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Cabazitaxel - peripheral neuropathy

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User
Posted 16 Apr 2022 at 23:51

Was on Enzalutamide for 14 months until March 2022, then taken off it as it was no longer working.

PSA rising steadily since last summer:

14 June 21      4.9

23 Aug 21     21.8

1 Sept 21      25.9

12 Nov 21   127.4

23 Feb 22    505

8 Mar 22     640

1 Apr 22      893

doubling time roughly 5-6 weeks.

Just started Cabazitaxel - which I believe is the "last resort".

I had issues with peripheral neuropathy two years back when I was on Docataxel, and the lasting impact has been a certain numbness in my feet and more than usual "pins and needles" in my hands - but nothing major or really significant - no loss of function or inability to walk or do complex tasks with my hands.

Only 1 week after first dose of cabazitaxel  my feet are at times painful, and the numbness has increased noticably.

My fingers are also affected - a bit like cramp - several fingers will lock in some awkward position and stop responding to my instructions.  Easy enough to sort it out, but concerned this could get worse

So my questions:

1.  Has anybody else experienced this sort of thing?  What happened next?

2.  If I'm taken off cabazitaxel, is there any alternative treatment? or is this the end of the road treatment wise?

Thanks

Dean

User
Posted 17 Apr 2022 at 22:29

HI Dean 

Sorry to hear this. My OH started cabazitaxel in March and after 2 sessions the side effects are impacting his QoL a lot. I believe other treatments such as Olaparib is available to those with the BRAC gene. It's getting a lot of good media coverage at the moment due to success of it. The telegraph was highlighting it last week. We know a friend age 52 who very recently was taken off cabazitaxel and put on to Olaparib and in just 2 months his psa has come back down and no aches or pains.

There's lutiteum 177 too and Radium 223.

Wishing you the best and that other treatments are offered. 

 

Edited by member 17 Apr 2022 at 22:31  | Reason: Not specified

User
Posted 18 Apr 2022 at 13:41

Hi Dean,

Recently finished 6 cycles of Cabz and no problems with neuropathy other than occasional stiffness in fingers.You need to discuss with your doctor if symptoms persist!

Of the other two treatments mentioned in other message above lutetium 177 not yet approved  on NHS by Nice .You may be able to get access to it by joining a trial.

Stay strong

Regards

Norm

User
Posted 18 Apr 2022 at 22:38

Hi Dean,

My treatment was also scheduled for up to 10 cycles of Cabz but they stopped after 6 as the PSA was down to under 4.

Trust the doctors are able to tweek the dosage to enable you to carry on with the treatment.The side effects for me were much worse on the other chemo D. 

 

Stay Strong

Norm

 

SS

User
Posted 19 Apr 2022 at 22:58

Have you looked to see if their are any clinical trials that you could join that would test your genetics and possibly allow access to new drugs if you were suitable

https://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-trial-of-nivolumab-and-ipilimumab-for-men-with-prostate-cancer-neptunes

 

Would something like the Neptunes trial be worth enquiring about?

Just a thought

Good Luck

User
Posted 19 Apr 2022 at 23:24

This is a trial in Australia. If you can't get into it, you might be able to follow the results:

https://research.qut.edu.au/real/cipn/

Jules

User
Posted 20 Apr 2022 at 07:27

Also not on main list but recruiting across the world including the UK

https://clinicaltrials.gov/ct2/show/NCT04382898#contactlocation

User
Posted 23 Apr 2022 at 14:25

Hi Dean,

After 3 cycles the PSA was down to about 5 and has fallen progressively by cycle 6 of Cabz to just under 4.

Had to have some pills supplement for a few days around cycle 3 as one of my vital measurements was at the lower end but this did not delay infusion.

As I said before side effects have been very mild compared with the other chemo D.Had swollen ankles,severe nail infections.cramping in hands and  generally washed out whilst on D.

