Docetaxel Chemo – the highs and the lows - - Page 3Advanced or metastatic cancer

User

Posted 01 Mar 2017 at 10:30

I definately look forward to joining your new thread when it comes along.

Now that my 6 cycles are complete I am awaiting the Pet scan on 8th March and the results of that.

My Onco has said that if the results are good he will keep me off further treatments for a while (apart from my 3 monthly Zoladex injections), but if he feels that more Chemo may be benefitial at this stage he may recommend a further 2 cycles as I stood up well to the chemo. A bit of wait and see going on presently.

All the best.

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"

User

Posted 01 Mar 2017 at 19:57

Well done

User

Posted 02 Mar 2017 at 19:42

I'm piggy backing this thread because I learned today that I shall start chemo in a couple of weeks. Not troubled about that at all, partly thanks to all the reassuring input from blokes who have been through it. I was surprised to be told that I would have up to TEN cycles, though. Anyone, any thoughts on why so many cycles? I have three known Mets, two in groin area, one behind my windpipe and then a suspicious small spot in my liver. PSA has been gradually rising (to 4.6) as abiraterone's beneficial effects over the past three years have eased. I'm perfectly fit so expect to be able to handle the process and have been assured that the process will stop if/when I can no longer handle it. Just a bit surprised not to be offered the standard (?) six cycles. Comments invited!

User

Posted 02 Mar 2017 at 20:55

AC,

I asked this very question of my Onco last Tuesday. I was minded to do so by dave_stuart488 who is also having late chemo (rather than early chemo which is given as standard at start of treatment nowadays). My question was "why do some Oncos prescribe 6 cycles of late chemo whereas others prescribe 10? I know of one chap who is just as fit as me and is just having 6 cycles". I think she said that some Oncos prescribe 6 because that is what is used for early chemo. She prescribes 10 because she says it was empirically proved back in 2001 when docetaxel replaced another chemo drug (can't remember the name but I think it started with an m) that 10 was the most effective number in providing the longest period of respite following treatment.

User

Posted 04 Mar 2017 at 08:52

Infusion 6 Day 5

F'ing Ondansetron ('The Basturds')!

The previous 3 infusions I'd reached a nice balance between preventing any significant constipation and taking The Basturds to prevent nausea. Did the same again this time, complete bowel lock down for two days. Dynorod called in again.

If I ever get my hands on the person who developed this evil little substance! Grrrrr!

So if you are unlucky enough to have to take Ondansetron, never assume you've got it tamed, it's as mean as the meanest thing that has ever been called mean.

User

Posted 04 Mar 2017 at 10:45

If you looked back over all the members on here that have had chemo I think you would find that 10 cycles is more common and 6 cycles only really made an appearance with the 'early chemo' trials.

Sorry about the basturds, Col.

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

User

Posted 04 Mar 2017 at 16:59

I can answer my own question having done some research. It seems that the optimum treatment has been shown to be 10 cycles. More confers no benefit. Fewer not such good results in terms of years of survival. So 10 it will be for me if I can take it. Strange to think that will take me right through the summer, probably having to wear a beanie, to disguise hair loss. On second thoughts perhaps a straw hat will do!
AC

User

Posted 04 Mar 2017 at 18:57

AC, treat yourself to one of the bamboo beanies made specially for chemo patients. The straw hat might be a bit too harsh if your head gets sore :-(

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

User

Posted 04 Mar 2017 at 21:12

My brother's thin straight hair has grown back thick and curly so there's always that to look forward to!

User

Posted 15 Mar 2017 at 08:35

Checking in to see how you are doing David.

As you know I completed my 6 cycles last month and had my PET scan last week. Well the results are in.

Our friend Docatoxal has not only reduced my lung mets by 70% but has gone and reduced my bone mets by 90%.

My Onco is so impressed he has gone and booked me in for 2 further Chemo cycles, so I am back on the Chemo bus next Tuesday.

All the very best to you.

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"

User

Posted 15 Mar 2017 at 10:24

That's a brilliant result Dave :-)

User

Posted 15 Mar 2017 at 16:49

That is very good news Dave.

Did your Onco give further information on what it all means, i.e. if the lung mets have decreased by 70% and the bone mets by 90% does this mean you can expect a reasonably long period of remission before further treatment becomes necessary?

Re the further two chemo cycles, did the Onco explain what he hoped the beneficial effects would be from the further chemo?

Any info you can provide would be appreciated because it's not going to be too long before I'll be asking these very same questions regarding myself.

