Ding Ding! Cabazitaxel Round 2

User

Posted 08 Mar 2018 at 19:59

Hi,

Just a recap. Finished 10 rounds of Doxitaxel Last April - Did not work

Started Enzalutimide, PSA Rose to 111 So that hasn't worked either

Had a single blast of radiotherapy on right hip 2 weeks before starting 10 rounds of Cabazitaxel.

Blood test taken for start of Cabazitaxel showed PSA had dropped to 51 due to radiotherapy.

1st round

Slightly different regime as no steroids are taken in the run up to the infusion. No horrible taste in mouth, frozen pineapple cubes not necessary! Got awful constipation, followed by diarrhoea on third day. Worst of all was the intense sickness feeling lasting 5 days. I was never sick but came close. Of course extremely exhausted but heeded consultants advice of keeping as active as you possibly can as it minimises the side effects. I walk between 5 and 7 miles every day, although for two weeks it felt like my legs were made of lead. The "quarantine" period when white blood cells are at their lowest is longer than doxetaxel, from days 4 to 14 when you have to be careful.

2nd round

Blood test shows PSA down to 10 so that's a good result after one round of chemo!

After discussing my experience of the first round I was given a brand new anti sickness capsule called Akynzea instead of Ondanseron. You take it one hour before the infusion and it lasts for 5 days. What a difference! I could not even walk past a chip shop because the smell made me feel very sickly. I was also given a laxative which has also been very effective. After the chemo had finished I was given the steroids etc to take home, but they could not give me the Akynzea as it was so new the protocols have not been written up yet! It has been transformational for me so if anyone is struggling with sickness, they should ask about it. Still exhausted but this can be managed.

Also, massive bonus (for me anyway) you get to keep your hair with cabazitaxel! Nurse says she has never known anyone losing their hair with this chemo, although it might thin a little.

Roll on 21st August which will be last of 10 rounds!

Best regards

User

Posted 29 Mar 2018 at 17:29

3rd Round

Well, good news. My PSA has now dropped to 7.6!( Was 111 before starting Cabazitaxel) Oncologist said it hasn't been this low for over two years!

The Akynzea has worked wonders for sickness again, great!

Not so good is despite best efforts I still got three days of constipation. Need to get a stronger laxitive for the next round.

Unexpected Bonus.... I am now peeing like I was 20 years old! Almost full mains pressure. Downside is I am having to avoid public toilets in case the broad smile on my face gets misinterpreted! Ha ha!

Best regards

User

Posted 11 Jul 2018 at 18:46

Round 8 (and my last) unfortunately. PSA now 64, so higher than when I started with the Cabazitaxel.

So currently my PSA doubling rate is every 6 weeks. That despite a great early response. I met with the clinical trials department who indicated I might be eligible for a brand new drug which works at a micro cellular level. To qualify they needed to obtain the tissue sample taken from my biopsy in 2011 and send it to Germany to see if I have a specific faulty gene. Apparently 25% of men with prostate cancer have this faulty gene, so I have a 1 in 4 chance of getting in the program. I should know at the end of next week after the results come back.

If I do not qualify, then they will look at trials up and down the country which I might be able to take part. Either way I will start a new thread. So now for the first time since diagnosis, apart from my 12 weekly Prostap injection I do not have any ongoing treatment and as said earlier, with a doubling PSA rate of every 6 weeks. Very scary.

My impressions of the Docetaxel/Cabazitazel differences are that Cabazitaxel is much easier to cope with, no hair loss, no horrible metallic taste in mouth. Both totally exhaust you.

As with all chemo you need to be vigilant against the risk of infection, that means avoiding people with coughs and colds etc. especially when your immune system is compromised.

A little tip you might want to consider is getting an infection from insect bites. As someone who walks between 5-10 miles every day, sometimes more but never less, and being a midge magnet,(unfortunately) I bought some outdoor walking clothing with built in insect repellent with the added bonus of offering spf 50 sunscreen. Hat, shirt and trousers

I have walked down country lanes through clouds of them and unbelievably been untouched by them. First year ever I have not been bitten!

So, that's the end of this thread. I will pop up again when I know what path I will be travelling along when I find out

Best regards

User

Posted 11 Jul 2018 at 20:20

Hi Valleyboy.

That's what I was told. I have had every treatment, Docetaxel, Enzalutamide and now Cabazitaxel .I have had all three back to back over the last two years. All ended in failure. I now only get Prostap which is a hormone injection I believe every 12 weeks. There is simply nothing else they can offer me, so that is the "toolbox" empty.

Clinical trials are the only route I have available. As I said, I am not prepared to throw the towel in just yet, and I will travel anywhere to get on a suitable trial.

I actually feel physically quite good, but it is hard getting my head around the situation I am in sometimes.

Best regards

User

Posted 11 Jul 2018 at 20:52

I think it may be the RE-AKT trial, testing enzalutimide with another drug called ADZ5363 - if you put RE-AKT into the search box you should find a couple of other threads on the same trial.

