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Mile stone,

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User
Posted 05 Dec 2020 at 00:58

Just thought I’d bring you all up to date as I don’t post on here much nowadays, but it’s NOW 15 years since I was told I had PCa, 13.6 last year it shot up to 80.8 as Onco would not restart HT and allowed Mets to happen, now thanks to ongoing Zoladex every 12 weeks and daily Enzalutamide it’s stabilised at 0.56, next Bloods in two weeks, I’ve posted this in “end of life” as that’s how I feel ! Yes I know it could be years to go but I haven’t much energy for doing anything and this lockdown and Vulnerable status don’t help either.

Chris.

BUT I’m still ere!

User
Posted 05 Dec 2020 at 00:58

Just thought I’d bring you all up to date as I don’t post on here much nowadays, but it’s NOW 15 years since I was told I had PCa, 13.6 last year it shot up to 80.8 as Onco would not restart HT and allowed Mets to happen, now thanks to ongoing Zoladex every 12 weeks and daily Enzalutamide it’s stabilised at 0.56, next Bloods in two weeks, I’ve posted this in “end of life” as that’s how I feel ! Yes I know it could be years to go but I haven’t much energy for doing anything and this lockdown and Vulnerable status don’t help either.

Chris.

BUT I’m still ere!

User
Posted 18 Dec 2020 at 05:05
Latest Blood result, it’s gone up again, now 0.66 from 0.56 where it was for 16weeks.

New meds soon of Ibandronic Acid monthly tablet I think Onco said, waiting for letter to GP to prescribe.

Hope you all have as reasonable and Peaceful Christmas as you can, best wishes, thoughts and prayers to you all.

Chris.

User
Posted 03 Jul 2021 at 08:17

So PSA is definitely on the rise again, every 4 weekly blood test it’s up, now 4.3, letter from Onco to GP, my copy, says another Bone Scan soon as it seems that the Enzalutamide isn’t now working, so could be more Chemo! Last had 14 years ago! Can’t say I’m looking forward to it, but any treatment is better than a box!!

Chris.

 

ps, Lynn, I’m planning 2023 hols now, 2022 is all booked but can always fit another one in!

Edited by member 03 Jul 2021 at 08:19  | Reason: Not specified

User
Posted 20 Nov 2021 at 12:59

No Barbara, essexbabe, it wasn’t a blip as PSA is now 19.94, 12.55 four weeks ago!

Next bloods, 2nd Dec.

16years since dx on 5th Dec

Next Oncologist chat, Prof, 9th Dec, to find out what, if anything, he decides to next as Oncology Nurse said, a short while ago, that there is not a lot more they can do for me.

 

Chris.

Edited by member 20 Nov 2021 at 13:51  | Reason: Lunch.

User
Posted 18 Feb 2022 at 12:40

Keep moving forward hope the chemotherapy works stay positive speaking to a man at local hospital following my last PSA test they gave him 18 months diagnosed with widespread Mets that was in 2011 still here loads off new treatment happening all the time 👍

User
Posted 24 Feb 2022 at 16:04
Well folks, Chemotherapy, Taxotere, starts on Monday, initially 10 sessions every 3 weeks up to September then reevaluate to see if I need more.

Chris.

User
Posted 27 Jan 2023 at 16:09
January update, had blood test yesterday, but I think they only tested for PSA, well, it’s gone from 24.36 two months ago to 39.92, ouch!

Onco chat next Thursday to see what’s next.

But, I have now passed the 17years since Surgery now, but what’s next I wonder, Stilboestrol or more Chemo?

Stay strong and worry less!

Chris.

User
Posted 29 Jan 2021 at 13:17
Chris, I'd say calendar month, as you say "same date each month".

Best wishes.

Roger
User
Posted 04 Feb 2021 at 16:19
Just had my bimonthly chat with Oncologist, he’s happy. Result of yesterday’s Blood Test stays the same at 0.66.but keep an eye on side effects of the Ibandronic acid.

Stay on the meds, Enzalutamide daily, Dexamethasone every other day, Ibandronic Acid Monthly, not 4 weeks, and Zoladex every 12 weeks.

So 15 years and counting, but it is a struggle, still I can start planning 2022 holidays now!

Chris.