User

Posted 15 Mar 2017 at 17:40

David,

My Onco is not sure if this means a longer period of remission or not. He gave me the option of resting my treatment presently and monitoring my PSA with him every 6 weeks. He said the PSA could stay low (presently 0.3) for some time (months) or it could raise quickly at which point more Chemo would be needed. but by that time may not be successful as Chemo presently and my fitness to fight the cancer may not be as good as it is now. The alternative is to make hay when the sun shines and carry on with the Chemo while it is doing a good job. I plumped for that option.

Regards

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"

User

Posted 15 Mar 2017 at 23:32

Fantastic result! Way to go Dave.

Cheers

Eleanor

User

Posted 15 Mar 2017 at 23:32

Fantastic result! Way to go Dave.

Cheers

Eleanor

User

Posted 19 Mar 2017 at 17:23

Infusion 6 Day 20

Side effects during this infusion have worsened. The peripheral neuropathy is a bit more of a problem, it isn't pain as such, just the numbness and tingling isn't particularly pleasant. The finger and toe nails don't look so good, one finger and one toe nail look a bit dodgy, I hope I don't lose them, or if I do, then they aren't painful. However, all that said, I see no reason not to want to continue on with Infusion 7.

User

Posted 19 Mar 2017 at 18:47

I recommend more beer. And maybe some pork scratchings.

Look after yourself.

User

Posted 19 Mar 2017 at 20:18

Originally Posted by: Online Community Member

Infusion 6 Day 20

Keep going David.

I start Infusion 7 on Tuesday, so we will be neck and neck on our journey.

All the best

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"

User

Posted 19 Mar 2017 at 23:09

Not sure about the beer , toenails and porkscrathing advice but 😆 But way to go Dave you are almost there I have got so much respect for you . Keep going.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 21 Mar 2017 at 17:35

David,

Infusion 7 Day 1:

Back on the Docetaxel bus today after my short lived "final" 6th Chemo session on 14th Feb. Very limited side effects so far, but my PSA has shot up to 2.4 from 0.3 in just 5 weeks from my last "final" chemo session which is a bit of a worry to say the least.

Onco says not to worry as these new Chemo sessions (likely to be 4 more to bring it to 10 as yourself) will likely bring the PSA right down again, but based on the PSA jump, a longer period of remission for myself, that you talked about looks quite a hope from where I am sitting.

I would value your thoughts or anyone elses on this

It looks like you new thread that you will be starting after the Chemo is over 'From docetaxel to ??? - the interregnum' will be most interesting and I cannot wait to join it

Regards

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"

User

Posted 21 Mar 2017 at 18:13

Dave,

What confuses me is how the scans show such dramatic reductions in the mets and yet PSA has jumped. Que? Does not compute.

Hopefully, the remaining 4 sessions will bring it down again but I think the challenge for me as well as for you will be how long it will stay down after chemo ends.

I was hoping that the 'From docetaxel to ??? - the interregnum' thread would cover quite a long period of time, I will continue to hope for the best but prepare for the worst.

I'll post my Infusion 7 Day 1 thread later on this evening.

David

User

Posted 21 Mar 2017 at 18:29

Thanks David,

I'll hold on to the fact that I saw the pictures from the PSMA Pet Scan and they showed a real reduction in the mets from last time and hopefully the PSA jump is just a blip.

I am reminded of that wonderful quote from John Cleese in the film Clockwise at moments like these:

"It's not the despair, Laura. I can take ... despair. It's the hope I can't stand"

Ha ha.

Look forward to your report later.

Regards

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"

User

Posted 21 Mar 2017 at 19:36

Infusion 7 Day 1

The days of the 'down' tunes are over, my PSA has dropped from 3.16 to 3.12 and all other bloods results were good. So the best I think I can hope for now is that the PSA results bump along the bottom until the end of chemo and, this is really pushing it, don't start to rise for at least the rest of the summer after chemo ends.

Still, it's an ill wind that blows no good. I was having real trouble finding suitable 'down' tunes. Most I was finding related to .... cough .... intimate sexual practices .... cough.

Infusion 7 has had it's challenges. All went well up to the commencement of the 1 hour docetaxel infusion. It started and I settled down to suck my 18 ice cubes and 7 pineapple cubes. Nursey took great interest in this and wanted to know why. I explained that I'd been tipped off that sucking ice and pineapple cubes helped prevent taste changes and that so far for all 6 previous infusions food and beer had continued to taste great. I said that I couldn't be sure that this process had indeed prevented taste changes but that I was going to continue it for the rest of the infusions because I didn't want to prove whether it did or didn't work.

