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Shoulder pain - PCa or ?

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User
Posted 18 Oct 2016 at 10:30

Has anyone suffered from similar symptoms of shoulder pain to me? If so, what was the diagnosis and treatment?

Brief notes about my PCa to date

Diagnosed in July 2013. Gleason 9. Bony mets in the left scapula (1) and pelvis (2).

Treatment: zoladex, bicalutamide for a brief period, and enzalutamide.

Zero bone pain from PCa to date.

PSA now on the rise. New scans ordered and recently completed. Waiting to hear results from Onco.

Previous left shoulder problems

Restricted shoulder movement since late 2010. I have seen a couple of physios between then and now and have religiously performed the stretching exercises they advised. These have kept the problems at bay.

Current situation

For the last few weeks the shoulder has clicked quite a lot and has been getting more painful but not enough to disrupt normal life.

Yesterday, a loud click followed by agonising pain. Off to A&E. X-Rays don't reveal any fractures. Emergency Dept consultant tells me to refer back to Onco. Called her secretary and hoping for contact soon.

The shoulder continues to give me agonising pain and clicks like hell when I make any small movement of my left arm.

But, with the arm at rest pain is zero!

Does this sound like PCa pain?

Grateful for any advice.

David

User
Posted 18 Oct 2016 at 17:51

Peter and David, I wanted to add a note of realism, which may or may not be apposite. As we blokes age our joints give increasing problems. Ever since I broke a collar bone failing to leap over a hockey goalkeeper 20 years ago (note I was playing at 53 - quite mad), I have been plagued with a dodgy left shoulder. I tried steroid injections - did nothing for me. I have limited movement and this can be painful,but the problem predates my diagnosis with PCa, so it is unrelated. The point remains that we older folk get such problems. I met a lady walking her dog this morning with a similar problem, also trying the steroid injection treatment. She and I find that a pulling dog does our shoulders no good at all. You may find your pains are just age-related and nothing to do with your PCa. I hope so and I also hope that you get effective treatment. I just live with it and rely on the strength of the good shoulder!

Best wishes

AC in Northants.

User
Posted 20 Oct 2016 at 23:24

I'm sorry to hear this David and hope the radiotherapy has the desired effect. It certainly got rid of the pain for my David when he he had it on his hip. And the positive news is that you have more options in the bag with chemo and radium 223, so hang on in there

Best wishes

Rosy

User
Posted 21 Oct 2016 at 00:08

Oh Col, I was worried that this was mets and I wouldn't have wanted to gloss over it or tell you it was nothing if it wasn't. The RT shot will surely help, and fingers crossed that whether it is Radium or chemo you have the kind of response that some others are seeing.

Thank goodness you went to A&E before you got a serious fracture!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 21 Oct 2016 at 10:44

The good news is the shoulder pain has subsided dramatically (good old Naproxen). I won't be lifting any weights in the near future (ha ha) but my right shoulder is OK and as you see from my pic that's the important one because it transfers real ale from glass to mouth.

What I didn't say in post 1 is that I got the A&E consultant to look up my recent nuclear medicine bone scan and that showed my left shoulder had quite a glow to it. As soon as he had deduced from the X-ray that there were no fractures in the shoulder he said I needed to talk with my Onco. He unnerved me a bit by asking if I wanted any additional pain medication because if so he could prescribe it, perhaps I'd like some Oramorph? Yikes I thought, he thinks things are bad. I politely declined and said if anti-inflams and paracetamol didn't do the job I'd talk to my GP.

What surprises me about what has happened is that I was in agony one second but place my arm close to my side, don't move it, and no pain! WTF! I thought PCa bone pain would be something that was constant. However, I'm not complaining, I'd much rather it wasn't.

There's always a bright side (black humor alert). It looks like my time on Enzo is over. It has served me well but it has also raised my BP such that I have to take Amlodipine so hopefully the BP will return to what it was pre-Enzo and it will be one less tablet to swallow. Prior to Enzo I could poop for England. Enzo brought on constipation. Hopefully that will return to normal as well. If you see a profits warning from Boehringer Ingelheim, the makers of Dulcolax, then you will know all is well in that department.