User
Posted 07 Feb 2022 at 14:02
Barry, Any treatment is better than the Box, no I’m not concerned about the Chemo, especially if it keeps me alive for 2 Grandchildren Weddings in August, either end of the Month. And dare I hope to see my 80th next year!

Chris.

User
Posted 12 Feb 2022 at 10:31

Enzalutamide and Dexamethasone both stopped now.

Waiting for Chemo start date.

I’ve just been looking at my Bone Scan Skeleton images which shows widespread Mets from Knees, just, to Skull, with worse areas in Hips/Pelvis, Spine, Sternum, Shoulders, neck, Face and Skull!

Oh well!

I am still here!

Chris.

PS, I’m not looking for sympathy, just to show what’s happening to me.

Edited by member 12 Feb 2022 at 10:33  | Reason: Missed an area.

User
Posted 12 Feb 2022 at 20:36

Ah sorry to see this Chris; as you know, mets to the skull and face are rare and can cause unpleasant symptoms but you are following in big footsteps so hoping the chemo knocks it back good and proper.

We still have our PCUK t-shirt somewhere ... I don't think you can buy them any more. 

"Dare We Hope? We Dare.

Can We Hope? We Can.

Should We Hope? We Must."

Andy Ripley OBE

Edited by member 12 Feb 2022 at 20:40  | Reason: Not specified

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

User
Posted 14 Feb 2022 at 12:50
Lyn, I still have my pale blue Prostate Cancer Charity T shirt and some sashes!
User
Posted 15 Jun 2022 at 06:33

As my years on this journey increase my body is finding it harder to recover, but hey ho I’m still here, soon be 17 years, there are others around with a few more years than me.

Now, an update, I had my Last Dexamethasone yesterday lunch time as my Onco has stopped them prior to next Chemo, he hasn’t said why, they just weren’t prescribed, so I can query that at next chat following next Bloods on 29th. At least it’s 24 tablets less!

Chris.

Edited by member 15 Jun 2022 at 06:34  | Reason: Grammer

User
Posted 15 Jun 2022 at 18:00

Stick in there Chris.

Those journeys to Shoreditch and back on the 47s toughened us up enough to deal with almost anything.

 

Roger
User
Posted 18 Jun 2022 at 15:17
I'm trying to catch up on how folks are doing.

Chris, good to read you're still here fighting on.

Barry sad to read of your troubles. Certainly puts the value of low PSA into perspective.

Hope you both do well with treatment.

Ray

User
Posted 13 Jul 2022 at 07:49
Well, I’m now on TIA/Stroke watch, so extra pills and scans!

7 Chemo done, it certainly helps having the dose reduced to 130, number 8 in under 2 weeks, at least the PSA went down again, and we ‘struggle’ on, energy levels are low, so a short spell of doing anything means a sit, but I’m still here, soldiering on.

Chris.

User
Posted 13 Jul 2022 at 08:12

The longest that I have seen since diagnosis is 21 years, I’ve heard of a 25 years, I’m now 17 years since my GP first noted my PSA was rising into double figures.

 

Chris.

User
Posted 20 Aug 2022 at 16:03
I had Chemo 9 delayed as the bloods show abnormalities, especially in bones and liver counts, had a second blood test when I should have had chemo, don’t know the results, except no better, so had another blood test on Thursday and saw Oncologist on Friday who said the Liver readings were reduced, so chemo 9 goes ahead on Monday with, possibly, another reduction in dosage.

I shall get the blood results printed as normal and see how much reduction there is.

Chris.

User
Posted 29 Aug 2022 at 08:24

Tony was on stillbestrol (excuse spelling) for 10 months before it stopped working , all the best Barbara x

User
Posted 18 Dec 2022 at 13:27
Barry,

I was on Enzalutamide Jan 20 - Feb 21 when PSA was rising yet again! Then started chemo for the second time.

Chris

User
Posted 18 Dec 2022 at 13:43

Yes I did feel the Chemo was worth it because it has decreased the Mets in the main area of Spine, and subdued the Bone pains.

chemotherapy doses up to number 6 didn’t seem a problem it was 7 onwards that kept being paused because of Liver Function part of the blood test.

 

chris.

Edited by member 19 Dec 2022 at 22:49  | Reason: Not specified

User
Posted 28 Jan 2023 at 11:35
Hang in there Chris.
Barry
User
Posted 02 Feb 2023 at 21:27

Well Onco phone call today confirms that I will be starting Stilboestrol as soon as I collect them from the Hospital Pharmacy!


