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Degarelix (Firmagon) after

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User
Posted 04 Sep 2020 at 13:14

Hi 

i have been on Degarelix for over a year now and had the usual side effects such as hot sweats and injection site bruising and pain, which goes away after a few days. Over the last three injections I have developed severe chills that comes on several hours after the injection and lasts for a day. I now that chills are a known side affect but is it normal to experience them so far into the course of treatment?

Roy

User
Posted 04 Sep 2020 at 14:17
As a general rule, HT symptoms can appear almost immediately and disappear very quickly when HT is stopped OR they emerge over a long period of time.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 04 Sep 2020 at 17:13

You could ask about switching to one of the GnRH Agonists - Zoladex, Prostap, or Decapeptyl.

Degarelix is slightly different in being a GnRH Antagonist, the main feature of which is it starts working very quickly when you first start on it. However, having started, you could now switch. It is also sometimes used for people with cardio issues, as it has less significant side-effects in that respect. The others all last longer too, so you wouldn't need monthly injections.

Something you might discuss with your oncologist.

User
Posted 04 Sep 2020 at 18:58

Roy, has anything else changed, like the nurse that does it? Degarelix should always be injected under the skin in the abdomen but they are supposed to vary the site every so often - has it been injected in exactly the same place since you started?

Also, worth reading through the instructions here to see if you think the nurse prepares the vial properly - for example, it must not be shaken (see section 6.6)
https://www.medicines.org.uk/emc/product/6537/smpc#USEHANDLING 

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

User
Posted 03 Jun 2021 at 15:30
Hi Roy,

So sorry to hear your news. I know you have gone through the mill and have tried so much. There are many trials in place for PCa. I just wonder if there is one with a treatment that may be worth considering as possible benefit for you. I would have thought your Consultant should be able to advise on this.

Barry
User
Posted 03 Jun 2021 at 15:36
They might wait until the PSA goes a fair bit higher before they make any changes. Next steps might include stopping the abiraterone and adding bicalutimide, or stopping the degarelix and abiraterone and swapping to stilboestrol, or trying cabazitaxel rather than docetaxel.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 03 Jun 2021 at 15:48
Good luck Roy with any path that is a step forward. Thinking of you
User
Posted 04 Jun 2021 at 04:13

Ask your docs whether PARP inhibitors (olaparib, rucaparib etc) might be right for you. Have you had your tumours or germline DNA sequenced for BRCA1 or BRCA2 mutations? If so then PARP inhibitors may work.

PARP Inhibitors - Effective in Men with BRCA-Mutant Prostate Cancer - CancerConnect

User
Posted 04 Jun 2021 at 12:36

Hi

that was in my plan to have LU177 or Actinium 225 but it is no longer possible. Thanks for the suggestion though.

all the best

Roy

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User
Posted 04 Sep 2020 at 14:17
As a general rule, HT symptoms can appear almost immediately and disappear very quickly when HT is stopped OR they emerge over a long period of time.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 04 Sep 2020 at 17:13

You could ask about switching to one of the GnRH Agonists - Zoladex, Prostap, or Decapeptyl.

Degarelix is slightly different in being a GnRH Antagonist, the main feature of which is it starts working very quickly when you first start on it. However, having started, you could now switch. It is also sometimes used for people with cardio issues, as it has less significant side-effects in that respect. The others all last longer too, so you wouldn't need monthly injections.

Something you might discuss with your oncologist.

User
Posted 04 Sep 2020 at 18:13

Hi Lynn and Andy

Thanks for the replies.

Lynn I thought it was odd that after more than a year this symptom would appear, as up until now apart from the symptoms I described I have tolerated it well and it is still bringing my PSA down, albeit slowly.

Andy they did try to get me on another drug that would last the 3 months you describe due to the Covid situation, but I refused as my opinion is if it's working why change. in the past I have been on Decapetyl and that never Mantained me at castrate level and the side affects weren't pleasant, so didn't want to go there again.

