Another week of complete agony

[bglendi53]

Over the past couple months I have had 3 episodes of extreme pain that last 2-3 days and they magically go away as fast as the came. The pain is most always in areas where I have bone mets, so I don't know if it is directly because of the mets, or maybe caused by Lupron and/or Zytiga.

This past Tuesday I woke at around 2:00am with another round of extreme pain and figured here we go again, get ready to ride it out for the next few days. Well that didn't happen this time, the pain continued to get worse in my hip and shoulder. It was so bad that I ended up in the emergency room Saturday night trying to get some relief with the pain. After 4 hours and getting x-rays too, the conclusion was arthritis, lol. The pain felt like someone was trying cut my leg off with a huge knife, excruciating is the only word I can use. I also could not raise my arm above my should, same excruciating pain. So they gave me Hydrocodone and told me it would help withthe pain, it did nothing. I spent the next two days using a walker to get around the house. It was unbearable pain. Just tonight it is starting to lighten up.

I think it is the destruction of muscle and tendon mass caused by ADT. My oncology team does not agree. I'm at my whitt's end and am looking for others who may have had this kind of intense pain. I've been on ADT for just over two years and never even came close to having this much pain.

[Battle_on]

Have you had a PET scan lately? It could be disease progression. Don’t just rely on PSA numbers. I’ve also read where Xgeva and similar bone hardeners can temporarily cause extreme bone pain.

[bglendi53 in reply to Battle_on]

I had a PET two months ago and I know where the mets are.

[Tall_Allen]

You may want to get a consult from a rheumatologist or an orthopedist. Not everything is due to cancer. Good to rule out other causes.

[bglendi53 in reply to Tall_Allen]

I agree, a lot of this feels like muscle pain. Funny thin is that I have chronic mid back, but when I have these episodes, the mid back disappears. Then comes right back when the severe pain subsides.

[Mecrispy77]

good morning sir and thank you for sharing. I believe I have your issues to look forward to. I have only been on Lupron for 90 days and Xtandi air for a little over a month. working on my farm are usually lift 3 to 5 gallons of water and I’m OK, since then it feels like spinal stenosis and a knife in the upper middle of my back when I’m lifting that. And it radiates out to the front of my chest. I ambulance ride to the hospital thinking cardiac issues. The urgent care sent me there. ER said the heart looked fine you must have GI issues. My uncle chiropractor look me over, said everything is out of place, all my ribs were twisted and not holding placement. I had to lower my watering down to 1 gallon at a time to ease any type of strenuous bullshit on my back. Sucks. Sucks. Sucks.

[bglendi53 in reply to Mecrispy77]

That's what pisses me off when we can't even do basic everyday things.

[bglendi53]

I've never had any luck with PT, but I live in a small town and I don't have a lot of options.

[Guy61]

Sorry to hear your not getting the pain meds you need,my hip and shoulders ,ribbs lower back leggs ,tumor right hip and neck ADT treaments wor hold it at bay and striods and morphine 60mg er,15 mg ir2x to 3xs daily, stiariod helped when nothing else would .

Yes i need to update my page.

[CAMPSOUPS]

I am totally speculative especially since I am not you and cant feel what you feel.

You could discuss with your Dr. something my MO told me about a year ago.

It is surmised some of my pain and limited range of motion is from damage to tissue and in the case of my right shoulder/scapula ligament damage. Caused by bone mets that infringe on the nearby tissue, ligaments.

My pain isn't constant either but not near as bad as yours nor does it last as long.

[bglendi53 in reply to CAMPSOUPS]

My problems is that I have had a lot of chronic pain in those areas for years, but I can't get my MO to help determine if it is cancer pain or maybe even a combination of both.

[CAMPSOUPS in reply to bglendi53]

I wonder if your regular MD would be more helpful in that regard.

[bglendi53 in reply to CAMPSOUPS]

I don't even have an MD, just a PA. This is way too complicated than just regular pain. Im looking for an orthopedic or rheumatologist, but I must admit I don't have a lot of faith.

[Seasid in reply to bglendi53]

why don't you consult a neurologist?

maybe you could get an MRI of your spine? At least you would know that you will not get a spinal cord compression.

