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intresting will have to print off and take with me when I get my first appointment with oncologist

xx

Mo

It's always going to be the case that by the time a longitudinal study like this can publish results (to put it brutally, and probably inaccuratey, they need to wait until half of the sample group have died, so that they have a mean survival time). It is therefore true that the treatments now used in the later stages of Pca were not available for some of the surveyed men, who might have survived longer - with or without chemo - if they had the drugs now used.

On the basis of what is now known, it does make sense for newly diagnosed men to consider the early chemo option, especially if they are relatively young and fit. Docetaxel is out of patent now and not an expensive treatment. But as to whether men who've been diagnosed for several years would benefit ..... no one knows.

Tony has been told that further chemo at a later stage is not ruled out, but that the current drug of choice (name escapes me now) for this has recently become unavailable or unfunded. However, this is a fast changing scene, and other options may be around when the time comes.

For now, as Kev says, today is a good day, and we look forward to enjoying the summer.
Marje

morning

I know have posted elsewhere but it is relevant to this topic

on my previous visit with onco I asked about this treatment which has concluded from stampede trial but was informed that it was at this time not being offered by NHS

so on tuesday 23/6/15 imagine my suprise to be offered this treatment instead of going on the stampede trial.

needless to say it completely knocked my train of thought, we where expecting to discuss tests prior to stampede and how this would progress, onco and nurse said they would give me time to have a think and call me in a week

treatment for the docetaxel would be 6 visits every 3 weeks 90min sessions, they will delay start of tests and treatment untill I return from holidays in august which means start in early sept with CT scan being booked on 1st sept

with me on visit where rlass, daughter and my brother, we discssed this afterwards, daughters comment was

'dad if you did not have PCa and some one said if you where offered a treatment which is proven against treatment that is still being tested what would you do'

only one option really on that statement, contacted onco nurse and told her I would accept the docetaxel treatment.

nidge

thank you all

We are in south Devon (Torbay Hospital) which I'm afraid won't be much help to you.
It seems so unfair.

Marje

It sounds as if we've been lucky then. Tony was offered early docetaxol without asking, last November. This is not as part of any trial, it was just regarded as an appropriate treatment. His oncologist showed us the CHAARTED trial results, which had, even at that time, led to a recommendation that newly diagnosed patients with advanced Pca should be offered this treatment if they wanted it. We do know that men who were much older were not offered it (T was 66), and also that he was the first man to accept the offer of this treatment - several others had turned it down. So I'm not so sure there would be a huge surge in demand. But anyway, it seems to be possible in some areas to have this treatment as a normal part of NHS care.
Marje

Edited by member 29 Jun 2015 at 18:17  | Reason: Not specified

Alison

You are right to look to other trusts or to trials to get what you need.

This is not right having to go through all this additional stress.

Does anyone know what the costs involved are?

Alison

Edited by member 30 Jun 2015 at 17:52  | Reason: Not specified

The cost of six cycles of docetaxel is, I think, around £5 -6000. I don't suppose this includes the hospital costs in administering it, but as treatments go, it's not an expensive one, and the significant increase in life expectancy, as shown in the recent Stampede results, must surely make it good value for money.
Marje

Many thanks to you all for your replies.

I will try to see if my GP is prepared to refer elsewhere, e.g. Bladerunner South Yorks would be OK for me.

My oncology nurse says they are preparing a list of patients for the treatment, but it's definitely not going to happen until it's approved. If funded by private means e.g. insurance no problem. One condition for NHS funding apparently is that the trial results have to published in a peer-reviewed journal, and this will take a few months at least (even the US trial results from last year haven't been published in this way yet unless anyone knows differently). The consultant also warned me that it may only be offered to those starting hormone therapy, and not men already on it, because (as pointed out by Marje) the backlog will be a problem rather than the drug cost - the excuse will be that the trial doesn't actually prove that it works for men who have been on HT for some time although it seems pretty obvious to most of us that it is likely to help. See http://www.england.nhs.uk/wp-content/uploads/2014/08/ncdf-summ-docetaxel.pdf for some discussion of this re the US results.

Alison, I have asked for consultation in the Birmingham region, and if necessary will go private but I don't like to. I'd rather do that than pay the same people who refused NHS treatment in Notts!

The ominous thing about all this is that with NHS staff shortages, the present generation of guys on HT may not get this treatment in some regions. The cruel irony (and false economy) is that most will end up getting it later when it is of less benefit. We should perhaps be getting on to our GPs, MPs, newspapers etc. to point this out.

Again many, many thanks to you all.

If they had more money, could they have more buildings for the admin staff to work on their computers with appointment spreadsheets and make more appointments for the more Oncos paid for with the if only sufficient in place funding to deal with?

At the end of the day the options are less, the facilities are reduced, and if there was more funding, this would not be the case. The simplicity of it appears to me to be that with efficiency savings (Cutbacks without mentioning the C word) and lack of investment to match increasing demand, there is less for those that need it.

Fudning? S'wot it's all about.

dave