Just caught up with this coIU,
Although it will probably not be part of our journey I just wanted to say what a great job you are doing in .
A documenting your journey
B giving an honest recital
C doing it with humour.
Keep going and love your style.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
User
Hi ColU, I had my 3rd infusion last week at the Ricky Grant Day Unit, Torbay last week so I am about 3 weeks ahead of you. I had bad constipation after the first infusion but they gave me Laxido and I found that if I take one morning and one evening two days before the infusion and continue for 2 days after it has worked very well this time.
I had awful muscle and joint aches after the first time but since sorting the 'Dynorod' and also getting an exercise bike to have some 'adjustable' exercise it has been a lot better although I have been a bit more tired after each infusion.
It has been interesting reading your Blog as many others have said. I have been surprised how much my taste has been affected and keep looking online for ideas for what to drink and eat as most things taste horrible! Even real ale!
I have been accepted on the latest Arm of the STAMPEDE trial and so am taking Metformin twice a day- it reduces the blood sugar (it is a Diabetes drug). I am not supposed to drink any alcohol while taking it (I might try a half of real ale at Christmas!)
Anyway keep up the good work on your Blog.
Hope all goes well, Gromit.
User
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
Talking of Trump check this out
https://m.youtube.com/watch?v=SzcjexXZ6yg
User
Infusion 8 Day 14
I was chatting with a Croquet playing friend this weekend about my PCa. He said he was glad that I still had my 'sang-froid'.
Which brought this to mind.
3 Frenchmen and an Englishman are having a drink together in a cafe in Paris.
Englishman: You have some wonderful phrases in the French language. I've always wondered what sang-froid means.
1st Frenchman: I will explain.
The husband he comes home unexpectedly at lunchtime. He unlocks the front door. He goes into the lounge.
He hears noises from the bedroom upstairs. He listens for a few moments and then quietly goes out of the front door, locks the door and goes back to work.
That is sang-froid.
2nd Frenchman: Non, non, non! That is not sang-froid, that is savoir faire. I will explain the meaning of sang-froid.
The husband he comes home unexpectedly at lunchtime. He unlocks the front door. He goes into the lounge.
He hears noises from the bedroom upstairs. He goes up the stairs. He opens the bedroom door. He sees the wife in bed with the lover.
He quietly closes the bedroom door. He goes down the stairs. He goes through the lounge and then quietly goes out of the front door, locks the door and goes back to work.
That is sang-froid.
3rd Frenchman: Non, non, non! That is not sang-froid, that is laissez-faire. I will explain the meaning of sang-froid.
The husband he comes home unexpectedly at lunchtime. He unlocks the front door. He goes into the lounge.
He hears noises from the bedroom upstairs. He goes up the stairs. He opens the bedroom door. He sees the wife in bed with the lover.
He watches for a few moments and then says to the lover: continuer!
Now, if the lover can continuer, then that is sang-froid.
Today's MK.
A song about Napoleon, Done With Bonaparte:
https://www.youtube.com/watch?v=l-ClOcxsDDY
And, The Scaffolder's Wife:
https://www.youtube.com/watch?v=blC-scRu99A
User
Good to hear your update David,
I have now left the Chemo bus after 8 cycles. My Onco says I could do with a rest from treatment for the time being. I see him again in 6 weeks time for a PSA update (presentlly < 1.0) and as he tells me he has plenty of treatments up his sleeve I am not complaining.
You asked me what further treatments he mentioned. This time I made a note, so in no particular order here they are:
Cabazitaxel
Mitoxantrone
Zytiga / Aberaeron
Enzalutamide / Xtandi
Immunotherapy drugs
Well they seem enough to be getting on with , so hopefully, when they are exhausted there will be something new that comes along
All the best of wishes to you David
Regards
Dave
"Incurable cancer does not mean it is untreatable and does not mean it is terminal either" |
User
And so to my favorite MK song. The title track from his first solo album.
Soppy alert!
Whenever I listen to this song it makes my heart leap. When I hear it I think of Mrs_ColU. You see, she is my Golden Heart:
https://www.youtube.com/watch?v=dO_KA9EHJA0
She was swinging by the bangles in a main street store
A while before we met
The most dangerous angels that you ever saw
She spied her amulet
And she took a loop of leather for around her neck
And that was then the start
The most dangerous lady on her quarter deck
She found her Golden Heart
You found your Golden Heart
Then we swirled around each other and the thread was spun
to some Arcadian band
I would stop it from swinging like a pendulum
Just to hold time in my hand
And you shot me with a cannonball of history
And long forgotten art
I'd be turning it over as our words ran free
I'd hold your Golden Heart
I'd hold your Golden Heart
Nothing in the world prepared me for your heart, your heart
Nothing in the world that I love more your heart, your heart
Your Golden Heart
And every time I'm thinking of you from a distant shore
And all the time I sleep
I will have a reminder that my baby wore
A part of you to keep
And I'll send you all my promises across the sea
And while we are apart
I will carry the wonder that you gave to me
I'll wear your Golden Heart
I'll wear your Golden Heart
Nothing in the world prepared me for your heart, your heart
Nothing in the world that I love more your heart, your heart
Your Golden Heart
Edited by member 12 May 2017 at 19:52
| Reason: Not specified
User
Infusion 9 Day 22
This is the first time there has been a day 22, that's because my days on docetaxel are over. My lovely Onco took no persuading, as I expected she had already made the decision.
It was a really good consultation this morning, I came away feeling encouraged if not a little elated. Here's what transpired.
1. I am recovering well from the pneumonia. Therefore, no more Aunty B's after I finish the course tomorrow. No need for a CT scan of the lungs and no need for a Bronchoscopy (Yessssss! Result! I was not looking forward to that baby! They can give you a sedative it seems but I'm an ex-hippy, they'd have needed to drug me up at least as high as the highest high I had back in the summer of lurve in '69 because I'd probably have done a runner when da man said "now ColU, open wide"). A further chest X-Ray will be performed in 4 weeks time.
2. I'm going into a period of no treatment apart from 12 weekly Zoladex. Scans will be done again in August 2017 and my next consultation with my lovely Onco will be at the end of that month. However, I must let her know if I experience new symptoms. Bloods will now be taken every 7 weeks.
3. PSA last time was 4.98. My educated guess for my next reading was 8.5. I'm obviously educationally sub normal. Actual reading was 4.85. Happy, happy, happy.
4. What's she got left in her box of tricks? Cabazitaxel. Mitoxantrone. Stilboestrol. Radium 223. Dexamethasone. Bisphosphonates. Trials.
