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Journey just beginning

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User
Posted 16 Sep 2023 at 19:11

Chemo 5 done, PSA now below 0.5, recovered after 4 days feeling rough so all good. One more to go, then scans in October to prep for radiotherapy! Looking forward to having Chemo behind me, although it was not anywhere near as bad as expected (so far!). Onwards and upwards! D

User
Posted 16 Sep 2023 at 19:35

Great News….stay strong and good luck with RT. I found it a breeze compared to HT.

Derek

User
Posted 16 Sep 2023 at 21:35

Good stuff! The way to go! I’m just a few weeks behind you, just completed Chemo 3 and down to PSA 0.79. Onwards and upwards, let’s beat it!!

Spongebob

 

User
Posted 16 Sep 2023 at 23:53

I think you mean onwards and downwards SpongeBob?😊

User
Posted 17 Sep 2023 at 19:22
Ha ha - yes, you’re right - Onwards and PSA downwards! 😬
User
Posted 01 Oct 2023 at 17:24
Hi all, so Chemo 6 now finally done and as before I have been swiped sideways mid way through Saturday after being treated Thursday afternoon. Nothing unusual, just all my energy gone and replaced with a red flushed face and neck lol. But the key thing is chemo now done and on to the next bridge! Scans over next two weeks, bone, MRI, CT to see what effect the chemo has had. Then Oncologist in 4 weeks to plan radiotherapy! In the meantime am going to enjoy getting better from this chemo, knowing I dont have another one as soon as I feel better lol.

In summary, chemo not great, but much more managable than I had expected. If I can sail through it with just some choppy waves, so can the next guys following on so take heart! And dont forget chocolates for the nurses when done!

Cheers, David

User
Posted 02 Oct 2023 at 21:05
Excellent 👍 Well done David. It will be interesting to find out the impact of the chemo on the cancer, please update us.

Thanks

SpongeBob

User
Posted 03 Oct 2023 at 06:32

Will do SpongBob. Two scans this week and one next week, will also be interesting to see if bone density impacted by the hormone therapy. Oncologist meeting in three weeks, will find out then and report back! In meantime, God luck with your next chemo sessions. D

User
Posted 26 Oct 2023 at 07:33

So time for another update, and a photo change in honour of finishing chemo! This journey is one of ups and downs, which you have to try to ride with as best you can. Saw my Oncologist yesterday for a review of the scans taken after my chemo sessions. The prostate cancer has responded well and hormone therapy is keeping my PSA below 0.5 which is amazing. But the CT scan picked up that I have an abnormality in the wall of my esophagus and now I have to go for an endoscope (camera down the throat) and biopsies of the abnormal area. Not prostate cancer for such, but could be another "variety" at work! I hope and pray not, but within a couple of weeks we will know what extra challenge (if any) we are dealing with. A massive blow to my positive outlook initially, but have bounced back today. If good news great, if bad then we will face it together!  My wife as always being totally brilliant and right there with me! So what to learn from this? There will be worries and set backs for many of us along this journey, but staying positive is so important. Cancer loves misery! I will continue to focus of making every day a good one and continue to plan optimistically for a long future! New job interview tomorrow, so focusing on doing great and getting offered the new opportunity! Keep your heads up guys/ladies and focus on a bright future, we can beat this! Best wishes to all, David

Edited by member 26 Oct 2023 at 07:34  | Reason: Not specified

User
Posted 26 Oct 2023 at 08:28

Hi David,

Your attitude is spot on. It’s so important to remain positive when going through this jourdeal! It really sounds like you’ve cracked it, and  all the support you’re getting helps enormously.

I hope it’s GOOD news for you in all respects and wish you all the best for the future no matter what.

Derek

User
Posted 26 Oct 2023 at 09:17

Good luck David, seems to be never ending having cameras, probes, piccs, and soon to be radio-bombs and rays etc bunged inside us whilst we continue to be up to the hilt in meds causing all kinds of hot flushes, puppy fat and shrivelled up bits - all good fun, well an experience anyway let’s say. Fingers crossed that everyone knows what they are doing and that it all works out well in the end. Excellent result for you on the PSA. And good luck with the job, you’ve more resolve for working than me, I’ve given up trying for s new role whilst going through this. (If you do want a laugh, my missus is on tv tonight (Bake off extra slice at 8pm), she’ll be the one with a cake featuring a ferret and expects to be suitably very embarrassed.) Keep your chin up!

chers

Spongebob

User
Posted 26 Oct 2023 at 09:41

Hi David

Stay positive mate. My younger brother has oesophageal cancer (we're quite well versed in my family - my mum has bowel cancer and I am in this exclusive club, as was my dad) and he has had chemo and then surgery to remove it. They are happy that they got rid of it all so he should be on the road to recovery now. Rest assured that IF they do find anything amiss in that area, they can deal with it.

All the best.

Ian.

User
Posted 29 Oct 2023 at 19:41

Thanks Derek, both for your rapid reply and your endorsement! Will update when i get news of the biopsy results! In the meantime, new job and new learning challenges ahead! David

User
Posted 29 Oct 2023 at 19:48

Hi SpongeBob,

Well done, you cracked me up with the shrivelled up bits comment, spot on lol!! Still, i can put up with all the side effects if it keeps the PSA down! Hot flushes are a right pain though! Acupuncture and reflexology helped, but wore off after a couple of weeks! 

Also thx to Ian, let's hope it is not another cancer but good to know it should be treatable if the news is negative! Still, hoping for the best!! 

Cheers all, have a great week.

