Salvage radiotherapy

User

Posted 08 Aug 2018 at 21:20

Fantastic!!

Long may this continue!!

User

Posted 09 Aug 2018 at 08:09

Great news Ian, I am very happy for you!

(by the way I had my consultation last night I am going back to your recommendation of "Fybogel" after 3 months of problems :\).

Richard

User

Posted 02 Nov 2018 at 10:25

So I've had the sigmoidoscopy 1/9/18. Evidence of radiation proctitis and a polyp removed for checking. Good news is the polyp has been looked at and is benign.

I saw my oncologist 15/10/18 and he is quite happy with the way things are for now. I have my last PROSTAP 3 injection on 3/1/19 and in my oncologists words "we wait and see what happens. If your PSA rises again then we will put you back on PROSTAP".

I had my bloods tested yesterday including PSA. I have full blood tests regularly as I am on arthritis medication so red cells. white cells, electrolytes, liver and kidney function.

I got a call from my GP at 4 p.m. to say the lab had phoned. My potassium reading was high (6.3) so I had to head off 15 miles to the Western General Hospital in Edinburgh for ECG, blood pressure. temperature and bloods to be rechecked.

After 2 and a half hours of waiting (not too bad overall) the potassium came back as normal (4.2) so got home at 9 last night, phew!

While I was there I asked the doctor if the labs had reported my PSA value. She went to check and it is still <0.1, hip hip!

Why is it that while I was driving home I had an urge to ask for a printout so I can see <0.1? Bloody disease and my control freakery!

Best wishes,

Ian

Ido4

User

Posted 02 Nov 2018 at 15:22

Congratulations! (I won't segue into singing "and Jubilations!" as you don't want ear damage added to the list :)

Time to focus on living well and having fun!

User

Posted 02 Nov 2018 at 16:38

In the main it was extremely good viewing your latest Post, Ian and long may the excellent readings continue. Agree very much with your last sentence though ... this awful illness makes one very sceptical even when we receive good results. Memo to self ... I must, MUST remain positive! David.

User

Posted 09 Jan 2019 at 09:00

A wee update.
I had my final PROSTAP 3 injection Thursday 3/1/18.
Squeaky bum time waiting to see if PSA levels remain undetectable once the HT leaves my system.
This is scary but I suppose we have to find out whether the oncologist is right and I have metastasis or not. I really hope SRT has worked.
I am looking forward to not having PROSTAP in my system after 2 years three months on it.

I am also finding my continence, which had fully recovered after LRP, is not so good. I am not leaking massive volumes but it is now affecting my everyday life.
Perhaps the radiotherapy has damaged the remaining sphincter?
I have been offered an artificial sphincter but the surgeon wants me to try pelvic floor exercises along with solifenacin to see if that helps first.

Best wishes to all, Ian.

Ido4

User

Posted 09 Jan 2019 at 12:04

Good news about final injection. Hopefully the effects will wear off quite quickly but could be up to two years I hear. Bad news about continence. It’s horrible ain’t it. I hope things improve

If life gives you lemons , then make lemonade

User

Posted 09 Jan 2019 at 16:52

Good luck Ian

I’ll be crossing everything I can for you.

Keep fighting!

User

Posted 11 Jan 2019 at 17:08

Ian

Following numerous dilatations I did regain my continence several times. My continence suffered post RT, hard to conclusively judge, but I think my continence did improve, urgency is a issue but at least I get a short warning. I have tried most of the solifenacin type medications they took a while to kick in, then seemed to lose their effectiveness, now on Regurin.

Best wishes.

Thanks Chris

User

Posted 21 Jan 2019 at 22:07

Latest PSA from 17/1/19 <0.1, fantastic. The next few months as the prostap leaves my system will be stressful. Next PSA measurement in 3 months.

My bloods generally have been problematic the last two months. 'False" high potassium results between 5.5 and 6.3. White cells 3.4, neutrophil 1.86, Lymphocytes 1.09, calcium 2.65. All taken 17/1/19. Red cell count was 4.4 and haematocrit 0.391 on Christmas Eve.

The above are all out of normal range.

As a check my TSH and free T4 were measured coming in at 1.3 and 12 respectively so normal range for my thyroid.

I am suffering from indigestion every day and night with periods where symptons disappear.

Have made appointment with GP 31/1 (earliest i could get) to discuss.

Sorry its a bit of a ramble, any thoughts?

Ido4

User

Posted 21 Jan 2019 at 22:49

Great news re PSA, no idea re rest of it!

User

Posted 22 Jan 2019 at 07:18

Whoop! Whoop! Brilliant news. Keep it up 👍

I’m due for my first post RT check in three weeks and am in a bit of a funk. This will help lift me out of it.

User

Posted 22 Jan 2019 at 07:30

Good news Ian and good luck in three months with the next PSA.

Hopefully the rest of the bloods can be sorted too

Cheers

Bill

User

Posted 22 Jan 2019 at 17:45

Good news on the PSA can't help with the others.

Thanks Chris

User

Posted 22 Jan 2019 at 18:08

At least the psa is gone hopefully for a long time. Are you on Cialis , can’t remember. Causes bad gastric probs. Best wishes to you.

If life gives you lemons , then make lemonade

User

Posted 22 Jan 2019 at 19:15

Thanks Chris, I am on twice weekly Cialis and have been taking Naproxen for arthritis.

I’ve made an appointment with a GP so hopefully get it sorted out.

I've had a GP on the phone tonight. I've to get monthly blood tests for the foreseeable and watch out for infection because of my low immune system results. Calcium to be rechecked too.

When are your scans due to be done? Hope you are doing well.

Take care.

Ian

Ido4

User

Posted 22 Jan 2019 at 19:52

When I had my surgery I was isolated 3 times due to low white cells and neutrophiles. They put it down to my bipolar meds at the time which I now survive without. After starting Cialis I was put on pantoprazole to stop severe acid probs. I’ve had horrendous leg pains for months which may be down to Cialis but I’m so shallow I don’t want to stop as I’m enjoying a love-life so much again. Saw GP today and has given me blood tests for Diabetes , Renal , arthritis and B12. I manned-up and broke down telling him how much I was drinking which could also be part of the problem.

So blood tests tomorrow, full bone scan Friday ( 4 hrs) , CT whole body Monday, anniversay night away Tuesday ( though not sure I can relax ) , and all results 6th Feb. And trying to hold down my job as well. At breaking point if I’m honest .......

Take care and best of luck with it all. Hope all bloods settle for you.

If life gives you lemons , then make lemonade

User

Posted 22 Jan 2019 at 22:12

It’s probably not a bad thing that you broke down and opened up. Sometimes the bubble needs to be burst.

I really respect your attitude to life and Cialis etc. It did make me giggle when you talked about being shallow and bashing on despite the gut problems.

I hope you can relax and enjoy your anniversary away on Tuesday.

Ian

Ido4

User

Posted 03 Jul 2019 at 16:57

Latest PSA <0.1 (taken 28/6/19), great news. I see the oncologist on Monday.

Hopefully my oncologist won’t rain on my parade.....

Had my last PROSTAP 3 jab 3/1/19.

Ido4

User

Posted 03 Jul 2019 at 17:03

Great result. Keep at it

Bri

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