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Cabazitaxel Next

User
Posted 11 January 2018 18:35:31(UTC)
I rarely post about myself, but think that others may be interested in my experience and the change in my treatment.

First up, I have religiously tracked my PSA over the past ten years, imbuing it with an undeserved significance. It is currently 5.9, having risen from 1.1 at the end of a shortened (because I gained pulmonary embolism) course of docetaxel. The chemo was to deal with soft tissue mets (I have never had bone mets). These were in the connective tissue which binds the bowel to the spine, in my urethra (although I call this the mothership, as I believe it to be a remnant of the original PCa in my removed prostate)and in my liver. Unfortunately, since the chemo ended in August my PSA has risen and the PCa has spread, to remove all the benefits of the chemo, although no new sites are indicated. The shadow in the liver does look worryingly large! It is clear to me that in my case at least the prednisolone and then dexamethasone since August have achieved zilch.

The plan now is up to ten cycles of cabazitaxel then if necessary a rechallenge with docetaxel. I am not yet at the last throw of the dice, but getting too damned close for comfort!

Future guidance on PCa developments will be obtained via scans and not PSA!

So the lessons I have learned are 1. tay fit, which I shall need to be to see out the next ten cycles Fortunately, I am. 2. Don't trust the PSA number, it tells a very partial truth. 3. Rely on the evidence of your own eyes Stephen viewing scans!

AC
User
Posted 17 January 2018 18:13:14(UTC)

Folks, spent an almost enjoyable couple of hours at the Arden Centre this morning. Discovered that nursing staff turnover has been extremely high since I was last there for docetaxel in August. Just about three familiar faces out of a couple of dozen there. Rather worrying! As I was there over lunch time, I experienced the curly cardboard sandwiches again. Note to self - ,bring your own next time! I was given the infusion much as with docetaxel, but Piriton and Ondansetron were delivered via i/v. Usual flush before and after the cabazitaxel infusion. No pills to take beforehand and only prednisolone to be taken daily between cycles. Am off the useless dexamethasone.

Now, it's just a case of waiting to see if there are side effects and then dealing with them. Will report how it goes.

AC

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User
Posted 12 January 2018 07:00:01(UTC)
Thank you for sharing this AC I wish you well in your treatment. I read everyone’s posts with great interest as my Dad navigates his way through treatment. I want to know as much as I possibly can do posts like yours are really helpful and appreciated. I must take a leaf out of your book and try to be more positive. Wishing you all the very best. PenP.
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User
Posted 16 January 2018 20:08:27(UTC)

Best wishes for tomorrow AC - kick its butt!

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


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User
Posted 11 January 2018 19:38:57(UTC)
AC, I hope the cabazitaxel does a good job for you. You have summarised your situation very succinctly.
I totally agree with you on PSA and scans.
Very best wishes,
Ian
User
Posted 11 January 2018 20:45:48(UTC)

Good luck with the cabazitaxel AC.

Excuse my ignorance but if it helped before Is a repeat of the chemo not possible

We can't control the winds - but we can adjust our sails
User
Posted 11 January 2018 20:56:42(UTC)

Cabazitaxel is another form of chemo Johsan, and if it goes okay AC will be able to try the docetaxel again afterwards.

AC, I like your determination x

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


User
Posted 12 January 2018 07:00:01(UTC)
Thank you for sharing this AC I wish you well in your treatment. I read everyone’s posts with great interest as my Dad navigates his way through treatment. I want to know as much as I possibly can do posts like yours are really helpful and appreciated. I must take a leaf out of your book and try to be more positive. Wishing you all the very best. PenP.
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User
Posted 12 January 2018 07:35:16(UTC)

Wishing you all the best AC with your next line of treatment

Bri

User
Posted 12 January 2018 08:02:05(UTC)

Hi AC

Having had both Chemo thought i would let you know my findings

Steroids

Docetaxel, high dose steroids taken before, on the day and day after turned me into a Duracell bunny, sleep for a few day was all over the place.

Cabi, steroid through a drip on the day, everything normal and sleep patterns stayed the same

Hair 

Used cold cap for both and kept hair on my head, with Docetaxel i lost all body hair with Cabi i lost nothing often wondered whether the cold cap on Cabi was needed

Nails 

No problems with either

Taste

With Docetaxel horrible taste for around 6 days, ice cream became a staple part of my diet, with Cabi very minor changes carried on eating as normal

Prior to starting  Cabi the chemo nurses said it was a lot harsher Chemo than Docataxel i found it a walk in the park compared with Docataxel and continued working, but then my results with Cabi was rubbish.