Regards

Norm

User
Posted 23 Apr 2022 at 16:30

Are you getting an injection after each cycle to help the white blood cells? I believe these may be ‘postcode’ impacted too in a ‘isome do it automatically to prevent problems and some save money by waiting to see if you have issue so this postcode stuff is unbelievable really.

Originally Posted by: Online Community Member

Thanks for the information everyone - I'm following up the various links.

My oncologist wants to focus on the Cabazitaxel for the time being. 

This has gotten off to a lousy start - I'm supposed to be starting the second cycle on Tuesday, but blood tests show I am nowhere near recovered from the first one.  Going to have more bloods done on Monday - if it's OK then second cycle can go ahead, otherwise I have to wait until I've recovered enough.  (sigh...)

Situation is made worse by a tumour growing in on the right side of my pelvic bone (don't know the correct name for it).  This happened a back at the end of 2020, and it was very effectively dispatched with a single blast of radiotherapy.  This time there is a relectance to give this treatment again - they want to rely on the Cabazitaxel instead.  This would be OK, but the tumour is pressing against a nerve, and the pain (especially at night) is unbearable.  The lack of any proper pain relief management hasn't helped much either.  I now learn that morphine doesn't work on all types of pain, but it does have side effects, which result in more pressure just where it ain't needed.  Hopefull the pain management is now being addressed, so life should get a bit easier.

It's hard to understand why my bloods are so low.  I didn't struggle in the days after the first dose of Cabazitaxel - fealt a bit rough days 2-4 afterwards, but then things returned to normal (same as I experienced with Docataxel).

Glad to hear that things worked out for you Norm.  How quickly did your PSA start falling after you started on Cabazitaxel?  I'm pinning a lot on this treatment - as one of the doctors (perhaps inadvertently) said, it's the last resort...  and so far itain't going to plan.  U-r-g-h-h-h

User
Posted 25 Apr 2022 at 13:24

Hi Dean,

Sorry to hear about your acute discomfort.You mentioned morphine is not helping.Apparenty  sometimes fentanyl patches can be helpful.Perhaps mention this to the nurse who may have access.

Regards

Norm

Edited by member 25 Apr 2022 at 13:28  | Reason: Typo

User
Posted 01 May 2022 at 10:13

Hi Dean,

Good to hear that you are feeling a bit better because of the new pain meds.

As I mentioned  among other things I had bad nail infections whilst on D.What I have done this time on Cabz is use a cream once a day on my fingers and toes recommend by a member on here  whose doctor told him about it and it worked for him and me.Its Aveeno daily moisturising creamy oil.A 300 mm container only costs about £5 last time I bought on Amazon and it lasts a couple of months.Dont wait until the problem shows itself but start on it now to protect against this nasty side effect.

Stay strong

Regards

Norm

Edited by member 01 May 2022 at 11:21  | Reason: Not specified

User
Posted 10 May 2022 at 13:25
Thanks for the infor Norm. I use Tea Tree Lotion/Cream (Dr Organics from Holland & Barret) and I'm pretty sure my feet look and feel a lot better for it. It's antifungal as well as antiseptic and moisturising, so it helps with athletes foot.

Starting a new thread now, asking the question: how long on Cabazitaxel before you know whether or not it's working for you. I'm on the second cycle now, and the side effects (feeling nauseous) are becoming a bit irksome. Doesn't help that the pain from my tumour is getting much worse, so more pain killers, and more side effects from those too... and on and on it goes.

User
Posted 10 May 2022 at 14:51

Assume you have been given tablets to take for sickness ?.Have  been given some each cycle to take for 3 days and then as and when required thereafter.

Regards

Norm

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User
Posted 17 Apr 2022 at 22:29

HI Dean 

Sorry to hear this. My OH started cabazitaxel in March and after 2 sessions the side effects are impacting his QoL a lot. I believe other treatments such as Olaparib is available to those with the BRAC gene. It's getting a lot of good media coverage at the moment due to success of it. The telegraph was highlighting it last week. We know a friend age 52 who very recently was taken off cabazitaxel and put on to Olaparib and in just 2 months his psa has come back down and no aches or pains.

