Early Chemo - Advanced or metastatic cancer - Prostate Cancer UK Online Community

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

User

Posted 28 Jul 2015 at 20:57

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 08:15

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 05 Aug 2015 at 00:08

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 08:41

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 05:19

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 10:40

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.

Show Most Thanked Posts

User

Posted 28 Jul 2015 at 22:38

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 23:08

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 23:43

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 05:19

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 22:18

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 22:19 | Reason: Not specified

User

Posted 30 Jul 2015 at 08:15

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 09:22

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 23:25

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 08:54

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.

User

Posted 04 Aug 2015 at 11:06

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 11:08 | Reason: Not specified

User

Posted 04 Aug 2015 at 17:11

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

User

Posted 04 Aug 2015 at 21:23

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 21:24 | Reason: Not specified

User

Posted 04 Aug 2015 at 23:20

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

User

Posted 05 Aug 2015 at 00:08

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 05 Aug 2015 at 16:18

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

User

Posted 05 Aug 2015 at 21:25

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 08:41

User

Posted 06 Aug 2015 at 21:12

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 23:42

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

User

Posted 16 Oct 2015 at 05:19

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 10:40

Fiona.

User

Posted 16 Oct 2015 at 11:28

Thanks Nidge, Fiona,

Decision on going private was eased somewhat by a substantial payout from critical illness cover :) Doubt I could have managed it otherwise.

Birmingham are offering it too, made the news and reported here a couple of weeks back I think. Onco mentioned it yesterday, suspect they will be getting letters shortly too...

User

Posted 16 Oct 2015 at 14:46

Nevyn

I am really pleased you are going to get the chemo, it's a shame you have to pay for it but thank goodness for that critical illness cover.

Side effects were very few for Mick but they do vary greatly from man to man.

The most common one seems to be things tasting horrid so loss of appetite. Sometimes soreness in the mouth associated with that. The tip for that is to freeze pineapple cubes and suck on them during chemo. I can never remember the theory behind that but it does seem to work.

Best wishes

User

Posted 22 Oct 2015 at 22:33

Thanks Mo

Treatment starts tomorrow AT HOME!

For info:

First treatment cost £2450. Assuming the same for each cycle, that's a little bit under £15000. Onco's charges take it slightly over.

MP has received replies from: (paraphrased)

Local trust - No, because NICE...

NHS England - No, but under review (i.e. no longer on-hold) following CHAARTED publication and STAMPEDE.

Sec of State for Health - Nothing to stop Trust funding if it wishes.

Oh and I've been mentioned in Hansard :) Sec of State looking into it personally...

Onco will switch back to NHS if they later decide to fund. MP said he would try and recover costs if that happens - He's had some success recovering costs for other constituents, albeit in different circumstances.

Whatever, it's finally happening... Wo Hoo!

User

Posted 24 Oct 2015 at 09:24

Well, it happened yesterday and so far so good. Had the best night's sleep in ages, no sweats/flushes and the back pain and odd feelings have almost gone (although I'll see how I feel when I get up, having a sneaky lie-in). Really wasn't expecting it to have an effect that quickly.

Having it done at home was relaxed and stress free, none of that hassle with travelling, parking and hanging around waiting...

Expensive? Yes, but I don't care anymore. Done deal, in the past.

User

Posted 24 Oct 2015 at 09:48

Hi Nevyn, so glad you are getting the treatment and let's hope you can get the funding back from NHS. I know nothing about this form of treatment but am reading and absorbing as much info as poss for any future need, I am lucky in as much as I have aggressive PCa confined to my prostate and on HT and RT just finished sixth week.

I hope all goes well for you and wish you success with chemo.

Regards Chris/Woody

Life seems different upside down, take another viewpoint

User

Posted 29 Oct 2015 at 16:33

Well that was interesting...

Long story short, ended up in A&E Monday evening with a high temperature. Admitted and given 3 lots of IV antibiotics. Told I would probably be in for 48 hours. Disharged Tuesday lunchtime after Onco called the and said it was a reaction to the GCSF. Sent home with antibiotics 'horse pills' (they're huge!).

Tuesday afternoon and Wednesday spent with increasing back pain and Bone pain. Turns out that is side-effects to the GCSF too.

Feeling pretty washed out now, glad I'm not at work.

