Hi everyone,
My Dad had his first appointment with his oncologist on Tuesday and all things considered, following a full body MRI, it was good news in that there’s no further spread than what we knew about already - so it's "contained" to his pelvic area.
The onco has given the option of chemo or enza. While we went into the appointment fairly certain we’d choose enza, the onco recommended chemo given that my Dad is fit and otherwise in good health, so we're now in two minds.
With regards to Covid, treatment will be at Mount Vernon, and contrary to what was expected they haven’t noticed their chemo patients being particularly susceptible to the virus.
There’s undoubtedly more research on early chemo, but early enza is producing great results in recent clinical trials. We’re torn between following the recommendation of the onco, and taking what feels like a risk with enza - all whilst acutely aware that we may look back wondering “what if”.
Interested to hear your thoughts / experiences on either / both!
Edited by member 24 Dec 2020 at 12:26
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~ Life's roughest storms prove the strength of our anchors. |
User
Hello Sonia,
I think the main consideration is that chemo can have some permanent side effects, such as peripheral neuropathy, and others (I'm not expert on chemo, someone else can fill in details).
Enzalutamide doesn't have this effect, and the STAMPEDE trial showed it was at least as good as chemo. It is vastly more expensive than chemo, but you shouldn't factor that in - access to it at this stage is a special measure during COVID only, because it would normally be considered too expensive. Once on it, you will stay on it even after COVID. I think most people would leap at the offer of Enzalutamide rather than chemo.
I notice in some other countries, Enzalutamide is now given with the injectable (GnRH) hormone therapies in many cases where it isn't here.
Some people can't handle Enzalutamide in which case you would be switched to Abiraterone, and I'm sure they'd let you switch to chemo if you wanted to.
User
Hi Andy,
Thank you for your reply, very helpful! I’ll have a look into the potential side effects of each. The onco did play the side effects of chemo down somewhat, only really mentioning hair thinning and a tingling sensation in extremities.
I’ve also noticed that enza is offered early, in conjunction with HT, in America for example.
A worry I have is using too many of the weapons in our arsenal too early on, so to speak. I suppose there’s some comfort in chemo in terms of knowing what to expect to an extent, and there’s a bit of fear of the unknown with enza given that it hasn’t yet been looked at beyond a 5-year period (from what I’ve read).
I’ve also seen some research that suggests that if someone were to have chemo and then enza, they’d experience more toxicity than they would’ve had they not had chemo beforehand.
Edited by member 24 Dec 2020 at 12:26
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~ Life's roughest storms prove the strength of our anchors. |
User
~ Life's roughest storms prove the strength of our anchors. |
User
Hi Sonia,
I was offered Enzalutamide and my profile and DX is similar (although PSA was much higher, see my profile). I am now on my second cycle and tolerating it pretty well. Other than hot flushes and muscle ache/pains which I manage with Sage tablets and a weighted blanket I am tolerating the HT and Enza better than I thought. I exercise as much as I possibly can as that seems to help a great deal.
Cheers
Jay
User
Hi Jay,
Thank you for sharing your experience so far! It looks like you're 2 months ahead of my Dad (though there's been no mention of RT for him yet).
It's great to hear that you're managing better than you'd expected :)
~ Life's roughest storms prove the strength of our anchors. |
User
Most oncos wouldn't offer radical RT to a man with M1 N1
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
I’ve had a few thoughts about this, after reading a number threads on how similar diagnoses are approached in America. It seems early treatment is much more aggressive there, to include prostatectomies and RT (though I do wonder what they’re targeting if HT is shrinking the PCa, unless it’s the prostate in general). The Atlanta trial at Imperial offers the following options for those with metastatic PCa: surgery, RT, ablation therapy - I would’ve thought there’d be other research backing up the advantages of using these to allow this trial to go ahead. Given that Enzalutamide/Abiraterone were being held back due to cost till Covid, it does make me wonder if the NHS is holding back on other treatments because of the accompanying costs rather than the potential benefits they may offer. I don’t mean to sound so skeptical, but when a family member receives what we’re told is an incurable diagnosis (one that I believe could’ve been detected years earlier along with my Dad’s regular blood tests if someone had just thought to tick the PSA box), it does make you question everything else along the way.
~ Life's roughest storms prove the strength of our anchors. |
User
Hi Sonia,
I have just started my 3rd cycle of Enzo and other than the PSA my DX was very similar to your dads. I have one bone met on my pelvic bone and one lymph node is affected. I am tolerating the Enzo pretty well and it is having the desired effect of bringing my PSA and Testosterone levels down in conjunction with the 3 monthly Decapeptyl injections. I was fatigued in my first cycle but counteracted that with plenty of walking and exercise early on in the day when I seem to have a lot more energy. I must admit now having the experience of being on Enzo if I was given the choice at the beginning I would have gone down this route as it hasn't really affected me on a daily basis a great deal. I guess each person is different but I am tolerating it pretty well. I have kept my bio updated so its worth a peek.
Thanks
Jay
User
Thank you for your response, Jay!
My Dad's doing equally as well on Enza, in fact he says he feels he's got more energy than he did before! He's still having to go to the loo 3 times a night which disrupts his sleep, but said flow has improved recently. He seemed to have a short-lived hot flash a few weeks ago but that appears to have been a one-off. I believe, as many others on here, that a good diet and regular exercise really do go a long way to ward off the side effects.
Really good to see you doing well, with my Dad not too far behind you on this journey :)
~ Life's roughest storms prove the strength of our anchors. |
User
@Jay, this article may be of interest to you: https://prostatecanceruk.org/about-us/news-and-views/2021/1/bone-scans-to-identify-who-can-benefit-from-radiotherapy
I'm going to ask my Dad's onco about this as I reckon he'd benefit from the same.
~ Life's roughest storms prove the strength of our anchors. |
User
Hi Sonia,
Thanks for the link. My onco has advised 37 sessions of radiotherapy over 7 and a half weeks as I only have one localised pelvis bone met and one lymph node involved. Radiation treatment will be given to prostate, lymph node and pelvis and will start 6 months after my first Decapeptyl injection which is end of March early April. I am guessing my onco was either involved in this study or was at least aware of the outcome of the study. :)
I think it is definitely worth pointing your dads onco in the direction of this article.
regards
Jay
Edited by member 21 Jan 2021 at 10:18
| Reason: Not specified
User
Hi Jay,
Dad's onco said she wouldn't consider him for RT at present as he has more than 5 deposits. She's prescribed Enzalutamide for 12 weeks, said we'll see how he continues to get on with it, book him in for a scan and look into RT at that point. Given that his PSA is now 0.7 from 8.8 2.5 months ago, we're happy with this plan.
I hope you and yours are keeping well and safe!
Edited by member 25 Jan 2021 at 11:40
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~ Life's roughest storms prove the strength of our anchors. |
User
Hi Sonia,
Recent research suggests that RT to the prostate and (possibly to the metastatic sites, which should be possible in your dad's case) increases the survival in "low burden" metastatic disease. I also just listen to a talk on the podcast "Uromigos" SBRT in oligometastatic (just a few metastasis like your dad's) can even be curative in 30% of the cases. You can refer to this article:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6526359/
User
Hi vnvn,
Thank you for this information :)
I believe low burden is defined as less than 5 deposits, unfortunately my Dad has more than this number at present. His onco's said she'll consider RT in a few months, once the hormone therapy has had more time to take effect. Hopefully some of the deposits will have disappeared by then!
~ Life's roughest storms prove the strength of our anchors. |