A good day.
David
User
Docetaxel - was it worth it?
We will look at the costs and the benefits. The only way I've got of measuring the benefits is to use PSA as an indicator of whether treatment is working or not. Now we know it is an imperfect measure, PSA can drop but the PCa can still be spreading in the background. However, it's all we've got, if we don't use it then all decisions regarding all treatments are being taken in the dark in the hope that they work but with no way of knowing whether they do until expensive scans are taken. So PSA is what we've got and it is that I will use in defining the benefits.
Costs
1. Hair loss. Not something that bothered me so I consider this a zero cost item.
2. A few crappy days , usually 3, each 21 day cycle. All bearable and thus a low cost item.
3. Peripheral neuropathy, minor in fingers but more marked in toes and feet. Not a pleasant thing but not painful so no pain killers needed. It doesn't affect my ability to walk so it doesn't have a negative impact on my quality of life.
4. Skanky nails, hands and feet. Again not pleasant but not painful so no pain killers needed.
5. Oedema in ankles and feet. Not pleasant but not painful so no pain killers needed.
6. Pneumonia. This has been a substantial cost. Two weeks of feeling pretty bad and quality of life significantly impaired. There will probably be a couple more weeks before I am fully restored.
Benefits
1. My PSA at the start of docetaxel was 26.28. It is reasonable to assume that without docetaxel it would of continued to rise. I can't estimate how far it would have risen but in the 27 weeks I've been on docetaxel it would have been far higher, maybe in the region of 70 to 100. My PSA now is 4.85. During the time on docetaxel, with the exception of the last two weeks, I've maintained a pretty good quality of life.
Conclusion
The benefits outweigh the costs and if I were to be faced with the same choice again I would opt for docetaxel, although I might stop after infusion 8. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif
User
Good luck for the treatment ! And I'm sure you writing about it here will be helpful to lots of people.
User
Hope all goes well tomorrow and you have minimal side effects.
User
Infusion 1 Day 1
Infusion 1 completed without any dramas. I had frozen pineapple cubes in my mouth for the entire one hour infusion plus a few more minutes after it ended. After about the fourth cube I found it quite an unpleasant experience. My tongue and palate seemed to become more and more sensitive to the cubes and what felt like an acid ice burn built up. Two hours later now and that feeling is still there but is gradually receding. We'll see how long it takes to disappear. However, if I don't get any problems with taste in the next 20 days then I am going to credit the frozen pineapple cubes with this and I will use them again for further infusions. If I do get problems with taste then I will probably try pure ice cubes next time.
As of now I have zero side effects.
Edited by member 15 Nov 2016 at 20:26
| Reason: Not specified
User
Glad it all went well :-)
My husband might be having first session tomorrow if white blood cells high enough. If it goes ahead it will be 80% dose so that they can monitor response of white cells. He will have bloods in day 8 and if the levels are ok then they will try 100% for the second round.
User
Many thanks, David.
Last week, I turned down the offer of early chemo but it's still available to me and your experience is valuable info for me.
Dave
Not "Why Me?" but "Why Not Me"? |
User
Col I am simply loving your updates .... Boooo hurray grrrrrrr indeed :-)
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
PS you might have overdone the pineapple a bit - I think Stan just had 3 or 4 cubes during an infusion, not the whole pineapple!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Good to hear it's going well so far, David. I'm sure that much-anticipated pint of ale tomorrow will help the Ducolax do its work!
User
Infusion 1 Day 6
So my period of purdah starts tomorrow - days 7 to 15 being when the white blood cells and thus the immune system are at their lowest ebb.
No gym for me during this period but lots of walking in the fresh air to compensate for the lack of gym sessions.
No pubs for me either. Ye Gods, that's 9 days or 216 hours or 12,960 minutes or 777,600 seconds with no pub! Either I've died and gone straight to hell or I'm living in Frinton-On-Sea. Oh well, here we go, just 9 days, then days 16 to 21, it's party time. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif
User
Hi David - it might have been hot food :-)
Nurse recommended Chlorhexidine mouth wash and this plus salt water has really helped.
Hope you have a really good week ahead of next cycle.
User
Infusion 1 Day 16
Purdah over, it's party time for the next 6 days (hmmmm, maybe 2 or 3 days, I can't party as well now as when I was a mere lad).
User
Great news, David! It sounds as if you've got it timed so that you'll be at your best by Christmas. This time last year Tony was doing well on Enzalutamide - it didn't work for as long as we'd hoped, but for long enough to give us a happy Christmas, and a February holiday in the Canaries. Hope the chemo continues to do its stuff without impairing your quality of life too much, and that it brings lasting benefits.
Marje
User
Hello David
Thanks so much for your upbeat posts, My husband starts his journey on docetetaxel on the 11 January. And although I know everyone's experiences are different it's good to get info first hand.
Have a great Christmas and enjoy all that lovely beer 🍻
User
Infusion 2 Day 3
This is going to be rather graphic so please don't read on if you'd rather not think about bowel habits. I'm explaining what's happening to me in order to try to help others who have similar problems.
I beginning to hate Ondansetron with a passion. The Dynorod (2 x Dulcolax) hasn't worked. It did for the first infusion, see above. I'm someone who has always been very regular with bowel habits. Constipation has rarely been a problem. I admit to some paranoia regarding constipation. So I went to my GP this morning and am now on 2 x Fybogel and 2 x Laxido in the morning and 2 x Fybogel, 2 x Laxido and 1 x Dulcolax in the evening. Hopefully this will work.
I am still determined to find a preventative measure to stop this occurring with each infusion and I hope to report the measures that work in the not too distant future.
User
Hi, Gromit here again. I had missed your note about Ondaneston- I was given 8mg to take for 2 days after the first 2 infusions but this time they have not given me any and I have had not ill effects. They said the Prednisolone should sort out any nausea.
Cheers, Gromit.
User
For what it's worth, I had a look at the copious notes we kept on Tony's treatment (also at Torbay, Gromit!) while on Docetaxel. He was always reporting me about his bowel movements (or lack of same), and I'm afraid I just used to put my fingers in my ears and go, "La-la-la, just sort it!".
It seems the only antiemetic he was given, or needed, was the one they give intravenously at the time of the infusion. He settled on taking 2 doses of Laxido on Days 1, 2 and 3, then one dose on Day 4, after which normal functioning was restored.
He didn't bother with the pineapple and didn't have any but the briefest distortion of taste. He continued to enjoy wine and beer after the first week of the cycle.