But we all respond differently to each treatment, i wish you well and hope you results are great

Si 

 

Don't deny the diagnosis; try to defy the verdict
User
Posted 12 January 2018 19:30:34(UTC)

Thanks to all for your thoughts. Positive thinking is in my blood and I can be no other way, fortunately.

I could have a repeat of the docetaxel, because it did work, and was stopped largely because I got PEs. It could be that with Apixaban having come to my rescue, I could take ten cycles of docetaxel and that might do the trick. My oncologist would be happy with this. I thought trying another approach first, arguably a more potent variety of chemo, was worth trying first, leaving the gentler docetaxel in reserve for rechallenging the PCa, later. As I found docetaxel, not exactly a "walk in the park" but relatively easy, I certainly hope to find cabazitaxel even easier!

User
Posted 13 January 2018 10:48:45(UTC)

hi AC

Good luck on this stage of the journey, fingers crossed its an easier path.


Ray

User
Posted 16 January 2018 17:54:36(UTC)

Only five days have passed and I start my cabazitaxel experience tomorrow. I rate that b****y well done by Coventry's Arden Cancer Centre! Great Service,, NHS!!

AC

User
Posted 16 January 2018 18:08:38(UTC)
That’s amazingly quick. Best of luck tomorrow.
User
Posted 16 January 2018 19:39:22(UTC)

Best wishes for tomorrow, Hope it goes well and is successful.

User
Posted 16 January 2018 20:06:25(UTC)

Good luck AC. I hope all goes well for you

We can't control the winds - but we can adjust our sails
User
Posted 16 January 2018 20:08:27(UTC)

Best wishes for tomorrow AC - kick its butt!

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


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User
Posted 16 January 2018 20:15:00(UTC)
Good luck for tomorow hope all goes well, ive followed your posts with interest as my OH is on this journey although a different path, your so informative and your knowledge and advice you give so freely to us all on the forum is amazing id just like to say thank you for taking the time to let us gain from your experience it means a lot...jo.xxx
User
Posted 16 January 2018 20:55:24(UTC)
All the very best for tomorrow AC I will be thinking of you and wishing you well. Is The Arden Centre at UHCW? Dad had his radiotherapy at UHCW. We thought everyone there was brilliant. Although the parking situation was shocking!
User
Posted 16 January 2018 21:03:02(UTC)
Good luck AC
User
Posted 16 January 2018 21:24:04(UTC)
Hope tomorrow is as hassle free and effective as there things can be
Dream like you have forever, live like you only have today
Avatar is northern lights whilst running in Iceland sept 2017
User
Posted 16 January 2018 22:22:22(UTC)
Good luck for tomorrow AC, we are at the oncologist on Monday for a review after finishing Radium 223 and we must surely start a new journey with PSA at 77. I’ll be thinking of you, hope it goes well.

Devonmaid xx
User
Posted 16 January 2018 22:28:48(UTC)
Good luck AC Hope all goes well. This treatment has been mentioned for my hubby further down the line. So will follow your journey with interest
Debbie x
User
Posted 17 January 2018 06:52:08(UTC)

Very best wishes AC.

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
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User
Posted 17 January 2018 18:13:14(UTC)

Folks, spent an almost enjoyable couple of hours at the Arden Centre this morning. Discovered that nursing staff turnover has been extremely high since I was last there for docetaxel in August. Just about three familiar faces out of a couple of dozen there. Rather worrying! As I was there over lunch time, I experienced the curly cardboard sandwiches again. Note to self - ,bring your own next time! I was given the infusion much as with docetaxel, but Piriton and Ondansetron were delivered via i/v. Usual flush before and after the cabazitaxel infusion. No pills to take beforehand and only prednisolone to be taken daily between cycles. Am off the useless dexamethasone.

Now, it's just a case of waiting to see if there are side effects and then dealing with them. Will report how it goes.

AC

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User
Posted 05 February 2018 18:12:46(UTC)

Just had oncologist appointment before starting second cycle. Like Si Ness, I've experienced an initial flare in PSA, which I trust will start to come down in a cycle of two. My PSA went up slightly from 5.9 to 7.3. Unwelcome! My experience was that the cabazitaxel behaved much like the docetaxel did. First day after chemo, when feeling the benefits of the other stuff infused as well as the Cabazitaxel, fine! Days two to five, some nausea for which domperidone wasn't brilliantly successful, but I coped. Thereafter smooth sailing with no side effects. Blood results ok, so onward and upward!