I don’t think it is 25% of all men with PCa that have this fault; I read that up to 25% of men with non-responsive advanced PCa may have it. Fingers crossed for you x

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

Show Most Thanked Posts

User

Posted 09 Mar 2018 at 16:27

Great news about Akynzea. Will raise with my oncologist at next meeting. In my recent bout of vomiting and diarrhea, which led to dehydration, I was pumped full of Ondansetron in the oncology ward. Gave me days of constipation, very unpleasant. Agree about the hair loss, none here either, after three infusions.

I trust your PSA will continue to drop

User

Posted 29 Mar 2018 at 17:29

3rd Round

Well, good news. My PSA has now dropped to 7.6!( Was 111 before starting Cabazitaxel) Oncologist said it hasn't been this low for over two years!

The Akynzea has worked wonders for sickness again, great!

Not so good is despite best efforts I still got three days of constipation. Need to get a stronger laxitive for the next round.

Best regards

User

Posted 29 Mar 2018 at 17:45

Thats a great drop, so happy for you

You have already done much better than i did

Beer tonight https://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

Don't deny the diagnosis; try to defy the verdict

User

Posted 18 Apr 2018 at 21:19

4th Round

Well, slight disappointment, my PSA has risen slightly to 10.1 Not what I expected as overall, I seem to be doing OK It is still 90% lower than when I started.
The chemo is tough, no doubt about it. Pain in lower back which is a known side effect and my finger nails have started to have ridges appearing. Exhaustion is a problem but manageable. Constipation being treated with a different laxative regime, so will see how that goes.

Best regards

User

Posted 18 Apr 2018 at 22:38

Keep the faith Norman. I’m right behind you on the Cabazitaxel bus as I’ve just had my 3rd infusion today. PSA dropped 130 points since 3 weeks ago but still much higher than yours at 587. Never mind the main thing is it’s going down. I’m on initial course of 6 infusions which may be increased to 10 if necessary. Also other than some fatigue, no side effects at all for me? So I’m still playing golf, walking the dog and gardening as required. All the best. J.

User

Posted 10 May 2018 at 21:56

Round 5 Half way!

Finally sorted out the constipation problem, a couple of sachets of Laxido did the trick. So, no sickness or constipation so just extreme tiredness to contend with.
Also PSA has risen from 10.1 to 12.7 not as much as I had feared. But here's the thing. three days after my first cabazitaxel, I had my 12 weekly Prostap injection. So my PSA which started at 51 was down to 10 by the second round, then 7.6 third round, 10.1 4th round and finally 12.7 5th round.
Was the Prostap responsible for the big drop and subsequent third round before losing its potency resulting in the PSA starting to rise again?
I get another Prostap injection tomorrow so we will have an answer in 21 days time! I have been thinking about Prostap a lot. I got my first injection about 30 minutes after being diagnosed and have received it religiously every 12 weeks without question ever since. It's a God awful injection but maybe monthly would be better? Seeing consultant a week after my 6th round so if my PSA shows a drop it will be a question a will be asking.

Best regards

User

Posted 10 May 2018 at 22:23

It would be useful to get your testosterone tested at the same time as your PSA. That would reassure you that the Prostap is working properly - the injection should work for the full 12 weeks. Call me cynical but I would be worried that a) they are giving you a 4 week injection by accident or b) it isn’t being stored correctly or c) it isn’t getting you down to castrate level properly. Of course it could be none of those things and simply that the cancer cells are being critically injured by the chemo and giving off PSA as they scream. Some people do find their PSA rises on chemo.

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

User

Posted 10 May 2018 at 22:33

Forgot to say that there have been a couple of members who found they needed the 12 weekly injection every 10 weeks instead.

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

User

Posted 06 Jun 2018 at 21:27

Round 6

Slightly delayed report as had 6th cycle last Wednesday, and all the blood results came back except the only one I am interested in, the PSA!

Had another blood test yesterday for appointment with oncologist today. It was very disappointing. My Onco said my PSA had doubled to 25 in three weeks so the likelihood was that the Cabazitaxel is no longer working. He has authorised two more cycles and I see him again after that in 6 weeks time.

He said that I am being referred to the clinical trials department as basically there is no more main stream treatments available. There will be a period of me attending two parallel lots of appointments initially before they take over. So, I have no idea what is in store for me but will know better after I have my first appointment with them.

The irony is that actually, I do not feel too bad. I am walking briskly for miles every day, feeling quite good, pain free and seem to have gotten on top of the side effects of the Cabazitaxel . I was looking forward to finishing all 10 cycles and maybe have a treatment holiday as I have had 24 months of back to back chemo, Docetaxel, Enzalutimide and now Cabazitaxel. Doesn't look like that is going to happen now.

Going into scary territory now!

Best regards

User

Posted 06 Jun 2018 at 23:09

So sorry to hear that Cabazitaxel is not as effective as you had hoped. Maybe it will pick up again during your next two cycles. Otherwise, I hope the trials have something to offer you.

Best wishes

Peter

User

Posted 19 Jun 2018 at 19:05

Round 7

PSA is now going steadily and rapidly the wrong way, although not quite as bad as I feared. It is now 40 up from 25 three weeks ago. That means the next one it will be worse than when I started, which was 50. It is such a shame as initially the results were great for the first two cycles getting it down to 7.6, which was the lowest for two years.

