That was not in the plan.

User

Posted 28 Apr 2025 at 11:26

You have been an inspiration to others over those 11 years Chris. You certainly have to me over the last four years. I wish you the best of fortunes going forwards. Chris

User

Posted 28 Apr 2025 at 13:38

Keep at it Chris...

User

Posted 28 Apr 2025 at 17:18

Chris you’ve been an utter rock to me especially in the early days. June sees in my 58th birthday and ten years from removal and 11 years from diagnosis. And mate 4 1/2 years of Decapeptyl , although it is starting to fail now. All the very best to you and as good luck as I’ve had. I’m gunning for you Chris

User

Posted 28 Apr 2025 at 19:05

Despite your own health problems , you always find to time to help others with theirs. You're a top bloke Chris. 👍

User

Posted 28 Apr 2025 at 19:53

Originally Posted by: Online Community Member

Despite your own health problems , you always find to time to help others with theirs. You're a top bloke Chris. 👍

Top bloke indeed. You helped me so much in my early days of self catheterisation. You are the catherter expert on this site. Just so sorry about how you became the expert. Can't thank you enough.

Good luck with your treatment going forward.

Thanks again

Cheers

Bill

Edited by member 28 Apr 2025 at 21:37 | Reason: Not specified

User

Posted 28 Apr 2025 at 23:54

Thank you all, very kind of you and thank you for all the support you give me and all the rest of us on here.

I see a different oncologist next week and we will see what additional medication I will start , Abiraterone and prednisolone was the plan.

CJ, how have you got in with the Decapeptyl. I struggle to sleep at night, yet can fall asleep during the day. I certainly don't have fatigue but strength and stamina is definitely suffering, but that may be an age thing.I am feeling a bit down, but I am less anxious about recurring issues that used to bother me, (like wife and daughter falling out).

Biggest problem is Brain fog, the short term memory is particularly bad. A couple of examples, I pick up the mobile phone to check for an Amazon delivery, but when I open the phone I get distracted by a face book message, then I can't remember why I picked the phone up. This morning I was cleaning my teeth,and thought I need to blow my nose, after cleaning my teeth, I stood there and thought "what was I going to do". These sort of things happen numerous times during the day.

Sorry your meds are starting to fail, at least you gave it a good go.Take care.

Adrian, great work you are doing in the virtual pub.

Thanks Chris

User

Posted 29 Apr 2025 at 06:05

Chris I think Deca is one of the kinder ones if that’s possible. Some side effects were rapid and others have just worsened with the years. Joint pain in my legs and knees has been quite tragic tbh. The worse effect for me. Recently creeping into hands and thumbs. Brain fog is terrible so it’s not just your age. I get confused about stuff like simple arithmetic now.

The fatigue took longest to kick in. Week by week I seem to need a day nap which has been unheard of my entire life.

And sleep has always been an issue in my life. I take red wine for that disorder 🤣.

Weight gain has been extremely minimal in this period.

Keep it up Chris , and yes you become a way more chilled person about everything. It helped me !!

User

Posted 08 May 2025 at 21:27

Hi guys, after the ongoing saga of shared care and not mixing private health care with the NHS , I saw a different oncologist today.

After a lengthy consultation, I start apalutamide tomorrow. I also will continue the 3 monthly decapeptyl.

So my GP has saved a few quid and cost the NHS thousands for the drugs.

Thanks Chris

Edited by member 08 May 2025 at 21:28 | Reason: Not specified

User

Posted 09 May 2025 at 05:29

I went off to bed last night with my apalutamide and started to read the leaflet. The are some serious 1 in 10 side effects. So it started me wondering, I have to take 4 tablets at the same time. Did anyone start with 1,2 or 3 tablets and build up to the full dose, or did you go straight in for the full four tablets. Just wondering if it was better to ease into the tablets. Is there a better time of day to take them.

The oncology nurse present at the consultation, said I could delay taking them until we return from a short break in the UK. Does it also make sense to wait for the precautionary blood test results to come back.

I will have a chat with my nurse or the site's nurses but just interested in your thoughts.