As Lyn and Rosy have said there's Radium 223 and Chemo plus I intend to ask about Stilboestrol, Hsp90 inhibitors, Abiraterone (could be expensive that one, it would take a lot of beer tokens!), Metformin, Immunotherapy, Olaparib, VT464 and any other trials, so this old dog may wag his tail for a while yet.

 

Edited by member 22 Oct 2016 at 15:29  | Reason: Not specified

User
Posted 27 Oct 2016 at 23:03
Hi David

So sorry to hear you news

When I was first diagnosed the cancer had done so much damage to my hip the first thing that was recommended was a hip transplant but I had 5 shots of RT and four years on I have had no problems at all

Now beer and chemo from someone that loves beer and works in the industry day one after chemo was fine then days 2 too 6 no chance my taste buds had gone and everything tasted of rubber

I tried the pineapple all the way through chemo because I quite liked it but for me it didn't work I lived on ice cream for 5 days

Hope it goes well for you

Si

Don't deny the diagnosis; try to defy the verdict
User
Posted 28 Oct 2016 at 01:13

I imagine it needs to be fresh, which would be much easier to freeze anyway. I think the main benefit of the pineapple (plain ice cubes will do nearly as good a job) is to reduce the risk of horrible mouth ulcers although it is supposed to minimise the metallic taste as well. I don't think Stan sucked them ALL the way through the infusion, he just took a few pieces with him in a tupperware box. Interestingly, Cancer research's website suggests ice lollies or fresh pineapple but doesn't say you need to freeze the pineapple http://www.cancerresearchuk.org/about-cancer/coping-with-cancer/coping-physically/mouth/mouth-care .

Stan never really went off his beer - the only thing that stopped him going to the pub during chemo was his wife (she was terrified he would pick up bugs or germs)

Si, did you have any mouth ulcers?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 28 Oct 2016 at 09:59

Originally Posted by: Online Community Member

Now beer and chemo from someone that loves beer and works in the industry day one after chemo was fine then days 2 too 6 no chance my taste buds had gone and everything tasted of rubber

Si,

Thanks. Does that mean the beer tasted good again from day 7 to 21? If so, woooo hoooo, I can live with that. I'm not an alkie http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif, I just so love a few pints of real ale at a weekend.

User
Posted 28 Oct 2016 at 12:20

Sorry to hear about the cancer spread... good luck with the treatment. My OH is in the middle of 6 sessions of Docetaxel at 3-week intervals. So far so good re beer which is great since visits to the local help to keep things feeling normal. My brother also kept his fondness for beer throughout his 12 sessions of chemo. We're trying the pineapple sucking option - the doctor agreed that it might help in the same way as a cold cap; if the mouth is kept cold then less blood circulates to it and therefore less chemo. We are using fresh pineapple but I think either is fine - it's better than ice-cubes since its more pleasant to suck on I guess. I freeze around 12-16 largish chunks each time and so far he's had no problems with mouth ulcers other than a slight soreness for a few days after the session.

Cheers

E

User
Posted 28 Oct 2016 at 16:03

Actually that's a very important point - check with the doctor first. I am sure people with high blood pressure or liver/kidney disease are not supposed to eat pineapple so there may be other medical factors to take into account. Strawberry mivvis or a magnum may do just as good a job!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 01 Nov 2016 at 17:28

If you have high blood pressure and take felodipine you should not drink or eat grapefruit products as it accelerates the absorption and may cause low blood pressure. Google being what it is has many contradictions on whether pineapple is good or bad, if like me you have CKD3.

 

Thanks Chris

Show Most Thanked Posts
User
Posted 18 Oct 2016 at 15:49

Hi David,

I seem to be in a very similar position to you. I was diagnosed with PCa in July 2015, with a Gleason of 9 and mets in spine, lympth nodes and lungs. I have been on Degarelix since diagnosis and my PSA came down from 168 to 1.7. But it has now started to rise again and last week was 11.2.