User

Posted 29 Oct 2015 at 18:42

Hi , I had a similar reaction to the gcsf ( I think that's what it was, self injected into my stomach) which was given to me 3 weeks after my initial chemo as my blood count was so low, I had never been in so much pain after two doses of the stuff. From then on my chemo amount was reduced from 75 to 60 ( no idea what units they were but that was the numbers). From then on I had no need for further gcsf.

Good luck with the remainder of the chemo sessions.

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 29 Oct 2015 at 19:05

Hi Kev, cheers, sounds the same. Mine was Lipegfilgrastim, a single dose to be self-injected into my stomach at least 24hrs after the chemo to pre-empt the drop in blood count. The hospital did say one of my counts was very high (but better than being low) so I guess that's the reason.

User

Posted 29 Oct 2015 at 19:12

Hi Nevyn, i was crying in pain, it was like I imagine contractions are like, every 10 seconds at the bottom of my spine, I was gripping the chair so tight that my hands locked on occasions. My temperature went throght the roof in part because I had a hot water bottle on my back to try to ease the pain. In A&E they gave me a massive dose of morphine and even that only slightly reduced the pain. Hopefully you will not have to do it again, if they reduce the chemo level slightly that would sort it. My first post was incorrect as I had the low blood count 2 weeks after the first dose as they wanted to see what it had done to my blood prior to the 2nd dose.

Hope all goes well from now

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 29 Oct 2015 at 19:50

Hi guys , I had my first docetaxal on Tuesday . Feeling ok so far .... I feel like I'm waiting for something to bad to happen . Haven't taken any domperidone yet , the anti sickness tablets yet .....

User

Posted 29 Oct 2015 at 20:07

Gary, I've not needed the anti-sickness pills yet :)

Easy for me to say, but try not to worry about it. From my reading here and elsewhere, I wasn't expecting anything bad. Thing is, we're all different

User

Posted 29 Oct 2015 at 20:08

Well done Gary, the first one is the toughest mentally, do what you want to not what you think your body should be.

As for anti sickness, my advice is to take them for 6 days after each dose. There are no real side effects for most and as my onco said, if you start feeling sick later on it's too late to reverse it, so have one now mate and for the next 3 days ( I know they say 3 but my onco said no downside of taking for 6 and it will make sure you don't feel ill at all.

Keep posting as to how you feel as it's reassuring for others just to know good or bad ( hopefully good).

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 29 Oct 2015 at 20:28

Thanks guys ...

User

Posted 19 Dec 2015 at 17:08

Hope your chemo is going ok Nevyn ???

Ive been ok ,got my fourth round on 29th December and no major problems ..Have been given the gscf injection for cycle 2 and 3 and no reaction . a little tired and feeling sickly on the 2nd and 3rd day .

i really hope you are all doing well ...

gary

User

Posted 19 Dec 2015 at 17:11

forgot to ask about you nidge ?

I hope you are still running..................

User

Posted 19 Dec 2015 at 18:07

Hi gary

Had to stop my running till i get through my chemo only 2 sessions left

24th dec and 14th jan

Got a bit of a cough on antibiotics

And shortage of breath

Had to have a trip to into weston park temp went a bit to high

But all checked out ok

Have a merry christmas

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User

Posted 19 Dec 2015 at 20:13

Hi Gary,

Not too bad actually, only slight pain on 2 & 3 which is good. I've had high temperatures but not as bad as the first. Still no sickness. Only hiccup is my PSA jumped from 1.4 to 2.5 which wasn't in the plan, first time its risen since this all started...

Fatigue is getting worse, so I just have to take it easy. Not been out on the bike for weeks and really missing it. My skin is getting very dry in places, particularly face and hands, so I've had to start moisturising... Very new man :)

Chemo 4 is on the 30th, delayed a few days by crimbo, so I at least I get to enjoy that.

Merry Christmas everyone 🎄

User

Posted 20 Dec 2015 at 11:36

morning guys ,

sorry to hear your PSA have jumped ,i am no expert but do you think its to do with high temp/infection? i do hope its just a hiccup and there are no more rises . My skin has become dry and had to buy some clinique for men .......it does the trick .