Allison, I’m only on 1 tab a day to start with, then if I tolerate them ok, it will be 2 a day, and next Onco chat in 3 months, he said.

 

Chris.

Edited by member 07 Feb 2023 at 23:22  | Reason: Not specified

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User
Posted 05 Dec 2020 at 10:15

Way to go Chris 👍👍

Edited by member 05 Dec 2020 at 10:16  | Reason: Not specified

Good luck to everyone coping with the insidious big C

User
Posted 05 Dec 2020 at 13:41

Glad to see PSA has stabilised and good luck for the future.

 

 

regards Barbara x

User
Posted 05 Dec 2020 at 14:19
That's a great response to the HT Exbus - loads of mileage still in the tank, I think.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 05 Dec 2020 at 16:51

Inspiring......keep doing what you’re doing. Best wishes.

User
Posted 05 Dec 2020 at 17:16
That's good news Chris. Your pre-select box is still far from worn out.
Roger
User
Posted 05 Dec 2020 at 18:30

Great response Exbus. 

Ido4

User
Posted 05 Dec 2020 at 22:35

Good to hear from you again and so glad that drugs are doing what they should. Long may that continue 

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 07 Dec 2020 at 02:41

Wishing you all the luck in the world, Chris.

I hope the Meds keep working for you. 

Steve 

User
Posted 07 Dec 2020 at 17:43

Live for today .
Good luck 
Barry

User
Posted 07 Dec 2020 at 20:29
Best wishes from me too Chris
Barry
User
Posted 18 Dec 2020 at 05:05
Latest Blood result, it’s gone up again, now 0.66 from 0.56 where it was for 16weeks.

New meds soon of Ibandronic Acid monthly tablet I think Onco said, waiting for letter to GP to prescribe.

Hope you all have as reasonable and Peaceful Christmas as you can, best wishes, thoughts and prayers to you all.

Chris.

User
Posted 29 Jan 2021 at 11:27
I have at long last got the letter about being Prescribed IBANDRONIC ACID Tablets, it says 1 a month.

So, friends, is that every 4 weeks, 28days, or the same date each month?

Chris.

User
Posted 29 Jan 2021 at 13:17
Chris, I'd say calendar month, as you say "same date each month".

Best wishes.

Roger
User
Posted 02 Feb 2021 at 08:52
Collected IBANDRONIC ACID PILL yesterday, Pharmacist said to Shirley next one in 28 days, then every 4 weeks!

Leaflet says in many places, Monthly!

So I’ve decided on the 1st Tuesday of every month. (Unless Onco says otherwise)

So I will ask Onco on Thursday when he next phones with Tomorrows Blood Test result.

User
Posted 02 Feb 2021 at 09:16
In medical terms , it means every 28 days.

Good luck

User
Posted 04 Feb 2021 at 16:19
Just had my bimonthly chat with Oncologist, he’s happy. Result of yesterday’s Blood Test stays the same at 0.66.but keep an eye on side effects of the Ibandronic acid.

Stay on the meds, Enzalutamide daily, Dexamethasone every other day, Ibandronic Acid Monthly, not 4 weeks, and Zoladex every 12 weeks.

So 15 years and counting, but it is a struggle, still I can start planning 2022 holidays now!

Chris.

User
Posted 04 Feb 2021 at 20:30

Good results Exbus. Sorry you’re struggling a bit, take care.

Ido4

User
Posted 05 Feb 2021 at 00:50
Planning next year's holidays is a great idea. My dad has just booked a cruise for this October!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 05 Feb 2021 at 06:25

Morning Chris 
Thats a lot of meds , I am on three monthly Prostap , bloods 00.4 for the last three years 
But I know that will change , so I must ask Onco about what will come next 
Good Luck , Holiday a good idea
Regards Barry

User
Posted 03 Jul 2021 at 08:17

So PSA is definitely on the rise again, every 4 weekly blood test it’s up, now 4.3, letter from Onco to GP, my copy, says another Bone Scan soon as it seems that the Enzalutamide isn’t now working, so could be more Chemo! Last had 14 years ago! Can’t say I’m looking forward to it, but any treatment is better than a box!!

Chris.

 

ps, Lynn, I’m planning 2023 hols now, 2022 is all booked but can always fit another one in!

