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Docetaxel Chemo – the highs and the lows

User
Posted 30 Dec 2016 at 21:10
Keep Wagging that tale David (also my brothers name).

Fab Fab news on the PSA .

I am loving your updates bringing fun, bringing humour , bringing reality, bringing help and advise to new newbies, but best of all bringing your unique and lovely personality to the forum.

Keep going you are doing such a wonderful job.

A very happy new year. Xx

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 01 Jan 2017 at 12:55

Infusion 3 Day 5

My thanks to Gromit and Marje whose advice has been spot on.

More graphic details follow so if you are not taking or don't have any problems in taking Ondansetron then you don't need to read further.

As I understand it, Ondansetron is a drug that has an adverse effect on peristalsis and thus can cause constipation.

Prior to my infusion last Wednesday, I talked to the chemo nurse about whether I still needed Ondansetron. Her answer was along the lines of 'it's your body and therefore your choice'. I decided that whilst I hate being constipated, that I hate throwing up even more. Therefore, I decided to continue with the Ondansetron.

Last Tuesday, I took one Laxido after breakfast and one after dinner. On Wednesday, the day of the infusion, I did the same and took one Dulcolax before going to bed. On Thursday I had two small movements which were nowhere near a normal day's output but, most importantly, the movements were soft and needed no straining. I took one Laxido after breakfast and one after dinner on Thursday and one Dulcolax before going to bed.

On Friday, movements returned to normal with a consequent increase in volume to compensate for limited output the previous day. Movements were soft and needed no straining. I took one Laxido after breakfast on Friday and then nothing further. Since then, my bowels have been perfect.

FYI Ondansetron was administered by infusion on Wednesday afternoon and then by pill Wednesday evening, Thursday morning and Thursday evening. I decided not to take the Ondansetron pills on Friday morning or evening and suffered no adverse consequences.

I recommend trying the above course of action if Ondansetron is causing you problems.

User
Posted 03 Jan 2017 at 14:29

Glad everything is going well David.

Again my husband is one day behind you on cycle 3.

Unfortunately he's having a tough time because we all caught the horrible cold/cough virus that is going round. Although he temp was ok I was getting very concerned about him because he was really quite unwell so he has seen GP today. GP was very good and has given him some antibitotics as a precaution and is also giving him a full blood test in two days to double check his white blood cell count.

(I feel sorry for the poor Queen if this is the virus she has. I've never been wiped out by q cold in the same way before and I'm nowhere near 90 :-) !

User
Posted 03 Jan 2017 at 14:41

Sally,

I really think you should be ringing the Chemo ward to tell them about this. It has been made clear to me in no uncertain terms that if I get an infection, don't go to your GP, do ring us. The problem with an infection is if things go bad then sepsis is a real danger. Please ring them.

David

User
Posted 03 Jan 2017 at 15:01
Hi David

Thank you for the message. Yes he is in touch with the chemo unit too. Between the two of them they are looking after him very well but it is very nerve wracking with the sepsis risk.

User
Posted 03 Jan 2017 at 15:42

You could certainly have done without that...did you manage to have any sort of a Christmas break before the virus hit? Hope you got up to see the family and that there were people on hand to nurse you as well as your husband - sounds as if you are both knocked for six.

Do hope that you are both on an even keel again before too long and that the chemo is doing its job. Any sign of a Warwick offer to cheer everyone up?

Take care.

Eleanor

User
Posted 03 Jan 2017 at 17:20

Originally Posted by: Online Community Member
Any sign of a Warwick offer to cheer everyone up?

I'm probably suffering from terminal thickness, but, what's a Warwick offer?

User
Posted 03 Jan 2017 at 22:58
Hi Eleanor we had Christmas Eve and Christmas Day with family before this hit which I'm so grateful for.

I'm really hoping that the antibiotics do some good because this has really knocked him for six. We had been so careful in trying to avoid viruses but so many people seem to have it.

David - one of my sons is waiting to see if he gets an offer from Warwick University :-) Eleanor - still waiting. He may not hear anything until the end of the month.

User
Posted 10 Jan 2017 at 16:37

Infusion 3 Day 14

Update time. I'm now recognising some patterns. Days 4 to 6 of this cycle I felt pretty crappy. The same thing happened in the first two cycles but not for so long. Anyway, I'm prepared for it now, it's a cost of the chemo treatment. 2 or 3 crappy days out of 21, I can live with that.

