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Early Chemo - Chemotherapy,Advanced prostate cancer,Advice / Support

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User
Posted 28 Jul 2015 at 19:57

Early chemo will not be funded by the NHS! Has anyone had this?

A bit of history, scores, dates etc. in profile:
I had my 3-month follow up after diagnosis on 12th June with Urology (more like 3 1/2 but hey). So far I've been on Decapeptyl/Triptorelin monthly and PSA is down from 30.9 to 4.3.

I was referred to Oncology for possible radio or chemo and was told that 'they were trying to be a bit cleverer and hit it early instead of waiting for the PSA to rise'. He didn't mention trial results at the time, but having read about it since I'm guessing that's where the idea came from. It sounded positive anyway.

Fast forward to today, 28th July, when I finally get to see the Oncologist...

He told me radio was out as it's more suited to 'spot' treatment, which was a bit of a surprise to me. Up to now I've  been told only it's in my lower lumber, specifically L2, and my lymph nodes were clear. This sounds like it's gone further? certainly I need to ask more questions.

He went on to say he would do chemo, but here's the kicker, the NHS will not fund it!

Eh?

Apparently they've been waiting for two months for the NHS to make a decision on funding, but there's been total silence. Not even a rumour of a decision.

He could do it privately, six sessions at £2-3K a time and it may give me an extra 12 months, maybe 18, but it would need to be by the end of August (best results are within 3 months but he's prepared to stretch it a bit).

Sorry if this is a bit disjointed, my head's all over the place :(

Any thoughts, suggestions  welcome

User
Posted 30 Jul 2015 at 07:15
Hi, so sorry to hear that you are having to fight to get chemo when the UK trial results were I believe an average of 22 months extra life from early administration. What does not make sense to me is the 3 month bit as I presume none of us knew how long we had PC before going for tests so some may have had for ages and others more recent, with your Gleson score you have slower growing cancer that has spread ( if I understand the score right) so it would have been better to administer chemo 10 months ago but no one knew you had it then so how could they!!!!!!
Anyway, yes I had early chemo but that is because I went private, my oncologist said that now the results are out it should be offered on NHS but funding and lack of facilities are probably an issue here as the NHS could not cope with sudden high demand.
Sorry I can't offer much more, I found chemo relatively ok ( ran 2 marathons whilst on weeks 13 and 15 of it) so do fight as hard as you can to get this as physically I am fine now as the PC does not affect my daily life for now ( mentally is another story). PM me any time if you want.
Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 04 Aug 2015 at 23:08

I think there is a misunderstanding of the label 'early chemo' .... it simply means chemo while you are still reasonably well as opposed to chemo at the end stage of your life which is the more normal for PCa patients.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 06 Aug 2015 at 07:41

Evidence is probably the key factor. The recent trials provide evidence that chemo given up to three months after diagnosis is beneficial. There simply haven't been trials, as far as I know, on how much help chemo would be at a later stage in the hormone-responsive phase of treatment. It might be just as helpful some months later, but without further trials, no one can say.

User
Posted 16 Oct 2015 at 04:19

hi


wow that's a big decision going private, we discussed this but hospital changed their mind and am on it, we talked of getting the press involved if necessary


hope you feel as good as I do after first dose, daughter joked are you sure they gave you some chemo, even though she was with me at the time


nidge


 

run long and prosper
'pooh how do you spell love'
'piglet you dont spell love -you just feel it'
User
Posted 16 Oct 2015 at 09:40

Bristol area offer chemo and HT but already, oncos are getting letters from NHS England saying 'why are you doing this' so patient groups down here may have to act to ensure men get these treatments. Made me so mad the other night to hear the Govt spent 12 million on policing the Equadorian embassy where Jullian Assange claimed asylum. That would fund a fair few treatments ! Hope all goes well, Nevyn!


 


Fiona.

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User
Posted 28 Jul 2015 at 21:38
Evening,,
I believe Stampede has determined that early chemo works best for some people and yes, I think we are waiting for NICE to change their guidance. I'm not sure why your oncologist says there is only a three month window of opportunity though as that's new to me.

I'd be interested in other comments on this one. It does feel a bit like touting for business!

