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After Chemo what now

User
Posted 11 January 2018 11:14:23(UTC)

Hi 

My husband diagnosed March 2017 PSA over a thousand and extensive bone mets and lymph nodes. On HT and last year had 6 sessions of Docetaxel. 3 weeks after last session PSA down to 1.1 so very happy with that.

Went for new scans CT scan showed slight improvement but bone scan a lot worse. This was explained by the first was done on an old scanner and the new one on a much newer one. Anyway she only wanted to go by PSA so sent for new PSA just to check and that came back as 2.2. So sent for another PSA beginning of January and this has come back at 4.0. Had a phone call from hospital to collect a letter asking GP to put him on Bicalutamide. PSA now seems to be doubling every 3 to 4 weeks. I'm now feeling that Chemo has not had the positive outcome that we had hoped for. We last saw an Onco beginning of December for the scan results and told to see her again in 3 months. I feel very down and now next appointment has been moved to the end of March, supposedly to give time for the Bicalutamide to work. It seems all the stresses of going through Chemo were not worth it. We have no idea what next plans will be as at the last meeting Onco said it was an average of 2 years before further treatment would be required and we are now on further treatment.

Sorry I just feel so down. We do have a great Oncology nurse who has been giving us the results and the letter but she can't double guess what the Onco will suggest.

User
Posted 11 January 2018 15:05:30(UTC)

Hiitsme
Try not to feel too down. I too was diagnosed last Feb,(17), with a PSA of 1547!! And extensive bone mets. And have had 13 monthly Degaralix hormone injections with a changeover to my 1st 3 monthly Prostap/3 injection due on the 29th Jan/18. I’ve also had 6 Doxetaxel chemo infusions together with the associated steroids but my PSA is only down to 128? So if I ever had a “4” I’d be over the moon!!
I realise it’s “horses for courses” but keeping fighting it and take care of both of you because I know it’s a massive strain on my partner and family too.
Anyway I’m off to play golf on Portugal in 2 weeks which will almost be the yearly anniversary of my initial diagnosis, so the ba****d hasn’t got me down yet nor if I have my way will it prevail in the near term?
Got a meeting with my oncologist on the 5 th Feb to decide wether to go onto Enzalutamide or not, but whatever she says I ll just go with the flow and hope for the best. I can’t say enough good things about the NHS in my area as they always prioritise all my treatments and queries, and from the oncologist down to the lady who brings me my tea and sarnies I love them all ?!?
All the best
J.
Ps if your not happy waiting, get back onto them for an earlier appointment, as there’s enough stress with PCa without any extra pressure. X

Thanked 3 times
User
Posted 11 January 2018 15:35:12(UTC)

Some oncologists tell their patients that the chemo will not reduce the PSA or if it does, that this will not be by much and / or will be temporary. Chemo does not kill prostate cancer cells. What it should do is critically injure the cancer cells so that they are weakened - that makes whichever hormone treatment your husband is on work much more effectively.

Don't give up yet!

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


Thanked 3 times
User
Posted 11 January 2018 16:07:48(UTC)
I had chemo Jan to April 2015, it shrunk the cancer in my lymphs. I then had radiotherapy from may to June 2015.
I was on biclutsmide but by October my PSA was accelerating fast, it only got to 4 but was down to 1 at its best, it was lower than your hubbys on diagnosis at 342 but high enough.
I then started abiraterone in Jan 2016, my PSA kept on falling until it got to 0.11 about 6 months ago. Since then it has fluctuated between 0.11 and 0.13, currently it is 0.11.
I was told averages for everything too, but I am a year past the average for abiraterone even though I was under the average for ht /chemo, swings and roundabouts.
In the two years since I started abiraterone I have run the Marathon des Sables across the Sahara twice, ran long multi day races in Spain, Iceland and more marathons than I can remember. I am 52 and I ran a bit before I was diagnosed but nowhere near as much as I have done.
In 57 days I am off to the Arctic to race 350 miles due north pulling a sledge unsupported.
I write this so that you see that anything can be possible, I never thought I would do any of the above races in my lifetime but I have.
I don't expect your husband to start running marathons but hopefully still focus on the things that you both want to do and do them. Prostate cancer will probably get me but there are no guarantees as I may be hit by a bus tomorrow, in fact any one of us may so focus on today as today is for living, what happens next month, who knows but don't waste today worrying about it, easy to say I know but it works for me. No one dies thinking I wish I worried more but many rue the days that they wasted worrying no matter how understandable that may be.
Kev
Dream like you have forever, live like you only have today
Avatar is northern lights whilst running in Iceland sept 2017
Thanked 5 times
User
Posted 13 January 2018 14:00:58(UTC)

Thank you so much for your replies.

Valleyboy I feel guilty being concerned about a PSA of 4 when I read your post. I didn't think that would be possible for my husband given his starting reading but we got so happy with how Chemo had gone and great reduction so it was quite a shock to start going up again straight after Chemo. Enjoy your golf and best wishes for 5th Feb.

LyneEyre thank you - we were just hoping for at least a short time without any extra treatment but this was not to be.

irun you are a real inspiration. Pushing your body through the almost impossible to prove you can do it. I remember 2 marathons while on Chemo and then what you have done since. My husband (67) has continued working and doing some walking which I'm sure is helpful but now he is off the steroids he doesn't have the energy he had while on Chemo which I think was the steroids. Best wishes for you Arctic race!!! Totally extreme.

I've calmed down a lot and think it might be an idea to talk to our nurse who is incredibly helpful.

Thanked 3 times
User
Posted 27 February 2018 20:20:59(UTC)

A bit of an update. Saw Oncologist today, appointment was brought forward. PSA up to 5 so told to stop taking Bicalutamide. The options we have been given are Abiraterone or Enzalutamide or clinical trials. She has suggested she will make an appointment at Marsden to talk to someone about Clinical trials which we will take up.If there is nothing suitable then it will be Abiraterone or Enzalutamide. More scans have been ordered. I felt a lot better with the consultation this time as she agreed more treatment was needed and the options seem sensible from what I've read on this site. Any suggestions from people as what they thought was best would be helpful.

 
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