Had my bloods on Thursday and my appointment yesterday for Cycle 6 of Docetaxel, the nurse said oh you're on cycle 7 and just here for medication, erm no this is cycle 6 and due my last Docetaxel and we had this discussion 3 weeks ago when I was told it was 6 then. When she checked back she said it was because on my first appointment I was just given medication and that I should have had Docetaxel then, however my oncologist said no start Darolutimide and then chemo a month afterwards. So off she goes to the pharmacy who didn't have any in and can't get it until Wednesday, she also said I couldn't have my Darolutimide until then as well, after telling her the oncologist had already told them when I had COVID when they refused to give me them that under no circumstances are they to stop prescribing it unless he says so, I eventually was given 4 weeks supply.
However my question is she told me to stop taking steroids (Prednisolone) when the next lot run out in 3 ish weeks, has anyone else been told this it or is she wrong? My next oncologist review is the 3rd December so can ask then and will have just enough left until the day after that as they gave me extra on one occasion.
Also at my last review I asked what happens after the chemotherapy finishes do I continue with blood tests and follow up scans and was told just blood tests, this to me seems strange as I would expect periodic scans, so again what are other people having done?
Thanks for reading
Regards
Sprinter
Hi Sprinter . I thought you might like to read this article on the use of Darolutamide with Docetaxel and the timing of administration of them in terms of outcome.
https://www.sciencedirect.com/science/article/pii/S1558767324000028
Different hospitals have different protocols with the prednisolone. My husband was only given it for 3 days around each cycle to support him with side effects. Some hospitals recommend it for the whole time of chemotherapy treatment which sounds like your routine so you have been on it for several weeks? Generally with steroids the advice is to gradually reduce the dose in order to prevent a withdrawal syndrome but how long this takes is dependent on dose and the length of time you have been on it. I would double check whether it is safe for you to come off the prednisolone without tapering.
My husband has regular 3 monthly scans since initial diagnosis but we live in Greece and he does have advanced metastatic prostate cancer which has never got down to negligible PSA levels despite a range of treatments. I hope others who live in the UK will come along and give you their experience with monitoring but from memory some health authorities offer a scan, others don't.
Hi Alwayshope, thanks for your reply, yes they put me on Prednisolone at the same time as the Darolutimide and also Dexamethasone steroid for 3 days when having the Docetaxel (starting day before the infusion).
Reading various articles on coming off the Prednisolone some say as it's a small dose coming off it isn't a problem whereas others don't state a dosage and say to gradually decrease the dose, hence I'll discuss it with my oncologist when I see him early December
Regards
Sprinter
Is anyone else through cycle 6 and having just follow up blood tests or are you having scans, if scans which ones?
I would like to be prepared for my review on 3rd December as I don't think just bloods are sufficient with metastatic prostate cancer that has spread to many bones throughout
As you are not getting any replies I have brought this to the top again. I know that Shar husband had chemotherapy at the same time as my husband and remember that he was not offered scans - perhaps she can give you the reasoning in the UK.
I have also looked at the European Guidelines which use the CHAARTED trial to recommend some form of scan but doesn't advise on frequency or mode.
Men with metastasised PCa on ADT should also in the absence of a PSA rise be followed up with regular imaging since twenty-five percent of men with, or without, docetaxel in the CHAARTED trial developed clinical progression without a PSA rise [1336]. One in eight men with a PSA < 2 ng/mL showed clinical progression [1336]. The addition of docetaxel to ADT in the CHAARTED trial population did not reduce the incidence of clinical progression at low PSA values and this rate was similar for both low- and high-volume disease as per CHAARTED criteria [1336]. However, the optimal timing and image modality to be used remain unclear, as is the real clinical value of any findings.