 

All the best

 

Roy

User
Posted 04 Sep 2020 at 18:58

Roy, has anything else changed, like the nurse that does it? Degarelix should always be injected under the skin in the abdomen but they are supposed to vary the site every so often - has it been injected in exactly the same place since you started?

Also, worth reading through the instructions here to see if you think the nurse prepares the vial properly - for example, it must not be shaken (see section 6.6)
https://www.medicines.org.uk/emc/product/6537/smpc#USEHANDLING 

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

User
Posted 04 Sep 2020 at 21:45

Hi Lynn

i was wondering the same thing. It seems I am the only one that wouldn't change to the longer 3 month injection and I sense that my choice hasn't gone down well. I always make sure I alternate injection sites, but this is the first time I have bled and even though they only see a patient every 30 min it does seem rather rushed.

I don't know if these other symptoms are related but I was extremely delirious all night and part of the next day accompanied with a sever bout of diarrhoea which I put down to an undercooked bacon cob which had been kept on a hot plate but was barely warm in the hospital canteen.

all the best

Roy

Edited by member 04 Sep 2020 at 22:49  | Reason: Not specified

User
Posted 12 Mar 2021 at 05:55

Hi Roy,

I've been on degarelix 80mg every 4 weeks for 8 months. About half of the injections have caused the chills & shivers, elevated temperature, typically comes on about 6-7 hours later. I get the jab about 11a.m. and chills about 6pm. This is probably just the body reacting to an invasion. It goes away after a few hours and then I sleep it off. I find a hot bath and hot water bottle helps calm the symptoms.

I haven't found a sure-fire way of avoiding this but I think staying awake and going for a walk a few hours after injection may also help - it keeps the metabolism up. One time I took a nap at 5pm and woke up with the shivers, so don't do that! Try to get the jab in the morning and stay up all day.

CD

 

User
Posted 12 Mar 2021 at 11:26

Hi CD

thanks for the info. I noticed a pattern that seemed to correspond to the chills,  which was bleeding at the injection site, therefore I mentioned it to the nurse and since then, no bleeding and no chills since.

thank you

Roy

User
Posted 15 Mar 2021 at 09:40

Thanks Roy. What angle does your nurse use, if 90 degrees is a right-angle to your skin? Mine is about 60 degrees. I am a slim person (66 kg/145 lb) 30" waist, so I wonder if mine goes too deep sometimes. There's never anything more than a dot of blood when the needle comes out.

CD

Edited by member 15 Mar 2021 at 09:41  | Reason: Not specified

User
Posted 15 Mar 2021 at 13:19

Hi CD

approximately 45 degrees or slightly less.

Roy

User
Posted 03 Jun 2021 at 13:22

Hi

i have just had my latest PSA results and it looks like my current treatment may have stopped working. For the last couple of years I have seen a slow but consistent drop to a nadir of 0.43 but over the last 2 months it has risen to 0.48 last month to 0.75 today so where do I go from here? I am on Degarelix and Aberaterone at the moment. Can anyone suggest the next step apart from Chemo as I am still suffering from neuropathy after the last round a few years ago.

Roy

User
Posted 03 Jun 2021 at 15:30
Hi Roy,

So sorry to hear your news. I know you have gone through the mill and have tried so much. There are many trials in place for PCa. I just wonder if there is one with a treatment that may be worth considering as possible benefit for you. I would have thought your Consultant should be able to advise on this.

Barry
User
Posted 03 Jun 2021 at 15:36
They might wait until the PSA goes a fair bit higher before they make any changes. Next steps might include stopping the abiraterone and adding bicalutimide, or stopping the degarelix and abiraterone and swapping to stilboestrol, or trying cabazitaxel rather than docetaxel.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 03 Jun 2021 at 15:48
Good luck Roy with any path that is a step forward. Thinking of you
User
Posted 04 Jun 2021 at 04:13

Ask your docs whether PARP inhibitors (olaparib, rucaparib etc) might be right for you. Have you had your tumours or germline DNA sequenced for BRCA1 or BRCA2 mutations? If so then PARP inhibitors may work.