There's lutiteum 177 too and Radium 223.

Wishing you the best and that other treatments are offered. 

 

Edited by member 17 Apr 2022 at 22:31  | Reason: Not specified

User
Posted 18 Apr 2022 at 13:41

Hi Dean,

Recently finished 6 cycles of Cabz and no problems with neuropathy other than occasional stiffness in fingers.You need to discuss with your doctor if symptoms persist!

Of the other two treatments mentioned in other message above lutetium 177 not yet approved  on NHS by Nice .You may be able to get access to it by joining a trial.

Stay strong

Regards

Norm

User
Posted 18 Apr 2022 at 14:14
Thanks for the information. I checked out Olaparib - it sounds promising, but is only available on the NHS in Scotland. Not sure if I'd even be eligible - not been tested for the relevant genes. The NHS in England and Wales is not offering this treatment, so that bit of research was a brief, but short lived ray of sunshine... It's a real postcode lottery.

Radium 223 is possibly on the cards after I've finished Cabazitaxel, but lutetium 177 is only avaliable privately. Not sure what the price tag is, but pretty sure it's wa-a-a-y beyond my reach.

I've got the end of cycle one review coming up on Friday, so I'll mention this stuff anyway - can't do any harm to ask.

Back in July 2019 when I was diagnosed I was told about the range of drugs that would be available to help me fight the cancer (a bit like an "all you can eat" menu, with loads of alternatives if one dish wasn't right), and there was a real hope that I could survive for many years to come. Two and a half years later I seem to be approaching the end of what turned out to be a very limited "fixed meal" menu with only a few choices to make. I'm kinda desperatly looking around for something else - anything! (well almost). I'm still hopefull that I can tolerate the cabazitaxel - maybe on a reduced dose, but if not then I guess it's just a matter of seeing how high the PSA number can go, before I do.

User
Posted 18 Apr 2022 at 20:58
Thanks Norm. We must have been typing at much the same time today.

My treatment goes on for 10 cycles - if I make it that far.

It feels like one of those dreams where you're moving down a corridor,

but the further you go, the farther the end seems to get...

I'll talk with my oncologist this week - probably reduce the dosage.

Time will tell.

User
Posted 18 Apr 2022 at 22:38

Hi Dean,

My treatment was also scheduled for up to 10 cycles of Cabz but they stopped after 6 as the PSA was down to under 4.

Trust the doctors are able to tweek the dosage to enable you to carry on with the treatment.The side effects for me were much worse on the other chemo D. 

 

Stay Strong

Norm

 

SS

User
Posted 19 Apr 2022 at 22:58

Have you looked to see if their are any clinical trials that you could join that would test your genetics and possibly allow access to new drugs if you were suitable

https://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-trial-of-nivolumab-and-ipilimumab-for-men-with-prostate-cancer-neptunes

 

Would something like the Neptunes trial be worth enquiring about?

Just a thought

Good Luck

User
Posted 19 Apr 2022 at 23:24

This is a trial in Australia. If you can't get into it, you might be able to follow the results:

https://research.qut.edu.au/real/cipn/

Jules

User
Posted 20 Apr 2022 at 07:27

Also not on main list but recruiting across the world including the UK

https://clinicaltrials.gov/ct2/show/NCT04382898#contactlocation

User
Posted 23 Apr 2022 at 13:55

Thanks for the information everyone - I'm following up the various links.

My oncologist wants to focus on the Cabazitaxel for the time being. 

This has gotten off to a lousy start - I'm supposed to be starting the second cycle on Tuesday, but blood tests show I am nowhere near recovered from the first one.  Going to have more bloods done on Monday - if it's OK then second cycle can go ahead, otherwise I have to wait until I've recovered enough.  (sigh...)

