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The story so far (2019 onwards)

User
Posted 12 Nov 2019 at 15:51

Greetings all, first post I've made anywhere about this 😎

After having several friends badger everyone they know over 50 to get a check, at 58 I visited the GP in March for DRE with blood test to follow a couple of weeks later (to allow prostate to settle).

GP rang me to say PSA was 55 and he had referred me to the Urology department. Invited by post several days later to attend for a biopsy in 10 days time. That certainly smarted and I suspect the fingermarks are still plain to see on the radiator next to the examination bench!

Results showed Gleason 3+4 and I was started straight away on a course of Bicalutamide tablets with an injection of Decapeptyl to follow every 3 months. Bone scan showed clusters on rib cage and spine so was referred to Oncology for further treatment. CT and Chest film show no other spread so far. Fast forward a week and a bit and the consultant told me he would hit me with Chemo straight off.

Started a course of Docetaxel, 6 infusions at 3 weekly intervals. Side effects were more irritating than debilitating to be honest, though they did somewhat wreak havoc with my summer passion of waterskiing and wakeboarding 😎 😎

Am currently seeing the Oncology team for a blood test every 6 weeks for now (only 1 so far after finishing Chemo) and my first post Chemo PSA was down to 2.6. Was kind of hoping it would be a bit lower but we play the hand we're dealt I guess.

Am currently in a holding pattern till the next blood test in a few weeks, so may be back to ask for suggestions on preferred treatment and side effects should it start to rise.

Good luck to everyone coping with the insidious big C

Steve

Edited by member 30 Jun 2021 at 15:37  | Reason: changed a word

Good luck to everyone coping with the insidious big C

User
Posted 13 Nov 2019 at 07:11

Hi Steve

Just wanted to say hi and welcome to the forum no one really wants to join.

My husband was diagnosed a bit later than you in July this year and is having upfront chemo same as you. His fifth one was yesterday and his PSA has come right down.

There is a wealth of advice on this forum which I am sure you will soon find out.  I am so glad I found it.

Best wishes

Mrs MAS

Edited by member 13 Nov 2019 at 07:13  | Reason: Spelling

Mrs MAS

User
Posted 13 Nov 2019 at 08:36

Hi Steve, your friends did a good thing badgering you. It sounds like you are coping well with treatment so far. Your positive attitude will help too.

Best wishes,

Ido4

User
Posted 13 Nov 2019 at 09:25
Great attitude Steve, welcome to the forum.

Next treatment is likely to be radiotherapy on the prostate which will reduce your PSA even more.

I had RT 7 months after diagnosis and it was a breeze compared to the Chemo.

Good luck.

User
Posted 13 Nov 2019 at 09:52

Hi Jasper, I get the feeling the Onc folks are in the "stable door" camp once it has escaped 😕

Good luck to everyone coping with the insidious big C

User
Posted 13 Nov 2019 at 09:52

Hi Jasper

I don't want to hijack Steve's thread but radiotherapy has been mentioned for my husband. Im not sure of the criteria etc as we have only seen it on a letter. Please see my question near the end of this thread (24 Oct).Any advice would be great.

https://community.prostatecanceruk.org/posts/t21758-A-bolt-from-the-blue----------and-radiotherapy-for-advanced-PCa

Mrs MAS

Edited by member 13 Nov 2019 at 10:13  | Reason: Not specified

Mrs MAS

User
Posted 19 Dec 2019 at 10:34

Back for a routine check with consultant on Wednesday 18 Dec.
PSA dropped a little further down to 2.03, testosterone at 0.41 so the Docetaxyl early course and Decapeptyl jabs seems to be holding things quiet.
Wants me back in Feb for a repeat of the initial scans to see how well it's gone. He seems reasonably optimistic so keeping my fingers crossed and not letting it loom over me like a black cloud 🙂🙃🙂

Edited by member 19 Dec 2019 at 10:35  | Reason: Not specified

Good luck to everyone coping with the insidious big C

User
Posted 19 Dec 2019 at 16:17

Hey 

 

Your diagnoses seems similar to my dads. Diagnosed in jan 19 , g7 with metatastic spread to bone. No other solid organ involved. Started chemo 6 rounds completed , he is now in the middle of 20 session of radiotherapy due to finish on 3rd jan .

I am not sure where about you are being treated   And you are correct there was a school of thought around radiotherapy after the cancer has metastasised out with the prostate. On saying that one arm of the stampede trail found that treating  prostate cancer which had limited spread with early chemo and radiotherapy can be beneficial in some cases. 