I am surprised that anyone would give a definitive point of view in extending life in these circumstances, I know there is an overall advantage seen in Stampede (the trial that proved this point) but it can't be said to be specific to an individual. One thing that becomes increasingly clear about PCs is that everyone is different.

Anyway, welcome to the forum.

Kind regards
Allison
User
Posted 28 Jul 2015 at 22:08

Hi, thanks for the reply.


I may be mis-remembering. Certainly from what I've found Googling this evening, it suggests starting chemo early with HT. I guess it depends on your definition of early, I've been on HT for almost 5 months now.


Also I did say may, at no point did he say it will extend life.

User
Posted 28 Jul 2015 at 22:43

Nevyn,


I have just seen your post Chemo is not on the cards for us because of other health problems but Irun (Kev ) and Si (Si Ness) have had early chemo , please look up there names and send them a Pm to get info. If you look on there Bios it will give you more information.


You just need to click on there avatars and it should come up, post back if you have a problem.


BFN


Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 29 Jul 2015 at 04:19

hi nevyn


take a look at my profile I will starting chemo in september after my holidays, was offered docetaxel at my last visit having mentioned it at my previous meeting, maybe our trust is going to fund


nidge

run long and prosper
'pooh how do you spell love'
'piglet you dont spell love -you just feel it'
User
Posted 29 Jul 2015 at 21:18

I'm really sad to hear that some men are being denied early chemo. Tony was offered -and accepted - it by the oncologist last November, two months after being diagnosed with advanced, metastatic Pca. This was in Torbay hospital, on the NHS, and nothing was said about funding being an issue. This was on the basis of the US-based CHAARTED study. The Stampede results, which came out only after he had finished the chemo, confirmed that he had made the right decision in accepting this treatment, and we realise now how lucky he was to have that opportunity.

Marje

Edited by member 29 Jul 2015 at 21:19  | Reason: Not specified

User
Posted 30 Jul 2015 at 07:15
Hi, so sorry to hear that you are having to fight to get chemo when the UK trial results were I believe an average of 22 months extra life from early administration. What does not make sense to me is the 3 month bit as I presume none of us knew how long we had PC before going for tests so some may have had for ages and others more recent, with your Gleson score you have slower growing cancer that has spread ( if I understand the score right) so it would have been better to administer chemo 10 months ago but no one knew you had it then so how could they!!!!!!
Anyway, yes I had early chemo but that is because I went private, my oncologist said that now the results are out it should be offered on NHS but funding and lack of facilities are probably an issue here as the NHS could not cope with sudden high demand.
Sorry I can't offer much more, I found chemo relatively ok ( ran 2 marathons whilst on weeks 13 and 15 of it) so do fight as hard as you can to get this as physically I am fine now as the PC does not affect my daily life for now ( mentally is another story). PM me any time if you want.
Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 30 Jul 2015 at 08:22

I suppose the 3-month thing is because the men in the trials were recently diagnosed. As you say, the cancer could have been there, unsuspected and untreated, for some time before diagnosis, but the time of diagnosis is the first measuring point they can start at. It's a bit arbitrary, but it's all they can do.

The 22-month (median) extra life expectancy was for men with advanced bone mets; the advantage is probably less for a cancer that is less advanced. I think, too, that the men in the trials were under 70, and I know that an 82-year-old who was diagnosed by the same consultant at the same time as Tony was not offered chemo. That's why I'm not sure that demand would be high - when you narrow down the criteria to those who would probably benefit most (advanced Pca, under 70, otherwise fit), and then allow for the fact that many men would choose not to have chemo, I don't think the numbers would be overwheming.
Marje

User
Posted 03 Aug 2015 at 22:25

Hi Kev, Marje,

I've been running the conversation back umpteen times in my mind trying to get it straight. I think it's within 3 months of starting HT, but I could be wrong. That's the problem with being on your own.

Spoke to the specialist nurses and they said go back to my GP and try and get a referral for a 2nd opinion. They suggested several names at the Royal Marsden, but I have no idea if that is possible. The appointment is tomorrow...

