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Triple chemo/darolutomide V Enzalutomide

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User
Posted 15 Jun 2023 at 10:50

Hello everyone..has anyone been offered or going through chemo (Doxataxel) together with Darolutomide, also 3 monthly zodalex injections apparently this is a new treatment for early metastatic prostate cancer.  It’s time sensitive we need to decide soon whether to try this or Enzaloutomide with no chemo (poss side effects are terrifying).

my husband is feeling REALLY GOOD ATM and we would like him to stay that way for a while longer yet, the chemo could put him out of action for some things like travelling etc…we have a 5 year old grandson to visit in the US (he just had chemo) and a long promised holiday.

he’s only just started the hormone injections, but apparently he’s young enough to have this triple chemo thing, and he needs to start the chemo treatment within three months of starting the hormones, so we’re looking at end July.  It’s really hard to decide..and although the medical team are suggesting the chemo as a good option,my husband is really anxious, our Grandson has just been through a year of chemo treatment for leukaemia, but that was to cure him.  This is to (hopefully) extend his life, but at what cost to his quality of life!  

He doesn’t fancy the chemo option.

He’s thinking of Enzalutomide, as less treatment needed, but terrified of poss side effects.

if anyone can share any experiences with us we would be so very grateful…I know it will be up to my husband in the end and everyone is different, but it would be a huge help 

hubby age just 62,  recently diagnosed Gleason 9 stage 4 in lymph nodes (only atm). PSA was 46 now 4.8 did have kidney stents fitted after prostate blocked kidney tubes, was in hospital for three weeks with nephrostomy  bags, now has stents, working well.

sorry this is a long one, my first post here..beginning of our journey.

User
Posted 22 Jun 2023 at 16:57

Hi LindaR,

Re your query, I can give you the experiences, to date, of a not that fit 75 year old who has no other known health complications. I was diagnosed with prostate cancer last October with a PSA of 476. On ADT from mid-November after cancer confirmed as metastatic to the bone. PSA down to 19.5 by mid-December. It was a very scary time - especially for my wife.

Started to do as much research as possible on treatment options and their pros and cons, and discovered that Darolutamide triple therapy had been conditionally fast-tracked by the NHS prior to obtaining official approval by NICE (which just happened on 21st June). Recommend you see the NICE website and the report of the ARASENS trial (https://www.nejm.org/doi/full/10.1056/NEJMoa2119115) which has informed oncologists in the States, UK, and Europe.

On my own judgement, I asked to go on the Darolutamide triple therapy (my oncologist didn't then know about the fast-track approval or much about ARASENS). Logic was that all treatments had side effects but, thinking long term, Darolutamide appeared to be the most tolerable anti-androgen (for example, no 'brain fogs'). Moreover, I thought that I would be more able to tolerate Docetaxel now than in, say, three to five years time. Subject to a warning about the possible side-effects of chemo, particularly infections leading to sepsis, I started Darolutamide mid-February and chemo mid-March (PSA then 0.7).

My experience of chemo - Ok for a day or so after a session, then a bit tired with occasional fatigue, which has increased over the sessions. Some hair loss, including a little body hair, after Session 1, but none since. Some loss of taste after each session and one or two mouth abscesses. Biggest issue for me was (is) swollen hands and fingers with tingling and slight loss of feeling at finger tips for about a week after chemo during the nadir days (5-8) - although that is lessening. Agree with 'jellies' that the quality of life during chemo is not too bad with, roughly, a week of tiredness, a week of caution avoiding risk of infections (under wife's careful eye), and then a week of some normality, although need to go for the next chemo blood test (last PSA 0.2) and a consultation (usually by phone) with the oncologist 'or a member of the team', before the next chemo session. The time on chemo passes quickly (my last one is next week) and, although one cannot predict the long term results, I feel I made the right choice - for me. That is the point - everyone's situation is different and everyone's experiences of the different treatment options and results are different. Whatever your husband decides he and you have my best wishes for a long and happy future.