Laxido became a daily necessity later on, once morphine pain relief was used, but the doses stated above seemed to sort him out during the chemo. He tolerated the chemo extremely well, and the only complications were a couple of infections, one of which entailed being taken into the hospital for three days in an isolation ward.
Sadly, the early chemo didn't apparently do much to prolong his life, but I suppose for everyone who gets minimal benefit, there is someone else who derives huge gains from it. Let's hope you guys are among those for whom it kicks this horrid disease into the long grass for a good while.
Marje
User
Marje, I think we are of similar mind here. David hates getting bunged up and I'm sympathetic but there's not much more I can do except shove loads of vegetables into him! I hope one of these strategies using Laxido etc. resolves the problem. If not, I'll continue with the sympathy and be very happy to see a smiley face emerging from the bathroom. But I don't need a running commentary so I'll be keeping fingers for the ears at the ready!
Linda
User
So glad to hear your news, and that the treatment isn't impairing your good spirits. This time last year, Tony's blood tests were the best since diagnosis, thanks to the wondrous effects of Enzalutamide - the best Christmas present he could have had! Yes, ride that wave and make the most of every day (and every pint, and every turkey sandwich - just balance it all out with some more sprouts!).
Good luck with the rest of the chemo, David.
Marje
User
Hi david
Great to see your psa reading has dropped! Keep riding that wave with joy.
Lovely reading your doxetaxil comentary.
Lesley x
User
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
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
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
Great update Col - nearly half time already!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
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
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
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
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
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
Yeeeeee-hiiiiii!
Great news David. Keep on trucking.
User
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
Brilliant news!
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
User
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
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
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
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
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
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
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
Brilliant news. Rock on David!
E
User
Good news David.
Good to see your PSA dropping like a stone.
Long may it continue.
Dave
"Incurable cancer does not mean it is untreatable and does not mean it is terminal either" |
User
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
That's a brilliant result Dave :-)
User
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
Fantastic result! Way to go Dave.
Cheers
Eleanor
User
I recommend more beer. And maybe some pork scratchings.
Look after yourself.
E
User
Originally Posted by: Online Community MemberInfusion 6 Day 20Side 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.
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
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
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
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...
E
x
User
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
its great to hear that everything is going the right way, I'm half way through my Chemo at the moment and PSA has dropped dramatically down to 19 from 247!!!! Docetaxel is working well, although i feel shite at the moment next one due next week.
Keep the faith
Baldyman
User
Hi all
Graham has had to go into hospital after infusions 3 and 4 due to high temperature and very low blood count. Saw the prof on Tuesday and just having infusion 5 as I type this. They have given him some injections to take away to self administer at home to try to combat the low blood count going forward. His right leg has swollen from ankle to above the knee, this is a new thing, they checked for blood clot but thankfully this was negative, prof not worried and said it was quite common side effect of the chemo. Graham asked if he would be a candidate for 10 cycles but prof said no, 6 is enough. Graham is early chemo so maybe this makes a difference in the number of cycles.
Apart from this and feeling exhausted from around day 4 to a few days before next infusion he is ok and in good spirits.
Just as an aside and an observation from me really: when he has the high dosages of steroids just before and after the infusion he goes complete hyper, talks non stop and is really restless, on the good side I can get loads and loads of man jobs done around the house if I get the timing right😀
Best wishes to you all
Yvonne.
User
Blooming heck CO why didn't you ring me I could have told you the magnesium sulphate wouldn't work that's what I use on my dogs for a sore foot😄
Infections need Aunty Bs make that your new Mantra.
Keep going my friend you are nearly there.
BFN
JulieX
NEVER LAUGH AT A LIVE DRAGON |
User
Infusion 8 Day 1
PSA up from 3.12 to 3.38 and all other bloods results were good.
I talked this over with my lovely Onco plus my current experiences with peripheral neuropathy, finger & toe nails and mild oedema. She saw no reason not to continue with the full chemo doses and authorised infusions 8 and 9. I meet with her again on the day of infusion 10 which is scheduled to be the last one.
Am I worried about any of the above? Nope. Worry is a useless emotion, it does no good, it just makes things worse. Therefore, I choose not to tolerate it.
Infusion 8 completed without any problems.
Today's MK.
A song about the Boys from the Blackstuff:
https://www.youtube.com/watch?v=QA1g33J5NjA
And the US Presidential handover, there are a few words here that Mr Trump should listen to:
https://www.youtube.com/watch?v=H1axx2FJUTg
Edited by member 13 Apr 2017 at 06:56
| Reason: Not specified
User
What a star you are David! Keep grooving on down...
Hugs
Eleanor
PS not sure Trump is worth any more thought than your toe nails - and probably a great deal less.
User
Another take on sang froid
https://m.youtube.com/watch?v=YDY3T_cpNJ8
User
Infusion 9 Day 1
PSA up from 3.38 to 4.98. My readings whilst on chemo have formed an inverse normal curve. Unfortunately it looks like the recent rise in readings are moving up at a faster velocity than they moved down. My guess, from consulting the graph I have drawn, is that my next PSA reading in three weeks time will be in the region of 8.5. There will be much to discuss with my lovely Onco.
I think my hopes of having a break in treatment until the end of the summer are looking very over optimistic.
Infusion 9 completed without any problems.
Today's MK.
A song about shoes:
https://www.youtube.com/watch?v=Q5jiKCKAJjQ
And a song about the writer, Beryl Bainbridge:
https://www.youtube.com/watch?v=Vczr6WNmvtw
User
Oh that's a bugger David...Really sorry that the likelihood of a break in treatment is receding.
Only cheering aspect is that all these infusions are improving my knowledge of MK no end; an unexpected and entirely delightful side effect of having an OH with PCa. And of discovering you!
Cheers
Eleanor
x
User
Infusion 9 Day 2
I have to admit I was feeling a bit sorry for myself yesterday. It wasn't the result I was hoping for. However, I've had a good rub down with an oily rag and the old dog is back, woofing, wagging his tail and chilling out, just like Oddball:
https://www.youtube.com/watch?v=f5cL-h3Pj1o
User
Glad you've got your mojo back!!
We can't control the winds - but we can adjust our sails |
User
A few developments yesterday and today. A slightly elevated temperature and a general 'off' feeling led David to call the hospital as per general instructions. Blood tests indicated an infection and antibiotics were administered via drip. A chest x-ray indicated an infection in the left lung so they have kept him in to administer further antibiotics and monitor progress. The decision to do this wasn't made till well after 5.00 pm so almost all the evening food had gone http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif! However, they managed to find him a bit of lancashire hotpot http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif!