AC

User
Posted 05 February 2018 18:24:16(UTC)

Hi AC

Sorry to hear this but i hope like me you get a drop after the next cycle.

with regard nausea i had Emend three tablets worked wonders one before chemo then one each day after

Don't deny the diagnosis; try to defy the verdict
User
Posted 02 March 2018 18:22:34(UTC)

Is this the one you are looking for AC?

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


User
Posted 06 March 2018 18:34:26(UTC)

Lyn. Exactly. Thanks!

Here's the update. Second cycle went reasonably smoothly. Nausea and vomiting first few days. Found domperidone ineffective. Bigger dose needed as I'm a big bloke but not allowed, so I tried metoclopramide which does provide a higher maximum - up to 5 tablets in my case, though I've never gone above four. At the end of the cycle, my PSA had gone down marginally, so hopefully the flare is over.

Writing this just after a couple of days in hospital following vomiting/diahorrea. Food wouldn't digest and came back as though there was no way through. As this persisted over the weekend, I rang the specialist chemo nurse who hauled me in pronto. Side room in case I was infectious, lots of I/v rehydration and anti-nausea medication. Now fine. Lost a stone!

It seems for me the body's behaviour during a cycle just isn't predictable. More in 21 days.

AC

User
Posted 06 March 2018 18:54:09(UTC)
You always sound very positive AC despite your nausea and vomiting.
Hoping the next treatment goes well for you.
Ian.
User
Posted 06 March 2018 19:06:45(UTC)

Well every cloud has a silver lining I suppose - some would be thrilled to lose a stone :-/

Stay well, my friend

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


User
Posted 06 March 2018 19:16:28(UTC)

Ah Lyn, trouble is that half of the weight loss is fluid from my left leg - lymphodoema. Goes straight back on when I get back into my normal pattern. Mind you, I'm being very cautious about booze during the chemo, diet lemonade is my very boring thing! That tends to keep the weight down, too. It seems that being in bed most of the time, so horizontal, the leg loses its liquid. If I could walk around with my left leg wrapped around my right ear, Ministry of Funny Walks style, I'd probably be pretty slim, like John Cleese used to be!

AC

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User
Posted 06 March 2018 22:01:05(UTC)
Watching to see how you get on Arthur, can’t think the V&D is much to enjoy but your positive attitude is such a joy to read and I know it can’t be easy to present this way. So far so (nearly) good!

Good luck for number three.

Love Devonmaid
User
Posted 07 March 2018 18:04:00(UTC)

Devonmaid. Thanks for the thoughts but there's no Arthur here! My pseudonym is a protective barrier and doesn't even hint at my true initials. I can confirm that all signs of nausea have been banished but my word it is damned uncomfortable working the constipation from anti-nausea drugs out of my system. A blast it is not!

AC

User
Posted 07 March 2018 19:08:29(UTC)
Hi Ac (arther)
What a bugger ask for amend best anti sickness I have had
Seems like your PSA is following what mine did but you seem to be getting a lot more of the side effects
Should beable to give you some info on the testosterone thing soon
Keep smiling not many cycles left
Si
Don't deny the diagnosis; try to defy the verdict
User
Posted 08 March 2018 06:53:55(UTC)

Hi AC, hope you're feeling better today.
Transport

User
Posted 08 March 2018 23:50:49(UTC)

Hi, AC - still finding my way around this worthwhile site and have just come across your latest posts. Sorry to hear of your ongoing problems which obviously have not been helped by the nasty side effects. Trust all will settle down again soon ...

User
Posted 19 March 2018 16:34:40(UTC)

Update at 19 March. PSA still going down very gently, much more slowly than with docetaxel - 6.9, compared with 7.2 three weeks ago. It had better speed up or ten cycles will only halve it!

Side effects this time were a bit more unpleasant, nausea/vomiting persisted well beyond the first 4/5 days, but this may have been down to my concurrent labyrinthitis, for which the rather unconvincing treatment is exercises involving moving the head horizontally and vertically with eyes open then closed, followed by horizontal movement with focus on a fixed point. MRI scan of my left ear arranged which may throw some light on this irritating condition, whose origin may lie a few years back when I had a prolonged ear ache and gained near deafness in that ear.

Fourth cycle starts in a couple of days. More after that. Onward and upwards - but not in PSA!!

User
Posted 19 March 2018 16:47:32(UTC)

Good luck with the fourth cycle and a better outcome for you.

User
Posted 19 March 2018 17:13:31(UTC)

Hopefully just early days this time.Did medics give any feedback?

Good luck.

Ray

User
Posted 20 March 2018 17:35:53(UTC)

Ray, my oncologist was happy that the inexorable rise whilst I was on steroids only had been stopped and indeed reversed. Not much else to say, really. These are early days: 3/10 cycles completed.