Edited by member 03 Jul 2021 at 08:19  | Reason: Not specified

User
Posted 03 Jul 2021 at 09:22

Hi Chris.  Just another pothole to deal with on this long old highway you're on and it looks like the repair team are on the case. as always.

You are like the RTs you used to drive, you just need to be put into "Aldenham" every now and then.

Best wishes to you both

Roger
User
Posted 04 Jul 2021 at 07:33

Good luck with whatever the next treatment you have, looks like you and Tony started your journeys at the same time, Tony went to the Doctors Sept 2005 when we got back from a holiday in thailand due to flow issues. he was diagnosed Dec 05 at age 61 and will be 16 years in Dec since diagnosis.

 

regards Barbara/

User
Posted 21 Jul 2021 at 23:07

Yes Barbara, what treatment has Tony had?

Well folks, it has risen again 4 weeks later to 6.0 as of yesterday, and I had another Bone Scan today, and I actually get to see my Oncologist next month, but that will be after yet another blood test!

Chris.

oh, and keep on with the Enzalutamide, Dexamethasone and Zoladex!

Edited by member 21 Jul 2021 at 23:08  | Reason: Not specified

User
Posted 22 Jul 2021 at 07:06
Hi Chris

Tony started with HT and RT back at the start stayed on the Hormones for 2 yrs back on hormones in 2012 after 3 years off them and then intermittent HT until feb 17 when he went back on HT permanantly, ,Biculamatide added Jul 18 stopped in Oct as did not work, 10 rounds of Docetaxol Oct 18 to May 19,Consolidation RT to para aortic lympth nodes dec 19 for 5 weeks , Abiriterone and prednisalone May 19 to march 21, now on Diethylestilbestrol since march as he could not have more chemo. Tony also has CKD and has recently started dialysis.

good luck with the Scan

regards Barbara

User
Posted 05 Aug 2021 at 13:45
UPDATE

I’ve just had the Clinical Report of my recent Bone Scan, 21.07.21 and it just shows that there is light, glimmer, at the end of the tunnel.

“Compared to previous Scan in February 20, there has been improvements in Bony Metastatic Lesions, with some disappearing and others reduced. No new Lesions”

BUT, the PSA is still going up, it is now 6.0

Chris.

User
Posted 05 Aug 2021 at 15:35
Chris it’s still very positive news and glad for you. I know each case is different but my psa was up to 990 ! I’m generally good fingers crossed 🤞
User
Posted 05 Aug 2021 at 18:36

good news about no more spread etc. hopefully the PSA rise is just a blip.

 

regards Barbara

User
Posted 05 Aug 2021 at 20:29

Chris 

Some good news in there, so keep going. 

Thanks Chris

 

 

User
Posted 06 Aug 2021 at 17:40

That sounds like good news 
Regards Barry

User
Posted 20 Nov 2021 at 12:59

No Barbara, essexbabe, it wasn’t a blip as PSA is now 19.94, 12.55 four weeks ago!

Next bloods, 2nd Dec.

16years since dx on 5th Dec

Next Oncologist chat, Prof, 9th Dec, to find out what, if anything, he decides to next as Oncology Nurse said, a short while ago, that there is not a lot more they can do for me.

 

Chris.

Edited by member 20 Nov 2021 at 13:51  | Reason: Lunch.

User
Posted 21 Nov 2021 at 08:01
So sorry to hear that Chris good luck for your appt on the 9th Dec, lets hope he has something up his sleeve.

Barbara x

User
Posted 21 Nov 2021 at 13:19

Originally Posted by: Online Community Member
So sorry to hear that Chris good luck for your appt on the 9th Dec, lets hope he has something up his sleeve.

Barbara x

I am sure we all share this sentiment

Barry
User
Posted 05 Feb 2022 at 07:39

I actually met my Oncologist yesterday and he said that the latest Bone Scan shows spread, more Lesions, and PSA is over 30, therefore stop taking Enzalutamide as it’s not working, can’t remember what he said about the Dexamethasone which the Hospital prescribes at the same time, but I start Taxotere at the end of the month, indefinitely.

I have asked for the Bone Scan report and CD, now wait for dates to start.

Continuing with Ibandronic Acid for 5days a week and Zoladex every 12 weeks.

Chris.

PSA was 34.63

My last Chemo, Taxotere was in July 07.