I've got a few more side effects.

Bruising - This lasts for a long time at the site of the canula that administers the infusion. It looks horrible but doesn't hurt one iota.

Peripheral neuropathy - I've developed this in some fingers and toes. It's not too bad but I will tell my Onco about it at our consultation next Tuesday.

Hair loss - It's still coming out like a good 'un. Do I care? Nope!

Nail changes - I'm getting some discoloration in my toe nails. Finger nails still look fine.

User
Posted 17 Jan 2017 at 20:28

Infusion 4 Day 1

Woof, woof, woof .......... wag, wag, wag!

Prior to my consultation with my lovely Onco this morning I was singing silently to myself my favourite Status Quo song, 'Down down, deeper and down':

https://www.youtube.com/watch?v=bNPJuJSVmNA

This song has one of the greatest guitar intros ever.

Anyway, the song worked, my PSA has dropped from 7.44 to 5.04 and all other bloods results were good.

The Onco wasn't concerned about the minor peripheral neuropathy or the minor nail changes.

Infusion 4 completed without any problems.

Edited by member 17 Jan 2017 at 20:38  | Reason: Not specified

User
Posted 17 Jan 2017 at 22:22
I have said it before and yes I will say it again your no nonsense / humorous/ and down to earth thread is a real help to others who might be going through or embarking on chemo.

Keep going David you are a little ray of sunshine.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 17 Jan 2017 at 23:34

Great update Col - nearly half time already!

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

User
Posted 18 Jan 2017 at 08:50

Now you're talking!

I played hockey for 40 seasons, from ages 15 to 54, at which point my knees said enough, no more.

We always had orange segments at half time.

Life got more interesting at 40 since at that age you are classified as a 'veteran' in hockey terms. Most clubs have veteran teams. The nice thing about being a vet was that you still had orange segments at half time but you also shared a bottle of port. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

I've got half a bottle of 10 year old tawny port left over from Crimbo. I'll get it out at this half time.

Edited by member 18 Jan 2017 at 09:21  | Reason: Not specified

User
Posted 18 Jan 2017 at 20:44

There's something you need to know about me. I worked for all my career in IT, therefore, I like to think I'm a fairly logical person.

My hero is Spock and I don't mean the Doctor. I have (virtual) green blood in my veins.

The upshot of this is I can't look at data and not want to analyse it.

Mrs_C has an alternative explanation for my data affliction, she says I'm anally retentive. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif

Anyway, I've submitted to the need to analyse my PSA data that you can find in my profile by clicking on my name.

I've produced a couple of graphs that you can find from the links below. I list what I've learnt from each one. 

https://imageshack.com/i/pnwJ0WkAp

This shows my complete PSA record together with the starts and stops of various treatments. One major point that could be of interest to you relates to Enzalutamide. If your PSA starts rising a few months after starting it, don't despair, it (Enzalutamide) can mount a counter attack.

The graph seems to indicate that my PSA is going to rocket down to zero in the near future now I'm on chemo. This is probably false and is caused by the narrow date range scale. The next graph shows a truer position. 

https://imageshack.com/i/poajE96Zp

This suggests the drop in PSA is leveling out and the data leads me to believe that this will be somewhere around 4.5.

If correct, the question will then be, will we bump along the bottom for a while or will we see a rise and the development of a 'normal curve'.

Edited by member 19 Jan 2017 at 11:33  | Reason: Not specified

User
Posted 18 Jan 2017 at 20:47

From another hockey vet - 53 year old playing for his county! I recall scoring a couple of goals on a water based pitch in my County call-up at that advanced age. I had to give up when my left shoulder was wrecked landing hard on one hand after neither the goalie or I would compromise in a certain collision. I suffered. He didn't - well padded. Decided at 55 that I should leave it to the kids. I never heard of port at half time. If I had known of this I'd probably be playing still, 20 years on.... But perhaps in a bit of a daze.

Keep up the good work and great posts!

AC in Price.

User
Posted 18 Jan 2017 at 20:59

Originally Posted by: Online Community Member

I never heard of port at half time.

I played for Berkhamsted in Hertfordshire. The port was quite a tradition with the Vets teams in our local area.

