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Treatment for Recurrence

User
Posted 02 Jun 2024 at 10:15

Hello all, I'm looking for some advice, info or experiences relevant to treatment following recurrence. All contributions very gratefully received to help me decide. I'm just approaching my 68th birthday in July and am otherwise healthy.

First diagnosed July 2016, T3aN0M0, Gleeson 8, PSA 4.3 - treatment Radical Radiotherapy completed Dec 2016 and 7 months HT. Routine PSA tests only thereafter.

January 2024, PSA 2.1 after slow rise over 2 years from 0.5 in January 2022. Referred back to hospital, had MRI (inconclusive) then PSMA PET April 2024. Result multiple involved lymph nodes in iliac chain - 3 nodes in right external chain showing SUVs up to 11.1, two smaller right common nodes showing low-grade uptake and a tiny left common node showing SUV 1.7. No left side uptake demonstrated. 

I have no symptoms at all and am totally unaware physically of the problem.

Treatments put forward by consultant:

1. HT alone with potential survival beyond 5 years. Other treatments available in future on progression provided I remain fit enough for them at the time.

2. "Standard of care treatment" HT plus docetaxel chemo. Addition of docetaxel alone improves average survival by 12-18 months .

3. HT plus docetaxel plus darolutamide - aka triple treatment. Trials indicate further survival benefit of 6-12 months.

After any of these there are other treatments to use, and no doubt there will be more available in future.

My own thoughts:

Option 1 - HT only is the least invasive with fewer immediate side effects but least effective although further treatnments available later (provided I remain fit enough to have them at the time).

Option 2 - sits somewhere between 1 and 2 in terms of benefits and side effects.

Option 3 - triple treatment likely to be most effective for longest period of time without further intervention though side effects during treatment and recovery from it.

I'm inclined to go for triple treatment and hopefully get it out of the way, hopefully for some years, by sacrificing  forthcoming months to treatment side effects. However, I would very much appreciate the benefit of advice from all who know more about it than I do or have experience of the same.

Thank you very much.

User
Posted 02 Jun 2024 at 16:17

Hi Yorkist,

This is a difficult one for me to answer but will bump you up in the hope that those that have been through this might be able to offer advice. I’m wondering how you tolerated HT the last time? I note it was only for 7 months which seems quite a short time to me. I’ve been on it 2 years and am stopping early because of the side effects on my QOL…my Onco is happy for me to do this as PSA now undetectable. I am also 67. It was only diagnosed in 2022 and am quite interested in this as it’s always at the back of my mind that I might be in your position sometime in the future, but fingers crossed🤞

Some people tolerate HT well, others like me suffer, but I’m not sure if there’s any correlation between this and how people tolerate the other treatments you talk about.

I wish you all the best whatever you decide.

Derek

User
Posted 02 Jun 2024 at 17:59
Thanks Derek.

I don't know why I was only on HT for 7 months, at the time Im knew little about it and assumed it was right. I did tolerate it reasonably well though, despite the short period.

Keep your fingers crossed, it's a bugger being in this position 8 years later - even more so when I feel perfectly well despite what the scan shows.

(another) Derek.

User
Posted 02 Jun 2024 at 20:27

We know that when some patients have surgery, lymph nodes are sometimes removed, also that many surgeons will not do Prostatectomy after RT as it's much more difficult and the chances of urinary incontinence are vastly increased. However, if there is no cancer left in a Prostate, it having been dealt with by radiation, I would have thought it might just be possible to surgically remove the affected lymph nodes if these are not widespread but not the Prostate if this is clear. I know that this has been done in the USA, dependant on number and whereabouts of nodes. Maybe additionally any distant ones could be also be radiated. I would ask, you might find somebody who would be prepared to do this. Better to treat directly if feasible.

Edited by member 02 Jun 2024 at 20:34  | Reason: spelling

Barry
User
Posted 03 Jun 2024 at 06:16
Thank you very much Barry, I'll ask the question.

Derek.

User
Posted 04 Jun 2024 at 16:18

HI Yorkist

I was diagnosed with a biochemical recurrence in 2018 after HT/RT in 2009/2010. When my PSA went to 12ng/ml in May 2021 I was restarted on Zoladex which reduced my PSA for a couple of years. Unfortunately by August last year it had risen again to 3.1 ng/ml and I was started on enzalutamide as well as continuing the ADT.  My PSA is again very low (0.07 ng/ml) . The combination of ADT and enzalutamide may be an option for you. I've been told that chemo most likely docetaxel is being reserved if my current treatment fails. I may by one of the lucky ones that I have only few and small side effects from my treatment.