[Benkaymel]

About 9 months ago - well before I knew I had PCa, I was getting extreme pain in my right pelvic/buttock area that continued down my right leg to the extent that I was on crutches at one point. I assumed it was sciatic pain and went to an osteopath. After about 4 painful sessions, the pain in my leg was gone and down to just a dull ache in my buttock.

On Dx for PCa, my MRI/CT scans showed a fairly large tumour on my right pelvic bone and the CO asked if I had any pain from it. At first, I thought not but then realised that the extreme pain I had before was due to the bone met and not sciatic after all!

I started ADT and while I can still feel the dull ache of the met, I have never had the level of pain I had 9 months ago so perhaps an osteopath could help you too?

[Brianne07]

When i found i had a very high psa 370 now down to .1 and bone mets in neck and other parts of bones spine and hip areas.What originally felt like normal neck problems, arm pain and "sciatica" down the leg turned out to be pressure on my spinal cord.One radiation zap at the neckand no more pain .Sleeping really well ,the best for years

[Seasid in reply to Brianne07]

wow

[Seasid in reply to Brianne07]

could you feel out your profile?

where are you located in Australia?

i am in Sydney, Darlinghurst

[Brianne07 in reply to Seasid]

i am in the eastern suburbs in Sydney and go to the KingHorn Cancer Centre in Darlinghurst.I wiil start in maybe 2 weeks the generic Zytiga.I have been on hormone therapy since the start.Finished Docataxal (chemo) about 4 weeks ago.Regards Brian

I see Professor Anthony Joshua

[Seasid in reply to Brianne07]

i am also professor Anthony Joshua patient and I just had my 68GA PSMA PET/CT and looks like that all my bone mets gone. Now I have only PSMA positive cancer with SUV MAX14 in my prostate and in my left vesicles.

i am going to have a consult with genesis care with the radiation oncologist in order to consider MRI Linac of my prostate and full pelvic floor radiation.

you are 4 years behind me.

i was diagnosed with more than 15 bone mets in April 2018. Started Degarelix injections and 2 months later I had early docytaxel chemotherapy.

since thn I continued with the Firmagon injections. My last PSA was 1.26

[Seasid in reply to Brianne07]

How much will you need to pay for generic zytiga? I will ask for Nubeqa as I only have cancer in my prostate and my PSA is doubling fast

[Brianne07 in reply to Seasid]

i believe it will be around a $1000 a month but apparently if you take it with a low fat meal you can cut cost down by 75%.

[Seasid in reply to Brianne07]

are the tablets of the generic version of the Zytiga in Australia 250 mg or 500mg?

[Seasid in reply to Brianne07]

what is the rational behind that you are not getting it on PBS?

[Seasid in reply to Brianne07]

i believe that the safest way of taking the Zytiga is in the morning full dose as soon as you awake on empty stomach. That is the way how the drug was tested and FDA approved. Of course if we run out of money, maybe later we can experiment with taking it with milk (low fat meal).

i would not experiment with the dosing at least for the first 6 months.

[GeorgeGlass in reply to Brianne07]

how does low fat help to cut costs?

[Brianne07]

Also had cancer in the lungs.The professor says i have had a very good response to the treatments

[Seasid in reply to Brianne07]

did you receive Keytruda for your lung cancer?

[Seasid in reply to Brianne07]

i believe I know you and you said to me that you have been also diagnosed with sciatica nerve pain like me.

you were sitting with your wife waiting in a Kinghorn Cancer Centre and I was standing and asked you what are you doing here or something like that.

istvan

[Brianne07]

No only been on the firmagon and and then had the chemo

[Seasid in reply to Brianne07]

what did you get for your lung cancer? Keytruda is common for lung cancer.

[Brianne07]

Most probably due for scans to check it all out

[Seasid in reply to Brianne07]

which scans did you have?

[Brianne07]

Yes i think i remember you

[Brianne07]

Yes i do remember now i am sure it was in February i met you

[Seasid in reply to Brianne07]

did I tell you about Health Unlocked social site? Yes you said that you believe that Firmagon is now very common.

yes, if you have a metastasis in your neck just as I also do have or had it just under my skull. That is why wanted to have a PSMA PET scan to check it out.

i also asked you about sciatica nerve pain like me. It is interesting. How many mets did you have in your spine? I have or had 15 . That is very scary.

[Doseydoe]

I went to my MD and explained that when I pressed on my right hip and lower ribs it hurt. Scans revealed I had a broken finger 😂