User
Posted 21 Jan 2017 at 15:41

Infusion 4 Day 5

The pattern continues. Day 4  and I felt crappy. More serious was, I opened one bottle of beer and it didn't taste that great.

Woooaaahhhh! This is not an acceptable side effect. If it continues I'll be on to 999. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

Today, after a decent night's sleep and I feel less crappy than yesterday. We're off to The Cannon in Newton Poppleford for dinner tonight. They serve two real ales directly from the barrel (the absolute best way to have your ale served, no lines or beer engines). Somehow, I think this will give me just the lift I need. Fingers crossed.

Edited by member 21 Jan 2017 at 15:44  | Reason: Not specified

User
Posted 21 Jan 2017 at 15:49

Bound to work! Your dedication to the real ale diet does you credit and, I'm sure, gives hope to many!

Enjoy tonight's outing.

E

x

 

User
Posted 21 Jan 2017 at 16:17

Sounds perfect, my OH loves a decent pint of ale, he had a brewery on tower bridge in London in the 70s.
I'm sure it's does yer good. We were drinking spingo ale last week..along with some others I can't remember, as I moved on to red wine.. I love beer but volume is a bit too much for me🍻🍺🥂he was telling me about a beer tour when he went to the midlands to sample a pint of ale all the way from south London. Now that's dedication in my book.
Have a good evening, I hope it perks you up.

User
Posted 21 Jan 2017 at 16:42

Originally Posted by: Online Community Member
he had a brewery on tower bridge in London in the 70s.

Nice one! If OH was in London in the 70's, did he ever visit the The Youngs brewery in Wandsworth? I went in 1977, the best brewery visit I've ever done - the ram, the shires that delivered the beer to the local pubs, the geese who were the burglar alarm and the working beam engine. I can still taste the Young's Special in the tasting room now. Heaven.

All gone now, Youngs made at Charlie Wells in Bedford, not a patch on what it was.

User
Posted 21 Jan 2017 at 16:58

Leila,

Seeing as you are in west Wales, have you ever been here:

http://www.threetunsbrewery.co.uk/home.htm

It really is a beautiful brewery.

 

User
Posted 21 Jan 2017 at 17:14

Certainly have, we were there the weekend they opened it... quite a few years ago. I lived in Shropshire a long time ago, and we went back for a holiday, and I somehow managed to arrange for us to be there when it opened. They had live music too, so he was in his element pro musician playing for the opening of brewery.
I like Bishps Castle, and the surrounding areas.

Leila

User
Posted 21 Jan 2017 at 17:35
Off main topic I know but does anyone remember the All Nations in Madeley or the White Swan, Netherton (Doris Pardoe's)?
User
Posted 21 Jan 2017 at 19:42
Love it Guys ! Forget the Chemo let's go on a Pub Crawl . 😄😄👏👏

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 21 Jan 2017 at 20:18

Works for me Julie.

User
Posted 31 Jan 2017 at 09:10

Infusion 4 Day 15

Current status of side effects.

Bruising at the canula site - Much improved compared to last time. A bruise came out but quickly disappeared. Credit to the chemo nurse who told me to press down firmly using a thumb and a cotton wool ball for at least two minutes on the canula site once the canula had been removed.

Peripheral neuropathy - No better or worse.

Nail changes -  I'm getting some discoloration on my finger nails as well as my toe nails. However, there are no signs of any ridges on the nails and the nail bed looks healthy so hopefully I'm not going to suffer from nail loss.

Hair loss - It seems to have stopped coming out! Woop woop! However, what's left would best be described a bum fluff rather than hair. My hairdresser tells me that strange things can happen to your hair after chemo ends. It seems that previously straight hair can become curly and mouse coloured hair can become dark. So, come June, I expect I'll wake up one morning, look in the mirror and see an afro or a mohican.

User
Posted 31 Jan 2017 at 10:33

It is great to follow your progress and your positive attitude inspires.

I am slightly ahead of you on the Chemo front. I am on infusion 5 day 7. Must say infusion 5 was the worst to date from a tiredness and bone ache perspective, but feeling good enough today to go for a long walk.

All best wishes

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 31 Jan 2017 at 10:48

Dave,

Your PSA reduction whilst on chemo is spectacularly good. What does your Onco think about it and does it give hope for a decent period of remission?