AC

User
Posted 20 March 2018 18:59:45(UTC)

6.9 I dream of that! Currently I’m on 322 and on day 12 of my first of 6 Cabazitaxel infusions. Side effects so far were pain in my right bicep days 2–6 possibly due to anguish from the fact that the first 2 cannulas they put in me weren’t successful so we changed to left arm and all ok. Also from day 8 to 12 (ongoing) I’ve developed a cough and cold which is annoying to say the least. Other than that all ok with 2nd weekly blood tests scheduled for Tmos. Keep the faith folks. J.

User
Posted 21 March 2018 17:53:52(UTC)

Valleyboy, had my fourth infusion today and as usual I reminded the nurse that so far the record is five attempts to get a cannula working. This one got it right the second time. So I know about soreness from the five sites time! I know it's cruel but I can't resist setting them the challenge! Surprising how the skill level varies. I learned that the best do it by feel rather than sight. It also helps if your veins are close to the surface. Mine are pretty well covered and a bit kinky. They like long straight runs, which I don't have. Who'd have thought such a simple thing could be so complex?

AC

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User
Posted 22 March 2018 07:06:05(UTC)

AC, Valleyboy,

Keep going guys.

Unfortunately or fortunately (not sure which) I am still on the Doctetaxel bus. The one behind you,

Coming up to infusion 16 and another Chemo break next week.

PSA back down to a more respectable 5.8 and next to no side efffects so can't complain.

As far as canulas go my nurse has found a great spot on the back of my hand to use. Not sure if you you have tried that one.

Warm regards to you both

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
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User
Posted 11 April 2018 17:05:31(UTC)

Just had cabazitaxel infusion five. PSA dropped a bit more to 6.1 during the fourth cycle, but that is still a bit above where it was before I started on this regime. CT scan due on 23rd, followed by MDT consideration, possibly before radiologist's report is available. I suppose it is mathematically possible to get close to zero PSA after ten cycles, as although progress is slow on this regime, it does seem to be speeding up. The scan will be revealing. May be followed by a liver biopsy if patch on liver appears to be growing still.

Side effects in fourth cycle much as previously, but because I have this tendency to nausea as a result of my inner ear problem and hiatus hernia, it is a bit difficult to apportion blame! Taste for wine and beer rather dulled by the drugs, which is the really serious side effect. On the other hand, boy, will I appreciate them when I've finished the ten cycles! Half way there now!

AC

User
Posted 11 April 2018 17:26:17(UTC)

Well done A C

I look forward to your postings

 

Barry

User
Posted 11 April 2018 18:03:28(UTC)
Thanks for update AC, you seem to be doing well. The scan will be important as you say.
Best wishes, Ian
User
Posted 11 April 2018 19:04:38(UTC)

AC, good news. As Barry I look forward to your updates. Good luck with those scans.

Ray

User
Posted 12 April 2018 18:01:44(UTC)

Slow but sure AC. The nausea is very problematical. Have you asked for Akynzia? Worked wonders for me. One capsule taken an hour before the chemo lasts for 5 days afterwards. 

 

Best regards

User
Posted 13 April 2018 15:54:52(UTC)

Yes, Norman Ingram, I asked my oncologist about this but he said he thought it couldn't be used with cabazitaxel as this chemo is too mild for this drug. NICE guidelines allegedly to blame. Will try again next cycle.

AC

User
Posted 13 April 2018 19:02:45(UTC)

Very strange. Found this http://www.ema.europa.eu/ema/index.jsp?curl=pages/medicines/human/medicines/003728/human_med_001862.jsp

and this   https://www.nice.org.uk/advice/esnm69/chapter/Key-points-from-the-evidence

 

Cannot see any specific exclusions. All I know it works great. Constipation is a problem but I got that with the standard anti sickness drug anyway. 

Best regards

User
Posted 13 April 2018 23:52:43(UTC)

Fingers crossed for you AC - it is shocking that your beer and wine are being spoilt!

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


User
Posted 14 April 2018 17:02:56(UTC)

Normaningram, I think I found confirmation of my uncologist's viewpoint in the fine print of your references, for which many thanks. The distinction is between highly emetogenic chemo like cisplatin (which I had for bladder cancer years ago - and it was a hard course, but I was younger then!) and much milder chemo such as cabazitaxel. I'd say from my experience that docetaxel is between the two. So my bloke who plays things by the book has an argument on his side, but he can be persuaded at times and I can be persuasive, so I shall try again next time.

Now, Lyn, both Tigers and City having lost this afternoon, I am definitely going to drink to greater success next week and iit won't be with water.

Cheers

AC

 
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