Hopefully he'll be out in 2 - 3 days.
Linda
User
Please pass on best wishes to David, chemo can be a b**tch. He is in the best place of course and I'm sure will bounce back quickly. I did not have a great chemo experience early last year, but the crap passed and onwards and upwards.
"And Rocky said, doc it's only a scratch. And I'll be better, I'll be better doc as soon as I am able" |
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Oh No,
Please pass on my very best wishes to David.
And it was all going along so well
Regards
Dave
"Incurable cancer does not mean it is untreatable and does not mean it is terminal either" |
User
Hi Linda
My oh had to go in twice with the same thing and it was David that reassured me we were not making a fuss when I was worried. Please send my regards
Yvonne (Mountain stream)
User
I hope things continue to improve and you are released soon. I'll have an Otter Ale for you!
Cheers, Gromit.
User
Looking forward to full working order .😄
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
User
Hi Colin,
Glad to hear positive thinking
Barry
User
Good to see you are in safe hands David,
In hindsight I am glad my Onco bailed me out after Infusion 8, although I was happy to carry on, but enough is enough David.
All the best for a speedy recovery.
Regards
Dave
"Incurable cancer does not mean it is untreatable and does not mean it is terminal either" |
User
Really sorry about the pneumonia :-( but good to hear that they are really on top of it. I'm not surprised you are nervous about the 10th cycle - hope you get to have a useful discussion about it with the consultant. As you have managed 9 I wonder what the 'real' extra benefits are of having one more.
User
It's funny isn't it - a friend of mine has just spent 2 weeks in hospital after her chemo caused a pulmonary embolism but the onco is insisting that she should continue with the 6th and final cycle. Not sure I would be beating down doors to have number 10 in your position ColU :-(
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
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What can I say? I'm hoping you'll be out soon.
User
Infusion 9 Day 12
My lovely Onco, Dr S, has been to see me. She said the neutros were still down at 0.6 so I would be staying in and continuing the AV Antibiotics until Monday when she will review the situation and see me again then.
I asked about Infusion 10. She said if the neutros were still not right by Monday she would cancel it. If they were right she might suggest going ahead but with a reduced dose. I didn't question this, that can wait to Tuesday week when I have a consultation with her.
I asked her the most important question of all re beer (Mrs_ColU brought me a bottle of Abbott Ale when she visited this morning). I said I'd have it at least 2 hours after and at least 2 hours before the 3rd and 4th IV's today. She said that's OK. She wanted to know whether I was going to have it to celebrate something special. I said no and also said "boys like beer". She said she wondered whether I intended to have it whist watching the Eurovision Song Contest. I said I'd rather have a frontal lobotomy than watch that. In fact I'd need a frontal lobotomy to watch that.
Edited by member 13 May 2017 at 20:50
| Reason: Not specified
User
Sorry that you are in hospital David but impressed by Mrs C's devotion to your beer diet (and the niceties of your nostril hair grooming). No wonder you think so highly of her!
I'm sure she is missing you tons. Meanwhile I hope that you are tutoring fellow patients in the appreciation of MK and the need for occasional WTF/FFS explosions, two improvements in my life that are entirely down to you!
Love
E
x
User
Glad to hear your home David
Rest up mate
Don't deny the diagnosis; try to defy the verdict |
User
As the other half of one that's likely to begin the Docetaxel treatment soon you have been incredibly helpful, thank you so much . My husband is about to undergo scans etc. In order to begin his chemotherapy after five years of hormone treatment. Just one question, I've been looking at thermometers which I know I will need to monitor his temperature there are so many which one did you choose and why?
Thank you again take care
User
Glad to hear that you are home again David and your adventure with Docataxel is at an end.
The plan must now be to have a proper treatment break if possible to allow you to recover.
All the best
Dave
"Incurable cancer does not mean it is untreatable and does not mean it is terminal either" |
User
Hi David
So glad your chemo treatment has been relatively bearable. You've been so brave going through with it all and your reporting has been candid yet humourous which is a credit to you. Thanks for providing all to come with a thorough journey through this treatment.
Best wishes on the results and future.
Chris
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I bought a Boots digital thermometer. It cost £9.99 on 3/11/16. I can't remember why we selected it apart from the fact that Boots felt like the best place to go. I did ask an assistant whether any one particular thermometer was best and she said they were all accurate and recommended the one we bought. It is an under tongue thermometer. We were told that ear thermometers understated your temperature.
User
Hi Bluetrew,
I have an electronic ear thermometer and it is excellent. It takes the temperature in a couple of seconds. I used to take my temperature at least morning, noon and night. One evening I took it and it was 38.5 C so I called the hospital and they said come in straight away as I had neutropenic sepsis and was in for 5 days. It is quite likely if I had a thermometer that took a couple of minutes I would not have taken my temperature often enough and could have been in real trouble.
I hope his chemo goes well, I finished my 6 sessions about 2 months ago- it is taking longer than I expected to get my strength back!
Best wishes, Gromit.
User
Super duper Aunty Bs and No Alcohol that's a bummer 😜
Life Jim it's not as we know it !
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
User
Sorry to here of this temporary setback David,
It really has been like the wheel coming off at the last bend, but at least you finished the race. Good on you.
I'm not sure that our friend Docataxel will be getting quite the complimentary end of treatment report that you otherwise may have given it.
Wishing you a speedy recovery.
Dave
"Incurable cancer does not mean it is untreatable and does not mean it is terminal either" |
User
Oh rats and double rats! The no beer regime is just the last straw. Do hope that you are back holding up the bar very soon David and that you find some appropriate MK tunes to cheer you through the next fortnight. Here's one (waaaay before your time) to distract you from the demon drink...Frankie Lane and Cool Clear Water: https://www.youtube.com/watch?v=2jj7qab6KC4
E
x
User
Good luck for Tue David , I know it seems like it has all gone a bit Pete Tong at the last hurdle but I for one and I am sure there are others who are rooting right behind you
Just to throw a song in ! You have got the MOVE like JAGGER.
Keep on Moving and Grooving .😍
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
User
Best wishes David for Tuesday. So glad you're feeling better at last. All quite frightening for you!! So hoping the Chemo has kicked some ass
User
Glad your feeling better David. Hope all does well Tuesday
Yvonne
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Best wishes for a speedy recovery David,
Regards
Dave
"Incurable cancer does not mean it is untreatable and does not mean it is terminal either" |
User
User
Hope you have continued to improve - fingers crossed for tomorrow
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
All my bits crossed too David...I'm eating my customary bar of chocolate but have switched from gin to beer in empathy.