I see you are having 6 cycles of docetaxel whereas my Onco is planning 10 cycles. Did your Onco explain why it was going to be 6 rather than 10?

David

User
Posted 31 Jan 2017 at 11:04

David,

Onco is delighted by fall in Psa as am I of course.

I was told that 6 cycles would be preferable at this stage, no more.

I believe I will have a further Pet scan when chemo over with, so they can reassess

My thoughts on Chemo for those worried about it, its not as scary as I thought it would be and well worth the effort.

Not sure if you agree David?

Kind regards

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 31 Jan 2017 at 11:48

Originally Posted by: Online Community Member
My thoughts on Chemo for those worried about it, its not as scary as I thought it would be and well worth the effort.

Not sure if you agree David?

I do agree.

User
Posted 07 Feb 2017 at 18:54

Infusion 5 Day 1

Working In A Coalmine lyrics - Lee Dorsey

Workin' in a coal mine

Goin' down down down

Workin' in a coal mine

Whop! about to slip down

 

My tune of the day.

The song worked, my PSA has dropped from 5.04 to 3.83 and all other bloods results were good.

 

Infusion 5 completed without any problems.

3 weeks to half time.
User
Posted 07 Feb 2017 at 18:58

Yeeeeee-hiiiiii!

Great news David. Keep on trucking.

 

User
Posted 07 Feb 2017 at 22:03

Great news David,

Great to see that your PSA is coming down.

I am slightly ahead of you.

I am on infusion 5 Day 14 and feeling fine. All my tiredness and bone aches gone. Chemo is fine for me

Last Chemo cycle, infusion 6 is a week today and I cannot wait.

I find your journey inspiring David, keep going strong.

Regards

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 07 Feb 2017 at 23:43
Brilliant news!

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 07 Feb 2017 at 23:48

Well it has been pretty much a good news day all round :-)

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

User
Posted 08 Feb 2017 at 07:48

A quick query.

It is great to see David's Psa falling during his Chemo treatment. My Psa results are also following a similar fall, but what does it physically mean for those like myself with secondary mets?

Does it mean those tumours are receding or even going away or is that too much to wish for?

Regards

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 08 Feb 2017 at 12:21

Originally Posted by: Online Community Member

It is great to see David's Psa falling during his Chemo treatment. My Psa results are also following a similar fall, but what does it physically mean for those like myself with secondary mets?

Does it mean those tumours are receding or even going away or is that too much to wish for?

An excellent question. I think they are receding. I don't think they are going away. They only way I'll know which of these is fact is if and when I'm next scanned.

User
Posted 08 Feb 2017 at 12:33

Not necessarily receding but being fatally wounded so that they cannot replicate, I think. If they cannot replicate then they don't produce PSA. Cancer cells that are being fatally wounded will try to fight back which sometimes means an increase in PSA but when the damaged cells multiply they are distorted.

That was my understanding anyway :-/

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

User
Posted 10 Feb 2017 at 11:11

Infusion 5 Day 4

Originally Posted by: Online Community Member

I am slightly ahead of you on the Chemo front. I am on infusion 5 day 7. Must say infusion 5 was the worst to date from a tiredness and bone ache perspective

Snap! I started feeling crappy on day 3, all previous infusions I didn't feel crappy till day 4. Today, I'm hobbling around like a right old git. On day 4 for the four previous infusions I still felt OK enough to go for a session in the gym, not today, I'm sat here wrapped up, keeping warm and riding it out.

Somehow though I suspect I will improve before long and fancy a cheeky real ale. Food still tastes good though and for tonight Mrs_C is cooking a loin of venison. You're not meant to have rare meat when you're on chemo but sod that for a game of soldiers, I'll compromise with medium rare and if that puts me in my box, I'll die well fed. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

User
Posted 10 Feb 2017 at 15:14

David,

They noted from my blood tests that my vitamin D was very low so they gave me vitamin D supplements to ease the bone ache which helped considerably.

I was also feeling much better by day 8 to 10, after that 5th Chemo was a breeze.