Situation is made worse by a tumour growing in on the right side of my pelvic bone (don't know the correct name for it).  This happened a back at the end of 2020, and it was very effectively dispatched with a single blast of radiotherapy.  This time there is a relectance to give this treatment again - they want to rely on the Cabazitaxel instead.  This would be OK, but the tumour is pressing against a nerve, and the pain (especially at night) is unbearable.  The lack of any proper pain relief management hasn't helped much either.  I now learn that morphine doesn't work on all types of pain, but it does have side effects, which result in more pressure just where it ain't needed.  Hopefull the pain management is now being addressed, so life should get a bit easier.

It's hard to understand why my bloods are so low.  I didn't struggle in the days after the first dose of Cabazitaxel - fealt a bit rough days 2-4 afterwards, but then things returned to normal (same as I experienced with Docataxel).

Glad to hear that things worked out for you Norm.  How quickly did your PSA start falling after you started on Cabazitaxel?  I'm pinning a lot on this treatment - as one of the doctors (perhaps inadvertently) said, it's the last resort...  and so far itain't going to plan.  U-r-g-h-h-h

User
Posted 23 Apr 2022 at 14:25

Hi Dean,

After 3 cycles the PSA was down to about 5 and has fallen progressively by cycle 6 of Cabz to just under 4.

Had to have some pills supplement for a few days around cycle 3 as one of my vital measurements was at the lower end but this did not delay infusion.

As I said before side effects have been very mild compared with the other chemo D.Had swollen ankles,severe nail infections.cramping in hands and  generally washed out whilst on D.

Regards

Norm

User
Posted 23 Apr 2022 at 16:30

Are you getting an injection after each cycle to help the white blood cells? I believe these may be ‘postcode’ impacted too in a ‘isome do it automatically to prevent problems and some save money by waiting to see if you have issue so this postcode stuff is unbelievable really.

Originally Posted by: Online Community Member

Thanks for the information everyone - I'm following up the various links.

My oncologist wants to focus on the Cabazitaxel for the time being. 

This has gotten off to a lousy start - I'm supposed to be starting the second cycle on Tuesday, but blood tests show I am nowhere near recovered from the first one.  Going to have more bloods done on Monday - if it's OK then second cycle can go ahead, otherwise I have to wait until I've recovered enough.  (sigh...)

Situation is made worse by a tumour growing in on the right side of my pelvic bone (don't know the correct name for it).  This happened a back at the end of 2020, and it was very effectively dispatched with a single blast of radiotherapy.  This time there is a relectance to give this treatment again - they want to rely on the Cabazitaxel instead.  This would be OK, but the tumour is pressing against a nerve, and the pain (especially at night) is unbearable.  The lack of any proper pain relief management hasn't helped much either.  I now learn that morphine doesn't work on all types of pain, but it does have side effects, which result in more pressure just where it ain't needed.  Hopefull the pain management is now being addressed, so life should get a bit easier.

It's hard to understand why my bloods are so low.  I didn't struggle in the days after the first dose of Cabazitaxel - fealt a bit rough days 2-4 afterwards, but then things returned to normal (same as I experienced with Docataxel).

Glad to hear that things worked out for you Norm.  How quickly did your PSA start falling after you started on Cabazitaxel?  I'm pinning a lot on this treatment - as one of the doctors (perhaps inadvertently) said, it's the last resort...  and so far itain't going to plan.  U-r-g-h-h-h

User
Posted 25 Apr 2022 at 12:13

Hi

No injections or supplements have yet been offered to help with low bloods - presumably the white cell count, since tht is the one that is linked to the immune system. 

Second cycle of Cabazitaxel not happening tomorrow - no way of getting a new blood test done.  The pain from the tumour makes it impossible to sit down properly for more than a few minutes, and the lack of sleep at night means I'm not alert during the day.  So no driving, and can't even take the bus.  All round not looking great.

Ray of hope arrived this morning in the form of a community nurse from the local hospice.  Starting to get a proper pain management plan in place to deal with what seems to be becoming a long term problem.  In the meantime life ain't much fun.  sigh...

