Back on to Degarelix

User

Posted 24 Jul 2016 at 16:43

After taking Bicalutamide for three weeks, I had my routine appointment with my oncologist. He suggested that I continue to take the Bicalutamide until my next appointment in October.

I declined to do this. The side effects I have been getting over the last three weeks have been far worse than they were with the Degarelix. I had thought the Degarelix was bad, but it was a piece of cake compared to the side effects of Biculatimide.

So I told him I wouldn't be continuing with them. His response was that the only alternative was to stop treatment altogether and let the cancer take its course. He estimated that in that scenario, I had about 9 months left to live. (That was much longer than I expected)

I told him that I was willing to give Degarelix another try, but at 5 weekly intervals rather than the 4 weekly I had been on previously. My thoughts were that at least I would get one week "off" in every five, in which I could actually do a few things. He said he couldn't recommend that course of action, but if it was what I wanted, he would arrange it.

So that is where I am at at the moment. I felt quite happy after having this discussion with him, because at least I feel in control now. But I know he doesn't understand what I am thinking. I believe that I still have some "active" life left in me, but I am being robbed of that by the side effects of HT. If my recent symptoms were the direct cause of the cancer, I could accept that. But I don't believe that it is the cancer causing them. I am sure it is the treatment. It seems that the treatment is worse than the illness!

But I also feel a bit concerned that he has said the only alternative to Bicalutimide (or Degarelix) is to stop treatment. I thought there were lots of options still available once HT had stopped working.

After leaving his office in such a happy mood, I have since been mulling everything over in my mind and come up with these concerns. If anyone has a view, I would love to hear it.

Regards,

Peter

User

Posted 24 Jul 2016 at 20:41

Most alternative treatments are for men who are hormone refractory - ie the cancer has learned to live without testosterone. You are probably not in the mix for those as you have stopped taking hormones due to side effects and quality of life rather than because HT has stopped working. The other thing in the onco's mind may be that if you are not okay with the side effects of casodex then you are unlikely to be prepared to tolerate 10 sessions of chemo. But it is important that you ask the onco rather than us - a call to the nurse specialist perhaps?

Edited by member 24 Jul 2016 at 20:42 | Reason: Not specified

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

User

Posted 24 Jul 2016 at 21:13

Hi Peter

I do take your point with regards side effects. It helped me cope with HT by taking the right or wrong view side effects of treatment are a direct cause of cancer because without cancer I wouldn't have the side effects.

I'm not so sure your body will recover enough to relieve symptoms with just a weeks break as HT will still be in your system within that week.

As Lyn pointed out HT didn't fail. That could well be the block. Have you looked at such as Cancer Research Trials to obtain a clearer picture of trial criteria.

Good luck

Ray

Edited by member 24 Jul 2016 at 21:15 | Reason: Not specified

User

Posted 24 Jul 2016 at 21:24

I'm surprised to hear that this was the response from the Onco. John did very badly on Bicalutimide and could never have it again, so was put on stillbestrol and has been on that for nearly three years and has been mostly fine. What about a abiraterone? This seems like a failure of communication to me Peter. Talk to your specialist nurse, you need to be able to stop the cancer without destroying your life, it can be done (for a while at least, for most people).

Devonmaid

Edited by member 27 Jul 2016 at 22:44 | Reason: Not specified

User

Posted 25 Jul 2016 at 01:41

Some men are more severely affected by different forms of HT. Zoladex is another where some are badly affected whereas others like me were only moderately affected. Suggest ask onco if alternative HT could be prescribed.

Barry

User

Posted 26 Jul 2016 at 22:11

Wow! Well thanks to each of you for your replies. I have been so gobsmacked by the understanding each of you have for my position, I just haven't been able to formulate a response until now. I am left wondering why I can't get my oncologist to understand.

I take your point Lyn about not having "failed" the HT route, but I really don't think it is fair to be counted out of the more advanced treatments because of it. I am not opposed to chemo if it would be beneficial for me. I am not opposed to carrying on with Degarelix in principle. It is just that I believe I have a bit of "normal" life to live before I am subjected to the worsening side effects of HT. The normal life span might only be a month, or it might be a year, but whatever it is, I can make really good use of it.

My idea of extending the spacing between injections is a kind of compromise. I have had a couple of incidences where I have had my injection a few days later than when they were due. During those few days, on each occasion, I felt really energised and so much better. My oncologist has claimed in the past that missing an injection wouldn't make me feel any better, because the effects would still be in my system. But I feel I have disproved that by those two incidences. But maybe that is only the way I react and may not be general.

I may be oversimplifying it, but I can't help thinking that after a year of HT treatment, during which my PSA has dropped dramatically from 168 to 1.7 and all other values are good too, I can afford to push it a little. So if my PSA and other levels rise, then they will quickly come down again when I restart the HT. I know there are no guarantees that this will happen, but the odds must be in my favour?

Andrew, you are not being morbid at all. I can identify with everything you say! If we can't treat dying in a light hearted way then we are completely lost.

