Chemo or not!!

User

Posted 01 Dec 2022 at 15:41

Hello, I am 77, diagnosed with Advanced Prostrate Cancer one year ago, I was given temporary Biclumide and 6 monthly hormone injections. Last January I was started on Apultumide and felt great, however 7 months later PSA levels started to rise, following scans they say the cancer has spread and to stop taking Apultumide. The talk is now of Docetaxel, the side effects of which sound horrendous and quite honestly not a road I want to go down. I can't seem to get any information if I do take it and it a) doesn't work or b) I don't cope with it, What then? I really do not want to go down the chemo route. No one can say if this would just take 6 months or so from my life and I will still die, or time scales at all.

I read recently about Abiraterone, has anyone been down this route. I would be extremely grateful for any relevant advices/experiences.

Also while on here, is there anyone from near Washington, Tyne and Wear?

Thanks

Barrie

User

Posted 01 Dec 2022 at 16:52

Hi Barrie

I am younger than yourself at 51. I had persistent PSA after my prostatectomy and was put on ADT and Docetaxel chemo with RT to follow. I had my first chemo session last Friday. My experience was that I was very tired for about 4 days but by today I was back to feeling almost normal. I worked out at the gym on Tuesday and today and walked every day even if slowly for the first few days. I can't comment on the longer term impacts as I haven't got there yet and I'm expecting the fatigue and side effects to build over the cycles.

Everyone is different and my understanding is that you can come of the chemo or they can dial it down if you are not tolerating it. But I think most people find it tolerable as the treatment is designed to be doable for an average person. I can't offer any advice on how worthwhile the treatment will be and that's really a matter to discuss with your medical team.

Best wishes.

User

Posted 02 Dec 2022 at 16:15

Thank you, yes I am on the same hormone injection but every 6 months. All the very best to you. Barrie and Jeannie

User

Posted 09 Dec 2022 at 19:01

Thank you for info re Lutetium-177

I am expecting a phone call on 13th December from my oncologist, I will certainly mention this. I am unsure at my stage how I will have time or energy to battle so if she just says 'no, can't do' where do I go from there. Time is pretty much of the essence.

What is your own situation? I have a lot of groin/leg pain and concerned that having chemo will not actually relieve me of this but just devastate me generally on top of it!!!!

Thanks Barrie

Edited by member 09 Dec 2022 at 19:13 | Reason: Not specified

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User

Posted 01 Dec 2022 at 16:52

Hi Barrie

Best wishes.

User

Posted 01 Dec 2022 at 17:01

I'm currently on chemo coming up forc3rd cycle out of 10. I can't comment on the long term but I usually go with the medics advice as I to was very sceptical about starting chemo. On the whole it has been fine apart from 2 days of pain which both occurred 2 weeks after the cycle. The pain seemed to be muscular but dyed down yesterday after trying a cold compress which I know will work if it occurs again. Apart from that I have had no issues with chemotherapy at all. There is no other treatment available for me at the moment so I guess it's prolonging things.

I was on arbiterone for several months but it never worked for me. However itscseems to work well for many and would go down that road to see if its for you.

User

Posted 01 Dec 2022 at 18:43

Abiraterone and enzalutimide are not options for you as you have already tried apalutimide which has failed.

Docetaxel is generally well tolerated - my father-in-law had it at age 79 and the biggest issue he had was his wife not letting him go to the pub on days 5 to 8 due to risk if infection. His hair fell out but it grew back fairly quickly.

If you decline the chemo, there aren't really any other treatments left so you would probably be referred to the palliative care team or local hospice for pain management and then end of life care. You could ask about one of the older treatments such as oestrogen which may delay things a bit.

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

User

Posted 02 Dec 2022 at 09:17

OMG this is terrifying.

They have said this is palliative chemo which does not make a lot of sense to us.

Can you tell me how long your dad was on this and is he still with you?

Edited by member 02 Dec 2022 at 09:18 | Reason: addition

User

Posted 02 Dec 2022 at 10:31

Thank you for reply.

I have been told Docetaxel is pallitive chemo, doesn't give me a good feeling. Have you got much support, this is one of the problems for us and my wife mainly, thought there would be local meet ups for folk but nothing at all.

Do let us know how you get on, do you know how often you are going to have to have this? We wish you well, keep in touch.

Barrie and Jeannie

User

Posted 02 Dec 2022 at 10:37

Thank you for reply, can you tell me what ADT and RT is

We wish you the very best, such a nightmare for one so young. I think I have been lucky really not having to go through years of worry.

User

Posted 02 Dec 2022 at 15:19

Thank you. ADT are the hormone injections. Mine are Decapeptyl every 3 months. RT is radio therapy. The extent of my cancer spread has only been identified in pelvic lymph nodes so they are potentially still treatable by radio therapy.

Edited by member 02 Dec 2022 at 15:20 | Reason: Not specified

User

Posted 02 Dec 2022 at 16:15

Thank you, yes I am on the same hormone injection but every 6 months. All the very best to you. Barrie and Jeannie

User

Posted 02 Dec 2022 at 20:55

Originally Posted by: Online Community Member

They have said this is palliative chemo which does not make a lot of sense to us.

Can you tell me how long your dad was on this and is he still with you?

My father-in-law is not a good comparison because, apart from the chemo, he didn't have any of the hormone treatments that your Barrie has had so he died quite quickly.

Palliative means that it won't cure the cancer - it is intended to improve quality of life and maybe extend life a bit. Prostate cancer cannot be cured with chemotherapy.