I seem to be coping well with the side effects but this afternoon going for a walk it was the usual "walking through treacle!" The hardest thing for me is mentally, now knowing that Cabazitaxel is not working. You just accept feeling terrible in the knowledge it is ultimately doing you some good. Being told that there was no more main stream treatment available to give me has been pretty hard to take.

However, just waiting for the clinicals trial appointment and have just received a copy of the referral letter so that will happen soon. All I can do is remain as fit as I can, eat healthily. Oh, and keep my fingers crossed! I have been living with this since I was diagnosed stage 4 in 2011 at the age of 54 and not yet ready to throw the towel in!

Best regards

User

Posted 11 Jul 2018 at 18:46

Round 8 (and my last) unfortunately. PSA now 64, so higher than when I started with the Cabazitaxel.

My impressions of the Docetaxel/Cabazitazel differences are that Cabazitaxel is much easier to cope with, no hair loss, no horrible metallic taste in mouth. Both totally exhaust you.

As with all chemo you need to be vigilant against the risk of infection, that means avoiding people with coughs and colds etc. especially when your immune system is compromised.

I have walked down country lanes through clouds of them and unbelievably been untouched by them. First year ever I have not been bitten!

So, that's the end of this thread. I will pop up again when I know what path I will be travelling along when I find out

Best regards

User

Posted 11 Jul 2018 at 19:41

Orm123 just read ur post and hope ur feeling a bit better/stronger today?

Not sure about ur statement “ end of mainstream treatments” as I seem to recall a Dave Stuart post from some time ago in which his onco listed quite a few additional treatments to Docetaxel, Cabazitaxel, Enzalutamide and hormone injections?

So can anyone out there add some light on this subject? To include a possible list of sequential treatment for advanced PCa?

User

Posted 11 Jul 2018 at 20:20

Hi Valleyboy.

Clinical trials are the only route I have available. As I said, I am not prepared to throw the towel in just yet, and I will travel anywhere to get on a suitable trial.

I actually feel physically quite good, but it is hard getting my head around the situation I am in sometimes.

Best regards

User

Posted 11 Jul 2018 at 20:52

I think it may be the RE-AKT trial, testing enzalutimide with another drug called ADZ5363 - if you put RE-AKT into the search box you should find a couple of other threads on the same trial.

I don’t think it is 25% of all men with PCa that have this fault; I read that up to 25% of men with non-responsive advanced PCa may have it. Fingers crossed for you x

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

User

Posted 11 Jul 2018 at 21:53

Have you been tested for DNA repair gene mutations such as BRCA2 or ATM? If you have one of these you might be eligible for a PARP inhibitor trial.

User

Posted 11 Jul 2018 at 23:48

Hi Orm,

I think you and I are in a very similar position, although I have not as yet started the Cabi.

Like you, I have a PSA doubling rate of about 6 weeks (or maybe less) and it has risen from 23 upon completion of Docetaxel in February, to over 90 in the middle of June. So I was interested to read your experience on Cabi.

When I saw my onco in early May, he gave me three options to consider, Entry onto the Triton trial which is a PARP inhibitor but requires a particular gene mutation to be eligible. The second option was the Re-AKT trial, which sounds like the one you are under consideration for, or indeed to just take the Cabi. He has also suggested Zolodronic Acid to ease bone pain.

I have been waiting since the end of May to hear if I am eligible for the Triton study, but still no news on that! If I fail the eligibility tests for Triton, I will then move forward into the Re-AKT trial eligibility test. In the meantime, I have not received any effective treatment since completing the Docetaxel regime in early February apart from 12 weekly Decapeptyl injections, which I feel are largely ineffective anyway.

Like you, I understand that there are no more tools in the box, so it is very frustrating. I am getting a lot of bone pain and I am currently on regular doses of high strength Co-codamol. My mobility is becoming more and more restricted and I am sleeping very badly. All in all I am not particularly happy at the moment!

But I have my next appointment with the onco on Friday next week, so it will be interesting to hear what he has to say.

Best regards,

User

Posted 12 Jul 2018 at 00:38

Hi, actually the drug in question has not even got a name yet. It would be a stage 1 trial, whose dosage is not established and whose side effects are unknown! Looking at the positives, it is not randomised so at least I know for certainty I will be getting it! It is the first humanised trial, so tested on mice and shows some promise!

Here are some links I have found

https://ukctg.nihr.ac.uk/trials/trial-details/trial-details?trialNumber=NCT03188965

https://clinicaltrials.gov/ct2/show/NCT03188965

pharma.bayer.com/en/innovation-partnering/clinical-trials/trial-finder/trial-finder-details/?trialid=18594&search=&product=BAY1895344&overall_status=&country=&phase=&condition=&results=0&trials=0&btnSubmit=submit&num=10&show=1

Apparently this is cutting edge pioneering stuff which I do not pretend to understand. I checked the paperwork I was given and it says 1 in 4 men have this DDR "thingy"

Lets hope I am one of them!

Best regards

Notification

Join the online community now.