Early Chemo - - Page 2Advanced or metastatic cancer - Prostate Cancer UK Online Community

User

Posted 16 Oct 2015 at 04:19

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 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.

User

Posted 16 Oct 2015 at 10:28

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 13:46

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
Xx
Mo

User

Posted 22 Oct 2015 at 21:33

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 08:24

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 08:48

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 🎄

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

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