Docetaxel + Darolutamide + Zoladex (LHRH)

User

Posted 19 Jan 2023 at 09:56

Hi to all

So I've started my chemo journey 1 week ago (12th Jan 2023), and I am on Docetaxel (3 weekly IV) + Darolutamide (daily tablets) + Zoladex (3 monthly LHRH implant). Other assistant drugs of steroids and anti-sickness are mixed in at relevant times. My starting PSA was 990.

I will be 51 soon, about 87kg and actively working from home in IT while still attending to my families needs (school run etc) while I can.

The first few days weren't too bad. I was expecting to be wiped out with tiredness but I didn't feel dopey tired but a bit achy like when you get a cold. No Nausea at all (but had 3 days of meds for that just in case, and got hiccups from those). Since they start you on the LHRH early I had my 1 month implant for that on 19th Dec 2022, and the side effects of that are pretty immediate of 2-3 hour urges for urination including all through the night, along with dry mouth and a small change to taste. That for me is very disruptive to my sleep (I'm used to being up once a night).

A few days after the Docetaxel my taste was almost completely gone, or was just making everything ultra bland, I wouldn't describe as metallic as such but it's not pleasant. Because I started the tablet chemo (Darolutamide) straight away with the IV, it's hard to tell what side effects are from what currently. My taste has come back somewhat so that's why I think it's the IV doing that.

Now I'm at a week in I'm feeling pretty sore, and have done for last 5 days. Just about everywhere has stabbing electric-type pains 24 hours. Sometimes it feels like muscles will give way as I walk but they haven't so far. Wrists and Ankles hurt the most like they've been bend around harshly and now recovering. I would say all of this is pretty tolerable without any pain killers, but for the fact I get upper back indigestion pain a lot which stops me sleeping. Right now I think maybe that's my fault due to poor food choices so will try to do better, but I've also been given Omeprazole to help.

Apparently the soreness from the IV chemo might subside, but it also might be continuing because of my daily chemo tablets, so I'm waiting to see.

It's only been a week but it feels like a month already and I need to try and power through this until end April at least. I think they will wait 1-2 months before checking for any real changes via CT scan.

In a way I feel lucky to be getting the Darolutamide since it's new and expensive and Bupa are just covering everything without question, but I also think it's kicking my arse and could get to be a struggle to maintain.

Trials in Metastatic cases are few currently but they indicate a possible extra 13% survivability after 4 years (63% up from 50%) on average, and can extend the hormone sensitive period, so I'm trying to keep with it.

I'm keeping a daily dairy but just wanted to give a (long) summary of my experiences on this in case it can help others.

Rob

User

Posted 19 Jan 2023 at 09:56

Hi to all

I will be 51 soon, about 87kg and actively working from home in IT while still attending to my families needs (school run etc) while I can.

Apparently the soreness from the IV chemo might subside, but it also might be continuing because of my daily chemo tablets, so I'm waiting to see.

I'm keeping a daily dairy but just wanted to give a (long) summary of my experiences on this in case it can help others.

Rob

User

Posted 29 Jan 2023 at 11:36

The other thing I thought I'd mention is I now have a new side effect, which is the hair follicles hurting if my hair is moved. Obviously a very common symptom but wasn't expecting it to start 2 weeks after first Chemo. Beard growth has really slowed to almost nothing after a clean shave days ago. I think I'll probably run a clipper over my head today and start wearing my beanies.

User

Posted 10 Feb 2023 at 13:27

That is good advice I think. I have done a bit more digging into my situation and it turns out I had 3 higher doses of it while I was in hospital when they were trying to get my white cells up quickly, so a prophylactic dose will be even milder. I had no side effects that I know of in hospital.

User

Posted 24 Feb 2023 at 10:21

I have been prescribed three treatments to avoid mouth issues and reflux.

Bioextra gentle mouthwash - 2xdaily

Mycostatin oral drops - 2xdaily (for fungal infection)

Pantoprazole daily for reflux

No issues after 5 chemo sessions. Might be worth asking about the mouthwash and Mycostatin to see if it helps. Good luck.

Edited by member 24 Feb 2023 at 10:23 | Reason: Not specified

User

Posted 24 Feb 2023 at 17:23

Assuming you have no heart problems, the best solution for mouth soreness / ulcers / the horrible metallic taste is to suck frozen pieces of fresh pineapple during the infusions. If you can't have pineapple because of your heart, ice cubes are a good substitute

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

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User

Posted 19 Jan 2023 at 18:13

Hi Rob

Forgive my ignorance but I presume you are keeping enza till later in the treatment journey as I had a starting PSA of 2100 and was offered by my NHS group enza or chemo I chose enza psa now down to 0.48 my next bloodtest is next month which I will post on my profile.

