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Salvage radiotherapy

User
Posted 09 Oct 2019 at 12:11
Great news. Looking good all round

If life gives you lemons , then make lemonade
User
Posted 09 Oct 2019 at 18:55
Great news. Keep at it

Bri
User
Posted 06 Jan 2020 at 14:30

I thought I would update this thread since I have latest PSA result plus I saw my oncologist this morning.


PSA measured 30/11/19 is <0.1, happy days. The oncologist today was very happy with things as they stand.


He has cautioned that I am not cured but because the PSA is <0.1, 9 months after HT ended he has moved me to 6 monthly reviews by letter rather than face to face appointments. He has ensured I still have the telephone number for the specialist nurses and should get in touch if anything changes.


I have been here before so am naturally cautious too but also very happy that PSA is still undetectable.


I feel so much better off the HT so hope that I stay off it long term.


Keep fighting.


 


 


 


 

Ido4

User
Posted 06 Jan 2020 at 14:53
That's excellent news. Delighted to hear it!

Best wishes,

Chris
User
Posted 06 Jan 2020 at 15:21
Really pleased for you mate. What a relief hey !

If life gives you lemons , then make lemonade
User
Posted 06 Jan 2020 at 16:56

So pleased for you - happy new year!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 06 Jan 2020 at 17:07
Missed this. Nice one, Centurion!

My next test is in about four weeks. I hope get the same after my last dissapointment!
User
Posted 06 Jan 2020 at 18:10

Thanks CC,CJ, Lyn and PP. The relief on my wife’s face is fantastic to see.


We we’re chatting on our way to the cancer centre about it being almost 5 years since diagnosis. 4 of those 5 years have been either in treatment or attending appointments with oncology or urology.


I am by nature cautious so won’t be assuming the fight is over but it’s good today.


PP, I have everything crossed for your next test.


CJ, I am thinking about you as treatment will be resuming reasonably soon I guess. 

Ian


 


 

Ido4

User
Posted 06 Jan 2020 at 19:03
Cheer Ian

It’s been three and a bit years for me. Feels like five minutes. Just gotta keep looking forward, eh?
User
Posted 06 Jan 2020 at 21:46

Great news Ian!

User
Posted 06 Jan 2020 at 22:07

It is great news and let's hope the break from treatment is a long one.

User
Posted 06 Jan 2020 at 22:19

Pleased for you, Ian.  Happy new year.


ulsterman

User
Posted 06 Jan 2020 at 22:24

Ido4


Great news on the PSA, sometimes treatment and issues seem never ending.  Hope you get some respite from more treatment.


Thanks Chris

User
Posted 06 Jan 2020 at 22:50
Great news mate

Happy new year. Up your neck of the woods for a couple of nights next week

Bri
User
Posted 06 Jan 2020 at 23:44
😱 You are going across the wall, Bri??? Have you had your jabs?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 07 Jan 2020 at 08:40

Thanks Bri, hope you enjoy your time away.


Lyn, πŸ˜‚

Ido4

User
Posted 07 Jan 2020 at 13:44

Originally Posted by: Online Community Member
😱 You are going across the wall, Bri??? Have you had your jabs?


The Scottish blood flows through my veins Lynn as my father was from Edinburgh and I have lots of family still living there πŸ˜‰


Bri 

User
Posted 07 Jan 2020 at 13:57

I was going to ask which wall Lyn was referring to?


Hadrian’s, the Antonine one or an imaginary one πŸ™‚

Ido4

User
Posted 19 Jun 2020 at 17:05

A long update, apologies. Good news re PSA, not so good news re an apparent blood clot.


Friday 8th May 2020 I woke up with double vision and had to lie down after attempting to get up.


I ignored it all morning as best I could but decided to telephone optician to discuss it.


Immediate urgent referral to the Edinburgh Eye Pavilion. After getting through temperature checks etc. I had a thorough check which showed my left pupil was sluggish and left eyelid drooped plus movement in my left eye seemed limited. Conclusion was the third cranial nerve had been disturbed possibly by a stroke. So it was off to the Royal Infirmary where the doctors agreed left pupil was sluggish etc. ECG, head CT and head angiogram performed. No bleed observed, phew, but I now needed to see a neurologist for further tests.


The neurologist was of the opinion I’ve suffered a microvascular blockage interrupting the blood supply to the third cranial nerve resulting in double vision. He was also a bit concerned about my cancer history and was going to contact my oncologist. He advised me to start taking 75mg of aspirin daily as a precaution against further events. He was also concerned about Myasthenia Gravis which is an autoimmune disorder, certainly don’t want that. I haven’t heard back about the blood test for that so assume it was negative.


Six weeks on I still awaken with double vision, once I stand up and move it resolves after a few minutes but comes back again if I close my eyes for more than a few minutes. Apparently most cases resolve after a few months but some don’t.


I have had a raft of blood tests on Tuesday 16.6.2020 which included PSA, cholesterol and fasting sugar. My PSA is still <0.1 (yippee), cholesterol is 5.4 or so which is above range so waiting to hear back from GP who wants to get my blood pressure and cholesterol within range given what has happened.