Tom

User
Posted 06 Jun 2024 at 23:35
I'm with Barry, ask why the nodes can't be directly treated with RT or Surgery.
User
Posted 09 Aug 2024 at 13:20
Hi Yorkist,

I see you've gone with triple therapy. That's what I did starting in March 2024, I've just finished the last round of chemotherapy. I started a thread on what to expect from docetaxol which you may find helpful. Look up my recent posts to find it.

People seem to get different side effects. For me, the biggest issue has been fatigue. Probably the chemo plus the hot flushes from the hormone/darolutamide. I'm frequently up 4-6 times a night due to hot flushes/needing to pee, which means my sleep is shot and I operated at about 50% energy thru the 6 cycles of chemo. I'm 3 weeks after the last chemo now, and waiting to see if the fatigue improves - not so much as yet.

I'm on decapeptyl and darolutamide indefinitely. Docetaxol has finished.

Best wishes as you go thru the treatment.

Mike

User
Posted 11 Aug 2024 at 10:52

Many thanks Mike, I'll look up our posts and have a good read later today.

I've had a quick look this morning, and see you had a PICC line - I'd be interested in why you had thios fitted? For info, I've now had 2 infusions and am going for the 3rd on 14/08. The second was OK at the time but a few days later the veins in my hand went red and still are 10 days later. Maybe that is also a eeason for a PICC line for me? We'll see when I go in pn the 14th.

All the best, and thanks again,

Derek.

User
Posted 11 Aug 2024 at 21:44

This is the first time I’ve seen your thread. Your diagnosis is similar to DH’s. He had brachytherapy in 2015 PSA remained at 0.01 for 5 or 6 years before creeping up. Last summer he had an MRI nothing showed up. So he had a psma scan. By then psa was 4.9 

Scan showed mets in several lymph nodes in his chest and high up in abdomen. His prostate is cancer free still, so the mets must’ve been there all along. He was put onto zoladex around September last year. Then they added enzalutamide a couple of months later. PSA very quickly fell to 0.01 again. Where it has stayed ever since. 

User
Posted 13 Aug 2024 at 09:46

Hi Derek, 

Tbh I had forgotten about the PICC line option although seeing several friends with other cancers suffer from vein collapses after several rounds of chemo. A friend of mine mentioned PICC lines to me before I was about to start my first chemo, and I then raised it with the consultant, who passed the buck and said i should talk to the nurses in the chemo suite. Which I then did quite forcefully. They said, "let's see how the first one goes". During my first infusion in a vein with a cannula, my wrist went numb for 3 inches above and below the cannula site. Afterwards the nurse said "ok PICC line before the next infusion". 
I find its a bit of a lottery sometimes with procedures, depending on the protocol of your particular hospital. In the chemo suite I was in, probably 1/3 had PICC lines fitted, and 2/3 were cannula and try to find a vein each cycle. 
The PICC line fitting procedure takes about 2 hours form start to finish. Most of this is preparation, telling you what they will do, making a sterile environment and checking you are ok before you leave. Before the procedure itself I was a little nervous, but I've experienced more pain in the dentist chair when having a novacaine injection. 
Having had one cannula and 5 PICC line cycles, I would go for the PICC line every time. My thinking was partly, ease of infusion, and if I have to go through chemo again in the future, I want to preserve my veins from wearing out and collapsing during this bout of 6 cycles. 
The only downside was a slight skin reaction under the dressing they put over the PICC line. This happened the first dressing, but not any of the others. 
Cons: you cant swim or bath. You need a shower protector on your arm when you shower - £30 from Amazon although I was prescribed one. You need to get the dressing changed and the line flushed on a weekly basis. 
I felt I could live with this. 
I carried on with life as normal, dancing, mountain biking, so it didnt stop any of my preferred activities. 

I hope that  is useful. 

Mike

User
Posted 06 Sep 2024 at 23:14

Hi Mike

It took me 3 month's to fully get over the fatigue associated with the Chemo!

 
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