Thanks Chris

User

Posted 09 May 2025 at 07:57

I might have missed it but why the change from Abi to Apalutimide? Is that modern thinking from the new Onco?

If your trip is imminent I am sure the drugs can wait as you are already on a hormone blockade.

User

Posted 09 May 2025 at 13:13

Franci , I was getting a bit frustrated with the private care setup and lack of a support network. The oncologist was fine, apart his attitude to me wanting PSA tests at what I consider relevant events. I wanted a test before I started the injections but it wasn't forthcoming coming so I got around it a different way. As it turned out my PSA had gone from 6.7 to 13.4. Not sure all my messages were getting through.

Combined with my GP throwing a wobbly at the consultants sarcastic letter and my GP saying any cancer issues were not their problem while I was under private care,I asked for a referral back on the NHS, even then there was an issue with the private /NHS secretary.

So I saw the new but very wise and experienced oncologist yesterday. As I half expected Abiraterone is not available to me on the NHS, I don't quite meet the criteria. I asked what was better Abiraterone privately or apalutamide on the NHS, he said there was little to choose between them in my situation.

There is a big difference between private and NHS as regards appointments and setting, but the NHS does offer a better support network. The downside of the NHS is no free tea and biscuits no free parking and a longer wait in the waiting room. The only downside of yesterday we got a £25 parking notice, long story and we are appealing.

Thanks Chris

User

Posted 09 May 2025 at 15:24

Thanks Chris, Apalutimide is a lot newer than Abi and it's trials seem universally good. Fingers crossed for a less than next time!

User

Posted 09 May 2025 at 15:38

Hi I think your GP saying they do not work with private care is very strange. My husband is under a urologist privately at the Royal Marsden which is about 45 mins away on public transport. We however wanted PSA testing undertaken at our local hospital and our consultant wrote to the GP who facilitates this three monthly as well as any routine prescription suggested by the consultant. It has been seamless. Oh and the GP undertook a well being appointment following surgery.

Edited by member 09 May 2025 at 15:41 | Reason: Not specified

User

Posted 09 May 2025 at 16:18

Franci, the PSA dropped to 0.89 a month after the zoladex and yesterday it was 0.3, that is 11 weeks after the first injection.

IDK2, everyone I speak to thinks the attitude of our GP surgery is disgusting or unbelievable. If you look at the shared care agreement it does say the care should be separate and that patients should be warned that all costs should be met by the patient.

Thanks Chris

User

Posted 10 May 2025 at 05:59

Hi.

I'm not sure I'm in the right place here but...anyway.

I'm 49....healthy guy....gym goer....but a recovering alcoholic.

I've been on NHS Testosterone Replacement Therapy for over 3 years and get my PSA checked every year.

It's jumped from 1.9 to 4.0 and now at 5.6

I had an MRI 2 weeks and results in 3 days. I've been feeling rotten for a while now....groin ache and leg spasms. Mucus in my stools and eractic peeing.

Should I fear the worst?

Thanks

User

Posted 10 May 2025 at 06:54

Mike,

there could be other reasons for your high psa, such an an infection or an enlarged prostate. Generally speaking prostate cancer doesn't cause noticeable symptoms, like your leg spasms or feeling rotten, so until you have more test results, you won't know.

Jules

User

Posted 24 May 2025 at 11:03

Hi guys, I had a zoladex injection in Feb 2025, I swapped to decapeptyl three monthly injections in March 2025, next decapeptyl is mid June. I started apalutamide a week ago. Also started vitamin D two weeks ago. I have had a hip and knee problem for a number of years, osteoarthritis in the hip and a trapped nerve in the shoulder.

The last week pain in all those areas has increased and I woke up this morning with pain in the shin and upper jaw joint, and a slight pain in the other shoulder joint. I do have a bone density scan on the 9th June.

Has anyone had a similar experience of bone pain so soon after starting similar meds.

Thanks Chris

User

Posted 24 May 2025 at 23:54

Check out Hieronymus, he was having these issues...

Notification

Join the online community now.