I must admit I thought about cancer spread and got myself wound up about that…….


 

Ido4

User
Posted 19 Jun 2020 at 18:50

Ido4


Great news about the PSA. The other problems  don't seem too good, but sounds like you are being looked after.


Thanks Chris

User
Posted 19 Jun 2020 at 19:29
Ian

Good news about the PSA. Sorry to hear about the eyesight issue. I hope it clears up. The good thing is you are being looked after. If you can get your BP and cholestorol under control through exercise and diet changes that will be far better than pills. I managed to get mine down from pre-hypertenstion to the middle of the good range over time by doing that. I feel a lot better for it. Hope you will too.
User
Posted 19 Jun 2020 at 19:36
My fingers are all crossed up hoping for you. It’s one thing after another isn’t it ? Best wishes

If life gives you lemons , then make lemonade
User
Posted 19 Jun 2020 at 22:43

Thanks Chris, PP, and a Chris J. I walked 122 miles last month so trying to exercise as much as I can. I found myself saying to the neurologist “I’ve had enough of ill health, my turn should be over”. 
I’d rather not go on more pills so any dietary or other life style advice would be welcome.


Thanks again for the good wishes. Much appreciated.

Ido4

User
Posted 22 Jun 2020 at 16:10
Hey

I have been struggling with weight and fitness for so long.

What turned it round for me physically was a commitment to some concrete goals:

Closing all my rings on my Apple Watch fitness tracker
Doing 10,000 steps a day
Starting and sticking with Couch to 5K. I am on week 5 and I can run two 15 minute intervals whereas on week 1 I could barely manage 30 seconds.
Diet wise I do intermittent fasting (18/6) a few days a week and try and cut out snacks. I drink only twice a month.
My biometrics (Resting Heart Rate, BP, Recovery Rate and whatnot) are all vastly improved.

Mental health is a lot harder. I am stressed to hell and beyond because of beinbg unemployed and having to dig into my long term savings. I think that is what I need to concentrate on.

Anyway, the key is baby steps and persistence. Get an Apple Watch or a Fitbit so you can track and feel rewarded with progress.
User
Posted 22 Jun 2020 at 21:07

Thanks PP. Sorry your having a rough time still.


Ian

Ido4

User
Posted 23 Jun 2020 at 19:09

Having been fortunate and enjoyed good health for the majority of my life, these past 5 years have been a real roller coaster for me ... prostate cancer, the nasty side effects of radiation, main heart valve replacement, several colonoscopy sessions ... and yes, like you I am now thoroughly deflated with it all. But we’re still in there fighting and I will always remain grateful when in the past I have received positive posts and good wishes from guys such as yourself on this very worthwhile site. So I really do wish you the best of luck with your latest setback.

User
Posted 24 Jun 2020 at 01:22
Sorry Ido, I completely missed this! Sounds horrible & scary - I hope they get to the bottom of it soon.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 24 Jun 2020 at 09:51

Thanks Lyn. I go to the Eye Hospital again 2/7. My GP is looking at blood pressure, cholesterol etc. 

Ido4

User
Posted 04 Jul 2020 at 13:29

Thanks so much your posts really do help. I had surgery for PC 07.19. I was dry after 6 weeks & E.D almost there but no problem with a pump & ring. After a year, virtually no side affects & living life to the full .My PSA since surgery 02 / 04 / 07 / 12 / 17 . Now recommended Radical R.T, Prostate bed & Lymph nodes. I had the scan & tattooed on Thursday. Waiting for treatment plan, R.T. due to start around the 27th. Going through hell again. 

User
Posted 04 Jul 2020 at 13:54

Hi Kamsdevon, sorry you are having to go through salvage radiotherapy now, hope it sorts things out for you. Are you being out on hormone therapy too or just having radiotherapy?


Was your last PSA 0.17? 

Ido4

User
Posted 04 Jul 2020 at 14:24

Hi Ido yes 0.17 , no mention of hormones yet. 

User
Posted 04 Jul 2020 at 14:31

K


Like you had reservations about treatment. I was even sat on the anesthetic table being prepared for surgery and asking if anyone had changed their mind at such a late stage. A few months later I wondered why I had doubts. Three years later the PSA had risen and SRT was on the cards. 


Unfortunately the SRT has also failed. Have you tried to get any of the better scans to "try" and determine where the cancer might be. At such a low PSA detection may not be possible. 


Thanks Chris

User
Posted 04 Jul 2020 at 15:08

Hi Chris 1st video appointment with oncologist 23/6 then scan 2/7 . Thanks to all the information on here I now have a list of questions for my consultant. With such a low PSA I wasn't expecting RT.

Edited by member 04 Jul 2020 at 15:13  | Reason: Not specified

User
Posted 04 Jul 2020 at 18:46

K


No doubt they are looking at patterns and other data, not just the value of the PSA.


Thanks Chris

 
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