Once again many thanks for your reply Alwayshope. I'm surprised not to have had any replies as I thought there would have been quite a few having gone through the same Triplet therapy and I find it difficult to understand my doctors reasoning for just wanting to do blood tests as from what I understand using just the PSA isn't sufficient for metastases in the bones especially when he showed me the original scans, you would expect that they would want to see if it had grown or whether the Docetaxel has done it's job in slowing it down etc
If he's of the same opinion then I may ask for a referral to his boss the lead consultant as my doctor is still a registrar (though even he has a trainee doctor in with him)
Kind regards
Sprinter
Hi Sprinter
I pre-date the use of triplet therapy but I do have metastatic cancer (in the lymph system rather than the bones). As I was diagnosed during covid I didn't get chemo but got put on enzalutamide straight away - that was 4 years ago. I have regular 3 monthly blood tests and when I have asked about scans they've told me they won't do any until there are changes in the PSA level. It seems they are generally happy to rely on PSA until it starts to rise.
I am obviously not in exactly same situation as you but I do find it strange that they do not re-scan every so often. I would definitely follow up with your oncology team.
All the best
Steve
Hello Sprinter,
I've recently finished chemo under the Triplet therapy regime and am now on Prostap plus Darolutamide long term. I'm due to have only a blood test for review every 12 weeks but my PC spread is to lymph nodes and not bones so maybe this is relevant to my ongoing surveillance?
I didn't reply to your posts because of this but your thoughts on the need for scans look perfectly reasonable to me and I'd also consider asking for a referral in your circumstances.
I hope you get a satisfactory response and follow up action to answer your concerns.
Derek.
Hi Steve thanks for your reply, it does seem strange relying on blood tests as even these past few days with the discussion on Chris Hoy they are saying the PSA test isn't always reliable enough and further tests sometimes unnecessarily are needed.
So when it's spread to lymph nodes and bones you would expect periodic scans to be done, I'll wait and see what he says at the review and take it from there.
Regards
Sprinter
Hi Derek, thanks for your response. I'm currently on 4 weekly Degarelix injections and Darolutimide plus Prednisolone, the chemo nurse has told me to stop the prednisolone when they run out which is a few days after my review so I'll check with the registrar then as I can't remember what he said about those originally. He initially wanted to swap the Degarelix for 6 monthly Triptorelin injections however I read one of the side effects could be spinal chord compression and I certainly didn't want to risk that and having to put up with potential side effects for 6 months rather than 4 weeks on Degarelix didn't appeal to me.
I also asked about the newly NICE authorised daily hormone tablet relugolix (Orgovyx) and at the time (August) he said they weren't licenced to prescribe it, however I asked at the hospital pharmacy last week and was told by the senior pharmacist that whilst they hadn't dispensed any it was available for them to have it prescribed and dispensed so will ask again if I can change to that in order to do away with the 4 weekly injection.
How are you getting on with your nails? Mine are tingly but other than being difficult to grip things tightly are manageable. I start my Filgrastim injections today so not looking forward to the next week, but after that it's time to start building my strength up and getting rid of this horrendous fatigue, Monday I got up and was back in bed within an hour until Tuesday which I've never had to do previously.
Onwards and upwards
Regards
Sprinter
My nails are still giving me trouble and are quite painful, but things are looking up a little. One thumb nail and one finger nail have gone but both had an infection underneath them so probably not surprising. I saw my consultant yesterday and he expects discolouring and deformation of most of the rest will grow out over time and doesn't expect I will lose them. Generally I've noticed that most nails that were loose have now become firmer so maybe he's right. I do hope you don't have the same experience with yours.
Coincidentally I also asked my man if there was a tablet alternative to periodic injections (prostap every 12 weeks in my case) and he told me about relugolix although I haven't decided what to do yet. This was around the beginning of September so looks like it became available for dispensing around then?
My fatigue is much better now and it lifted almost as suddenly as it appeared in the first place so I'm sure yours will do the same when its ready.
Good luck with the filgrastim, I too hated this.
Derek.
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
© Macmillan Cancer Support 2024 © Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company number 2400969. Isle of Man company number 4694F. Registered office: 3rd Floor, Bronze Building, The Forge, 105 Sumner Street, London, SE1 9HZ. VAT no: 668265007