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Mile stone,

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User
Posted 24 Feb 2022 at 16:09
Best of luck and best wishes Chris 🙏🤞
User
Posted 14 Jun 2022 at 04:33
I’m still here friends, yesterday was chemo 6, a reduced dose, 130mg instead of 150mg, mg is what the nurse quoted, as it’s in solution of what I don’t know,

PSA has risen by 0.57 in three weeks, now 30.1

Next dose in another 3 weeks with my 12weekly Zoladex Jab before.

Chris.

User
Posted 14 Jun 2022 at 06:15
Hope you are not having to much grief from the chemo exbus. Keep the updates coming.
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 06:53
Been reading my letter from the Oncologist to the GP and it says I’m on “Palliative Chemotherapy”, so now we know.

Chris.

User
Posted 18 Jun 2022 at 14:12

hi Chris ,
I could be joining you on the P/Chemo
i was thinking that I was doing quite good with a low Psa for nearly 4 years after Chemo in 2017 I then came of the HT for a year for a break, Then in Jan 2022 My Psa went as high as 4,5 , they then put me back on HT my PSA dropped to 0.09 , I had a PSME PET a scan and a CT scan with contrast for reasons that would take too long explain ,
My cancer has now spread to all my spine my rib cage and my inner thighs , I am to have another PSMA PET/CT Scan then maybe Chemo,
so despite having a very low PSA for four years my cancer was in fact spreading 

Best Regards Chris
Barry

Edited by member 18 Jun 2022 at 17:01  | Reason: Not specified

User
Posted 18 Jun 2022 at 14:54
That is a shame, my Mets are hips/ pelvis, spine, sternum ribs and skull.

At least the Chemo has stopped most pains.

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 18 Jun 2022 at 17:19
Cheers Ray ,

I also forgot to add ,

Despite eating Breakfast, lunch and dinner,

i am losing weight

down from 11 st 7lb

now 10 st 9lb over a month

Regards Barry

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?

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

User
Posted 10 Jul 2023 at 17:06
See my updates under Stilboestrol.

Chris

User
Posted 06 Aug 2023 at 10:11
Just a quick update, for Hips and Pelvis pain relief I now have Fentanyl patches, they are working well.

I Stopped Stilboestrol because I was continually sicking them back up! Also retching when I put my dentures in, but I now have an Anaesthetic Spray that solves that.

Bloods on Wednesday and I’ll post results as soon as I know, and Onco telephone chat next week.

Chris.

User
Posted 11 Aug 2023 at 22:50

Latest news, this week I’ve had a Mammogram and Ultrasound on breast, results are M2, U2 Benign but do monthly checks for any change.
Bloods on Wednesday, I’ve not had my normal Printout yet BUT I was at the GP this afternoon and just before leaving I asked if he knew what the Oncology Blood Test result was for the PSA, a RISE from 51 to 183 in 15 weeks!

(If the printout says different then I will correct the figure)

So I shall ask Onco on Monday what is next, if anything!

Chris.

Edited by member 12 Aug 2023 at 05:29  | Reason: Not specified

User
Posted 12 Aug 2023 at 11:56

Thanks for the updates Chris. Nearly 20 years since you were diagnosed, though I can see they haven't all been easy.

Dave

User
Posted 13 Aug 2023 at 01:36

Hope you can get some information about further treatment on Monday Chris. You’ve done amazing over all these years and hopefully this will be the case for many more to come.

Wishing you all the very best x

 
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