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Mile stone,

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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 08:01

Hi exbus, getting 18 years post diagnosis is a success story. Even though it is now getting a bit tough.

Dave

User
Posted 13 Jul 2022 at 08:01
Glad to hear it Exbus!
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 21 Aug 2022 at 00:32

Thanks for the update exbus.

Dave

User
Posted 22 Aug 2022 at 18:02

Thank you for yor latest news Chris , 
Regards Barry

Edited by member 22 Aug 2022 at 18:02  | Reason: Not specified

User
Posted 22 Aug 2022 at 21:18

Well folks, that IS Chemo 9 done today, another reduction in dosage down to 100mg, so hopefully a shorter recovery time.
I will have to take my Oncologist at his word that the bloods had improved, although I had a print out of last Thursday results, he had Monday extra blood test results, which, unfortunately I could not have, so no PSA update, except it was down a bit, but still over 20, says nurse.
Chemotherapy number 10 in 3 weeks.


Chris.

Edited by member 22 Aug 2022 at 21:20  | Reason: PSA

User
Posted 28 Aug 2022 at 08:23

Letter from my Oncologist says that he may put me on Stilboestrol instead of Taxotere if the Liver Functions does not improve.


So we wait and see, next bloods in 2 weeks.


Chris.

Edited by member 28 Aug 2022 at 10:08  | Reason: Grammar

User
Posted 28 Aug 2022 at 12:31
Thanks for the updates Exbus, fingers crossed for the latest treatment
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 10 Oct 2022 at 10:28
Update, I should have had Chemo 11 on 3rd October but the ALP was way over the top, so next bloods done last Friday and the Liver Function were even worse, says Senior Nurse Practitioner, so Chemotherapy has finished.

So I assume it will be Stilboestrol next when I chat or see Oncologist on 21st. Bloods due on 20th.

Chris.
User
Posted 10 Oct 2022 at 21:17

I have been “away” for a while but been catching up on journeys of old friends like your good self . Sorry that the path is going in the wrong direction but glad that there is still a path today, let’s face it that’s all anyone can ask for cancer or not  . Hope all the rubbish happening to you does not stop your enjoyment of life . 

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 18 Dec 2022 at 07:54
An update from me, no further Chemo since 10th dose in September, latest blood test showed a significant improvement to the ALP & ALT, Onco organised a CT scan of Pelvis, Lumber and Thorax a few weeks ago, I’ve got my copy of the report which says there is an enlarged lymph node in the pelvis area, slight increase in Mets in Lumber and pelvic spine, decrease in Mets in the main area of Spine, but another increase in the Ribs.

One thing that the Chemo did was to keep the bone pains at bay, but unfortunately that side of the chemo has decided to cease, so pelvic pains are making themselves known. Only paracetamol taken as and when needed.

So, medication wise, I am still on Alendronic acid pills, 5 times a week, Adcal-D3, Zoladex (28th tomorrow), and Dexamethasone daily, next bloods are late January and Onco chat is February.

17 years since dx, 17 years since Surgery before Oncologist chat!

I wish you all a very Happy and Peaceful Christmas and a healthy or healthier New Year.

Chris.
User
Posted 18 Dec 2022 at 12:24

Hi Chris , 
Have you tried Enzalutamide I have been on it now since sept
But it has left me exhausted spending most of my time in bed
Enjoy Xmas 

Barry

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 13:37
This is great news for you personally Chris. Can I dare ask if you really feel the Chemo is worth it if you get bad results. It’s something that plagues my mind a lot but I guess when the time comes you just go for it yeh ?
Anyway here is to 17 years. Enjoy Xmas 🎄
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 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 28 Jan 2023 at 07:22
Great advice Exbus!!

Can you nag to be restaged with a PET scan?
 
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