Finished chemotherapy - now just awaiting game

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Hi,

Some of you may know my journey,  after finding out of have stage four prostate cancer in december last year, I started triplet therapy and 3 weeks ago I had my last (6) chemotherapy session.

I just had my oncology appointment and my psa has decreased again to 0.2. This is good news. We are still hoping it will still go down further as the last reading was 0.35.

Its all heading in the right direction.

The oncologist is happy, and assured me that the treatment is working (originally psa 256) and that its now no more chemotherapy,  just the regular hormone jabs and daralutamide pills. They are not doing a scan to see if anything has changed, which i have asked for to which they say there is no point if the psa is as low as it is. He said the cancer has most probably shrunk, and is not growing. He said if they did a scan, it would be very hard to find where if any the cancer is apart from the prostate.  He said the cancer in the lymph nodes has probably gone.

It sounded positive, so it's a case of bloods once a month until told differently.

Im still not 100% convinced regarding not having the scan completed, so I have asked for a 2nd opinion by my gp to be referred to royal marsden. Maybe im clutching at straws, but i dont like the idea as they say treat not cure due to stage 4.

I will update you all every month but so far all in the right direction, other than my osteoporosis in my back which is giving me gyp lol

Keep fighting for another day

Gareth

  • Hello Gareth ( 

    A very positive post and another success story for triplet therapy which in the long term is a fairly new treatment. Thank you for taking the time to post and I wish you well moving forward with many more lower monthly PSA tests.

    It's not normal practice to rescan with such a low PSA (it's done in nearly every other cancer after chemotherapy but not prostate as it looks like the trust in a PSA test is universal).

    At 0.2 and decreasing nothing would show on a CT scan and on a PSMA-PET Scan which shows down to 0.2 there's about a 40% chance of finding something and your PSA is going down so by the time a test has been arranged your PSA may well be too low to show up anyway. (Oh perhaps saving £3K on the cost of the test had nothing to do with the refusal to test you!).

    I would be very happy with the outcome and you have a great team looking after you.

    Best wishes - Brian.

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    1. Thanks for the reassurance. I just need to get back to trying to living a normal life as best I can. Its my first day back at work today. Only a phased return so hopefully everything will be okay
  • Hi Gareth

    I too am on Triplet therapy and completed my last session of chemo on 22 May - such a relief but strange to be missing all of the interactions.

    My PSA plummeted and is now undetectable ( shall see what it is in 2 weeks though!!) after the treatment, but I continue on HT for life…

    My oncologist is keen to speak to me about RT at our next appointment in two weeks - he described the process as killing off the mothership and then the satellites will wither!  Different hospital different approach.

    The one thing about finishing chemo is tapering down of the steroids - I suspect that you have a list of how to do this over about 5 weeks? I wasn’t aware that this could affect me as much as it did - again fatigue was a big issue for me during the bit when taking very few steroids.  The body is being tricked into starting to make the natural ones again and it seems to take some effort!!

    I share your thoughts about another scan - I put it that it would be a useful baseline going forward after the chemo, but if I go down the RT route I will get another scan anyway…..

    All the very best with the recovery and the return to work

    KrisPy

  • Hi.

    I agree, its a different hospital different approach which is wirrd to me in itself but everyone's having different approaches depending on your condition I suppose. I have asked about RT but im not getting it unless im in pain later on, even though they did explain that the RT kills the cancer cells. This is why ive asked for a second opinion. I just dont get why everyone's path is different and it seems whatever I ask my oncologist,  im only on one route.

    Ive been told to drop a pill of my steroids just for a week. Then I dont need to take anymore. To be honest, ive not suffered withcany side affects or only very mild just have to wait and see I suppose.

    Many thanks for your reply x

  • Pleased to see your excellent progress, and it’s reassuring to me as a fellow stage 4 that great results can be achieved with the right cocktail of meds and treatment. I wasn’t offered chemo, just HT and I’m currently on my 5th of 6 weekly RTs that’s brought down my psa from 39.9 to 0.9 in less than 2 months, which I’ve been told is good.

    I also swear by the ‘miracle drug’ that Chris Hoy has just published an article on regarding fitness and diet. Like him I firmly believe this is equally as important to counter the effects of the meds and help keep the disease at bay for hopefully many years, even a decade or more to come. 

    Best wishes

    Gra

  • Thanks for posting this as I'm currently going in your direction, I have cycle 4 next Monday and had been wondering what will happen when I finish cycle 6.  I assumed they would do more scans but after reading your post maybe this won't happen.  My PSA was down to 0.8 after my last blood test, hopefully this will be even lower on my next blood test this Friday.  

  • Hello Gareth,

    I completed the chemo element of triplet therapy just coming up 2 years ago. I'm now on indefinite HT plus darolutamide maintenance and my PSA determined at 12 weekly intervals (plus loads of other blood results) thankfully remains undetectable.

    To my knowledge RT is not necessary in most triplet cases after chemo and will only be given if it's clinically necessary. I was happy I didn't need it and was relaxed that I didn't. I'm sure your PSA will continue to reduce until it's undetectable, just need to be patient. 

    All the best, Derek.

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  • Thanks Derek, iys reassuring that you are on the same trearment path and still doing well after a couple years down the line.

    Long may ot continue 

  • Well done on your low psa. Like you, mine came down sharply and then starts to slow down as i got closer to the end of the chemotherapy treatment. You will get to undetectable but will take a little longer after chemotherapy has stopped from what i have seen and read from other posts. By the looks of things, no more scans unless psa starts to rise on 3 secutive blood results but even then, I was told its not the whole picture as they look into other things as well as a raised psa could also be a UTI.

    Im starting to relax more from the posts ive written and read from others, this is a good site to ask questions and get feedback k from others in our situation but further down the line.

    All the best

    Gareth 

  • Gareth – that all sounds like good news, excellent news on the PSA but I completely understand your concerns about the scan.

    I was also told that a scan wouldn’t be happening, as apparently because it’s all in my bones, they didn’t feel it would be particularly beneficial, which took me aback a little.

    I had my 4th chemo session yesterday and my bloods showed my PSA is now down to 0.8, from 309, so I’m taking that as a very positive sign.

    They’ve also put me on Zoledronic Acid, which they’ve said I’ll have every four weeks for 12 months. Again, I took that as another positive and hopefully a sign that things are heading in the right direction. Anyone else been put on this?

    I hope it all goes well for you. Stay positive.