Anyway, having consumed 18 ice cubes and 6 pineapple cubes I popped the last pineapple cube into my mouth right on the hour mark, glanced up at the docetaxel bag and thought that looks rather full. Called over Nursey and she looks and says "it's only delivered 1mg of the 180mg dose". Oh says I, "that means I've had 20 seconds of the 1 hour dose". Now I confess at this point I nearly said loudly, 3 times, the name of a Muslim sect (clue, it's not Sunni) but I have a tendency to mispronounce and thought I'd better not. Instead I said "Oh golly gosh, I've just finished all my ice and pineapple cubes and there's still nearly an hour to go, wooops". Quick as a flash Nursey comes back with "at least now you'll be able to find out whether your measures really do work or not". To be fair Nursey was really apologetic but I did say that if this meant that me beer tasted bad for the next 21 days then she had better start running when she next saw me.

The upside for you though is that in a few days time I can tell you whether the ice and pineapple cube treatment is effective.

User

Posted 21 Mar 2017 at 19:47

Great to see we can keep our humour through all this and good to see you PSA still coming down so the Chemo is working. Great news

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"

User

Posted 21 Mar 2017 at 20:51

I feel it's time for a little diversion on this thread once again. We've had 'down' tunes and beer reviews. Now it's music.

The thing I most like doing is smiling, not for the smile itself, it's the things that make me smile that's the important bit.

Beer makes me smile, good food makes me smile, Mrs_ColU makes me smile (lots), playing croquet makes me smile especially so when I'm giving my opponent a good beating http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif and music makes me smile.

Music is also a great pain killer. Plug the headphones into the ears, play your favorite music and get transported away from all your worries, aches and pains.

For me, Coldplay, Leonard Cohen, Mumford and Sons, Of Monsters and Men, Status Quo, Tom Petty and the Heartbreakers, UB40 and The Who all make me smile. But king of them all is Mark Knopfler (MK).

MK is a great, great, guitar player but what makes him unique is his song writing. Most song writers compose songs about love, it's easiest to write love songs. MK does love songs as well but he also does songs about virtually anything else you can think of. A few examples of such songs:

Imelda Marcos, Sony Liston, a journeyman boxer, a sheep farmer, Napoleon Bonaparte, truck drivers, a racing car driver, a stock car driver, Remembrance Day, a piper who died in WWI, the scrapping of a ship, a Scaffolder's wife, the Waltz, Hanging day, Pirates, the Boys from the Blackstuff, Shoes, Cartographers, the Bushes (POTUS), the poet Basil Bunting and Beryl Bainbridge. And that's just a few.

I shall include a couple of his songs in each new post I make on this thread. I hope I've whetted your appetite. Here's three to be going on with.

Just to prove he can play the guitar - 'What It Is':

https://www.youtube.com/watch?v=vAxzr9BdnkA

MK and James Taylor singing the song about Cartographers - 'Sailing to Philadelphia':

https://www.youtube.com/watch?v=tnCK2LgeIvM

And if this one doesn't get your toes tapping nothing will, the song about the journeyman boxer - 'Broken Bones':

https://www.youtube.com/watch?v=729ua1DRWRs

Edited by member 22 Mar 2017 at 08:06 | Reason: Not specified

User

Posted 22 Mar 2017 at 00:24

Mmmm - very nice selection there young David. And I can't deny the quality of the playing or the writing. But we need something sloppy for us girls as well...

So I'll see your MK and raise you Cohen's 'I'm your man' for possibly the chat up lines ever. Though I have led a sheltered life.

And Roberta Flack 'First time ever I saw your face' for my beloved (aw - how romantic is that!)

And Nina Simone's 'Feeling Good' just to remind us that we still can.

Contented sigh...

User

Posted 22 Mar 2017 at 00:25

I meant 'possibly the best chat up lines ever'. Too much wine and not enough sleep.

User

Posted 22 Mar 2017 at 07:30

All good stuff, especially Nina.

And LC:

"And if you want a doctor
I'll examine every inch of you"

I dread to think how many times in my life I've thought exactly that (but I've never said it).

User

Posted 22 Mar 2017 at 07:40

I'm having 'First time ever I saw your face' at my funeral but the Easther Bennet version.

I am sticking; with Rod Stewart's version of 'Handbags and Gladrags' in my hand.