Regards Phil

User

Posted 19 Jan 2023 at 19:02

Good result Phil keep battling gaz 👍

User

Posted 19 Jan 2023 at 19:52

Great response Phil!

User

Posted 19 Jan 2023 at 20:54

Originally Posted by: Online Community Member

Hi Rob

Regards Phil

Hi Phil, the darolutimide trumps any offer of enza / abi / apalutimide - being offered it is rarer than hens' teeth. That doesn't necessarily mean that Rob would not be able to try enza in the future when the darolutimide fails but the drug is so new that we don't really know how NICE will approach the 'what next' question.

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

User

Posted 19 Jan 2023 at 21:05

Hi Rob, darolutimide has more or less the same side effects as any other type of hormone treatment - fatigue, muscle loss, joint pain, fuzzy thinking, spreading pelvic girdle. There is no suggestion that it can cause side effects relating to taste, apart from the rare risk of having a seizure (which can be preceded by a strange taste in the mouth or an odd smell).

Docetaxel is known to affect the taste buds. Side effects of docetaxel tend to be at their strongest around days 5 - 8 after the infusion, and can be cumulative so the side effects each month are worse than the month before. Assuming you don't have any heart problems, you can minimise the sore mouth / ulcers / loss of taste / weird taste by sucking cubes of frozen pineapple during the infusion. If you cannot have pineapple, sucking ice cubes is the next best thing.

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

User

Posted 19 Jan 2023 at 21:36

Hi Lynn

Over the last week or so I'm seeing the drug darolutimide pop up,I've made a mental note of it,that perhaps when my enza fails (hopefully not for a few more years)it becomes more available and offered to me on the NHS,do you think this maybe an option?

Regards Phil

User

Posted 19 Jan 2023 at 22:32

At the moment no - it is approved for men who are castrate resistant and have no mets. As this is quite a rare situation to be in, not many people are getting it. There is a semi-trial going on at the moment to test it on men who are castrate responsive and have mets - if that is successful, it may get NICE approval in the future. Even then, it would have to significantly outperform abi / enza / apa and a trial would have to be set up to see whether it can be effective post-abi / enza / apa.

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

User

Posted 29 Jan 2023 at 11:03

Hi All

Sorry for the lack of feedback from me, it's really good to see the comments above.

The reason I have been unable to respond is of course I got myself into a neutropenic sepsis situation 8 days after my first Chemo. I thought I was careful but obviously not enough (probably my daily walks around town, with the occasional pop into Iceland etc). So on this 8th day my legs from the knee down were on fire approaching the evening and I'd put it down to just more intense version of the normal chemo pain. However by 3am one of my knees was hurting so bad, and paracetamol wasn't helping, I had it on an ice pack until the morning when I called my oncologist (out of hours). Stupidly I hadn't taken my temperature which I now realise was the very first thing I should have done. It was 38.9 by the morning and I found myself up at A&E being fast tracked for wide spectrum antibiotics. 5 days I was in hospital while they got me stable. The bug that got in was Strep A so we had the government health agency in contact to make sure everyone around me had fast access to penicillin at the GP if they were to get symptoms, but luckily that was all clear.

I was told to stop the Daralutamide while I was being treated in hospital, as they were trying to get my white cells back up.

So I'm on a month of targeted antibiotics (IV from home for 11 days via a midline they inserted in my arm), then 14 days of tablet amoxicillin. I find out on the 6th Feb if I can restart my chemo while doing the tablet AB but likely it will be later that week so I'll only be 1 week behind schedule.

One of the things I am seriously thinking about is surgical castration. It wasn't offered to me before the ADT implant and I really hate the side effects from that, so I'll be having the discussion on when it could be possible to get the boys chopped off instead (I don't have any need for them anymore).

Edited by member 29 Jan 2023 at 11:04 | Reason: Not specified

User

Posted 29 Jan 2023 at 11:14

Originally Posted by: Online Community Member

I chose enza psa now down to 0.48 my next bloodtest is next month which I will post on my profile.

Regards Phil

That's very encouraging Phil. The only PSA reading I've had since my initial diagnosis was just before my first chemo, so I had only been on the ADT tablets/implant for a few weeks, but that alone dropped it from 990 to 218. Will be interesting to see my first reading after chemo which will likely be in a few weeks time.

Rob

User

Posted 29 Jan 2023 at 11:36

User

Posted 29 Jan 2023 at 13:23

Thanks for sharing your experience. I commence a course of 10 Docetaxel treatments next Monday so long as blood results etc allow it. It is good to hear how it is impacting on you. Sorry to hear about some of the side effects you have had not least your hospitalisation. Hope in the next few cycles things settle down for you and of course that the treatment works well for you.