Hope you are back on form and grooving to MK again very soon.
Eleanor (Ruth)
xxx
User
I read this excellent thread in it's entirety yesterday and eagerly await todays news. My thanks to all posters, I'm soon to begin Chemotherapy as Enzalutamide is losing its effectiveness, it is so helpful to be able to read posts from those have walked this road before me. Best Wishes to all........
User
User
Originally Posted by: Online Community MemberInfusion 9 Day 22PSA last time was 4.98. My educated guess for my next reading was 8.5. I'm obviously educationally sub normal. Actual reading was 4.85. Happy, happy, happy.
What's she got left in her box of tricks?Cabazitaxel.Mitoxantrone. Stilboestrol.Radium 223.Dexamethasone.Bisphosphonates. Trials.
A good day.
David
Good news David. Plenty of options still and a good Chemo holiday to look forward to.
Look forward to contributing to your new thread as this one closes.
Regards
Dave
"Incurable cancer does not mean it is untreatable and does not mean it is terminal either" |
User
That is fantastic news, I'm very happy to hear of your positive results!
User
And that's it, we're all done here.
So in the words of the last episode of the greatest comedy series ever made, M*A*S*H:
"Goodbye, Farewell and Amen."
Show Most Thanked Posts
User
Good luck for the treatment ! And I'm sure you writing about it here will be helpful to lots of people.
User
Pre-chemo briefing at the Cherrybrook ward of the Royal Devon and Exeter hospital
This took place this morning. A nice ward and a nice nurse. I list below what I learnt. You may find it useful to refer to the post below in order to make sense of what follows:
http://community.prostatecanceruk.org/posts/t12167-Surviving-Docetaxel-Chemo#post151949
Peripheral neuropathy
The occasional pins and needles that are temporary is OK. Not being able to do up zips or buttons is NOT OK. Get on the telephone to them immediately.
Sense of taste impaired
She sees nothing wrong with using frozen fresh pineapple cubes during infusions. Therefore, I will be doing this.
Immune system impaired
If I get any of the many symptoms of infection and my temperature is 37.5 degrees C or more then get on the telephone to them immediately. The most dangerous days in the 21 day cycle are days 7 to 15 so best to avoid gyms and crowded places on those days. Vitamin D supplements – she’s not sure and will check.
Damage to nails
She agreed with my Podiatrist, which cream I use is irrelevant, it is the massaging in of the cream that could be beneficial.
Sore mouth
She agreed with my dentist who says use my normal medium brush because it is more effective at removing plaque and only switch to a softer brush if I encounter problems. She agreed to use of Dental Floss and Tepees gently and to soften them by immersing in warm water if necessary. She did not agree with rinsing with salt water after brushing or with the preventative use of Corsodyl or Difflam whilst my mouth feels OK, when that stops being the case then these measures should be adopted. Teeth should be brushed gently twice a day.
Bloods
These should be taken one day (and no more than one day) before each infusion.
Joint pain
This is common on days 2 and 3 of each cycle. Paracetamol should be used. Also warm baths (not possible for me because of my left shoulder problems) or application of heat pads to the joints can also help.
2pm tomorrow for my first infusion. 210 days to go and counting. Onwards and upwards.
David
Edited by member 16 Aug 2017 at 06:16
| Reason: Not specified
User
Hope all goes well tomorrow and you have minimal side effects.
User
Thanks for this really clear and helpful list - knew some of the info but not all (half way through the chemo and doing pretty well with plenty of 'normal' days when my OH feels just fine). They have got this down to a fine art I think/hope.
Good luck with your sessions. Hope all goes smoothly.
Eleanor
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Infusion 1 Day 1
Infusion 1 completed without any dramas. I had frozen pineapple cubes in my mouth for the entire one hour infusion plus a few more minutes after it ended. After about the fourth cube I found it quite an unpleasant experience. My tongue and palate seemed to become more and more sensitive to the cubes and what felt like an acid ice burn built up. Two hours later now and that feeling is still there but is gradually receding. We'll see how long it takes to disappear. However, if I don't get any problems with taste in the next 20 days then I am going to credit the frozen pineapple cubes with this and I will use them again for further infusions. If I do get problems with taste then I will probably try pure ice cubes next time.
As of now I have zero side effects.
Edited by member 15 Nov 2016 at 20:26
| Reason: Not specified
User
Glad it all went well :-)
My husband might be having first session tomorrow if white blood cells high enough. If it goes ahead it will be 80% dose so that they can monitor response of white cells. He will have bloods in day 8 and if the levels are ok then they will try 100% for the second round.
User
Infusion 1 Day 2
It has been confirmed that it's OK to take Vitamin D tablets whilst on Chemo.
My tongue is recovering from the bashing the frozen pineapple cubes gave it. I'm minded to try a mixture of frozen pineapple cubes and ice cubes next Infusion, probably 1 pineapple followed by 2 or 3 ice, and hope this does the trick.
In the battle between Docetaxel and Ondansetron (the anti sickness tablet) both of whom are Constipators (Booooo!) and Fybogel and Dulcolax both of whom are anti Constipators (Hooray!) the bad boys are winning (Grrrrrr!). I shall be doubling the resources available to Dulcolax in order for it to make the fight back tonight.
Apart from that I have zero side effects.
Roll on Friday when I shall have my first post Chemo pint of real beer. Photo to be published here.
Edited by member 16 Nov 2016 at 17:05
| Reason: Not specified
User
Many thanks, David.
Last week, I turned down the offer of early chemo but it's still available to me and your experience is valuable info for me.
Dave
Not "Why Me?" but "Why Not Me"? |
User
Infusion 1 Day 3
Dulcolax has kicked the Constipators' butts (Hooray!).
I know it's very early doors but I am immensely encouraged by the way this has started. I'm going to the gym, playing croquet (the RT has restored enough movement and reduced the pain in my left shoulder such that I can play again), enjoying my food and generally living a normal life. I know I've got to pull my horns in between days 7 and 15 but I can live with that.
Zero side effects today.
User
Col I am simply loving your updates .... Boooo hurray grrrrrrr indeed :-)
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
PS you might have overdone the pineapple a bit - I think Stan just had 3 or 4 cubes during an infusion, not the whole pineapple!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Good to hear it's going well so far, David. I'm sure that much-anticipated pint of ale tomorrow will help the Ducolax do its work!