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

User

Posted 22 Mar 2017 at 08:16

Dave,

One thought. Hopefully your Onco still has Abi and Enzo in his bag of tricks for you. Enzo did well by me.

David

User

Posted 22 Mar 2017 at 08:30

Thanks David,

Yes he has.

He has told me he has up to 5 further lines of defence post Chemo if needed, so I am hoping the journey will continue to be a long one as I am sure yours will be.

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"

User

Posted 22 Mar 2017 at 09:38

Dave,
Has he told you what those 5 further lines of defence are? I'd like to compare notes.

User

Posted 22 Mar 2017 at 10:05

David,

He reeled them off pretty quickly and I should have noted them down, but I will do so when I see him next in few weeks time, but he did mention further chemo (one of his patients has has 37 sessions over a period of time, can you believe that?), he mentioned Abi and Enzo and immunisation drugs, but after that my mind went a bit blank.

On a positive note he did say that there has been such a transformation over the past 5 or more years with treatments that will be dwarfed by the new treatments that are coming up in the next few years, so you and I need to hang on in there for a few more years yet David

Dave

Edited by member 22 Mar 2017 at 10:09 | Reason: Not specified

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"

User

Posted 22 Mar 2017 at 10:56

By the way how are you feeling today David,

We are both on Infusion 7 day 2 as I recall.

i am feeling as bright as a button and am going out for a long walk.

Regards

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"

User

Posted 22 Mar 2017 at 12:19

Perfectly normal (I've just come back from the gym) apart from my bowels in lock down mode as usual. Day 2 is always OK, it's days 3 to 6 I feel crap.

User

Posted 23 Mar 2017 at 16:06

Infusion 7 Day 3

Ice and Pineapple cubes (refer back to Infusion 7 Day 1). So far I've noticed no significant change in taste. Therefore, we can conclude that one of the following must be true:

1. Docetaxel does not affect my sense of taste.

2. Completing the sucking of one hours worth of Ice and Pineapple cubes when there is still 59 minutes and 40 seconds to go does provide some protection against changes in taste.

I prefer to believe the second is true and will continue to use Ice and Pineapple cubes for my last 3 infusions.

It's day 3 and I've got no feelings of crapiness, again see previous posts. It's always cut in by day 4 at the latest in the past so I won't count any chickens yet. I just hope it doesn't mean they've given me a placebo instead of docetaxel. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif

Bowls are still in lock down. I'm due to take the last of The Basturds, for this infusion, tonight. I don't know where that pill is going but it ain't going down my throat. In fact, I think I shall torture it and make it wish it had never been manufactured. I'll be using the Dynorod again tonight and if that hasn't worked by tomorrow morning I'm off down the Doc's for a full power wash!

So onto today's fix of Mark Knopfler (MK). It's back to our yoof! MK is a Geordie.

“Basil” is a song about MK’s summer job working for the Evening Chronicle newspaper in Newcastle, where he met the poet Basil Bunting, who was also working for the paper at the time.

https://www.youtube.com/watch?v=kfeRBua8nGk

And then he moved to London.

https://www.youtube.com/watch?v=PR0WeuJePi8

User

Posted 23 Mar 2017 at 20:46

Hi, when it was suspected I may be getting peripheral neuropathy my consultant said he may need to reduce the amount of Docelaxel to prevent it from happening. Fortunately the numbness was only temperory and it went away by itself.

However, this is not to be taken lightly and I was shocked when looking up this condition and found this https://www.gov.uk/peripheral-neuropathy-and-driving I am not saying that you could be banned from driving, but I cannot see what other reason you need to inform the DVLA. If your consultant has not written it down anywhere and you are maybe just assuming what the numbness is, I would seriously advise not to mention it. If you have an accident your insurance may be voided.

I have just completed my 10 cycles of Docetaxel and it was eight months of Hell, so a bit envious of the way you seem to be breezing through the treatment (well done!). I get the "verdict" next Wednesday from my consultant. Stress is not a big enough word! will let you know what happens

Best regards

Norman

User

Posted 23 Mar 2017 at 21:22

Norman,

Thanks for the advice. My peripheral neuropathy, if that's what it is, does not affect my ability to walk or grip. However, I will check out the driving implications with my Onco when I next see her.

I'm sorry to hear you've had such a bad time with docetaxel but I hope it will prove to be worth it when you get your results.

David

User

Posted 24 Mar 2017 at 08:31

David,

I do not appear to be getting any of this peripheral neuropathy that is being spoken of, but I have the dry throat from hell this morning on day 4 infusion 7.

