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Twinges

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User
Posted 05 Sep 2018 at 21:45

Hi, just wondering if anyone on HT (decapeptyl in dad's case) ever has any twinges of pain? Dad has had the odd twinge of back pain, not very often and not debilitating but it has me worried that although his psa is still decreasing, the cancer hasn't been stopped in its tracks as well as it should be. 

Miffy
User
Posted 05 Sep 2018 at 22:58
It is a known side effect of HT. As the testosterone stops, the body feminises so, similar to a teenage girl, there are aches and pains as the ligaments soften, muscles lose tone and in some cases, the pelvis widens a little.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 05 Sep 2018 at 23:09

Hi Miffy,

I started out on Degarelix and I got a lot of pain with that. I had quite a severe reaction in general, but I could not convince my onco to change it.

After the Degarelix stopped working, I had started chemo (Docetaxel) and I found the two medications together amplified the side effects and so I insisted that I stop the Degarelix. The onco then changed my HT to Decapeptyl (that was in November 17) and I have been on that since. I have had no side effects at all with Decapeptyl.

So a bit of a long winded reply to say that I have not had the pain that your dad has had.

I was just going to add that I believe that HT does in itself cause some pain, but I notice that while I have been writing this (interrupted by a phone call from my son) Lyn has responded with exactly that answer.

Best wishes,

Peter

User
Posted 06 Sep 2018 at 10:59
Sorry - My reply was to the pain issue not the rise in PSA,

The rise in PSA will be looked into but probably not until the next due blood test. This is because they need to see a beginning of a trend. If it’s back down next time there isn’t one; if it has risen again there could be. Not very helpful I know.

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User
Posted 05 Sep 2018 at 22:58
It is a known side effect of HT. As the testosterone stops, the body feminises so, similar to a teenage girl, there are aches and pains as the ligaments soften, muscles lose tone and in some cases, the pelvis widens a little.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 05 Sep 2018 at 23:09

Hi Miffy,

I started out on Degarelix and I got a lot of pain with that. I had quite a severe reaction in general, but I could not convince my onco to change it.

After the Degarelix stopped working, I had started chemo (Docetaxel) and I found the two medications together amplified the side effects and so I insisted that I stop the Degarelix. The onco then changed my HT to Decapeptyl (that was in November 17) and I have been on that since. I have had no side effects at all with Decapeptyl.

So a bit of a long winded reply to say that I have not had the pain that your dad has had.

I was just going to add that I believe that HT does in itself cause some pain, but I notice that while I have been writing this (interrupted by a phone call from my son) Lyn has responded with exactly that answer.

Best wishes,

Peter

User
Posted 05 Sep 2018 at 23:46
Me too. Although fit and active I regularly ache everwhere
User
Posted 06 Sep 2018 at 08:25

It's very reassuring to read your comments so thank you. Dad happened to mention in passing to the doctor about these twinges and the doctor prescribed morphine tablets when required, that sounded a bit drastic to me and I panicked all the more. I wasn't aware of the HT side effect so I will read up on that. 

Miffy
User
Posted 06 Sep 2018 at 09:30
Just a bit more to add to last night’s short response.

I have discussed my aches with both my GP and oncologist and although the areas where I have bone metastasis are among those affected they are both of the opinion it’s age and HT related and not the cancer so that is probably what is happening to your dad.

This is only my opinion backed up with a little knowledge - I would have though that if his cancer was growing then his PSA would now be rising. Don’t take chances though, if at all concerned don’t wait until the next clinic to seek advice. I know we are in different parts of the country but I can contact my specialist nurse or oncologist at any time.

Dave

User
Posted 06 Sep 2018 at 10:06

well he went to the surgery yesterday to get his bloods done and his next injection so he will hopefully hear today what his next psa is which is good. The aches he had were a few weeks ago and he feels ok now it's just that I'm only finding out about it as they didn't want to worry me unnecessarily but that backfired! I assume if it was pc related the pains wouldn't let up? 