User
Posted 25 Apr 2022 at 13:24

Hi Dean,

Sorry to hear about your acute discomfort.You mentioned morphine is not helping.Apparenty  sometimes fentanyl patches can be helpful.Perhaps mention this to the nurse who may have access.

Regards

Norm

Edited by member 25 Apr 2022 at 13:28  | Reason: Typo

User
Posted 01 May 2022 at 00:14

Thanks for the info Norm and everyone.

Finally getting proper pain relief, in the form of Pregabalin + Zomorph + Amitriptyline.  This combination seems to be working, and I can get back to normal life.  Chemo delayed by 1 week, and blood tests show full recovery after 23 days, so would probably have been OK to go ahead as originally planned.

Better still, I'm scheduled for Radiotherapy to nuke the troublesome tumour that's wrecked my life for the last four weeks, so should be able to dump all the pain meds by the end of May.

Glad to hear you found the Cabazitaxel easier than the Docataxel - I had issues with it too, but I kinda expected it and just got on with managing the side effects one by one, although a couple are still with me - two years after I finshed the treatment (peripheral neurophathy and toe nails).

I asked about anything that could help me recover a bit faster in future cycles, but drew a blank there.

PSA continues to go up, and up...

1 April        893

13 April      980

20 April     1114

28 April     1240

Given up caring about this number now.  Oncoligist says not to bother with it - she's just had a referal for some guy who appears perfectly healthy, but with PSA of 17,000.  Go figure.

I can only wait and see how I respond to Cabazitaxel - I'm hopeful, even if it only manages to slow things down a bit.

Thanks again for the info everyone.

User
Posted 01 May 2022 at 10:13

Hi Dean,

Good to hear that you are feeling a bit better because of the new pain meds.

As I mentioned  among other things I had bad nail infections whilst on D.What I have done this time on Cabz is use a cream once a day on my fingers and toes recommend by a member on here  whose doctor told him about it and it worked for him and me.Its Aveeno daily moisturising creamy oil.A 300 mm container only costs about £5 last time I bought on Amazon and it lasts a couple of months.Dont wait until the problem shows itself but start on it now to protect against this nasty side effect.

Stay strong

Regards

Norm

Edited by member 01 May 2022 at 11:21  | Reason: Not specified

User
Posted 10 May 2022 at 13:25
Thanks for the infor Norm. I use Tea Tree Lotion/Cream (Dr Organics from Holland & Barret) and I'm pretty sure my feet look and feel a lot better for it. It's antifungal as well as antiseptic and moisturising, so it helps with athletes foot.

Starting a new thread now, asking the question: how long on Cabazitaxel before you know whether or not it's working for you. I'm on the second cycle now, and the side effects (feeling nauseous) are becoming a bit irksome. Doesn't help that the pain from my tumour is getting much worse, so more pain killers, and more side effects from those too... and on and on it goes.

User
Posted 10 May 2022 at 14:51

Assume you have been given tablets to take for sickness ?.Have  been given some each cycle to take for 3 days and then as and when required thereafter.

Regards

Norm

User
Posted 18 May 2022 at 18:36
Yes, the anti-sickness tablets Metoclompramide. They seemed pretty effective - possibly the same stuff that's given by IV as a prep for the Cabazitaxel.
User
Posted 22 Jun 2022 at 08:10

Most of these symptoms of peripheral neuropathy are due to the side-effect of cabazitaxel. There is a clinical trial named "Thera P" which proves the efficacy of Lu 177 PSMA therapy over the cabazitaxel with minimal side effects. For more information, u can visit the link below: 

 

 

 
User
Posted 22 Jun 2022 at 10:45

Hi Dean,

How are you doing now?

You will see from my other posting on Letetium 177 referred to above that it's not currently available in UK because of quality issues at the manufacturers plants.

Stay Strong

Norm

Edited by member 23 Jun 2022 at 15:35  | Reason: Not specified

 
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