I am concerned for you that you are reluctant to access services at the hospital - Maggie's centres are wonderful places and you are going to need the support of a hospice team or palliative care team in the coming months. Have you tried phoning the PCUK nurses here at the charity - number is at the top of this web page. s well as the nurses, PCUK has a network of men who have been in similar situations and act as mentors / supporters so they may be able to put you in touch with someone nearby. PCUK also has a support group that meets at Sunderland hospital https://prostatecanceruk.org/get-support/find-local-support/sunderland-royal-hospital-prostate-cancer-support-group and one in South Shields https://wellbeinginfo.org/services/south-tyneside-prostate-cancer-support-group/

We also have a member, George, who lives in South Tyneside - I will drop him an email as I don't think he has logged in here for a while.

Edited by moderator 28 Jan 2025 at 13:41 | Reason: Not specified

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

User

Posted 03 Dec 2022 at 11:42

Thank you Lyn, we just wonder (looking at all the horrendous side effects) how this can be considered care at all. Will Barrie go through hell, catch viruses in hospital etc., etc., and possibly not even extend his life. Having Maggie's within a hospital seems so wrong. Also it is too far for us really as we don't have a car. Barrie is hard of hearing and telephoning anywhere is impossible, I could speak with people but it is all just too much to cope with and I don't feel great myself.

I believe our son contacted the South Tyneside support but it was not running because nothing else mattered in life to this government but covid. Let people die it doesn't matter. Can't quite come to terms with that alone. I don't think there is one is Sunderland either as I asked the hospital just last week and they just said Maggie's at Newcastle. Its so so wrong, so wrong. So really what help apart from on here is Prostrate Cancer Uk giving us? I hope I am wrong about this even if they are out there, why on earth would they make a meeting place in a hospital, the worst place in world .

I hope you can maybe get in touch with George, emailing would be preferable for Barrie. Thank you for taking the time to get in touch.

Jeannie

User

Posted 03 Dec 2022 at 13:31

I have given you the links to the 2 PCUK support groups - all you need to do is email the two men who run the groups. Some groups around the country meet on Zoom rather than face to face so you wouldn't need to travel.

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

User

Posted 03 Dec 2022 at 13:35

The list of side effects are just possibilities- as a number of us have said, most men find docetaxel tolerable and we have had members who continued to work full time throughout their chemo. If Barrie didn't like the side effects, he could stop the treatment at any point.

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

User

Posted 09 Dec 2022 at 18:14

I understand your concerns, don't fancy chemo myself. Now that you're judged castrate resistant, why not ask your consultant about Lutetium 177 treatment. You'll have to push if you're interested, it's expensive and new, so they won't want to refer you without a battle!

Good luck!

User

Posted 09 Dec 2022 at 19:01

Thank you for info re Lutetium-177

What is your own situation? I have a lot of groin/leg pain and concerned that having chemo will not actually relieve me of this but just devastate me generally on top of it!!!!

Thanks Barrie

Edited by member 09 Dec 2022 at 19:13 | Reason: Not specified

User

Posted 09 Dec 2022 at 19:10

Hello, we are still in turmoil re having the Docetaxel, expecting oncologist telephone call on Tuesday 13th.

Anyone who may be reading this, I am in a lot of pain groin, leg and part of back, taking normal painkillers plus the occasional codeine. The question that keeps going through my mind is will this Docetaxel actually do anything for this pain, or will it be being used just to target the other areas? I certainly don't like the idea of my whole immune system possibly being wrecked and still have the pain to cope with???

Fingers crossed please for comments, advice.

Barrie

User

Posted 09 Dec 2022 at 20:22

Originally Posted by: Online Community Member

Your oncologist can't refuse to refer you to the specialist centre but at present, it is only available on the NHS at one hospital in London and they are not currently taking new NHS patients. If you would feel able to travel to London for an appointment, worth phoning them to see when the NHS offer may be available again. If you can afford to pay, I think there are 2 or 3 private companies offering Lut177 and it costs between £10-12,000 per treatment (generally, a patient will have 3 or 4 treatments).

If you are interested in paying privately, perhaps ask whether you can have a PSMA scan on the NHS first (if available in the North East) as there is no point paying if you are not PSM responsive

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

User

Posted 09 Dec 2022 at 20:29

Originally Posted by: Online Community Member

Chemo is systemic; it attacks the cancer wherever it is in your body - they don't aim the chemo at certain bits. When you speak to the onco, this is a good question to put to her as chemo might but does not always reduce pain.

Are you under the care of a palliative care team or pain clinic? It sounds like a review of your pain meds is needed - you might need something stronger now, such as oromorph. Also worth asking the onco whether you are suitable for Radium 223 which can reduce bone pain for some men.

Have you been given advice on the signs and symptoms of spinal cord compression? If you have any tingling or numbness in the legs / hips or suddenly can't control your bladder or bowel, it is imperative that you call 999 immediately.

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

User

Posted 09 Dec 2022 at 22:30

Thank you

We will ask the oncologist about the pain situation along with chemo. Will also look up

oromorph and Radium 223

I don't have any numbness or tingling but no-one has mentioned spinal compression, but then again I never see anyone, other than oncologist and sometimes that is a phone call.

Barrie and Jeannie

User

Posted 09 Dec 2022 at 22:37

This is so sad to read, millions spent on research then when something is finally found which may help, only the rich can afford it. Can you tell me which hospital it was in London who may take consider more NHS? Never heard of PSMA, goodness do I know anything!!

Barrie

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