Miffy
User
Posted 06 Sep 2018 at 10:49

psa up from 11 to 19   they told him it can go up and down but surely this should be looked into? 

Miffy
User
Posted 06 Sep 2018 at 10:54
I’m pretty sure that would be the case although I’m fortunate enough not to have experienced PC related pain - I think if it’s that it’s quite obvious.

We all agreed early on that I would be totally open and honest about how I was feeling physically and emotionally. It’s worked very well for all of us.

Dave

User
Posted 06 Sep 2018 at 10:59
Sorry - My reply was to the pain issue not the rise in PSA,

The rise in PSA will be looked into but probably not until the next due blood test. This is because they need to see a beginning of a trend. If it’s back down next time there isn’t one; if it has risen again there could be. Not very helpful I know.

User
Posted 06 Sep 2018 at 11:30

Originally Posted by: Online Community Member
Sorry - My reply was to the pain issue not the rise in PSA,

The rise in PSA will be looked into but probably not until the next due blood test. This is because they need to see a beginning of a trend. If it’s back down next time there isn’t one; if it has risen again there could be. Not very helpful I know.

 

Another 3 months until the blood test seems like a long time to wait. Do you think there would be much point in requesting one sooner than that? Bit shocked it has went up as wasn't overly low anyway so any rise is worrying. 

Miffy
User
Posted 06 Sep 2018 at 12:25
You are obviously and naturally worried. Have you tried speaking to the Specialist Nurses on this website. I have contacted them a couple of times and had my concerns fully answered and explained. You won’t get a generic answer to your queries - it will be directly concerning your dad’s situation as long as you give them as much info as you can regarding his condition.

https://prostatecanceruk.org/get-support?_ga=2.58064490.1310206249.1536226693-342747836.1513086131

Dave

User
Posted 14 Sep 2018 at 15:38

just a little update on daddy, his oncologist got word of his psa and has put him on bicalutamide. Hes not due to see her again until November so he just has to take it and see what happens. Has anyone else had this before? Will it be something he will be on continually or intermittently? Hoping this lowers psa again, lots of people have much lower results being below 1 but daddy's hasn't gotten any lower than 11.

Miffy
User
Posted 15 Sep 2018 at 11:16
The action of bicalutamide stops the production of testosterone as does the Decapeptyl that your dad is already on. He would have been prescribed bicalutamide to take temporarily just before starting Decapeptyl to prevent tumour flare. Perhaps dad’s oncologist thinks a rise in testosterone might be the reason for the rise in PSA.

Did you try getting advice from the specialist nurses - either here or your dad’s hospital? These forums are brilliant but most of us can only offer advice from personal experience and if you read enough profiles you will find that none of us have the same symptoms; even with similar symptoms our bodies don’t necessarily react the same way to the same treatment as the next person!

Take care and make sure you look after you as well as worrying about your dad. I have three children all a similar age to you (children?? 😀). It is great knowing how much they love and care for me but I would hate to think they spent all their time scared and worried about me.

Dave

User
Posted 23 Sep 2018 at 20:18

Does a rise in testosterone therefore mean the initial HT is no longer working?

They are calling the oncologists reception tomorrow to see if we can get some advice or a sooner appointment. All worried again now and back to feeling that horrible fear. I don't let dad see me so worried as I know he has enough on his mind without worrying about us! 

Praying his next psa is lower again. Have suggested he gets in touch with Macmillan as can see lately he isn't himself with the worry of it all. 

Miffy
User
Posted 23 Sep 2018 at 22:34
I really don’t know the answer to to that. I’m afraid that was not too helpful speculation on my part. I’ll try not to do that again.

Sorry

Dave

User
Posted 23 Sep 2018 at 23:17

I appreciate all replies, all helpful. I have a million and one questions that probably nobody can answer but does no harm to ask anyway! 

Miffy
 
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