My onco is trying to organise urgent scans (CT and bone) and has given me an appointment to see him again for the 4th November, the earliest he felt he could reasonably expect to get the scan results. He is suggesting that assuming tumour growth is confirmed by the scans, I commence either chemotherapy, abiraterone or partaking in the SOTIO immunology trial. I have to discuss which way I want to proceed with him on the 4th.

But I have to say that I have also been getting a lot of shoulder pain lately, over the last two weeks or so. I had assumed that I had strained myself doing some work out in the garden, but now you make me wonder. It feels ok at the moment, but the pain does come and go. I also feel a clicking sensation in my neck, which I have never had until recently.

So apart from letting you know you are not alone with your shoulder pain, I can't actually help you. But I will watch this thread with interest.

Best wishes

 

Peter

User
Posted 18 Oct 2016 at 16:42

Peter,

Thanks. I'll update when I know more.

I had a look at your profile and some of your posts and read about your problems with Degarelix. Is it worth asking your Onco if you can switch to 12 weekly zoladex? I've had it for the last 38 months and it's been a breeze. None of the problems you've had apart from mild flushes.

Re chemo, abi or immuno, Click on my profile and see how long enzo (enzalutamide) worked for me. Enzo and abi are similar but work in different ways and you can only have one or the other. So you could have a good long time yet before you have to make the choice about chemo. However, whichever of these you opt for the Onco will still recommend you continue with primary HT. I've been told I'll continue to have zoladex until it's daisy pushing time.

David

User
Posted 18 Oct 2016 at 17:51

Peter and David, I wanted to add a note of realism, which may or may not be apposite. As we blokes age our joints give increasing problems. Ever since I broke a collar bone failing to leap over a hockey goalkeeper 20 years ago (note I was playing at 53 - quite mad), I have been plagued with a dodgy left shoulder. I tried steroid injections - did nothing for me. I have limited movement and this can be painful,but the problem predates my diagnosis with PCa, so it is unrelated. The point remains that we older folk get such problems. I met a lady walking her dog this morning with a similar problem, also trying the steroid injection treatment. She and I find that a pulling dog does our shoulders no good at all. You may find your pains are just age-related and nothing to do with your PCa. I hope so and I also hope that you get effective treatment. I just live with it and rely on the strength of the good shoulder!

Best wishes

AC in Northants.

User
Posted 18 Oct 2016 at 22:51

Thanks AC! I am impressed with your athletic prowess!

I completely take your point about creeping old age. I have asked my onco a few times about this kind of thing. How do I know if a particular ache, pain or ailment is due to:-

A) The cancer

B) The treatment for the cancer

C) some other totally unconnected ailment. Or,

D) simply due to old age.

It does sound like David's and my complaint about shoulder pain may be just caused by old age. But it is always worth asking the question. Thanks for your response, which I am sure will have answered David's initial question too.

 

David,

My Onco did say on Friday that he thought Abi was more appropriate for me than Enzo, but I am not sure why. He also told me back in July 15 that Degarelix was the "Gold Standard" and was the best course for me. We did tinker with Bicalutamide for a little while, but I found the side effects of those to be even worse. Maybe it is just my low pain threshold!

Degarelix has certainly worked well for me in terms of results, bringing my PSA down from 168 to 1.7 at its lowest, so it has been worth the associated grief. But now it seems to be time for a review.

Good luck with your scan results.

 

Peter

User
Posted 20 Oct 2016 at 19:31

Phone call from the Onco this afternoon. The scans show progression in the left shoulder and the spine. She wasn't surprised when I explained the problems I've had this week. She believes the mets in the shoulder are responsible. I am to receive radiotherapy to the shoulder and she will have a consultation with me, probably next week, on the same day as I'm measured up for the radiotherapy. She sees the next treatment step as being Radium 223 or Chemo. I'll be talking over some other possible options but I trust her completely and will follow her advice.

