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Cabazitaxel - is it worth it?

User
Posted 03 Dec 2019 at 14:38

Having nearly reached the bottom of the theoretical tool box, my next treatment options appear to be Radium 223 and then 10 sessions of Cabazitaxel, and given that my OH and myself are firmly of the opinion that it is quality of life rather than quantity that counts,  I would be grateful for any feedback from anyone who has had experience of Cabazitaxel.  My Consultant tells me it will give me “an average of an extra 3 months longer than you would have had if you didn’t have it” which is fairly meaningless as there seems little point in spending 7 months having this chemo potentially causing me to feel dreadful plus the attendant fun of daily temperature taking, risk of infection, etc., etc., followed by any extra time also feeling ill.  Is it better to carry on feeling well, as I do at present, until the inevitable decline which will come either way?

I sailed through my 6 sessions of ‘early’ Docetaxel in 2016 when I was first diagnosed with little or no side effects (apart from hair loss of course), and received a further 10 sessions earlier this year, from January to July.  This was harder work - after the first few sessions the dose was reduced to 80% and I had to have GCSF injections during each cycle, plus on Day 4 I usually had to stay in bed feeling weak, however none of this stopped me getting on with life in between.  From what I have read about Cabazitaxel the side effects seem more extreme than the Docetaxel - particularly with diarrhoea and/or constipation and as I have an in-dwelling urinary catheter this gives added complcations should these happen, plus extreme tiredness also seems to be a factor.  I know no-one can make my mind up for me and everyone reacts differently but others first-hand experience would be really helpful.

Thank you.

Chris

User
Posted 03 Dec 2019 at 16:10
Hi Chris so sorry to hear of your situation and am beginning to understand how you feel now I’m approaching HT and incurable. I can’t answer your question as haven’t had normal chemo yet , but I’d want to clearly understand the 3 month bit ?? I’ve based my journey so far on QOL and luck has been on my side till recently. But I agree the thought of 7 months Chemo and unpleasantness just to buy 3 months life seems quite extreme. I’m pretty sure I wouldn’t do it but I guess I won’t know till I’m in that awful situation. I can only wish you the best.
User
Posted 03 Dec 2019 at 21:36
My husband is in a similar position. Enzalutamide has seemed to have stopped working as PSA has been increasing over the last few months. My husband has been well and minimal pain so not keen to have anything to make him feel worse and reduce his quality of life. We had been offered 2 different phase 3 trials and then told he did not qualify for either. Doctor suggested looking into phase 1 trials and keeping on Enzolutamide but different doctor stopped Enzalutamide and told us it was a "no brainer" he must start Cabazitaxel straight away and not look at trials. Told my husband would be unlikely to get through all 10 sessions and that was last treatment and probably too weak to try trials afterwards. PSA would just go up and up. Very little extra life expectancy. If the Cabazitaxel was giving a couple of years then we would go for it but suggested only while on it and then go down rapidly.

We are waiting for the trials team to get back to us this week and see if anything on offer. Our thoughts at this time is to enjoy Christmas with family - difficult to travel while on Chemo so last chance to go up north and then start Cabazitaxel in the New Year if that is the only option.

User
Posted 03 Dec 2019 at 23:16

This study may be some use in your decision making:
http://prac.co/l/tykczbr

 

User
Posted 04 Dec 2019 at 02:46

My husband had a combination of cabazitaxel and Carboplatin at the same time and his side effects were minimal, quite honestly. On the other hand, he had 3 doses and scans indicated that it did not work for him. However, limited side effects, including no hair loss. He switched to Etoposide and cistoplatin for the last two rounds and he is now losing his hair and his body is fighting hard (low platelets, red and white blood cell counts, and fevers). They reduced his dose by 20% today.  That is more than you wanted, but as you asked, minimal aide effects to Cabazitaxel. He is a badass however ;)

Edited by member 04 Dec 2019 at 02:46  | Reason: Not specified

User
Posted 04 Dec 2019 at 04:30
Hi Chris,

Strangely enough my journey appears to be very similar at the moment. I had 6 rounds of docataxal in 2016 which went well and brought PSA down to the normal range. Over following two years it went well until last year and then had another 10 rounds of docataxal. Again the side affects were minimal and got through it reasonable well, however the end result wasn’t what we wanted. I was given 3 months rest period before I started 6/10 rounds of cabazitaxel. This was a bit harder and I found the fatigue hard going, but that was my only SE. However again I knew this wasn’t working as PSA was rising, no hair loss, etc, after six rounds they stopped it.

Now I too have just about reached the end of the barrel with only drug trials to be tried. Personally I’d give anything a go to extend time.

Good luck

Steven

User
Posted 06 Dec 2019 at 14:17

Thanks to all of you who took the time to reply with information and support.  I see my Consultant again just before Xmas so I expect this will be decision time.  Still, just the election to get through until then!

Chris

User
Posted 13 Dec 2019 at 10:31

HI Chris, in my humble opinion Cabazitaxel is the bomb. Much less impact on me than docetaxel. I am taking a 3 week break after round 7 which I just had two days ago. (10th December 2019) . Cabazza is the standard of care here in Oz. I hope you get some respite with whichever treatment you pursue. 

regards

IBIS

User
Posted 13 Dec 2019 at 15:12

Hi Ibis - thanks for your encouraging response and good to have some positive feedback.

