I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

Cabazitaxel - how long before you knew how effective it was

Email this conversation Print this conversation
User
Posted 10 May 2022 at 13:32

On my second cycle of cabazitaxel.  Blood tests 23 days after first IV showed I'd recovered well, but my PSA was still rising at the same (alarming) rate (doubling every 6-8 weeks) that it was before the treatment started.


How many cycles of this stuff do I have to go through before I get a clear(ish) indication that's it's actually benefiting me, or not?


Other experiences please - tell me how it worked out for you.


Thanks

User
Posted 11 Sep 2022 at 00:10
Update for anyone else on Cabazitaxel and with wildly fluctuating PSA.
Before I started Cabazitaxel my PSA had risen to 893 (1st April 2022)
It continued to rise to a peak of 2314 (30th May 2022), probably due to a combination of the cabazitaxel kicking in and some radiotherapy I had at the same time.

There followed an equally dramatic fall:
1631 (13th June)
663 (4th July)
221 (29th July
99 (15th Aug)
84 (5th Sept)

The latest rate of fall suggests the cabazitaxel is stating to fail. It could be just slowing down, with more progress to come, or it could be bottoming out, or (worse case) it's alread bottomed out and is starting to go back up. I'll stick with the first option. I'll know more in a couple of weeks with the next blood tests before cylce 9 of cabazitaxel starts. I was hoping to get PSA down into single fugures, but I guess that's not likely now - I can only hope and wait to see what happens.

There's a lot of stuff about the side effects of this treatment - they weren't exactly doing a great sales pitch when I was warned about all the stuff that could happen - urghh. For what its's worth, and for anyone wondering about this treatment, my experience (so far, don't want to jinx it...) has been no side effects at all. Seriously, it's been a breeze. I know it's not the case for everyone, but compared to the Docataxel I had a few years back this has been easy. I've just started cycle 8. I did have a bit of nausea at the start of cycle 1 and 2, but was never actually sick, and didn't feel the need to take the anti-sickness tablets. I just rode it out, and then it stopped. I guess I've been really fortunate in this.

Hope this may be helpful to others out there.
User
Posted 12 Sep 2022 at 21:44
The comparison with Docataxel has really surprised me. I didn't have the tough time I was warned about with it, but I was constantly aware of numerous low level side effects, and at the end of only six cycles I really was glad to be off it. I was on Degaralix (HT) at that time, and if the chemo came in the same week as the Degaralix injection it was really brutal for a few days.

By contrast, I was given very stern/serious warnings about cabazitaxel, and asked if I really wanted to go through with it. I'd heard other stuff about it being a "last resort" drug, and very brutal. Sometimes wonder if I'm getting the same drug - unless it's storing up some nasty suprise for later...

Kinda think this summer might be my last, so the ability to keep living a full and active life and do the travelling I've always wanted to makes a massive difference to my quality of life. In some way I feel more alive now than I ever did pre-diagnosis. I know it can't last, but whilst it does it's a real high.
User
Posted 10 May 2022 at 22:54

Hi Dean, I can't help, just bumping your post to the top as they get lost after a while.

Dave

User
Posted 18 May 2022 at 23:45
Think of it as the cancer cells screaming as they realise they are under attack. PSA is not always a reliable indicator of chemo success.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 05 Aug 2022 at 07:11

Thanks for your reply- that is fantastic news! I'm so pleased that you're living life to the full and having such amazing experiences. Long may your travels continue and I hope you will be posting about your adventures next summer but so glad you're able to make the most of this one.


All the best and thanks again- your story really has given me hope and positivity x

User
Posted 11 Sep 2022 at 21:10

Good update. I'm impressed with how effective it has been and very happy for you that the side effects have been minimal.

Dave

User
Posted 12 Sep 2022 at 10:02

Dean,


Really pleased for you after the tough time you had earlier in the year .


Like you I found Cabz a lot easier to cope with than D which was hard.


I would say to anyone out there who is offered Cabz  to give it a go.You can always stop early if it gets too unpleasant.