Best wishes

Michael

User

Posted 29 Jan 2023 at 13:24

Sorry to see this Amarokada - hopefully, you will not experience that again! If your head gets sore, buy bamboo beanies rather than normal ones - kinder to your skin.

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

User

Posted 07 Feb 2023 at 13:10

Yesterday I went back on the Darolutamide after my break recovering from hospital. At the same time I also switched my anitbiotics to Amoxicillin (for 2 weeks). The combination isn't playing nice, and possibly it's just the Darolutamide on its own, but I had full body aches (mostly at wrists and ankles) and had night sweats.

This is the first time I'm able to see the side effects of Darolutamide while I'm not also on my IV chemo, and I hope this is just the shock of going back on it (and the mix with antibiotics). Since this is a daily treatment it worries me whether I can tollorate it for months or years. I was rather hoping all my aches and pains were from the Chemo since that has an end date.

User

Posted 07 Feb 2023 at 22:24

Hi Amarokada

I have exactly the same effects on Enzalutamide,full body aches and night sweats 😓 reminds me when I used to play Sunday morning football and how I felt on a Monday morning.

User

Posted 08 Feb 2023 at 07:24

I will say that by the 2nd day back on Daro I'm feeling much better. I don't know if it was the shock of going back on or if I just had something else going on that first day, but I feel it's important to state a big difference over the 2 days and this morning (3rd day) I'm feeling ok too. I will of course see how that is between now and my next IV chemo (16th) as it's a good time for me to understand the real side effects of it.

User

Posted 10 Feb 2023 at 11:18

Hi All

I have some questions to those with experience of these topics. I have my 2nd IV chemo next Thursday and they are dropping my dose from 75mg to 60mg which is apparently fairly normal when evaluating the effects of the 1st dose, but it is mainly in response to my neutropenia the last time and to aid that further they want to give me an injection of Pegfilgrastim which is to help boost my immune system.

I'm worried about the side effects of Pegfilgrastim. The Oncologist said full body aching which would already be something I get from the Chemo, and looking at the drug online the other common side effects are offputting. I feel that I can do a better job of protecting myself during my neutropenic state this time around, so I'm thinking about asking to drop the Pegfilgrastim. Any comments on this?

Also I will be talking to a urologist on Monday about surgical castration which can only happen once I'm all finished with Chemo and back to somewhat normal state. I want the castration because I don't like the LHRH hormone injection (Zoladex) which is likely to have to go on for several years if my cancer stays sensitive to it. Does anyone have experience of this op and whether they went with prosthetic balls or not (I don't suppose I'm going to be that bothered tbh). Were there any side effects?

Thanks in advance

User

Posted 10 Feb 2023 at 13:12

I'm using Neulasta or Pelfigrastim with no issues. It's a simple injection the day after chemo.

My approach is not to worry about side effects that I probably won't get so I haven't even looked at the SE list for Neulasta.

User

Posted 10 Feb 2023 at 13:27

User

Posted 18 Feb 2023 at 07:55

LIttle update, I had my 2nd IV Docetaxel yesterday. 20% smaller dose than first (150mg down to 120mg, which is 60mg2 for my weight and height).

This was a day later than planned because I screwed up taking my pre-steroids the night before (took 1 tablet instead of 4), and they were right to send me home and re-do it for the next day as the 2nd chemo session is apparently usually a bit more of a shock to the system with it having learned how much it didn't really like the 1st one.

This turned out to be true for me, 10 mins into the IV and I suddenly got sharp chest pains which quickly spread to my mid and lower back, then a little nausia and lightheadedness and I lost all colour from my face. Hot flush as well but by the time all of this set in I had 3-4 docters/nurses there that had put the drop on hold and were checking my breathing etc. A little self meditation to try and calm the situation and avoid being sick and I managed to get it to pass, I was back to mostly normal after 10 mins.

They put some antihistamine, more anti nausia and something else through my cannula and let that settle for 30m before starting the poison again, and I was fine after that. I won't lie though it did have me scared when the pains kicked in since it was so sudden and I didn't expect chest and back pains escalating so quickly, I had no idea where that was going. But of course the staff were great, they knew all about it, they've seen it all before and I was in excellent hands.

After a sleep in my own bed, just handling the usual starting aches and pains and general heavy body feeling that I expect will last me a week. Oh and of course the lack of taste for some foods.