Dad was offered radiotherapy after chemo as although he has bone mets they are 6 singular mets. 

Amy 

User
Posted 19 Dec 2019 at 17:47

Hi Amy, that sounds like the Atlanta trial? I think the doc probably wants to see whats going on with the scans before considering further options. He seemed happy with the latest test results though... 

Good luck to everyone coping with the insidious big C

User
Posted 18 Mar 2020 at 11:39

I suppose I should change the title as it's now the following year 🙃🙃

Had 3 monthly consult over the phone today, PSA dropped a bit more down to 1.89 and Testosterone still <0.5. He reviewed the "12 months on" scans (Bone and CT) and seems happy with the shrinkage on the bone mets (seems like I have 6 in total 😕😕). No signs of mets in lymph nodes or organs. Still a 3 monthly PSA and Testosterone test with results from GP surgery, but 6 months for consult with him unless something raises it's ugly head before then. On the plus side, he says the met on T vertebrae shouldn't cause any risk if I start water skiing again this summer (bloody virus risk not withstanding) 🤠🤠 

Good luck to everyone coping with the insidious big C

User
Posted 18 Mar 2020 at 12:49

Sounds like things are holding or shrinking including PSA. Hope you get some water skiing in the next while.

 

Ido4

User
Posted 11 Jun 2020 at 23:47

3 monthly blood test this week. PSA still moving downward to 1.49 this test. Testosterone still holding well below the 0.7 mark at 0.28. Hope the wetsuit hasn't shrunk again during the winter 😎😎

Good luck to everyone coping with the insidious big C

User
Posted 12 Jun 2020 at 00:16
Great news
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 22 Sep 2020 at 13:06

Telephone consult  today. Not so positive as previously, as PSA test shows increase from 1.49 to 1.74. Consultant doesn't seem too concerned and is going to wait for next 3 monthly test to see if it was just a hiccup with the test result. If another rise occurs, will then consider the options 😐

Good luck to everyone coping with the insidious big C

User
Posted 22 Sep 2020 at 15:25
Hi Steve hopefully its just a blip. Has your T score changed from your June test?
User
Posted 22 Sep 2020 at 15:33

Originally Posted by: Online Community Member
Hi Steve hopefully its just a blip. Has your T score changed from your June test?

Hi Jasper, not that I'm aware of, unless you mean testosterone as opposed to staging? That went up from 0.25 to nigh on 0.4 so possibly a slight misfire on the June jab though still below the magic 0.7 number

Good luck to everyone coping with the insidious big C

User
Posted 29 Dec 2020 at 12:08
3 monthly telephone consult today, PSA up slightly from 1.74 to 1.75. Consultant still seems happy that it's nothing to worry about, so looks like the beast is still sleeping (to borrow an expression from someone else!).

Next test in 3 months.

Good luck to everyone coping with the insidious big C

User
Posted 29 Dec 2020 at 17:40

Hi Steve, that’s pretty stable, good result. 

Ido4

User
Posted 25 Mar 2021 at 09:22

Fast forward (or so it seems, where do the days go!) and it's that time again.
It's now just on 2 years since initial PSA test highlighted a likely problem and started the ongoing saga.

Had been a little concerned before this test as it seems like I have had a lot more aches and pains this winter than previously, and the thought is always at the back of the mind that the beast is stirring.

Happy to report that PSA had gone down slightly to 1.59, Phew!

Roll on the improving weather 😎😎

Good luck to everyone coping with the insidious big C

User
Posted 25 Mar 2021 at 09:29

That’s good news Steve. It is normal to think that the beast might be stirring before a test result comes in, certainly happens with me.

 

Ido4

User
Posted 25 Mar 2021 at 11:52

Yeah Ido, always try and put it out of my mind, but it's only human nature to think about it the couple of weeks before a test 😔

Good luck to everyone coping with the insidious big C

User
Posted 31 Mar 2021 at 11:49

Good news on the results.  Like you I was feeling a few aches and you naturally think "is it the beat..." but the chances are it is just the body doing wastes its always done...... you are just more aware.

I hear the good weather is coming...... soon...... honest.

User
Posted 30 Jun 2021 at 15:45

Latest blood test 22 Jun - PSA down slightly at 1.53, Testosterone at 0.35 so a result there. Having had some heavy duty aches after my last Decapeptyl jab. Lyn said to make sure the Onco team knew about it. The phone line wasn't the best in the world, but it seems I will now be having a scan in the next few weeks just to check everything's still ok. Thanks Lyn, you're an angel 😎   

Good luck to everyone coping with the insidious big C

 
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