Stay strong


Norm

User
Posted 30 May 2023 at 00:46
It happens but not that often. There have been a few men on this forum over the years with mets in their brain - and there was a famous sportsman, Andy Ripley, who wrote a book about his prostate cancer. He had mets in the brain and skull, I think.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
Show Most Thanked Posts
User
Posted 10 May 2022 at 22:54

Hi Dean, I can't help, just bumping your post to the top as they get lost after a while.

Dave

User
Posted 18 May 2022 at 18:41
Thanks Dave. My oncologist tells me not to bother about the rocketing PSA - it usually rises when chemo starts, but need to wait for at least 3 months / 4 cycles before any conclusions can be drawn about how effective it's being. Here's hoping for a good outcome - otherwise all the urgh of chemo is for nothing. I hope not.
User
Posted 18 May 2022 at 23:45
Think of it as the cancer cells screaming as they realise they are under attack. PSA is not always a reliable indicator of chemo success.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 22 May 2022 at 11:35
It's one hell of a scream - PSA scores:
28 Feb 505
1 April 893 Cabazitaxel 1st cycle started 5 April
13 April 980
20 April 1114
28 April 1240 Cabazitaxel 2nd cyle started on 4 May (delayed by one week)
12 May 2009

Can't even fit this score on the graph paper I've been using.
I can only hope that the cancer is having a harder time of it lately than the rest of my body...
User
Posted 04 Aug 2022 at 19:55

Hi Dean 


How are you getting on? So reassuring to hear your specialist say not to read too much in to the psa. 


Dad became hormone resistant after 18months. Aberiterone stopped and started on cabazitaxel but psa lept from 70 to 170 in the 3 weeks after first cycle. Was doubling every 4 weeks prior to that. 


Hoping this is just a blip for him and for you and that the chemo soon does its thing.


Thinking of you x

User
Posted 04 Aug 2022 at 21:37

Hi Katie


Haven't posted for a while, possibly my last summer (hope not!), so making the most of the time by traveling.


My PSA hit a high of 2332 in May, after second chemo cycle, and perhaps more significantly because I had a course of radiotherapy to deal with a new tumor that was creating serious problems. 


Since then my PSA has fallen dramatically to 221 at the end of July.  I've just had cycle six (of 10) of cabazitaxel, and so far the side effects have been minimal - long may it continue this way.  I do keep failing the blood tests (platelets) but things bounce back within a few days.


Yesterday I did a walk in the Bavarian Alps - about 16km in hot sunny weather.  OK, I did take the cable car to reach the the mountain summit, but it still shows what's possible during chemo.


My experience is that you need to wait until the end of cycle four before drawing any conclusions about how effective the chemo is.  Good luck.

User
Posted 05 Aug 2022 at 07:11

Thanks for your reply- that is fantastic news! I'm so pleased that you're living life to the full and having such amazing experiences. Long may your travels continue and I hope you will be posting about your adventures next summer but so glad you're able to make the most of this one.


All the best and thanks again- your story really has given me hope and positivity x

User
Posted 11 Sep 2022 at 00:10
Update for anyone else on Cabazitaxel and with wildly fluctuating PSA.
Before I started Cabazitaxel my PSA had risen to 893 (1st April 2022)
It continued to rise to a peak of 2314 (30th May 2022), probably due to a combination of the cabazitaxel kicking in and some radiotherapy I had at the same time.

There followed an equally dramatic fall:
1631 (13th June)
663 (4th July)
221 (29th July
99 (15th Aug)
84 (5th Sept)

The latest rate of fall suggests the cabazitaxel is stating to fail. It could be just slowing down, with more progress to come, or it could be bottoming out, or (worse case) it's alread bottomed out and is starting to go back up. I'll stick with the first option. I'll know more in a couple of weeks with the next blood tests before cylce 9 of cabazitaxel starts. I was hoping to get PSA down into single fugures, but I guess that's not likely now - I can only hope and wait to see what happens.