I think some ice and pineapple may be on the agenda this morning.

Other than that no issues.

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"

User

Posted 24 Mar 2017 at 10:45

Infusion 7 Day 4

The Basturds have released their grip. Power wash cancelled.

Crapiness has started but doesn't seem anywhere near as bad as it was for the last couple of infusions.

So, all in all, happy face is in order so we'll have some happy MK songs.

Border Reivers were raiders along the Anglo-Scottish border hundreds of years ago, MK, with his lyrics, links that heritage to the truck drivers that moved goods from Scotland to England, and vice versa. Falsifying documents as drivers had to keep records of how many hours they had driven, hence he is a "thiever" stealing time.

https://www.youtube.com/watch?v=_6gzkjAkiVg

Back to school and learning to dance, the song contains a very non-PC line "And a fat girl got left at the side". Naughty MK.

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

User

Posted 25 Mar 2017 at 00:45

Hello both

Sorry to intrude on your conversation but wanted to ask you something: my OH is undergoing docetaxal and has just had his 4 th infusion. After the first infusion he had a terrible time with constipation ( I did tell him your story Dave but I guess he had to experience it himself to really understand) anyway he seems to have that under control now. Infusion 2 was ok but then on infusion 3 his temperature rose to 38.4 so following advice from the info pack from the hospital we contacted them and was told to go in straight away. He was in for a week whilst they fed him antibiotics almost constantly through a drip and did all kinds of tests to try to find out what was causing the temperature to rise. All of the tests came back clear and once his blood count started to rise and his temperature became stable he was able to come home. Then exactly the same thing happened again last week and he is back in hospital again trying to get his temperature down and looking for causes which they still can't find. They have given him some drug to boost his white blood cells What I was wondering is if you guys take your temperature regularly particularly during your crappy days and if you do do you contact the hospital? We have been advised to contact if the temperature is greater than 37.5. I am just wondering if others follow this advice or whether we might be being over cautious.

User

Posted 25 Mar 2017 at 02:09

A friend of ours has been in and out of hospital since infusion 4 onwards - and yes, she takes her temperature regularly. She is a Marie curie nurse when not having chemo so I guess she knows better than anyone how dangerous it can be.

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

User

Posted 25 Mar 2017 at 06:28

Originally Posted by: Online Community Member

Sorry to intrude on your conversation

No intrusion MS, this thread exists in order to try to help others, intervene whenever you need to.

Originally Posted by: Online Community Member

What I was wondering is if you guys take your temperature regularly particularly during your crappy days and if you do do you contact the hospital? We have been advised to contact if the temperature is greater than 37.5. I am just wondering if others follow this advice or whether we might be being over cautious.

I don't take my temperature regularly but I do take the advice the hospital gives about potential infection very, very, seriously. Infection can lead to sepsis and that can quickly lead to death or severe, life changing, complications.

The reason I don't take my temperature regularly is that apart from the few crappy days I feel pretty damn well. However, the thermometer goes straight in my mouth if I have any doubt and I'll be straight on the phone if it reads 37C+. You are not being over cautious, you are being very sensible.

David

User

Posted 25 Mar 2017 at 07:31

I take my temperature every morning when i take the tablets. So far so good.

Regards

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"

User

Posted 25 Mar 2017 at 13:47

Thanks to you all.

Other than this he is feeling quite well. He was really worried that they would stop the chemo but they have assured him that they are really happy with his progress and they will carry on as usual.

Thanks again, I feel reassured now.

Yvonne.

User

Posted 26 Mar 2017 at 17:01

David, how are things going today?

Infusion 7 Day 6

I feel I am cheating the system and Mr Docetaxel is ignoring me, because today I feel as good as yesterday which is pretty good.

Normally days 3 - 8 were the most challenging from a tiredness perspective and then it was plain sailing, but this time nothing. My taste is still fine, I have been on a 2 mile walk in the glorious sunshine each day with no tiredness.

Hopefully this is not the calm before the storm

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"

User

Posted 26 Mar 2017 at 17:11

Infusion 7 Day 6

Crapiness is receding. All is good.

Originally Posted by: Online Community Member

Hopefully this is not the calm before the storm

Yikes!!! Don't be giving me those negative waves http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif:

https://www.youtube.com/watch?v=KuStsFW4EmQ

Edited by member 26 Mar 2017 at 18:53 | Reason: Not specified

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