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Keytruda Experience

User
Posted 19 Feb 2019 at 16:31

I have completed a first cycle of Keytruda immunotherapy and thought it would be useful to post my experience for others who may follow in my footsteps.

The infusion is mixed freshly each time it is required. You hope it is ready on time.  Mine wasn't and to make things worse, the first solution contained bits so had to be dumped (at what cost to the Cancer Drugs Fund?) and a fresh batch made.  Ordinarily, one has a 100 ml flush followed by a 200 ml dose in a 200 ml solution, followed by a short second flush, I guess to ensure that none of the stuff is left in the tube.  There is a no anti-nausea supplement in the infusion, nor are pills supplied for this.  So the timing should be 10 mins plus 30 mins plus three minutes, much shorter than most chemo sessions.

I had a thorough briefing by an Oncology nurse a few days before the first infusion and a benchmark blood test was required.  I was given a card to have with me at all times and a very professional booklet about the drug, detailing all the awful potential side effects of the stuff.  The blood tests cover hormone levels as well as the usual chemo markers.

The first cycle proved to be an anti-climax. I had absolutely no side effects.  I am my usual fit and well self....

I am being treated primarily for bladder cancer (BC) mets in my liver but it is expected to be beneficial for my PCa.  Whether it works for the BC, we shall learn following a CT scan after the third infusion.  I thought that how it affected my PSA might give a clue to that, however.  If there is a link, I don't like it so far!  My PSA six weeks ago was 3.5 but it nearly doubled to 6.7 a couple of days ago.  My regular consultant was away but the young Registrar who deputised for him, pooh poohed this, relating to the PSA surge that sometimes comes with first infusions of chemo.  He also said that the CT scan results would certainly require an expert report as inflammation caused by the treatment must be distinguished from tumour growth.  So, I may assume that the PSA could be up from this inflammatory effect.

Anyway, I take the second infusion tomorrow and hope for the same easy passage, but perhaps a better PSA response!

My next update in three weeks, for that is the cycle length.

 

AC

 

Edited by member 20 Feb 2019 at 17:43  | Reason: Factual error!

User
Posted 11 Mar 2019 at 17:23
I have completed my second cycle but the side effects have been unwelcome! First, though, is the treatment effective for PCa? Based on my PSA rising rapidly from 3.5 before treatment to 6.5 after the first cycle and now 10.0, I have to doubt it! The scan due at the end of March may reveal why the PSA is rising so fast, near trebling in six weeks, but it seems unlikely to be helpful. Not clear what other treatment options are left for me to deal with the PCa, alas.

Now, as to side effects, which seemed non-existent in the first cycle, well I have them with a vengeance now! My pulse rate has rocketed to 100, Sodium level has plummeted and it seems I have become hyperthyroidic . This shows in low energy levels, a nagging headache, a persistent sore throat and breathlessness. I expect extra medication this week when I have the third infusion will sort this out but I have my doubts whether immunotherapy is going to be much help to me.

A magic bullet for PCa, it ain't! Hopefully, for my bladder cancer mets it will help, but that is not for this forum.

I'll only add to this thread if something dramatic changes.

AC

User
Posted 11 Mar 2019 at 18:50
Good luck AC. Hope it all gets a bit better soon. And don’t forget my PSA (1st month on Enzalutamide) has just come down 36% but is still 600 so you’ve got a Fair bit of catching up yet!,😂

Keep the Faith

J.

User
Posted 01 Apr 2019 at 17:38
Have had a CT scan after my third cycle of Keytruda and alas it did not work for my bladder cancer, the mets of which mainly in my liver, have spread and based on PSA readings, it as ineffective for my PCa as well. The treatment has stopped therefore with some unpleasant effects of hyperthyroidism to overcome over coming weeks. I have also stopped Zoladex after nearly 12 years so my final months will be treatment free. I hope to enjoy an improved quality of life for a while. With no treatment appointments we can take some overdue holidays and make some pleasant memories.

I join si ness in this happy state.

Best wishes to all!

AC

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User
Posted 19 Feb 2019 at 19:34

With you all the way, AC.

Let's hope the treatment can have the positive duel outcome you hope for. 

Best regards

User
Posted 19 Feb 2019 at 19:49

Hope it goes well tomorrow AC. Interesting post.

 

Ido4

User
Posted 11 Mar 2019 at 17:23
I have completed my second cycle but the side effects have been unwelcome! First, though, is the treatment effective for PCa? Based on my PSA rising rapidly from 3.5 before treatment to 6.5 after the first cycle and now 10.0, I have to doubt it! The scan due at the end of March may reveal why the PSA is rising so fast, near trebling in six weeks, but it seems unlikely to be helpful. Not clear what other treatment options are left for me to deal with the PCa, alas.

Now, as to side effects, which seemed non-existent in the first cycle, well I have them with a vengeance now! My pulse rate has rocketed to 100, Sodium level has plummeted and it seems I have become hyperthyroidic . This shows in low energy levels, a nagging headache, a persistent sore throat and breathlessness. I expect extra medication this week when I have the third infusion will sort this out but I have my doubts whether immunotherapy is going to be much help to me.

A magic bullet for PCa, it ain't! Hopefully, for my bladder cancer mets it will help, but that is not for this forum.

I'll only add to this thread if something dramatic changes.

AC

User
Posted 11 Mar 2019 at 18:50
Good luck AC. Hope it all gets a bit better soon. And don’t forget my PSA (1st month on Enzalutamide) has just come down 36% but is still 600 so you’ve got a Fair bit of catching up yet!,😂

Keep the Faith

J.

User
Posted 01 Apr 2019 at 17:38
Have had a CT scan after my third cycle of Keytruda and alas it did not work for my bladder cancer, the mets of which mainly in my liver, have spread and based on PSA readings, it as ineffective for my PCa as well. The treatment has stopped therefore with some unpleasant effects of hyperthyroidism to overcome over coming weeks. I have also stopped Zoladex after nearly 12 years so my final months will be treatment free. I hope to enjoy an improved quality of life for a while. With no treatment appointments we can take some overdue holidays and make some pleasant memories.

I join si ness in this happy state.

Best wishes to all!

AC

User
Posted 01 Apr 2019 at 19:38

Good luck AC

Don't blame you for making this choice. I wish you a wonderful time making those memories.

take care 

Devonmaid xxxx

User
Posted 01 Apr 2019 at 20:28
AC my heart goes out to you. You have been a rock to me and many many others with your input and great knowledge. I wish you all the time you want treatment free and get those breaks and memories in. Very best wishes
User
Posted 01 Apr 2019 at 20:30

Sorry the Keytruda hasn't helped AC. I hope you have a good time enjoying well deserved holidays and making those memories.

You have helped so many with your knowledge and honesty.

Best wishes,  Ian.

 

Ido4

User
Posted 01 Apr 2019 at 20:34
AC

You are an inspiration to us all. Have fun.

P

User
Posted 01 Apr 2019 at 21:11
Hope your final months will be “many final months”.

Keep the Faith

Best wishes

J

User
Posted 01 Apr 2019 at 23:20
Sorry to see your update AC - wishing you many, many happy moments yet to come x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 02 Apr 2019 at 07:39

So sorry to see your news.  enjoy those holidays.

ulsterman

User
Posted 02 Apr 2019 at 08:41
Sorry to see your results AC.we wish you well in all you do and Thank you .enjoy your holidays.Geoff
 
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