In a perverse way I'm almost relieved if it is PCa that is to blame for the shoulder problem. I know the time I have left is limited. If the shoulder problem were, say, a tear in the rotator cuff then treatment could be long and painful and reduce my quality of life for the time that remains. Radiotherapy to the shoulder should, I hope, improve quality of life.

User
Posted 20 Oct 2016 at 23:24

I'm sorry to hear this David and hope the radiotherapy has the desired effect. It certainly got rid of the pain for my David when he he had it on his hip. And the positive news is that you have more options in the bag with chemo and radium 223, so hang on in there

Best wishes

Rosy

User
Posted 21 Oct 2016 at 00:08

Oh Col, I was worried that this was mets and I wouldn't have wanted to gloss over it or tell you it was nothing if it wasn't. The RT shot will surely help, and fingers crossed that whether it is Radium or chemo you have the kind of response that some others are seeing.

Thank goodness you went to A&E before you got a serious fracture!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 21 Oct 2016 at 10:44

The good news is the shoulder pain has subsided dramatically (good old Naproxen). I won't be lifting any weights in the near future (ha ha) but my right shoulder is OK and as you see from my pic that's the important one because it transfers real ale from glass to mouth.

What I didn't say in post 1 is that I got the A&E consultant to look up my recent nuclear medicine bone scan and that showed my left shoulder had quite a glow to it. As soon as he had deduced from the X-ray that there were no fractures in the shoulder he said I needed to talk with my Onco. He unnerved me a bit by asking if I wanted any additional pain medication because if so he could prescribe it, perhaps I'd like some Oramorph? Yikes I thought, he thinks things are bad. I politely declined and said if anti-inflams and paracetamol didn't do the job I'd talk to my GP.

What surprises me about what has happened is that I was in agony one second but place my arm close to my side, don't move it, and no pain! WTF! I thought PCa bone pain would be something that was constant. However, I'm not complaining, I'd much rather it wasn't.

There's always a bright side (black humor alert). It looks like my time on Enzo is over. It has served me well but it has also raised my BP such that I have to take Amlodipine so hopefully the BP will return to what it was pre-Enzo and it will be one less tablet to swallow. Prior to Enzo I could poop for England. Enzo brought on constipation. Hopefully that will return to normal as well. If you see a profits warning from Boehringer Ingelheim, the makers of Dulcolax, then you will know all is well in that department.

As Lyn and Rosy have said there's Radium 223 and Chemo plus I intend to ask about Stilboestrol, Hsp90 inhibitors, Abiraterone (could be expensive that one, it would take a lot of beer tokens!), Metformin, Immunotherapy, Olaparib, VT464 and any other trials, so this old dog may wag his tail for a while yet.

 

Edited by member 22 Oct 2016 at 15:29  | Reason: Not specified

User
Posted 26 Oct 2016 at 14:52

Another loud crack and agonising pain in the left shoulder this morning and I'm back to where I was last Monday week. My lovely Onco is seeing me at noon tomorrow. Here's hoping she and her RT chums can magic this away for me because at the moment quality of life is not good (Mrs_ColU has to help me dress and undress, help me dry myself after a shower, I can't play croquet and I can't do my share of the household chores - there's always an upside but don't tell Mrs_C I said that).

User
Posted 26 Oct 2016 at 15:37

Oh Lord! Do you think you should get it x-rayed before tomorrow in case it has broken? If not, do be very careful for the next 21 hours

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 26 Oct 2016 at 17:07

Thanks Lyn. I'll risk it. There's still little or no pain when the arm is at rest. I've taken a Naproxen (I'd stopped taking them with effect from yesterday since things had improved). I've got ice on it. I fear if I turn up at A&E every time it clicks or cracks then they will get very fed up with me. The A&E consultant did say when he saw me last Monday week that if the X-Ray showed a fracture then there wasn't much they could do about it anyway (a bit like a fractured rib I presume).

User
Posted 27 Oct 2016 at 22:49

It is confirmed that the shoulder problem is due to PCa spread. The PCa has done significant damage. So it's one RT session on Friday week (my Onco prefers to give it the full monty in one go) and hope like hell it works and I can once again use my left shoulder for work, rest and play.