User
Posted 04 Aug 2015 at 07:54
Nevyn
When was your staging moved to T4N0M1 ?
I seem to remember you were originally diagnosed as T3aN0MO

This might be why you were not offered stampede back then, at that time (please correct me anyone if I am wrong) the arms of the stampede trial that were recruiting were only open to newly diagnosed men with metastatic PCa. Your staging back then was not showing Mets. Some men got the early chemo if they were randomly selected for it in that arm of the trial.
Now your staging is showing early Mets so I would definitely push for a 2nd opinion and if you want it and can get it go for chemo. The fact you are only 57 and I assume other than PCa fit and well would align you with others who have had positive benefit from going this route.
The 22 month figure is a bit vague as many men involved in the trials are still doing well today. The true figures take many years to be accurately reflected.
I am a firm believer in hitting this cancer with everything you can as soon as you can if diagnosed with metastatic spread when a man is relatively young fit and otherwise healthy.
I wish you all the best at your review today. Take notes or ask if you can record the conversation, especially if you are going on your own. At least then you can play back to get complete recall.

Xx
Mo
User
Posted 04 Aug 2015 at 10:06

Mo,

The initial diagnosis said advanced with mets to lower lumber right from the outset.

I am fit and healthy (well was :)) so hopefully in a good place. I'll see what the doc says this afternoon, but I may have to bite the bullet if I want to hit this early...

Alan

Edited by member 04 Aug 2015 at 10:08  | Reason: Not specified

User
Posted 04 Aug 2015 at 16:11
Sorry Nevyn
I remembered your earlier posts because you were hoping to get onto the Opalarib trial I think and had been asked all about your family history etc. I think that trial is something I wil be looking at in the Unversity course I am about to start.

In going backwards on the forum to when I first posted to you in order to jog my failing memory it was actually on Kelpie's thread (you had a little run of posts on here) not your own, I have managed to pick up his original diagnosis staging not yours. Many apologies

I hope all has gone well with your appointment today

best wishes
xx
Mo
User
Posted 04 Aug 2015 at 20:23

I would try and see which areas are funding early chemo, and ask for a second opinion for that trust


Good luck


Barry

Edited by member 04 Aug 2015 at 20:24  | Reason: Not specified

User
Posted 04 Aug 2015 at 22:20

GP is referring me to the Royal Marsden for a 2nd opinion. Fingers crossed...

User
Posted 04 Aug 2015 at 23:08

I think there is a misunderstanding of the label 'early chemo' .... it simply means chemo while you are still reasonably well as opposed to chemo at the end stage of your life which is the more normal for PCa patients.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 05 Aug 2015 at 15:18
Lyn
I am not sure that the meaning is wrong after all it is what it is, Chemo given early.
I have no doubts at all after I have seen how people I have around me have responded to it and hearing Jamie explain his rational behind it all, that for reasonably fit and otherwise healthy men diagnosed with metastatic disease that this early use of chemo gives them a good chance of a much better outcome and extends life when it is still of a higher quality.

I would agree the label is probably misrepresentative, chemo is chemo and tends to be the same type given in the same way. It is still palliative treatment so maybe a better label would be primary chemo ...after all there are many men who go through this treatment more than once in their journey.

missed you so I am glad to see you have caught up with the forum already

best wishes and a big hug to you and John
xx
Mo
User
Posted 05 Aug 2015 at 20:25

Hi Mo,
my point is that there is nothing in the reports so far to indicate that early chemo needs to be delivered within a particular time of being diagnosed so the mention above of a 3 month wait could be misleading or a confusion. As far as what has been made public so far goes, 'early' means before some of the other treatments rather than 'quickly'

Good to be back x

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 06 Aug 2015 at 07:41

Evidence is probably the key factor. The recent trials provide evidence that chemo given up to three months after diagnosis is beneficial. There simply haven't been trials, as far as I know, on how much help chemo would be at a later stage in the hormone-responsive phase of treatment. It might be just as helpful some months later, but without further trials, no one can say.

User
Posted 06 Aug 2015 at 20:12

I volunteer! :)

Thanks Piglet, that's how I understand it, I guess I didn't explain myself sufficiently well.

In other news, my PSA is down to 3.2, which is good.

User
Posted 15 Oct 2015 at 22:42

Update:

Nobody's budging, got my MP involved but still nothing. Never did hear from RM despite chasing...

Saw Onco today and went private. Treatment starts next week, 6 cycles Docatexel at 3 week intervals. Relieved that it's finally happening, but a bit apprehensive about the side-effects. We shall see...

PSA now 2.4

 
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