PARP Inhibitors - Effective in Men with BRCA-Mutant Prostate Cancer - CancerConnect

User
Posted 04 Jun 2021 at 09:31

Hi 

thanks once again for your support, it is nearly 9 years since I was diagnosed, so I’ve not done bad compared to my first prognosis, but I have always had a plan, but this time I am struggling to see the way forward. I have previously asked my onco for a scan, as I was only too aware that there were some cells resistant  to the treatment I was on, therefore I wanted to pinpoint them and hopefully eliminate them with a targeted treatment but he refused but I will be more forceful this time.

unfortunately I don’t have the BRCA mutation as I paid privately for the test, as the NHS wouldn’t  pay for it, but at least I know I haven’t passed it on to my son, but it rules out that line of treatment path for me.

all the best

Roy

Edited by member 04 Jun 2021 at 09:48  | Reason: Not specified

User
Posted 04 Jun 2021 at 11:36
Leutinium? As you are PSMA + ?
User
Posted 04 Jun 2021 at 12:36

Hi

that was in my plan to have LU177 or Actinium 225 but it is no longer possible. Thanks for the suggestion though.

all the best

Roy

User
Posted 10 Jul 2021 at 07:58

It is available privately at Windsor by a company called Genesis. There have been trials at selective hospitals in the uk but these are no longer accepting entrants.

Roy

User
Posted 05 Sep 2021 at 15:05

I was on zoladex. I had very few side effects, and certainly nothing immediately after the injection. Of course they are completely different drugs, so we can't compare one with the other. I wonder if it could be an allergic reaction. We really need some more posts from anyone who has had degarelix, to say either no immediate side effects, or yes same as you Prof. 

Dave

User
Posted 05 Sep 2021 at 18:52

Hi profzarkov my husband has been on degarelix since may and for the first few days he said his symptoms were the same as yours, all he gets now are hot flushes, he also said the first couple of days after his injection he has a bit of discomfort, hope this helps 

Ann 

 

Edited by member 05 Sep 2021 at 18:58  | Reason: Not specified

User
Posted 06 Sep 2021 at 17:43

He normally has bruising and discomfort for a couple of days after his injection and he has started to get more and more hot flushes, he is also very tired with lack of sleep but he is also going through chemotherapy at the moment which is probably why he is not sleeping 

thank you 

ann

User
Posted 01 Oct 2021 at 17:10
I am on degarelix and I get a red swollen area that is quite painful for a couple of days after injection that then improves. I also get the sweats so I am trying sage tablets which seem to help.
User
Posted 01 Oct 2021 at 22:41
I think that if it is this painful next month, you should talk to the onco or specialist nurse about changing to Zoladex or Prostap. It shouldn't be this painful.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 02 Oct 2021 at 06:12
Hello Prof

Ok my story I had a bad back so went to Docs, after blood tests and DRE he referred me to urology there the specialist nurse confirmed an abnormality on my prostate (another DRE) so booked me in for an MRI at this point everything happens fast.

I had MRI on the 3rd of August the next day late on I received a call from the hospital saying it is bad news we need you in tomorrow as we have seen an anomoly on your spine.

Next day (5th August) I went back to hospital was given radiotherapy to my spine and went back to urology where I was shown scans and it was explained that this was bad so I would start hormone therapy straight away.

Got the 2 injections of degarelix and given a nice folder from Prostate Scotland all about Advanced prostate cancer.

Following week I had Bone scan and biopsy done then telephone conversation with the oncologist, he told me the cancer was aggressive so he was going to start me on Abiraterone and Prednisolone as this worked well alongside Degarelix.

So a month later I am sitting with advanced prostate cancer looking forward to my monthly injections, ha ha, saying that 2 days after my latest injection and it has now eased.

User
Posted 02 Oct 2021 at 12:02
As you know, I am perplexed and disturbed by the diagnostic pathway you have been put through - it has been unnecessarily complex and drawn out - but I find the fact that you are still not under the care of an oncologist shocking!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
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