Early chemotherapy or not?

Lyn - I wondered if you could share your opinion as to whether you’d recommend early chemotherapy or Enzalutamide or Apalutamide as a first line treatment for advanced prostate cancer?  When you said above “ This is likely to be a temporary concession so I would push for enza or apa now if you can get it, and chemo now if enza isn't available to you. ”

Appreciate any views from others here too. 

Thanks in advance. 

Hi Matthew

I have to try and make my mind up at tomorrow's oncologist meeting. My second opinion is being discussed today at the Royal Marsden - I'm hoping they can send something over this afternoon!!! Fingers crossed.

My head is a little different to yours at the moment, but I may be swayed tomorrow. I dread the side effects and possible ongoing disability from the chemo and don't much like the hot flushes I get every 30 to 40 minutes.  I'm pain free and living almost a normal life at the moment ( although much more tired). The idea of injuring myself with chemo at the moment seems illogical.

I'm possibly going to ask for a surgical castration, so I can dump the prostap, and go for the apalutamide. The oncologist also wants to do some single dose radio therapy on my worst Mets (femur and L1 spine) on Monday.

That's my thoughts at the moment, who knows where I'll be by tomorrow night!

Chris - having read up on your incredible journey when I first joined this forum and reading your many constructive comments since, I marvel at your brave decision making. Your focus on QOL has been a success story in many ways. 

John - your principles and focus on QOL are equally impressive. Did you get your second opinion ahead of your Oncology appointment today? Radiating your two prominent mets on Monday shows your clinical teams is doing all it can. Pretty cool. Surgical castration is still a good alternative for sure, perhaps you might share the fors/againsts from your perspective. Also, if its okay to ask, what do you mean about possible longer term issues from chemo? My understanding is the side affects from early chemo are ordinarily limited to the period of treatment ie little probability of longer term side affects. Yes it’s a horrid toxic mix but if it’s a proven first line treatment that potentially can extend lifespan without threatening QOL in the medium term, I figure it’ll be worthwhile especially as I’m pretty young and fit. 

Even now I’m in two or three minds. I’d be very interested in hearing your second opinion. Good luck today…big decisions loom :)

All the best chaps!

Dear Ann - I’m very sorry your husband and you find yourself here. It’s an uncertain journey but rest assured there’s good reason to be positive despite the traumatic diagnosis. It must have been an awful shock to be told he’s moved to stage 4. Many of us here and our loved ones understand your worry and heartbreak.

As you learn more, accept expert clinical care and support each other you will both grow in resolve and hope. It’ll sometimes seem an impossibility especially in the early days but you will find your new normal. My family and I are getting there slowly but surely. 

When your oncologist has the biopsy histology and scan results etc, you’ll be able to take treatment decisions. The waiting is horrendous I know.

As you’ll have read in this and other conversations, there are a few viable treatment routes. We live in scientifically enlightened times where novel innovations are constantly being introduced and proven treatments are available. Of course, each situation is unique and whilst we can share our thinking from personal experience - remember we’re not clinicians - the most important source of knowledge will come from your care team. 

There are many wonderful people in this forum who’ll support you! 

Take care, 

Matthew

Hope this finds you well.

Update from me day 2 post Docataxel  chemotherapy cycle 1 of 6. 

No discernible side effects other than day 1 I felt a mild Ready Brek glow sensation a bit like a raised internal nuclear reactor and slightly increased breathlessness. They went overnight and today I caught up with some work, walked a brisk 3 miles and 30 minutes in our gym. Preparing for work related video conferences this afternoon. Pleasantly surprised given I was warned to expect a handful of side effects but  especially fatigue and sickness/nausea. I realise it’s early days yet and this treatment can be cumulative in nature. 

At DX my PSA was 61, following Zoladex injection in just 2-3 weeks it went to 4.3. A month later (last Thursday) it dropped to 0.67 so it’s heading in the right direction thankfully. 

Hope to hear how things are going for you all, as ever. 

Matthew 

Very kind of you Ido4. 

Reading you bio I can see your epic journey to date. How are you since your last low PSA reading in January?

Thanks again, be well. 

Hi Matthew and everyone

Glad to hear your chemo ok so far - good luck.  I just couldn't justify chemo for myself as I was too worried about potential side effects and QoL issues. So I'm going for apalutamide and chemo can wait until another day!  On a radical approach, I'm also going for orchidectomy at the end of the month.  Been hating the side effects of the prostap, so at least I can dump this before the apalutamide starts.  I understand surgery has less side effects and long term complications than HT. Plus I hate having all these drugs in my system. So one out one in!

I also had some single dose RT on my leg and spine mets yesterday. Had some very strange side effects that I hadn't been warned about - was sick, had bad pins and needles in both legs until about 11pm and felt very cold! However, all fine this morning - just hope they haven't damaged my spinal cord! 😱

I sometimes wonder how much of cancer sufferers decline is caused by the treatments!

Royal Marsden second opinion came through. Simple letter with no real alternatives to what I'm doing, other than possibly giving RT to prostate in time. Glad I didn't pay for the opinion!

Continuing to try and live in denial - but also educating the school children I teach about cancer.  Their latest fascination is watching the sweat run off me during hot flushes! 🤣

Good morning @Forest John and everyone!

Firstly, thanks everyone for your comments, questions and ideas. It’s really helpful when trying to figure out which route to take or questions to ask the experts. 

John, you’ve stuck to your guns on QoL and chemo / hormone toxicity admirably. Saying goodbye to your guns this month is a perfectly rational move which remains an option I need to discuss at my next appointment. It’s a compelling choice. Very interested to hear how that goes for you. 

Hope the effects of your radiotherapy completely go. It’s unnerving when strange side effects turn up. Anything close to the old spine is a worry. My biggest met is dug in my T5 vertebrae so will have to watch for growth and possible spinal compression one day. 

My second treatment route would have been yours exactly. And I may still take the surgical castration path. Brings tears to my eyes! 

As for my day 6 into cycle 1 of the trusted Docataxel chemotherapy I’m doing fine. I suffered terrible acid reflux from the steroids (which I was forewarned about to be fair) but the hospital prescribed some wonder pills that sorted me out within 24 hours or so. The increased aches and pains are being managed pretty well by painkillers so all in all, feeling mostly good. Avoiding anything significant so far. 

It’s really good to hear from you John and others here, the perspective and knowledge sharing is really helpful. 

PS: Keep on teaching the next generation with y our typical humour, I bet you’re loved and appreciated more than you know by students, parents and colleagues 

Hi Matthew

Yes, comparing our treatments will be interesting.  However, from all my research there appears to be no right treatment answer. Each of the various options might work for a few months or years and they all come with a range of nasty side effects! All depends on how your specific body reacts.

The chemo scared me as I said, especially the fact that I would need all the other drugs to tolerate it/help it work - steroids, anti sickness drugs, antibiotics, red blood cell promoters, pain killers, etc. You'd be rattling!

I'll probably be regretting my decision in time, but you take your chances and hope.

Yes, kids think I'm a nutter most of the time! 🤣🤣.  Lot's of lovely comments coming from parents.