There's a lot of stuff about the side effects of this treatment - they weren't exactly doing a great sales pitch when I was warned about all the stuff that could happen - urghh. For what its's worth, and for anyone wondering about this treatment, my experience (so far, don't want to jinx it...) has been no side effects at all. Seriously, it's been a breeze. I know it's not the case for everyone, but compared to the Docataxel I had a few years back this has been easy. I've just started cycle 8. I did have a bit of nausea at the start of cycle 1 and 2, but was never actually sick, and didn't feel the need to take the anti-sickness tablets. I just rode it out, and then it stopped. I guess I've been really fortunate in this.

Hope this may be helpful to others out there.
User
Posted 11 Sep 2022 at 21:10

Good update. I'm impressed with how effective it has been and very happy for you that the side effects have been minimal.

Dave

User
Posted 12 Sep 2022 at 10:02

Dean,


Really pleased for you after the tough time you had earlier in the year .


Like you I found Cabz a lot easier to cope with than D which was hard.


I would say to anyone out there who is offered Cabz  to give it a go.You can always stop early if it gets too unpleasant.


Stay strong


Norm

User
Posted 12 Sep 2022 at 21:44
The comparison with Docataxel has really surprised me. I didn't have the tough time I was warned about with it, but I was constantly aware of numerous low level side effects, and at the end of only six cycles I really was glad to be off it. I was on Degaralix (HT) at that time, and if the chemo came in the same week as the Degaralix injection it was really brutal for a few days.

By contrast, I was given very stern/serious warnings about cabazitaxel, and asked if I really wanted to go through with it. I'd heard other stuff about it being a "last resort" drug, and very brutal. Sometimes wonder if I'm getting the same drug - unless it's storing up some nasty suprise for later...

Kinda think this summer might be my last, so the ability to keep living a full and active life and do the travelling I've always wanted to makes a massive difference to my quality of life. In some way I feel more alive now than I ever did pre-diagnosis. I know it can't last, but whilst it does it's a real high.
User
Posted 21 Mar 2023 at 20:06
My husband started his first Cabazitaxel last Thursday along with Prednisone and Zarzio injections for 5 days. Its now day 5 and he has been so poorly. Terrible headache, nausea, vomiting, not eating and not sleeping. He is on Fentanyl patches for pain which work on the bone mets but are not touching the headache. We are wondering if it is the Zarzio injection rather than the Cabazitaxel. Did anyone have these and how did they affect you. Thanks.
User
Posted 26 Mar 2023 at 19:59

Don't know about Zarzio, but, whilst I had it relatively easy on Cabazitaxel, I do recall the first cyle was worse than any of the others, although nowerere near as bad as you're describing.

User
Posted 29 May 2023 at 14:09

We now know why he responded badly to the Cabazitaxel. It turned out he has a brain tumour. The Cabazitaxel caused it to get inflamed and gave him the headache and nausea. He is doing well now on Cabazitaxel and PSA coming down faster than it went up. Starting whole brain radiotherapy tomorrow. I tried to post a question about that but I just get an access denied message every time I try to make a new post on this community.  Anyway I hope your treatment is still going well. 

User
Posted 29 May 2023 at 19:41

Really sorry to see this news, Almendras. Is it prostate cancer mets in the brain or a completely unrelated brain tumour? 


Often, the 'access denied' message is because the name you have given your thread has already been used by someone else. Try with an unusual title like 'brain tumour and Zazio' or something like that 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 29 May 2023 at 20:14

They say it’s prostate cancer. Oncologist said his cancer is behaving very differently to how they expect prostate cancer to behave. I can’t find much info on the internet about prostate cancer mets in the brain. 

User
Posted 30 May 2023 at 00:46
It happens but not that often. There have been a few men on this forum over the years with mets in their brain - and there was a famous sportsman, Andy Ripley, who wrote a book about his prostate cancer. He had mets in the brain and skull, I think.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
 
Forum Jump  
Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.




MenuTop ▲
©2024 Prostate Cancer UK