 

Edited by moderator 06 Jul 2023 at 10:58  | Reason: Not specified

User
Posted 15 Jun 2023 at 10:50

Hello everyone..has anyone been offered or going through chemo (Doxataxel) together with Darolutomide, also 3 monthly zodalex injections apparently this is a new treatment for early metastatic prostate cancer.  It’s time sensitive we need to decide soon whether to try this or Enzaloutomide with no chemo (poss side effects are terrifying).

my husband is feeling REALLY GOOD ATM and we would like him to stay that way for a while longer yet, the chemo could put him out of action for some things like travelling etc…we have a 5 year old grandson to visit in the US (he just had chemo) and a long promised holiday.

he’s only just started the hormone injections, but apparently he’s young enough to have this triple chemo thing, and he needs to start the chemo treatment within three months of starting the hormones, so we’re looking at end July.  It’s really hard to decide..and although the medical team are suggesting the chemo as a good option,my husband is really anxious, our Grandson has just been through a year of chemo treatment for leukaemia, but that was to cure him.  This is to (hopefully) extend his life, but at what cost to his quality of life!  

He doesn’t fancy the chemo option.

He’s thinking of Enzalutomide, as less treatment needed, but terrified of poss side effects.

if anyone can share any experiences with us we would be so very grateful…I know it will be up to my husband in the end and everyone is different, but it would be a huge help 

hubby age just 62,  recently diagnosed Gleason 9 stage 4 in lymph nodes (only atm). PSA was 46 now 4.8 did have kidney stents fitted after prostate blocked kidney tubes, was in hospital for three weeks with nephrostomy  bags, now has stents, working well.

sorry this is a long one, my first post here..beginning of our journey.

User
Posted 15 Jun 2023 at 22:09

Definitely do your research.  I didn't like the sound of chemo or radiotherapy.  Too many side effects.

I went for apalutamide in the end, didn't like the sound of brain fogs possibly on enzalutamide.

So far so good for me 13 months in. Only have tiredness and sweats - but most of the treatments give you these. Other issues - losing body hair, but growing back on my head! Next to no libedo - but the treatment is basically castration, so no suprise there!

User
Posted 15 Jun 2023 at 22:44

The triple therapy you mention represents some of the latest thinking in treatment of newly diagnosed metastatic prostate cancer.  Plus the medical team are recommending it so they think it will give him best chance of remission.  So given you husbands relatively young age I would give it serious consideration.  I have been through chemo and quality of life was no too bad over the 18 weeks and I recovered pretty quickly.  

 (You don’t say where the lymph nodes are located, but I’m assuming some are outside the pelvic region and therefore radiotherapy is not an option).

Edited by member 15 Jun 2023 at 22:44  | Reason: Not specified

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User
Posted 15 Jun 2023 at 11:25
This is just a personal view but there is little point extending life if the means of doing that prevents you from living. Yes, triple therapy is showing great results but it isn't a cure. Refusing triple therapy now does not mean that he can't have chemo later - and the impact in terms of longevity is really quite small. So if it was my husband, we would have the holidays, see our grandchild, make memories and hope the enza is effective for a long time. When the enza fails, then we would look at chemo.

Having said that, docetaxel is nothing like the chemo used for leukaemia - most men tolerate it quite well. We have men here who continued working full time throughout chemo, you just have to be careful about infection and take it easy between days 5-8. Side effects like finger & toe nail problems, the metallic taste and mouth ulcers can be helped. Some men get peripheral neuropathy but by no means all. The problem isn't so much the chemo, it's that it happens every three weeks which gives you only small windows of opportunity to do nice things.

He shouldn't be terrified of the side effects of enza - they are very similar to abiraterone, darolutimide and the first line hormone treatments like zoladex. Technically, enza, abby and daro are all chemotherapies as chemotherapy just means 'treatment with chemicals which affect the whole body rather than just the tumour. So, whichever treatment option he goes for, it will be impossible to tell which side effects are which drug.

PS some oncologists will allow darolutimide instead of enza or abby

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

User
Posted 15 Jun 2023 at 11:42
THANK YOU SO MUCH! Our thoughts are similar to yours.

Sending you lots of good wishes and thank you for taking the time to reply!

User
Posted 15 Jun 2023 at 22:09

Definitely do your research.  I didn't like the sound of chemo or radiotherapy.  Too many side effects.

I went for apalutamide in the end, didn't like the sound of brain fogs possibly on enzalutamide.

So far so good for me 13 months in. Only have tiredness and sweats - but most of the treatments give you these. Other issues - losing body hair, but growing back on my head! Next to no libedo - but the treatment is basically castration, so no suprise there!

