'll pass it along to my dad. We aren't sure if the pain is due to the Xofigo or cancer growth, most likely both. His PSA has skyrocketed unfortunately. We are seeing his doctor tomorrow.

[Fiddler2004 in reply to ellie2211]

Best of Luck with your appointment 🙏

[mrscruffy in reply to Fiddler2004]

Mine was located only in the pelvis. Got no noticeable results from CBD or THC. I got quick relief from Psilocybin. Pain subsided for 3 weeks until radiation eliminated it. Still using Psilocybin on and off just in case and for fun

[Fiddler2004 in reply to mrscruffy]

That'll do the trick 🙃 Good to Know 🙏

[Kaliber]

I think that most guys don’t have much pain , due to cancer, most of the time. When trouble spots do show up, radiation usually fixes those . Opiate pain meds work wonders for more persistent Mets. I have a substantial amount of pain issues but I was DXed late and I have huge met pain load caused deformations in my spine, knees and feet. Cancer had its way with me before I was DXed and damaged my bones in a lot of areas. My case is pretty unusual, I think. ADT SEs , in some people , can cause discomforts, but usually pain meds relieve those pretty effectively. I hope your father’s pain issues get managed quickly, his pallitive care pain mgt team or his pcp should be able to keep him comfortable most of the time.

Good luck with his visit tomorrow.

❤️❤️❤️

[spencoid2]

My pain varied day by day with no rhyme or reason. Now I am doing Pluvicto and it is largely gone which is a relief. All I can suggest is to try everything and enlist the help of a pain specialist if it seems appropriate. I was ready to do this but am having a respite due to (i think) the success of Pluvicto reducing my lesions to the point of no longer being painful.

Before that I experimented with NSAIDS together with low dose morphine. I was able to reduce the pain level so that I could sleep better. If your pain is severe you probably need the help of a pain specialist. It is easy to "abuse" opioids and to develop resistance to them.

[Bigblock]

Yeah my pain seems to be a bit like the game Whack a Mole, seems to jump all over the place, pain meds do help, I've got a pain specialist Dr which i think is worth having as my GP's just want to throw more and more at me, but she says if you have to much opiates they can have the opposite effect, she calls it free floating, its where the excess isn't being used to control the pain, the excess actually then starts to cause pain, then you think you need more meds and just jeep making the problem worse, my specialist uses a synergistic approach with different pain meds working together, im on Oxycodone and twice now she's lowered my dose not increased it, it's a careful balance between having to little or to much, so I'm pleased to have a specialist on board rather than relying on my GP, the Dr's at the hospital openly admit they don't have the knowledge of my specialist.

[Izzygirl1 in reply to Bigblock]

I didn’t realize more pain meds could actually cause more pain!?! My husband is taking 4mg of Dilaudid every 3 hrs and they just increased his Fentanyl patch to 75mg. He still had terrible back pain today. 😞

[Bigblock in reply to Izzygirl1]

Yeah i didn't realise that to, not sure to many people including Drs do either, but my pain specialist is very knowledgeable, she works out of our hospital where i go, she's very qualified and has written a book and i have confidence in her when i see her, and she has reduced my opiates 3 times, it seems to be a careful balance of not to much, not to little, and her focus is synergy of pain meds, she also took me off Fentanyl which i think is called Abstral here because of the SE's sounds like it can cause bleeding, but i was taking it orally, but i only take 100 mcg, i asked if i could still have a bit, my GP didn't want to give me it and my specialist said i could but only in emergencies, your husband is taking 75 mg, wow that sounds like a lot to my 100mcg, if more works then that dose i hope he is completely pain free, I'm not pain free when i move, but ive only recently started seeing her so she's trying to find a balance, my GP increased my MST (morphine) to 70mg twice daily, the she reduced it to 60mg, then she changed it took 30mg Oxycodone because you need half the amount as morphine, and now she's reduced tha to 20mg twice daily which is what I'm on now, and it's not low because i don't need it, i am diagnosed as terminal and it's spread everywhere, last night i may have broken some bones on my spine an need to go to hospital cos I'm in a lot of pain now, but she knows where i am which is why ive been put on to her, she takes the more tricky cases, I'm basically trying to say if you can get a specialist pain Dr i would recommend it as that could possibly help with his ongoing QOL, and unless i had my specialist i wouldn't have know either that more meds can lead to more pain,I hope this helps and wish you both all the best 👍

[Bigblock in reply to Izzygirl1]

Oh this is extra to what i just wrote, i was having terrible back pain to, so i had low level radiotherapy to it and that got rid of a big chunk of the pain, more so than the meds.

[Bigblock in reply to Izzygirl1]

Oh i might add my specialist was talking specifically about opioids, which might shed some light on this opioid crisis with people taking more and more, causing more pain then taking more to stop the excess pain and just spiralling down in addiction, which the pharmaceutical industry and Drs just been fined billions for knowing and deliberately causing this opioid crisis, they just want to give people more even if it causes more pain, because it makes more money, so again i think this is where a specialist is good to have on board.

[Izzygirl1 in reply to Bigblock]

Thank you for all this info!!!

I hope you didn’t break any bones and you are resting at home comfortably!! 🩷

The doctor will be talking to us tomorrow about hospice. My husband won’t be getting any more Pluvicto. 😢

[Bigblock in reply to Izzygirl1]

Ahh bless you, i don't think I'm far off myself, it's a horrible thing to have to go through but it catches up with all of us eventually, my heart goes out to you and everyone in that position, it's hard on partners aswell, take care and hope you can still have some lovely moments together ❤️

[pe43]

You might find this short article of value, it's from a Mayo Clinic book "Mayo Clinic on Prostate Health".

mcpress.mayoclinic.org/canc...

[CAMPSOUPS]

Ellie seeing your and dad's bio page you have done a lot to support him. A special thank you for all you do.

I have heard of the initial couple of Xofigo infusions resulting in bone pain but I can't recall if Xofigo like initial chemo, and sometimes Pluvicto raises PSA due to die off of PC cells killed by the treatment showing up in the PSA test. Maybe? How many infusions of Xofigo has he had?

As to cancer bone pain in general does it bounce around. In my case no. When my PC is progressing the pain often occurs in the same places where some of the worst bone mets are present. Upper and mid femurs and hips, right shoulder and scapula, and some in lower spine. One of my MO's from a couple years ago confirmed to me that ligaments are sometimes attached to the bone at the location where a bone met is. I have had this and the pain then of course was pronounced with movement.

[CAMPSOUPS in reply to CAMPSOUPS]

Why I asked how many Pluvicto infusions he's had is my PSA jumped after my first Pluvicto but sounds like his is rising after multiple infusions?

Here's my PSA results so far:

8/21/2023--PSA 343

8/29/2023--Pluvicto

9/13/2023--PSA 840

10/3/2023--PSA 702

10/11/2023 Pluvicto

11/08/2023--PSA 519

11/22/2023 Pluvicto

12/13/2023--PSA 278

2/1/2024------PSA 130

2/15/2024 Pluvicto

[ellie2211 in reply to CAMPSOUPS]

That's great that pluvicto is dropping your PSA. Glad to see it!

He's had 2 Xofigos ...but he was hospitalized this past weekend for complications with his oxygen levels... we're not sure if it is related or if it will delay his next one

[CAMPSOUPS in reply to ellie2211]

Oh my. I'm sorry to hear that. This journey has its ups and downs. I hope he recovers his O2 level.

[ellie2211 in reply to CAMPSOUPS]

Thank you, he is feeling better at home today