User
Infusion 1 Day 4
Mrs_ColU developed a slight sniffle in the nose last night. The result – I’m dispatched to the guest bedroom (Boo Hoo!).
So to the picture. Like all fashion shoots I think I should describe where the various elements of the photo can be obtained.
Football shirt. A essential part on the North East Essex man’s wardrobe. A snip at £45 from Colchester United Football Club.
The beer glass. Provided by one of the finest breweries in the country, The Rebellion Beer Company at Marlow. Obtainable at their Public Nights along with unlimited beer, for a mere £6.50. Happy days!
The beer. 500ml of Hops ‘N’ Honey from Skinners Brewery, Cornwall, £1.50 per bottle from Tesco (providing you buy 4 – which is of no use to man nor beast, it’s so good, you need many more than 4!).
The haircut. The ‘Chemo No. 4 special’ from League of Gentlemen Barbers of Exmouth, £7 plus tip.
The smile. Free of charge when you ply me with beer.
Today’s medical update – Zero side effects.
User
We're on 'sniffle alert' here too. One of our sons has picked up a heavy cold. Don't want him to feel bad about it so trying to avoid shouting 'DONT SNEEZE ANYWHERE NEAR DAD!)
User
I must clarify the situation. He wasn't so much 'dispatched' as 'skedaddled off to' the spare bedroom and my sniffle has now almost disappeared so he might come crawling back soon. However, it was a sensible move and he did bring me tea in bed this morning.
The football shirt was a gift from a friend for a wedding anniversary and bears the number '25' (big clue!). That was 20 years ago and I'm surprised it's still in one piece.
I think we'll cut down on the pineapple for the next session.
User
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Infusion 1 Day 5
The last couple of days since combating the constipation I have to admit my insides feel like they've been cleaned out by a hamfisted Dynorod operative. I wasn't ready for the Ondansetron anti sickness tablets and I've paid the price for not being prepared for the constipation. The Ondansetron is brilliant at combating nausea but it bungs you up like a good 'un. The Chemo nurses tell you to take one Ondansetron on the evening of the infusion and then two each day for the next two days. I'll be ready next time and will prepare by taking Fybogel for a couple of days prior to the infusion and then 1 Dulcolax each evening whilst I'm taking the Ondansetron. Hopefully that will make the Dynorod operative redundant.
I had my first side effect today, mild nausea. I've got some tablets (Metoclopramide) to use if needed but haven't felt the need to as yet. The only significant effect the mild nausea had on me is that my stomach does not fancy wine at all. No real loss being a beer drinker.
Mrs_C is over her sniffle so it's back to the marital bed tonight (Whey Hey!).
User
Infusion 1 Day 6
So my period of purdah starts tomorrow - days 7 to 15 being when the white blood cells and thus the immune system are at their lowest ebb.
No gym for me during this period but lots of walking in the fresh air to compensate for the lack of gym sessions.
No pubs for me either. Ye Gods, that's 9 days or 216 hours or 12,960 minutes or 777,600 seconds with no pub! Either I've died and gone straight to hell or I'm living in Frinton-On-Sea. Oh well, here we go, just 9 days, then days 16 to 21, it's party time. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif
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Infusion 1 Day 7
So I'm into a quieter time and hopefully will experience little change in my condition. I won't be posting as frequently but will update when appropriate and will report changes in my condition whether good or bad. Fingers crossed it will just be good things.
User
Infusion 1 Day 11
Half way through purdah and absolutely no change in the way I feel. For the record here is a list of the potential side effects of Docetaxel Chemo as defined by Macmillan cancer support and my current status in respect of these.
Risk of infection – No.
Bruising and bleeding – No.
Anaemia – No.
Feeling sick – Yes - Minor, no meds needed.
Diarrhoea – No.
Loss of appetite – No.
Sore mouth – No.
Taste change – No – In fact just the opposite. For the last two years I’ve suffered from rhinitis. The Prednisolone I now have to take every day as part of the chemo treatment has alleviated this to a degree. Food (and real beer) now tastes even better than before. However, I am keeping a careful eye on how much I eat. 15 stone is the right weight for my height (6 feet and 5 inches – we make ‘em big in Essex) and that’s the way I want it to stay.
Peripheral neuropathy – No.
Hair loss – No.
Skin changes – No.
Nail changes – No.
Build up of fluid – No.
Muscle/joint pain – No.
Shortness of breath – No.
Eye problems – No.
Hand-foot syndrome – No.
Blood clot – No.
User
Glad you are doing so well :-)
My husband is one day behind you. He has quite a lot of tiredness but difficult to know what is caused my chemo and what is down to HT.
In the last day he has developed sore mouth and 2 x mouth ulcers. Has done a salt mouth rinse.
User
sallyyy,
I'm sorry to hear about Hubby's troubles. My fatigue seems to have lessened considerably since I started chemo compared to when I was taking Enzalutamide. I'm still on 12 weekly Zoladex. I am at a loss to know why it's better for me and worse for Hubby.
Was there anything that you feel may have brought on the sore mouth such as over zealous teeth brushing or hot spicy food for instance?
David
User
Hi David - it might have been hot food :-)
Nurse recommended Chlorhexidine mouth wash and this plus salt water has really helped.
Hope you have a really good week ahead of next cycle.
User
Infusion 1 Day 16
Purdah over, it's party time for the next 6 days (hmmmm, maybe 2 or 3 days, I can't party as well now as when I was a mere lad).
User
Glad the cycle is going well :-)
User
Infusion 1 Day 21
I partied well. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif Now back to reality. Preparing for Infusion 2 tomorrow. I'm starting to rattle again with all the pills I have to take around infusion time. Today it's been:
1 x 2.5mg Vitamin D tablet every day.
1 x 10mg Amlodipine tablet every day.
2 x 5mg Prednisolone tablets after breakfast every day.
4 x 2mg Dexamethasone tablets after breakfast and lunch for the next 3 days.
1 x 8mg Ondansetron (henceforth to be known as 'The Basturds' because of their ability to put my bowels into lock down mode) twice a day for the next 2.5 days starting tomorrow. Preventative Fybogel and Dulcolax (if needed) is now being taken in order to combat The Basturds and put the hamfisted Dynorod operative out of business.
The ice cubes are ready as are a few pineapple chunks (rather than the entire annual pineapple production of Costa Rica that I used last time).