My final 6th Chemo on Tuesday coming, I will keep you updated

Regards


Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 13 Feb 2017 at 10:56

Infusion 5 Day 7

I'm pretty much restored now from the period of crappiness. 4 days in total this infusion. It's never been for more than 3 days before. There does seem to be some logic to this. I assume chemo has a cumulative toxic effect. If true, it is reasonable to assume that the length of time that you are off colour will increase. Anyway, 4 days out of 21 I can live with and, hey, if I can't, I remind myself what the alternative is. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif

I've decided to introduce a new measure of crappiness. It's called the crappiness half-life. Think radaioactive half-life. The half-life point is reached when I fancy a beer again. This time around I didn't fancy beer at all on day 3, nor on day 4, but by the evening of day 5 (hmmm Homer likes beer) the attraction returned and two pints were dutifully swallowed (for medicinal purposes only you do understand, don't you?). So the half-life for this infusion is 2.5 days.

Onwards and upwards.

Edited by member 13 Feb 2017 at 12:07  | Reason: Not specified

User
Posted 13 Feb 2017 at 11:04

Great to hear this David

The rest of this cycle should be easy ifmine was anything to go by

I sent you a PM to check on your progress, but your post here confims the good news.

I have my final Chemo (cycle 6) tomorrow.

Regards

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 13 Feb 2017 at 11:37

Col, you have been superb in keeping this thread updated. The crappiness half-life will probably live on forever in these forum pages! Enjoy those beers x

Edited by member 13 Feb 2017 at 11:38  | Reason: Not specified

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

User
Posted 15 Feb 2017 at 04:39
Originally Posted by: Online Community Member

David,

They noted from my blood tests that my vitamin D was very low so they gave me vitamin D supplements to ease the bone ache which helped considerably.

I was also feeling much better by day 8 to 10, after that 5th Chemo was a breeze.

My final 6th Chemo on Tuesday coming, I will keep you updated

Regards


Dave

David,

My final (for the time being) docataxel chemotherepy (Infusion 6) is now complete.

So far so good, absolutely no side effects so far, as before.

My Psa is now down to 0.3.

It is strange, but I look at my very powerful chemical friend (docataxel), with a semse of regret that he now leaves me to continue with my journey, having helped me so much.

I believe the next scan awaits to confirm how helpful the chemo has been.

How are you doing?

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 15 Feb 2017 at 07:50

Dave,

Excellent news about the PSA.

Re me, I have a simple measure of how I am, does beer taste good, if yes, I'm good, if no, hunker down and trust that by tomorrow it will taste good again.

Re leaving docetaxel behind. As I understand it we may not have seen the last of it. I asked my Onco at my last consultation whether docetaxel could be used again. Her answer was, providing the PCa remains under control for at least six months after a course of docetaxel finishes then they can use it again. Otherwise it's on to cabazitaxel or radium 223 or ........ or it's time to meet Old Nick (she didn't say the last bit).

I bet our Lyn knows more about possible reuse of docetaxel, what say you Lyn?

David

Edited by member 15 Feb 2017 at 07:53  | Reason: Not specified

User
Posted 15 Feb 2017 at 09:05
Nice one David,

Here is hoping that our meeting with 'Old Nick' is a while off yet

Regards

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 23 Feb 2017 at 15:29

Infusion 5 Day 17

Update time. I'm glad to say there is little to say. Side effects haven't changed at all. Peripheral neuropathy and nail changes - no better or worse. Bum fluff still firmly attached to head. Weight gain firmly under control, I've only put on 4lbs since the start of chemo despite having to take steroids every day. It seems reasonable to assume that given that I've had 5 infusions that I won't now develop any further side effects. So far, it's been a walk in the park.

Next Tuesday sees infusion 6 of the 10 which means I will have topped the crest of the hill and commenced the trip down the other side. I know I should be careful what I wish for but I am looking forward to completing treatment and hopefully having some time treatment free (apart from 12 weekly Zoladex) before further treatment becomes necessary.

User
Posted 28 Feb 2017 at 20:50

Infusion 6 Day 1

Get Down lyrics - Gilbert O'Sullivan

Told you once before
And I won't tell you no more
Get down, get down, get down
You're a bad dog baby
But I still want you 'round

 

My tune of the day.

 

Once again the song worked, my PSA has dropped from 3.83 to 3.16 and all other bloods results were good.

 

Infusion 6 completed without any problems.
User
Posted 28 Feb 2017 at 22:06

Brilliant news. Rock on David!

E

User
Posted 01 Mar 2017 at 00:00

excellent

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

 
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