Lorraine is a nurse specialist and sex therapist and here to answer your questions...
As you can see from my profile, things aren't going well. I tolerated Docetaxel - 6 cycles, 5 at 80% quite well but the next step is 10 cycles of Cabazitaxel starting at 100%. Anyone out there had both and how do they compare on side effects?
Hi Johnh54, having read your profile you’ve certainly had a lot to contend with to say the least. Cabazitaxel seems to be used in your situation where you’ve had docetaxel, are on HT and the Prostate cancer is no longer fully responding to treatment.
I don’t know a huge amount about cabazitaxel but I have read about some men getting a good response and sometimes less side effects than with docetaxel. We are all different so we can’t be sure about how you will react until you start.
There is some information here https://prostatecanceruk.org/prostate-information/treatments/new-treatments#what-is-cabazitaxel
Hopefully others will come along and respond.
I really hope you get a positive response to this new chemotherapy.
I am not expecting replies to this, but I thought I would keep a record of my Cabazitaxel treatment on here and update it as things progress. Everyone will react differently to Chemo so don't take this as typical.
Comparison between the two treatments:
Steroid tablets (dexamethasone) 12 hours, 2 hours and 1 hour before chemo
15 minutes of flush after an inline (larger?) dose of steroids
60 minutes of Docetaxel
15 minutes of flush
Went home with no drugs
No steroid tablets before chemo session.
Ondansetron (Anti-emetic tablet )
Dexamethasone (Steroid) inline
Prochlorperazine (anti-emetic) inline
Ranitidine (antacid) inline
30 minutes of flush
60 minutes of Cabazitaxel
Went home with:
Predinisalone (steroid) for 21 days
Metaclopramide (anti-emetic) as required
Loperamide (anti-diarrhoea) as required
Dioralyte (re-hydration) as required
Zarzio (filgrastim G-CSF stimulant) for 7 days injections by District Nurse
Comparison between the two side effects
Hyper from steroids Days 1-3.
Red face on Day 2.
Burnt tongue/mouth and metallic/loss of taste Days 2-12.
Runny nose and minor nosebleeds.
Slight constipation, fixed with dried apricots as regular snack.
Loss of hair Day 14 onward, main loss on Day 19.
Low Blood pressure/anaemia/breathlessness, had to hang on to walls if I stood up too quickly, breathless when on longer walks.
Crinkly fingers, fingerprint sensor on phone failed to recognise me.
Stripes across nails that split the nail into two layers when they reached the end of the nail.
Bad constipation (Day 2-5), followed by mild diarrhoea (Day 5-9, took one Loperamide a day to reduce urgency)
Burnt tongue/mouth and metallic/loss of taste Days 2->
Loss of appetite.
Low Blood pressure, had to hang on to walls if I stood up too quickly.
Weight loss - 4-5 lbs by day 8.
Day 9 passed out completely when getting out of bed, no warning. Hit head on floor.
Back pain on the trouser belt line (might be a symptom of Spinal Cord Compression rather than Cabazitaxel)
Regained the weight, but now have heartburn. Day 14.
Hearburn fixed with Lanzoprazole
Low blood pressure fixed by reducing the Ramipril.
Still kept all my hair but it thinned.
Fingernails are more fragile.
I stopped after 5 cycles.
Just to add to the fun, the District Nurse didn't turn up for the first Zarzio injection, so I drove back to the Oncology ward that evening,who did a very neat injection and the next day they sorted out the District Nurse again. It was a computer glitch, I didn't appear on the printed list. The second injection was with the Nurse observing me and now I am a happy and reasonably confident self-injector.
I was stopped after 5 cycles as the response to Cabazitaxel was mixed at best.
Everything was going up and down, but mainly up. The PSA rose from 175(est) to 794 over the 127 days, but untreated I have a doubling time of 21-28 days which would have got me to a PSA of 4,000-12,000.
The Alkaline Phosphatase went from 137 to 184 via a low of 111 and a high of 313.
The haemoglobin got low but never low enough for a blood transfusion.
Now lining up some palliative care as despite being mainly symptom free there are no treatments left, except trials.
Just a question did they never offer you Abiraterone ? I know there are a fair few frills out there as I am on Stampede.
Hope one has your name on it.
Just to add a few things I have gout, high cholesterol, acid reflux, and some type of intestinal problem there is a name for it but I cannot remember, lately I have been in hospital with a kidney stone and will be going back to have it removed along with a stent they put in from my kidneys to my bladder.
They aren't able to offer me Abiraterone as I have already had Enzalutamide and the NICE guidelines say you can't have both. From what I have found, they both target the same pathway, so if one fails, so would the other.
I have tried to attach a link to my PSA and log(PSA) graphs so you can see what has and has not worked.
The only good effect after the initial Prostap and Docetaxel were the first few weeks on Enzalutamide. Anything else just slows the growth a bit.
I have an appointment to discuss a possible trial on Thursday, but I have to be a fit to their target subjects.
I have an appointment to discuss palliative care on the Tuesday after, so covering both bases.
I too am on Stampede (group K), but on the standard treatment arm rather than the Metformin arm.
Sorry to hear of all your other ailments and hope they are fixable. Even little aches and pains worry me as I never know the reason why they spring up and then vanish. You must have pain all the time?
some of the drugs mentioned are not part of my treatment.
diagnosed may 2018 with advanced prostate cancer to the bones I was given steroid .25 mg,casodex 150 mg, five days later given firgamon injection August I saw my consultant,from a high of 122 psa it had reduced to 1.9 psa.he took me off the steroids and Casodex ,but to continue with monthly injections of firmagon and vitamin D3
got to see him feb 2019 after psa blood test in January ,I wondered as to why I was only being given firmagon ,is this the norm ?
Yes, this would be the norm if your PSA is stable and below 4.0, though I'm surprised you aren't receiving early Docetaxel. There are some NICE guidelines out there which are (almost) readable. Also some Stampede guidelines on determining disease progression.
The Macmillan and Prostate Cancer UK helplines are a mine of information as are these forums. You need to fill in your profile....
I only went on to additional treatment when the PSA reached 4.72. I hope yours never does.
Some of these tumours are pussycats and some of them are tigers.
thank you for your response,much appreciated.
I looked up firmagon and it seems to be a very effective hormone therapy drug stopping production of testosterone. It doesn’t produce the tumour flare PROSTAP does.
Sounds like your on the best treatment.
Thanks for that Ian.
kind regards .
Have you been offered Radium 223?
This is treatment that my dad has been offered ,
Dad has had 3 months of Arbiraterone but, unfortunately it hasnt worked and his PSA has risen over the last 3 months now it’s now at 297.
My dads not been offered any trials at any time but maybe this is due to his age?
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