I don't believe it's possible to 'tempt fate'. What I say has no effect on my physical or mental condition. I love black humour and think that it and believing in 'tempting fate' is mutually exclusive. So here goes:
So far, the side effects of Deocetaxel Chemo have been a walk in the park. Long may this continue to be the case. And I fervently hope that for those of you now undergoing Deocetaxel Chemo and for those of you that will have it in the future, that it is a walk in the park for you as well.
Toodle Pip!
David
Edited by member 05 Dec 2016 at 18:16
| Reason: Not specified
User
Infusion 2 Day 1
Infusion 2 completed without any dramas. A good meeting with my lovely Onco, Dr S, this morning. My PSA has dropped from 26.28 to 13.28 and all other bloods results were good, she's happy, Mrs_C is happy and all I can say is three words, Wooo Foooking Hooo!
First post Infusion 2 pint will be on Friday afternoon. I shall publish a full review here but I'll tempt you now by saying that this beer is a perfect pairing with Christmas pud.
User
Great news, David! It sounds as if you've got it timed so that you'll be at your best by Christmas. This time last year Tony was doing well on Enzalutamide - it didn't work for as long as we'd hoped, but for long enough to give us a happy Christmas, and a February holiday in the Canaries. Hope the chemo continues to do its stuff without impairing your quality of life too much, and that it brings lasting benefits.
Marje
User
Infusion 2 Day 2
Preventative measures have not defeated The Basturds. Back to Dynorod.
User
Hello David
Thanks so much for your upbeat posts, My husband starts his journey on docetetaxel on the 11 January. And although I know everyone's experiences are different it's good to get info first hand.
Have a great Christmas and enjoy all that lovely beer 🍻
User
Hi David,
My Hubby who is also called Dave finished a course of docetaxel on the 9th Sept, 6 x sessions, intravenously (3 weekly gaps). He has also just completed (2nd Nov) 20 x fractions of RT.
He was diagnosed in Feb age 52 with Advanced Metastatic PC. PSA reading 1050, T4 M1 N1 Gleeson score 5 + 4.
He is under the Christie Hospital on the Stampede Trial.
Dave did extremely well through all his treatments and continued to work through them and I don't know how he did it. He is my Hero!
He did suffer with his taste buds and a 'metal' taste in his mouth, the only thing that would help was anything strawberry flavour, that included the flavoured ciders which was quite lucky!. He also used to drink pints of Vimto which also did the trick. We even bought lots and lots of strawberry shower gel !!
His nails did suffer and they became extremely sore, he did contract an infection and had to have antibiotics, this seemed to help a little. He still suffers from a problem with his nails now but they are healing slowly.
Nose bleeds were also a side effect and he did have 2 or 3. These were frightening but apparently quite 'normal'.
Tiredness was a big issue and also aching limbs, but the aching limbs bit gradually improved.
Good luck everyone, it will be over before you know it.
Remember PMA ( positive mental attitude).
:)
User
Infusion 2 Day 3
This is going to be rather graphic so please don't read on if you'd rather not think about bowel habits. I'm explaining what's happening to me in order to try to help others who have similar problems.
I beginning to hate Ondansetron with a passion. The Dynorod (2 x Dulcolax) hasn't worked. It did for the first infusion, see above. I'm someone who has always been very regular with bowel habits. Constipation has rarely been a problem. I admit to some paranoia regarding constipation. So I went to my GP this morning and am now on 2 x Fybogel and 2 x Laxido in the morning and 2 x Fybogel, 2 x Laxido and 1 x Dulcolax in the evening. Hopefully this will work.
I am still determined to find a preventative measure to stop this occurring with each infusion and I hope to report the measures that work in the not too distant future.
User
Just caught up with this coIU,
Although it will probably not be part of our journey I just wanted to say what a great job you are doing in .
A documenting your journey
B giving an honest recital
C doing it with humour.
Keep going and love your style.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
User
Infusion 2 Day 4
Well that's a weight off me mind. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif
Anyway 'nuff said about bowels for now, beer is much more interesting than bowel.
User
Now the important business. Today's beer. And the winner is:
McEwan's Champion, 4 for £6 from Mr Tesco.
I can hear the real ale drinkers amongst you now. "Quelle surprise! What are you thinking of David? McEwan's? The Scottish brewer who brought us McEwan's Export in the 60's and 70's that along with Watney's Red Barrel and Ind Coope Double Diamond controlled the so called keg ale market for so long with their fizzy, ersatz, rubbish? Have you taken leave of your senses man?"
Well no, it hurts me to say it but McEwan's have come up with a rather good bottled ale. Jet black in colour, lovely roasted malts that impart a flavour of liquorice with a long finish. This ale is made for christmas pudding with brandy butter. It packs in 7.3% alcohol so this is a one bottle ale otherwise you may find you weave a rather wibbly wobbly course when you proceed from A to B.
So well done McEwan's. There is a place in heaven for brewers seeking redemption.
User
Infusion 2 Day 7
Back to the B word that isn't B for Beer.
I've had a chat with the Chemo nurse at the Royal Devon and Exeter about preventative measures regarding Ondansetron. There is no magic bullet, however, I don't give up easily. Here's what I'm going to try prior to Infusion 3:
1. Two days prior to the Infusion make sure I'm taking onboard plenty of water so I am as well hydrated as possible.
2. The night before the Infusion take 1 Ducolax so that my bowel is well purged come the Infusion.
3. For the day of the Infusion and the two following days, cut out all meat from my diet but supplement with other protein such as eggs and fish and eat an absolute shedload of fruit and vegetables. My logic is that these foods are more easily passed through the system.
I will report back whether or not it works although you probably won't need to check the forum because you'll easily hear my cry of YEEEEESSSSSS if it does work.
Edited by member 13 Dec 2016 at 17:44
| Reason: Not specified
User
Hi ColU, I had my 3rd infusion last week at the Ricky Grant Day Unit, Torbay last week so I am about 3 weeks ahead of you. I had bad constipation after the first infusion but they gave me Laxido and I found that if I take one morning and one evening two days before the infusion and continue for 2 days after it has worked very well this time.
I had awful muscle and joint aches after the first time but since sorting the 'Dynorod' and also getting an exercise bike to have some 'adjustable' exercise it has been a lot better although I have been a bit more tired after each infusion.
It has been interesting reading your Blog as many others have said. I have been surprised how much my taste has been affected and keep looking online for ideas for what to drink and eat as most things taste horrible! Even real ale!
I have been accepted on the latest Arm of the STAMPEDE trial and so am taking Metformin twice a day- it reduces the blood sugar (it is a Diabetes drug). I am not supposed to drink any alcohol while taking it (I might try a half of real ale at Christmas!)