Can only assume your weather must be an improvement on the greyness and dampness we have here - great to see how far afield our on-line community spreads.  Hope all continues well for you.

Best wishes - Chris

User
Posted 13 Dec 2019 at 20:23

I have just had my 2nd dose of cabazitaxel. The alkaline phosphatase is reducing nicely but they forgot to do the Psa after the first cycle! Anyway I shall report back how it goes.

User
Posted 16 Dec 2019 at 16:11

I appreciate your post and question, we will be at this point in the near future perhaps if the trial hubby is on does not work.  We have both said we will carefully think about more treatment and quantity of life over quality.  It is a dreadful thought and I barely keep it together most days.  I read all your stories on here and know how tough going it is for all of you.  Thank you for sharing your information and my prayers are with you.

Saint Paul

User
Posted 23 Nov 2020 at 13:37

Hi Chris B,

New to the forum but I am facing the same decision as you did last December. I see from your profile that you went with the Cabazitaxel but there has been no update since May.

How have you found the treatment side effects wise and has it been effective and 'worth it' as you ask in your opening post.

User
Posted 23 Nov 2020 at 22:17
My husband eventually started Cabazitaxel and had cycle 3 last week. Minimal side effects. He had high level of pain just before and was on Morphine but now almost no painkillers needed. Also he is back walking which is great. PSA had gone back over a thousand and has now reduced by about a quarter.
User
Posted 24 Nov 2020 at 10:11

Hello Round Peg - I am sorry to tell you my husband, Chris, died on 18th September 2020.  It gave me quite a jolt to see this post revived this morning - I still check on the Online Community to see how people are getting on.  Chris had 8 out of the proposed 10 sessions of Cabazitaxel but it was stopped early June as it was no longer doing what it was supposed to and also the side effects were becoming more unpleasant - after this he slowly began to deteriorate before being admitted to hospital mid-August with an infection and dehydration - he was there for 2 weeks and treated with antibiotics, several blood transfusions and saline drips before being transferred to a local Nursing Home under emergency Continuing Care where he died 2 weeks later - on the day he died we had been married for 45 years and 5 days.

Was the Cabazitaxel worth it?  We both decided it was - when he started in January he was in quite a lot of pain - thigh, hip and back - but by February the pain had gone and side effects were fairly minimal.  He then had about 4 months pain free and feeling well - of course coronavirus didn't help and as Chris was shielding we couldn't get out and about, meeting friends and going for meals during the 'good' white cell times as we had before, but if times had been 'normal' these 4 months would have been a real bonus.  As it was, the weather was wonderful and he was able to read several of those books he'd always meant to read but never had time for before!  When he was first diagnosed he was told he probably had about 3 - 5 years - well, he managed 4 years 8 months, mostly feeling really well and with good quality of life which was a lot more than we expected during the early dark days.

Of course the restriction to 30 people at Chris's funeral was a challenge, as it is for everyone, but I asked for donations to Prostate Cancer UK in his memory and the funeral director contacted me just last Friday with the final list which totalled just over £1,200 - a truly impressive amount - he would have been astonished.  Prostate Cancer UK has been a lifeline to us - not just the research they fund but the practical support and information, online community of course and the wonderful Specialist Nurses always at the end of the phone - so will always be grateful to them.  Of course, Chris's prostate cancer was very advanced by the time it was diagnosed - he had had no symptoms at all expect for pain in his thigh which his GP at the time said was a 'trapped nerve' - it was only when Chris decided to see an orthopaedic consultant privately that an X-ray showed bone mets rather than a trapped nerve.  Life is somewhat surreal for me at the moment - I feel I am living someone else's life - knowing this would happen for over four years has not made it any easier or less of a shock but thank goodness for supportive friends and family - Gillyflower I read your posts and totally identify with what you are going through but I know things will improve eventually.  Take care all of you and stay safe.

Best wishes - GKP

 

 

User
Posted 24 Nov 2020 at 10:17

I am so sorry to read your post , Prostate cancer is such a cruel indiscriminate disease.

thank you for sharing the last few months of the journey here, I know posts like yours help me and others understand what may be in time to come.

please accept my belated sincere condolences and thank you for the collection to this  great charity that supports us all so well.

 

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 24 Nov 2020 at 11:36

GKP,

Thank you so much for your reply it must have been very difficult to post. I am so sorry that it was news that nobody wanted to hear. It has however still helped me, so thank you again and take care.

User
Posted 24 Nov 2020 at 11:42

Chris's wife, so sorry to read your update, belated condolences. It gives immense help and hope to fellow sufferers to see how someone with a relatively high starting PSA level can almost attain 5 years survival.

We all know we are going to tread the same path and leave loved ones behind and it's so hard even though our poor partners have advanced warning with this cruel disease.

Take care. RIP Chris.

User
Posted 24 Nov 2020 at 12:09

GKP

So sorry to hear of your loss, please accept my sincere condolences. Love and hugs.

Thanks Chris

User
Posted 25 Nov 2020 at 11:58

Sending best wishes to Chris's wife, sorry for the loss of Chris.

I echo Jasper's message as it is good to hear of an almost 5 years survival and hope my husband will reach that too. Thanks for sharing your story. 

Edited by member 25 Nov 2020 at 11:59  | Reason: Not specified

Mrs MAS

 
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