David

User
Posted 18 Dec 2023 at 21:43
Quick update. After a bit of a pause, am now on my way with the Radiotherapy. First session done and all is well. Long may that continue! David
User
Posted 08 Jan 2024 at 19:55
Another update, Radiotherapy now well underway and just 7 more sessions to go! I have to say, i thought this would be a breeze but I was wrong! Radiotherapy does not hurt and the side effects are bearable, but I did not bargain for the bladder pain caused by having to be full before your pictures and treatment start! Totally unpredictable, whether you are going to fly through with minor discomfort, or end up in too much pain and having to bottle out of the process on the table and start all over again! Wow! One tip, take paracetamol just after water loading, it helps a little with the discomfort/bladder pain! Other side effects, mild neusea, discomfort getting started with wee, bladder feeling like a punch bag (after water loading), upset tummy (sudden and urgent) and wind! But take heart, you get through the days quickly and soon mine will be over! Yay! Hope all readers managed to have a great Christmas and New Year. Wishing you all the best news in 2024! We got this!! David
User
Posted 08 Jan 2024 at 20:04
oh, and one other update, throat scare looking good. They think it is just swelling caused by acid reflux. More tablets and another endoscopy check next week.
User
Posted 08 Jan 2024 at 22:31
Hi David,

Timely update, as I’ve just been in today for my planning scan with my 20 sessions due to start on 22/01. Amazing how nonchalantly we can get used to messing about with enemas and parading about in hospital gowns that show of the bare backside etc.

Many Thanks for your tips and I’m glad to hear that all is going good and that you are on the home straight 👍😁

Cheers

Spongebob

User
Posted 09 Jan 2024 at 12:02

Hi Kerm

I know the problem with needing a full bladder!

When the radiographer noticed me wriggling about and fairly desperate, she told me to let a little bit out and she will check if you are still full enough with an ultrasound scan. Much relief!!

Peternigel

User
Posted 14 Jan 2024 at 17:23
Thx for you notes guys, good luck Sponge! One extra bit of advice, one of the radiographers suggested ibuprofen might help with the swelling and so now I take two 200mg ibuprofen tablets on waking and one paracetamol once water loading has finished. For me it takes the edge off the bladder discomfort once you are on the table! Three more to go for me! And one orher thing, with the hydrating requirements of Radiotherapy, i stopped having tea, coffee amd alcohol. My hot flushes consequently are much reduced in frequency and intensity! D
User
Posted 14 Jan 2024 at 17:31

3 more to go and counting David…the last one can be quite emotional, well for me anyway🥲🥲

Hope it goes  well and you can start to get your life back….well as much as HT will allow you to anyway😊

All the best,

Derek

User
Posted 17 Jan 2024 at 20:09
Decided to "Go Public" now my treatment is done on Linked In, in the hope that it may save some lives! If you are interested in what I wrote about this last year after diagnosis, follow this link!

https://www.linkedin.com/posts/davidjarpayne_my-secret-2023-today-i-walked-out-of-the-activity-7153472001569882114-38Et?utm_source=share&utm_medium=member_android

You will probably have to copy and paste into your browser. Cheers, David

User
Posted 17 Jan 2024 at 21:13
Hi David,

Well done, a good move and a good read. I went public on LinkedIn and found reading all the comments from my ex-colleagues really comforting. And importantly, it helped to spread the message to get checked out.

Best wishes for the future, make the most of it. 😬

SpongeBob.

User
Posted 22 Jan 2024 at 08:09
Another day, another symptom!.This may just be me, but my finger print that I use for authentication at work,.accessing my bank account etc has vanished! It no longer works on any of my devices. Weird!! Lol
User
Posted 22 Jan 2024 at 09:10

Take your gloves off! 😉

Joking apart mate, apparently according to Google moisturising your finger tips might help. 

Edited by member 22 Jan 2024 at 10:06  | Reason: Not specified

User
Posted 13 Mar 2024 at 06:11

So we are now in mid March, nearly two months after finishing Radiotherapy. Still not seen my Oncologist to review the impact of treatment, but the Pearl's trial people keep in touch regularly (I was in the control group). Symptoms much better, rectum discomfort gone and just left with some bladder discomfort and some retention but not bad. Feels odd to have gone nearly two months without a trip to hospital!! Almost like I fell off the end of the production line. Last psa around 0.06 so all good there. Fingers firmly crossed that all the treatments have done their job!! Keep having to remind myself to enjoy the feeling of no treatment scheduled!! 🤣 Stay positive out there, makes all the difference!! David

User
Posted 13 Mar 2024 at 08:16

Hi David,

Thanks for the update, I had to wait 3 months following my RT to get a PSA test and see my Onco. Mine was 0.3 after that then fell to 0.1, 3 months later. Your PSA is already very low, I wonder how much further it will drop🤔🤔🤔mine obviously only test to 1 decimal point and my next test is 2nd April…so just hoping🤞🤞🤞

I agree Staying positive IS SO important …I’m positive about the PCa, it’s just the side effects of ADT that have got to me😩

Derek

User
Posted 13 Mar 2024 at 16:24

Hi David,
Yes, it seems weird to me too having finished my radiation there seems to be a kind of void. I had a phone appointment with the oncologist last Friday (approx 3 weeks after Radiation), this seemed to be a well-being call to check that I was ok and not still suffering unduly from any after effects. She did say that that’s it really, no more scans, just ongoing monitoring via PSA tests. I have a test booked in at the local docs in April, my previous one was taken before my final chemo session in November when the reading was 0.34. 


Like Decho I’m not enjoying the effects of HT which seem to be getting worse, now hitting my joints especially my ankles which were flakey anyway due to too much footy. Still I feel lucky, very lucky actually that I got myself checked for PCa when I did, looking forwards now, not back.

All the Best David,

Cheers

SpongeBob

 
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