Anyway keep up the good work on your Blog.
Hope all goes well, Gromit.
User
Hi, Gromit here again. I had missed your note about Ondaneston- I was given 8mg to take for 2 days after the first 2 infusions but this time they have not given me any and I have had not ill effects. They said the Prednisolone should sort out any nausea.
Cheers, Gromit.
User
Hi Gromit,
I see you are in Teignmouth, I'm in Budleigh Salterton, we can wave at each other over Lyme Bay. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif
Give sucking the ice cubes and frozen pineapple cubes during the infusion a try. I can't prove that they stop me getting the metallic taste, maybe I wouldn't get it if I didn't use them but I'm not taking the risk of finding out.
Thanks for the tips re Laxido. If what I'm proposing to do prior to Infusion 3 doesn't work then I will follow your formula prior to Infusion 4.
I'll be interested to see if they give me Ondansetron for Infusion 3. I'm going to print out what you've said and show them it if they do. I will say "Ooooiii, if this works for Gromit, might it work for me?".
Re Metformin and no beer, Good God, I'll know I've died and gone straight to Hell if they ever put me on that.
Edited by member 13 Dec 2016 at 15:15
| Reason: Not specified
User
For what it's worth, I had a look at the copious notes we kept on Tony's treatment (also at Torbay, Gromit!) while on Docetaxel. He was always reporting me about his bowel movements (or lack of same), and I'm afraid I just used to put my fingers in my ears and go, "La-la-la, just sort it!".
It seems the only antiemetic he was given, or needed, was the one they give intravenously at the time of the infusion. He settled on taking 2 doses of Laxido on Days 1, 2 and 3, then one dose on Day 4, after which normal functioning was restored.
He didn't bother with the pineapple and didn't have any but the briefest distortion of taste. He continued to enjoy wine and beer after the first week of the cycle.
Laxido became a daily necessity later on, once morphine pain relief was used, but the doses stated above seemed to sort him out during the chemo. He tolerated the chemo extremely well, and the only complications were a couple of infections, one of which entailed being taken into the hospital for three days in an isolation ward.
Sadly, the early chemo didn't apparently do much to prolong his life, but I suppose for everyone who gets minimal benefit, there is someone else who derives huge gains from it. Let's hope you guys are among those for whom it kicks this horrid disease into the long grass for a good while.
Marje
User
It's worth a lot, a hell of a lot, thanks Marje.
Noted for Infusion 4 if my veggie fix doesn't work.
User
Marje, I think we are of similar mind here. David hates getting bunged up and I'm sympathetic but there's not much more I can do except shove loads of vegetables into him! I hope one of these strategies using Laxido etc. resolves the problem. If not, I'll continue with the sympathy and be very happy to see a smiley face emerging from the bathroom. But I don't need a running commentary so I'll be keeping fingers for the ears at the ready!
Linda
User
Infusion 2 Day 11
Half way through purdah again and it's same old, same old. I feel just the same as I did at this time in the last infusion cycle.
For the record, here is the list of the potential side effects of Docetaxel Chemo as defined by Macmillan cancer support and my current status in respect of these.
Risk of infection – No.
Bruising and bleeding – No.
Anaemia – No.
Feeling sick – No.
Diarrhoea – No.
Loss of appetite – No.
Sore mouth – No.
Taste change – No.
Peripheral neuropathy – No.
Hair loss – Yes. Booo Hooo! Me hairs coming out! I'm moulting. It won't be long before I'm polishing the top of me 'ead. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-tongue-out.gif
Skin changes – No.
Nail changes – No.
Build up of fluid – No.
Muscle/joint pain – No.
Shortness of breath – No.
Eye problems – No.
Hand-foot syndrome – No.
Blood clot – No.
User
I hope you are going to change your profile picture at the appropriate time?
You are doing great - have a wonderful Christmas with food that tastes proper x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
He he! That will be a bit of a wardrobe challenge. Apart from my ColU shirt, I haven't got a thing to wear. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif
Thank you. I hope you and John also have a great Christmas.
User
Infusion 2 Day 17
Last update before Infusion 3 next Wednesday. Nothing has changed, happy days! For any of you contemplating chemo, I can't guarantee your bodies will react in the same way as mine. I'm only 20% of the way through. Things may change and get tougher but they may not. I have no regrets taking this course of action and I honestly believe that you can approach it too without fear. The NHS seems to be getting pretty good at this chemo stuff.
Mrs_C is going to fatten me up, Pheasant and Pyne's Farm free range chicken for Christmas Day (separate birds, not an all in 1) followed by Diplomat pudding. Yum yum yum.
G&T, check. Dark rum and coke for Mrs_C, check. Various red and white wines, check. Bottle of my home made Orange wine, check. Bottle of Sauternes to go with sweet course, check. Bottle of 10 year old tawny port. check. And, most importantly, plenty of lovely real ales, check.
I will be fattened and pickled.
Happy Christmas all and I wish us all the most joyous new year for ourselves and our loved ones (and Colchester United).
David
User
Infusion 3 Day 1
Infusion 3 completed without any problems.
My resolve to consume loads of vegetables and no meat in the day or two before the infusion and for the two days after in order to combat The Basturds, weakened in the face of Christmas leftovers, so I've adopted Gromit's and Marje's advice to use Laxido.
So to the scores on the doors. My PSA has dropped from 13.28 to 7.44 and all other bloods results were good. I know these drops won't go on for ever but I have to say:
'Woop de dozzy do! Go on my son, get in there!'
If you could synthesize, bottle and sell, the feeling of elation I got when hearing these results, then you would be a multi-zillionaire. It was as good as watching your team smack in a last gasp cracker to win the local derby game, 5-4.
I'm going to ride this wave for as long as it will support me. This old dog is going to wag his tale for a while yet.
I might have a cheeky beer tomorrow night.
Edited by member 29 Dec 2016 at 11:13
| Reason: Not specified
User
So glad to hear your news, and that the treatment isn't impairing your good spirits. This time last year, Tony's blood tests were the best since diagnosis, thanks to the wondrous effects of Enzalutamide - the best Christmas present he could have had! Yes, ride that wave and make the most of every day (and every pint, and every turkey sandwich - just balance it all out with some more sprouts!).
Good luck with the rest of the chemo, David.
Marje
User
Hi david
Great to see your psa reading has dropped! Keep riding that wave with joy.
Lovely reading your doxetaxil comentary.
Lesley x