Hope you are feeling better nidge

Have a few nice bottles of red ,ready for xmas .......and looking forward to it ...i finished work yesterday ,only been doing 3 days a week since chemo but will probably have january off ....

Merry Christmas

User

Posted 30 Dec 2015 at 19:48

Cycle 4 today, no problems so far, feeling a bit tired is all.

Started getting hives/urticaria about a week ago. I'm covered in large red raised patches, the slightest touch sets it off and it itches like ubggery! Have tried antihistamines but no effect. Onco says it's down to the chemo and suggested a different antihistamine. Had the first of those today but no effect yet. Downside is this one says No Alcohol. Happy Hogmanay... :(

More interestingly, it seems there is to be an imminent decision about funding which means my last two cycles could be on the NHS! Now that would be a nice belated crimbo present!

Bliadhna Mhath Ùr

p.s. PSA now 1.6, so the last one was obviously a glitch..

Edited by member 30 Dec 2015 at 19:51 | Reason: Not specified

User

Posted 30 Dec 2015 at 21:26

Great news on your p.s .a coming down . That must be the best Christmas present .

I had number 4 yesterday , full on day as had bloods at 10am and

Finally walk out at 4.30 . Mustn't complain all ok

Sorry to hear you can't have a drink ... I will have one for you .

I hope the hives clear up ....

Happy new year !

User

Posted 28 Jan 2016 at 23:36

Time for an update...

I already mentioned the hives, but I also had breathing problems one night about a week after cycle 4 and ended up getting the paramedics out. I was put on a nebuliser which sorted me out rapidly and as there was nothing else wrong we left it at that and I had no further problems that night. It happened again the next night, not as bad so I didn't call anyone out, but I saw my GP in the morning and was prescribed a Solbutamol inhaler. Used it a few times for the next 2 or 3 days and after that I was fine.

My Onco had doubts about going ahead with the final 2 cycles due to these effects and threatened to cancel... Disaster! I felt that if I didn't complete the full course I wouldn't get the full benefit and that would mean I had wasted my money... We talked it over and agreed to carry on.

Cycle 5 happened a week ago today, still private as still no decision from the NHS... Grrrr.

So far so good, no repeat of the breathing problems. Still have hives but it's not a problem. Clinique for men was a good call too, thanks Gary ;)

PSA is down to 1.1 which is good. Still dreaming of a 0.0-something though :)

GOOD NEWS!

Had a call from the Onco's secretary 2 days ago, "NHS are now funding, can you come and see him this afternoon?". You bet I can!!!

Long story short, 6th and final cycle on the NHS, booked in for 18th Feb. Follow up end of March and see where we go from there.

So there we have it, 'Early chemo' alongside HT is now available in England! I believe an orderly queue has already formed...

User

Posted 29 Jan 2016 at 09:25

Great to hear your news and that treatment is on the NHS for you. Hope final session goes well, Regards,

Fiona.

User

Posted 29 Jan 2016 at 12:01

So please for you Nevyn. Hope all goes well for the last one with no more nasties.

Best Wishes
Sandra

We can't control the winds - but we can adjust our sails

User

Posted 30 Jan 2016 at 19:28

hi,

Great news that you could continue with chemo ....

sounds like you have had a tough time with everything .but im pleased that the NHS have finally agreed to fund treatment .its hard enough dealing with diagnosis ,treatment without fighting for what you deserve.

Glad the clinique is working !!!

My treatment has gone well ,fifth cycle last week ,taste bugs effected and feeling sick but 5 days iafter and i feel back to normal . My sister set me up to see a nurtritionist before i started chemo and i take a mixture of vitimins daily , mainly to flush out my liver .. i do think its made a massive different .

Good luck for the next few weeks ahead ....

gary

User

Posted 22 Feb 2016 at 14:07

Well I had my last chemo on the NHS last Thursday. Went well, not quite as relaxing as having it at home, but a lot cheaper :) Good news is my PSA is down to 0.7, so still heading in the right direction.

No GCSF injection on the NHS, instead I'm on steroids for 18 days. Don't feel quite so bad this time so I guess some of the side-effects were down to the GCSF... Still feeling a bit yeuch and tired, but expect to feel better after a week as before.

Looking forward to the hives going and a bit of strength returning so I can get back out on the bike.

Onwards and upwards

Notification

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

Similar Topics

Join the online community now.