Devonmaid, you have summed it up perfectly for me. Communication has completely broken down, in fact I don't think it was ever there in the first place.

Once again, thanks to all of you. I was beginning to think I was losing my ability to communicate.

Best wishes

Peter

User

Posted 26 Jul 2016 at 23:47

Originally Posted by: Online Community Member

I take your point Lyn about not having "failed" the HT route, but I really don't think it is fair to be counted out of the more advanced treatments because of it.

I think you have misunderstood ... it isn't about not being allowed the more advanced treatments! In some cases it is that they are most effective on cancer cells that have become hormone resistant. Also worth remembering that some people who need these additional treatments because all else has failed still have to go cap in hand to the drugs fund to get approval so it is unlikely that you would get funding.

The research suggests that missing a week or not having the injection exactly at the right interval speeds up the time when the cancer becomes hormone refractory. So generally not a good idea unless it is being carefully monitored by the medics.

Stilboestrol might be a good option for you - do you have a nurse specialist you could ask instead of the onco?

Edited by member 26 Jul 2016 at 23:52 | Reason: Not specified

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

User

Posted 27 Jul 2016 at 10:52

Peter

This may confuse, enlighten or at least show you’re not alone in how you feel with regards HT.

Circa 1 week before too 1 week after HT implant my mood was distinctly better as was less fatigue. Logically I thought it very doubtful the amount of HT in my system fluctuated enough to make a difference. Yet I knew how I felt so was it emotions as in the last week my mind saying yippee another 12 weeks completed then the week after reality hitting home here we go again another 12 weeks. The jury is still out on that.

Ray

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User

Posted 24 Jul 2016 at 20:41

Edited by member 24 Jul 2016 at 20:42 | Reason: Not specified

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

User

Posted 24 Jul 2016 at 21:13

Hi Peter

I'm not so sure your body will recover enough to relieve symptoms with just a weeks break as HT will still be in your system within that week.

As Lyn pointed out HT didn't fail. That could well be the block. Have you looked at such as Cancer Research Trials to obtain a clearer picture of trial criteria.

Good luck

Ray

Edited by member 24 Jul 2016 at 21:15 | Reason: Not specified

User

Posted 24 Jul 2016 at 21:24

Devonmaid

Edited by member 27 Jul 2016 at 22:44 | Reason: Not specified

User

Posted 25 Jul 2016 at 01:41

Barry

User

Posted 26 Jul 2016 at 22:11

Andrew, you are not being morbid at all. I can identify with everything you say! If we can't treat dying in a light hearted way then we are completely lost.

Devonmaid, you have summed it up perfectly for me. Communication has completely broken down, in fact I don't think it was ever there in the first place.

Once again, thanks to all of you. I was beginning to think I was losing my ability to communicate.

Best wishes

Peter

User

Posted 26 Jul 2016 at 23:47

Originally Posted by: Online Community Member

I take your point Lyn about not having "failed" the HT route, but I really don't think it is fair to be counted out of the more advanced treatments because of it.

Stilboestrol might be a good option for you - do you have a nurse specialist you could ask instead of the onco?

Edited by member 26 Jul 2016 at 23:52 | Reason: Not specified

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

User

Posted 27 Jul 2016 at 10:52

Peter

This may confuse, enlighten or at least show you’re not alone in how you feel with regards HT.

Ray

User

Posted 27 Jul 2016 at 20:38

Dear Lyn,

Thank you for your response. No, I didn't misunderstand, it was just my poor choice of words and maybe that is the root cause of my problems at the moment. I am certainly having difficulty communicating with my oncologist! When I said "advanced treatments" I purely meant the chronologically later treatments. I was originally promised that I would ultimately move on to Aberitone once Degarelix stops working, which was one reason why I was concerned when he said the only alternative is to do nothing.

I am finding it all quite confusing at the moment. You have been so very helpful to me on a number of occasions already and I am so immensely grateful for that. But I am left wondering why my oncologist is not telling me these things. I am astounded by what you say about decreased frequency resulting in, or hastening refractory. I had no idea that this could happen. I am also guessing that when it comes to moving on to Aberitone or whatever treatment would follow HT, I may well be refused because I have not followed the dosage criteria precisely?

As I think I have said in a previous post, I do not have any issues with having any of the appropriate treatments, including chemotherapy, if I can see the need for it. It is true that I have some horrendous side effects with Degarelix, but I have never asked him to stop it. Before my last injection was due, my GP suggested that I should talk to my oncologist first, because of the seriousness of the side effects. In particular, I have been getting serious heart palpitations recently and my GP felt this may be significant. (I do have a history of heart disease as well!).

I am biting the bullet and going for the injection tomorrow morning. But I will try to contact my specialist nurse to talk about it further. Thanks once again for your help Lyn.

Ray,

Thanks for that. I think you may have a point about the psychological impact of starting the treatment off again. I am sure it must be worse for you being on a 12 week cycle. I am on 4 weekly injections, so it almost seems like a continuous process.

Best regards,

Peter

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