Back pain

[FortyWinks]

I’m getting rear rib pain that I largely feel when lying down and in certain body movement. I do have a little spread to my front ribs. Not sure if this is something to worry about or yet another consequence of the PC and/or medication. My PSA is creeping up though my oncologist it not concerned at the moment. Any similar experiences out there? Many thanks.

[JohnInTheMiddle]

Why is your oncologist not worried? Have you had some sort of scan? Also as far as I can see you haven't had any chemo such as Docetaxel. When people say back pain then I think back to the discovery of my cancer. Growing back pain over 6 months and then a complete and horrifying surprise to me and to my "not exactly up to date" physician. Mets in my spine and around my ribs. Severe pain. PSA at 1,700. In some ways fortunate that it was too late for surgery or radiation.

But I have thrived on triplet therapy which includes sort of what you have plus the chemo. And the PSA was pushed down to and has stayed at zero.

Hope and prayers are nice but a scan is better. Especially if it leads to chemo when chemo is appropriate. May I ask if you have read about the various studies that recommend triplet therapy? Where you don't do one thing or two things after another but you just pile it all up?

[FortyWinks in reply to JohnInTheMiddle]

Grateful for you taking the time to respond. The oncologist says she is not concerned until my PSA gets near 5 and that docetaxel is probably the next response. Will also order a scan at that point. PSA up to 1.2 earlier this month and CT in July showed everything stable. If the pain continues over the holiday period, I think I’ll notify the oncologist.

[JohnInTheMiddle in reply to FortyWinks]

So your oncologist "is not concerned at the moment". This is a comforting thing to hear when one is in the normal world we came from. But now we are in the world of seriously metastatic prostate cancer, which is a terminal diagnosis where most metastatic prostate cancer patients will no longer be counted among the living at 5 years.

If you get Docetaxel then you'll be on triplet therapy! I don't know if triplet therapy is standard of care in UK yet. In many places it is not yet SOC. And so oncologists do one thing and then another thing, sequentially. And as per the first paragraph, eventually the cancer wins.

Sometimes, in some jurisdictions, one can get triplet therapy under a special access program.

So it would be interesting to know if your oncologist is familiar with the big clinical trials such as STAMPEDE and CHAARTED. The conclusion is "pile everything up all at once and don't wait". Okay they stop at three things, i.e. triplet therapy. Which means adding Docetaxel on to your regime right away. Maybe there are reasons why you're oncologist has not done this yet. (From my own experience and from reading about some of these trials I also conclude that time is of the essence. "Watchful waiting" is fine before metastasis. But post metastasis, urgency is the order of the day! Waiting to "see what happens" leads to "advantage cancer"!)

My PSA only went down to zero after the initiation of Docetaxel. Every little while, when I get my blood work done, it's always a lot of anxiety - "Is it still '0' or is it moving up a little bit?"

My understanding is that, all things being equal, PSA only ever moves in one direction from nadir. A little bit becomes a little bit more and then we have enough numbers to calculate doubling time. And hello resistance.

You asked about similar experiences and that was a trigger for me to recollect how pain was the signal that over 6 months led to the diagnosis. Sometimes pain is just pain of course - and recently I made a big post, which got a lot of replies, on distinguishing between muscle pain and metastasis pain. Fortunately it seems to have turned out to be muscle pain! (However an MRI is scheduled ...)

I accept I live in a different world now and that complacency is not on the menu. It's exhausting. But I'd rather live longer. And I'm grateful that my oncologists qualified me for triplet therapy.

And speaking of exhausting it's hard to exercise when one is exhausted. But as per some of my other notes and replies, exercise is not only good for quality of life but maybe it might help us live longer.

I hope my comments are not in some way unwelcome, in which case I apologize. Here's a reference that summarizes the clinical trials I mentioned above. ncbi.nlm.nih.gov/pmc/articl...

[FortyWinks in reply to JohnInTheMiddle]

Thank you JohnInTheMiddle again for your considered response. I have an idea of what I want to do next and not the oncologist wants. I’ve been grateful for 3 years + but I want more unless that comes at a cost of quality of life.

[Tall_Allen]

Probably nothing because metastatic bone pain is usually unrelenting, but worth getting checked out.

[spencoid2 in reply to Tall_Allen]

My metastatic bone pain has subsided. Not sure if it is the naproxin, the morphine, or the Pluvicto. Have other pain that definitely needs the morphine at times. I hope it is the pluvicto doing its job but it is probably too early. really difficult trying to figure who is doing what to whom and with what.

[Benkaymel]

When I had bone met pain, I was given palliative radiotherapy to the areas which did a good job in dealing with the pain.

[Bigblock in reply to Benkaymel]

Yeah I've just had the same, palliative radiotherapy for pain relief to my lower spine and pelvis, did seem to help, still got massive pain down the back of my leg though, feels like its my hamstrings, still getting massive sharp stabbing pain from spine, through hip and to my knee, probably feels like what people get with sciatica, it's a 10 when i move so have to spend most of my time in bed or make it to sofer downstairs, got a new one this morning, pain when i breath in if I'm leaving forward, diagnosed with it in my ribs and lungs so maybe coming from that, it all seems to be catching me up fast now, just can't move without loads of pain.

[FortyWinks in reply to Bigblock]

sorry Bigblock. That sounds grim.

[Bigblock in reply to FortyWinks]

Yeah cheers mate, it's alright, i just deal with things as they come along, not much else i can do, i try not to let things get to me, my glass is always half full, so i just enjoy things when i can, the pain is just very restrictive, that's a bit frustrating at times, but hey we're all going through it in one way or another.

[Hidden in reply to Bigblock]

For what its worth...I had horrible pain following radiation to my rib. Nothing worked except gabapentin. I worked up to 2700 mg/day. It made me even sleepier than my other meds but beat the pain.

[Bigblock in reply to Hidden]

Ah yeah im on Gabapentin for nerve pain, im on 1800mg/day, got a pain specialist from the hospital and she likes to keep meds as low as possible but using different drugs in combination for a synergistic approach cos she says Drs just like to throw drugs at you, but she uses them synergistically so im pleased to have her on board, I'm diagnosed as terminal so it's just management now, found out today that my lung pain is probably fron clots in my lungs, there bringing me oxygen tomorrow so that one should get better over time, having to blood thinning injections now in my stomach, taking so much stuff now i rattle 😆🤣😂

[Hidden in reply to Bigblock]

Best of luck to you Bigblock!

[Bigblock in reply to Hidden]

Thanks mate, and to you👍🙏

[katartizo61]

Hoping it's not shingles, that just happened to me.

[FortyWinks in reply to katartizo61]

Good thought but I had shingles a couple of years back & this feels quite different. Will keep a look out though.

[j-o-h-n]

Give your M.O. a 41st wink, then she may see the light regarding your pain...Happy Painless Christmas to you (and to all).

Note: I wish to offer my apologies if I offended anyone regarding my so-called humor about "race" or "misogyny". To me, humor is boundless and since we entered this word crying, I thought it would be a good idea to exit laughing.

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 12/19/2023 2:51 PM EST

[MrG68]

Where's the harm in just getting it checked now - regardless if your ornicologist is concerned or not. I'd rather have it checked and be wrong than be wrong by not getting it checked.