User

Posted 22 Feb 2023 at 19:24

Was back in A&E today, this time for chest pains (intensifying heart palputation type pain where pain would rush towards the centre of my chest in time with my pulse to the point it felt like something was gonna burst out). Most of yesterday I had it but it wasn't so strong so I wasn't too worried, but then I woke at 2am with a more intense version of it that I couldn't just "relax" away.

Went to A&E and ended up there for 12 hours :( They did all various tests, ecg, bloods, ultrasound, CT with dye, but they all discarded any serious underlying issue that would normally cause such pain, including checking the aorta. So the verdict was it was likely just a pain I got this time around on the Docetaxel and I just have to deal with it. Which is easier that I've now been checked out, but 12 hours in an A&E while in early fatigue stage of chemo was no fun. Thanks to the Pelgraz injection this time round though I wasn't neutropenic, white cells were actually elevated.

User

Posted 22 Feb 2023 at 20:06

Sorry to hear that you a reaction to the chemo.

Do you mind me asking which a&e that you went to, as that seems like an amazing assessment. In my local a&e they just see you and kick you out the front door without any investigation or follow up!

User

Posted 23 Feb 2023 at 06:55

It was QEQM. In Margate. They were quick to triage, but I didn't get to see the first doctor until 9 hours after, because they are just so overwhelmed. But I felt they were professional and caring once my time came, and they weren't scared to add on further tests.

User

Posted 23 Feb 2023 at 20:39

Must have been difficult to wait for so long. At least you know you have been thoroughly investigated.

User

Posted 24 Feb 2023 at 06:56

1 week now after my 2nd Chemo session. Chest pains have thankfully reduced to background levels, muscles still aching but that's all easy to deal with. One thing that's hit me harder this time is sore tongue, I've tried to be careful with hot and cold and I use a toothpaste that doesn't have the foaming agent in. I'm hoping soft tissues get a chance to recover before the 3 week cycle of chemo.

User

Posted 24 Feb 2023 at 07:09

You might have a fungal infection of the tongue, might be worth asking your GP?

User

Posted 24 Feb 2023 at 07:42

Ah no it's not that bad, it's just a slow progression to soreness since it has trouble regenerating the cells. I was expecting it but just didn't know if typically you get enough time before the next chemo for it to heal, otherwise it could get nasty over the longer term.

User

Posted 24 Feb 2023 at 10:21

I have been prescribed three treatments to avoid mouth issues and reflux.

Bioextra gentle mouthwash - 2xdaily

Mycostatin oral drops - 2xdaily (for fungal infection)

Pantoprazole daily for reflux

No issues after 5 chemo sessions. Might be worth asking about the mouthwash and Mycostatin to see if it helps. Good luck.

Edited by member 24 Feb 2023 at 10:23 | Reason: Not specified

User

Posted 24 Feb 2023 at 17:23

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

User

Posted 24 Feb 2023 at 17:42

Thank you, I will try that. I remember it was mentioned before (several times) and I forgot.

User

Posted 10 Mar 2023 at 09:01

3rd chemo yesterday. No real dramas, but I was very apprehensive after the last one gave me bad chest pains, so I did ask them to stop soon after I felt some mild chest pains and they changed the egress rate on the IV to half speed. We're going to keep it like that for the remaining ones too. Not too bad since it's only a 1hr IV normally. Half way through my Docetaxel now.

I did get my new PSA reading back of 23.1.

PSA history to date:

12th Dec 2022 990
11th Jan 2023 218
7th Feb 2023 62
9th Mar 2023 23.1
30th Mar 2023 13.2 (just before 4th chemo) I will edit this msg for PSA readings from now on.

Edited by member 31 Mar 2023 at 03:50 | Reason: new PSA reading to add

User

Posted 17 Jul 2023 at 12:11

Thought I'd give a bit of an update on my treatment.

I completed my 6th and last Chemo session on 11th May 23
I had bilateral subcapsular Orchidectomy on 3rd July 23
Had spacer insertion in prep for 6x VMAT radiotherapy sessions, but have postponed or cancelled RT until further notice as I'm battling high BP and other issues and just can't deal with RT right now.

20 Apr PSA 10.4
11 May PSA 6.67
1 June PSA 5.87
29 June PSA 1.99
27 July PSA 0.65

Subjectively though I do seem to be having some pains and side effects, like my eyesight has worsened quite a bit, and I have a few painful areas in my torso that feel like pulled muscles but don't seem to disappear after after months.

I'm having to get weekly blood tests due to some liver function results that are higher than they should be. I'm not sure yet but it could be leading to me coming off the Darolutamide if my body is getting tired of it.

Edited by member 31 Jul 2023 at 11:27 | Reason: Added new PSA reading

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