User
Posted 15 Jun 2023 at 22:44

The triple therapy you mention represents some of the latest thinking in treatment of newly diagnosed metastatic prostate cancer.  Plus the medical team are recommending it so they think it will give him best chance of remission.  So given you husbands relatively young age I would give it serious consideration.  I have been through chemo and quality of life was no too bad over the 18 weeks and I recovered pretty quickly.  

 (You don’t say where the lymph nodes are located, but I’m assuming some are outside the pelvic region and therefore radiotherapy is not an option).

Edited by member 15 Jun 2023 at 22:44  | Reason: Not specified

User
Posted 16 Jun 2023 at 17:52
Thank you so much everyone
User
Posted 22 Jun 2023 at 16:57

Hi LindaR,

Re your query, I can give you the experiences, to date, of a not that fit 75 year old who has no other known health complications. I was diagnosed with prostate cancer last October with a PSA of 476. On ADT from mid-November after cancer confirmed as metastatic to the bone. PSA down to 19.5 by mid-December. It was a very scary time - especially for my wife.

Started to do as much research as possible on treatment options and their pros and cons, and discovered that Darolutamide triple therapy had been conditionally fast-tracked by the NHS prior to obtaining official approval by NICE (which just happened on 21st June). Recommend you see the NICE website and the report of the ARASENS trial (https://www.nejm.org/doi/full/10.1056/NEJMoa2119115) which has informed oncologists in the States, UK, and Europe.

On my own judgement, I asked to go on the Darolutamide triple therapy (my oncologist didn't then know about the fast-track approval or much about ARASENS). Logic was that all treatments had side effects but, thinking long term, Darolutamide appeared to be the most tolerable anti-androgen (for example, no 'brain fogs'). Moreover, I thought that I would be more able to tolerate Docetaxel now than in, say, three to five years time. Subject to a warning about the possible side-effects of chemo, particularly infections leading to sepsis, I started Darolutamide mid-February and chemo mid-March (PSA then 0.7).

My experience of chemo - Ok for a day or so after a session, then a bit tired with occasional fatigue, which has increased over the sessions. Some hair loss, including a little body hair, after Session 1, but none since. Some loss of taste after each session and one or two mouth abscesses. Biggest issue for me was (is) swollen hands and fingers with tingling and slight loss of feeling at finger tips for about a week after chemo during the nadir days (5-8) - although that is lessening. Agree with 'jellies' that the quality of life during chemo is not too bad with, roughly, a week of tiredness, a week of caution avoiding risk of infections (under wife's careful eye), and then a week of some normality, although need to go for the next chemo blood test (last PSA 0.2) and a consultation (usually by phone) with the oncologist 'or a member of the team', before the next chemo session. The time on chemo passes quickly (my last one is next week) and, although one cannot predict the long term results, I feel I made the right choice - for me. That is the point - everyone's situation is different and everyone's experiences of the different treatment options and results are different. Whatever your husband decides he and you have my best wishes for a long and happy future.

 

Edited by moderator 06 Jul 2023 at 10:58  | Reason: Not specified

User
Posted 23 Jun 2023 at 13:25
thank you all so much - were almost decided! two more weeks to D day!
User
Posted 23 Jun 2023 at 14:53

Hi 

Being put under myself in the morning to have kidney stones removed,will let you when I awake.

Regards Phil 

So sorry posted on wrong thread 

Edited by member 23 Jun 2023 at 14:54  | Reason: Not specified

User
Posted 17 Jul 2023 at 19:57
I had my six cycles of docetaxel in the second half of last year. I would say generally days 3-9 were worst for being effectively wiped out and listless. Lost my hair two weeks into C1, spent the next six months under a woolly hat as the back of my head got strangely cold. My straight hair has come back wavy. Recovery once C6 is completed was quite quick. My finger and toe nails were mostly intact, but each nail had six wavy lines like a sandy beach at low tide, and as they grew out the finger nail wavy lines started to delaminate which was a bit annoying.

You assume that chemo will give the cancer a bit of a kicking, but in my case it seems to have stimulated it into more action. My PSA went from 0.6 in December and as of last Friday was registering 98.2! Five years of Prostap jabs seems to be wearing off, and today I picked up my first month's supply of enzalutamide to supplement it.

I guess we are all different and at different stages of our disease/treatment, so my experience may be very different from other people's.

For what it's worth, my latest blog update is at https://stewart124.wordpress.com/the-prostate-thing-31-justified-scanxiety/

 
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