Edited by member 07 Feb 2022 at 13:59  | Reason: Figures.

User
Posted 05 Feb 2022 at 08:26

Hi Chris,

  sorry to hear your news and hope the new treatments work for a long while, I have only just realised that you where actually diagnosed Dec 2005 the same as Tony, he was the end of Dec.

 

all the best

Barbara x

User
Posted 05 Feb 2022 at 10:12

H Chris ,

Sorry to hear the latest news , are you still feeling s*** ,is chemo next,

take care 

Regards Barry

User
Posted 07 Feb 2022 at 14:02
Barry, Any treatment is better than the Box, no I’m not concerned about the Chemo, especially if it keeps me alive for 2 Grandchildren Weddings in August, either end of the Month. And dare I hope to see my 80th next year!

Chris.

User
Posted 12 Feb 2022 at 10:31

Enzalutamide and Dexamethasone both stopped now.

Waiting for Chemo start date.

I’ve just been looking at my Bone Scan Skeleton images which shows widespread Mets from Knees, just, to Skull, with worse areas in Hips/Pelvis, Spine, Sternum, Shoulders, neck, Face and Skull!

Oh well!

I am still here!

Chris.

PS, I’m not looking for sympathy, just to show what’s happening to me.

Edited by member 12 Feb 2022 at 10:33  | Reason: Missed an area.

User
Posted 12 Feb 2022 at 11:54
Chris you're like an RT, you'll go on and on forever and the guys at the Aldenham works will keep your chassis in good trim and fit for many more miles of service.
Roger
User
Posted 12 Feb 2022 at 12:13

Roger, but even their chassis fail eventually?

Chris.

 

PS, last RT was 06, and last Chemo was in 07.

Edited by member 12 Feb 2022 at 12:14  | Reason: Not specified

User
Posted 12 Feb 2022 at 13:21

You will know from past experience what to expect with Chemo but hope it works well for you.

Edited by member 12 Feb 2022 at 16:50  | Reason: spelling

Barry
User
Posted 12 Feb 2022 at 14:26

good luck with the chemo xx

barbara

User
Posted 12 Feb 2022 at 20:36

Ah sorry to see this Chris; as you know, mets to the skull and face are rare and can cause unpleasant symptoms but you are following in big footsteps so hoping the chemo knocks it back good and proper.

We still have our PCUK t-shirt somewhere ... I don't think you can buy them any more. 

"Dare We Hope? We Dare.

Can We Hope? We Can.

Should We Hope? We Must."

Andy Ripley OBE

Edited by member 12 Feb 2022 at 20:40  | Reason: Not specified

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

User
Posted 13 Feb 2022 at 07:26
Wishing you all the very best with your chemo, Chris, xx
User
Posted 13 Feb 2022 at 09:28

Chris

Keep going mate. Hope the chemo helps.

Thanks Chris

User
Posted 14 Feb 2022 at 12:50
Lyn, I still have my pale blue Prostate Cancer Charity T shirt and some sashes!
User
Posted 14 Feb 2022 at 17:37

Originally Posted by: Online Community Member
Lyn, I still have my pale blue Prostate Cancer Charity T shirt and some sashes!

👍

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

User
Posted 18 Feb 2022 at 11:33

My new Chemo regime starts on the 28th Feb, see the Onco nurse for bloods and chat on 23rd and they suggest that my Wife comes too.

I get the impression that there are no more Rabbits in the hat.

Skull Mets, as far as I can read up on, uk sites only, a year to 18 months prognosis.

Hindsight is wonderful, but I wonder if the gap between being told “I’ve got Cancer and it’s contained” on 5.12.05 to surgery on 25.01.06 and then reading, after translating, “cells have escaped” in 2011 when I took my notes to Prof locally, is the reason that every treatment has failed.

Chris..

Edited by member 18 Feb 2022 at 12:37  | Reason: Grammar

User
Posted 18 Feb 2022 at 12:40

Keep moving forward hope the chemotherapy works stay positive speaking to a man at local hospital following my last PSA test they gave him 18 months diagnosed with widespread Mets that was in 2011 still here loads off new treatment happening all the time 👍

User
Posted 24 Feb 2022 at 16:04
Well folks, Chemotherapy, Taxotere, starts on Monday, initially 10 sessions every 3 weeks up to September then reevaluate to see if I need more.

Chris.

 
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