My time on Enzo has finished. After a very full discussion of all possible options it's going to be Docetaxel chemo starting in mid-November.

Over the next few days I'm going to research all the Docetaxel side effects and mitigating actions and when I've done that I will create a new post and ask you, my friends, for any additions or amendments you can think of. I'll ask one question now. I want to do my damnest to continue to enjoy food and beer whilst on chemo. Frozen pineapple - does it matter whether it is fresh or tinned and do you have to suck a cube for the whole of the time you are having an infusion? If so, any idea how many cubes I should prepare?

Thanks.

David

User
Posted 27 Oct 2016 at 23:03
Hi David

So sorry to hear you news

When I was first diagnosed the cancer had done so much damage to my hip the first thing that was recommended was a hip transplant but I had 5 shots of RT and four years on I have had no problems at all

Now beer and chemo from someone that loves beer and works in the industry day one after chemo was fine then days 2 too 6 no chance my taste buds had gone and everything tasted of rubber

I tried the pineapple all the way through chemo because I quite liked it but for me it didn't work I lived on ice cream for 5 days

Hope it goes well for you

Si

Don't deny the diagnosis; try to defy the verdict
User
Posted 28 Oct 2016 at 01:13

I imagine it needs to be fresh, which would be much easier to freeze anyway. I think the main benefit of the pineapple (plain ice cubes will do nearly as good a job) is to reduce the risk of horrible mouth ulcers although it is supposed to minimise the metallic taste as well. I don't think Stan sucked them ALL the way through the infusion, he just took a few pieces with him in a tupperware box. Interestingly, Cancer research's website suggests ice lollies or fresh pineapple but doesn't say you need to freeze the pineapple http://www.cancerresearchuk.org/about-cancer/coping-with-cancer/coping-physically/mouth/mouth-care .

Stan never really went off his beer - the only thing that stopped him going to the pub during chemo was his wife (she was terrified he would pick up bugs or germs)

Si, did you have any mouth ulcers?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 28 Oct 2016 at 09:59

Originally Posted by: Online Community Member

Now beer and chemo from someone that loves beer and works in the industry day one after chemo was fine then days 2 too 6 no chance my taste buds had gone and everything tasted of rubber

Si,

Thanks. Does that mean the beer tasted good again from day 7 to 21? If so, woooo hoooo, I can live with that. I'm not an alkie http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif, I just so love a few pints of real ale at a weekend.

User
Posted 28 Oct 2016 at 12:20

Sorry to hear about the cancer spread... good luck with the treatment. My OH is in the middle of 6 sessions of Docetaxel at 3-week intervals. So far so good re beer which is great since visits to the local help to keep things feeling normal. My brother also kept his fondness for beer throughout his 12 sessions of chemo. We're trying the pineapple sucking option - the doctor agreed that it might help in the same way as a cold cap; if the mouth is kept cold then less blood circulates to it and therefore less chemo. We are using fresh pineapple but I think either is fine - it's better than ice-cubes since its more pleasant to suck on I guess. I freeze around 12-16 largish chunks each time and so far he's had no problems with mouth ulcers other than a slight soreness for a few days after the session.

Cheers

E

User
Posted 28 Oct 2016 at 16:03

Actually that's a very important point - check with the doctor first. I am sure people with high blood pressure or liver/kidney disease are not supposed to eat pineapple so there may be other medical factors to take into account. Strawberry mivvis or a magnum may do just as good a job!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 01 Nov 2016 at 17:07

Lyn - A quick look at Dr Google seems to indicate pineapple is good for high blood pressure but not good for chronic liver/kidney disease.

User
Posted 01 Nov 2016 at 17:28

If you have high blood pressure and take felodipine you should not drink or eat grapefruit products as it accelerates the absorption and may cause low blood pressure. Google being what it is has many contradictions on whether pineapple is good or bad, if like me you have CKD3.

 

Thanks Chris

 
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