Chemo or not!!

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.

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

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

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. 

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!

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

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.  

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

Thanks for reply, can I ask how old you are John?  I had about 7 months of Apulutmide before it apparently stopped doing its job.  It is strange how they give some people 3 monthly injections and others like myself 6 monthly, what is bilateral orchidectomy?

Don't understand what 'castrate resistant' means.  Or Gallium 68 PSMA PET

Re the new treatment, someone has pointed out that it can be given privately.  Typical, millions spent on research then only the rich can get the medication.

I am experiencing a lot of pain groin, hip, leg, certainly don't want to go down major pain killer route.  I wish my consultant could at least say to me  'you would be better doing this' or better not!!!  

Thanks again for response

Barrie

1. It depends on which hormone treatment it is one - some are available as 1 month or 3 month doses; others are available as 1, 3 or 6 month doses. You are on a drug that is only available as a 1 month or 3 month dose. 

2. Surgical removal of the testicles. 

3. Castrate resistant (or hormone independent) means that the cancer has learned how to feed without testosterone. You are castrate resistant; the hormone treatment stops testosterone from being made so the cancer starves but eventually, the cancer finds other ways to survive. That is the point at which apalutimide, enzalutimide, abiraterone and / or chemo are added. 

4. A very sensitive type of scan which injects a chemical into your body - the chemical attaches itself to the cancer cells wherever they are. It works with most types of prostate cancer but not all. If your cancer does not bind to the chemical during a scan, Lutetium treatment won't work. 

5. It isn't that simple. New treatments have to be carefully tested for a long time on a lot of patients willing to take a risk, just to prove that it is safe and that it works. Then NICE has to decide whether it is cost effective for the nation (all of us) to pay for. A treatment like enzalutimide or apalutimide costs the NHS £2700  per month per patient, abiraterone costs £2300 and lutetium 177 costs around £12,000 for the first treatment and £10,000 for the other 2 or 3 needed. On average, enza, apa & abi extend a person's life by 5 months, 14 months and 4 months respectively while Lut177 extends life by about another 4 months so NICE has to decide whether it is worth paying at least £32,000 to keep someone alive for an extra 4 months. If someone can self-fund, it is up to them to decide whether that is money well-spent but in the current financial crisis, I can see why they think our taxes can be better spent.  

Thank you for in depth reply.

Terrifying costs, we always ask ourselves how/why do these things cost as they do, makes you feel like they are having to travel to another planet to find necessary ingredients?  Also worried they are taking me off Apulutmide for cost reasons!!

Discovered something else this morning while 'trying' to find hope...

NHS fast tracks life-extending prostate cancer drug to patients

 28 November 2022

Cancer

Around 9,000 men with one of the most advanced forms of prostate cancer will be eligible for a new life-extending treatment thanks to a fast tracked deal by the NHS.

The NHS in England will become the first in Europe to roll out Darolutamide to patients whose prostate cancer has spread to other parts of the body.

Studies show the chances of living longer are increased by one third in men who were previously left untreated.

The drug works by blocking androgen receptors in cancer cells, which in turn blocks the effect of testosterone that allows the cancer cells to survive and multiply.

Darolutamide, also known by its brand name, Nubeqa®, is already available on the NHS for some patients who have localised prostate cancer but this offer is now being expanded to cover those whose cancer has spread after NHS England struck another early access agreement.

Rather concerned here, Barrie's Apalutamide was stopped in October due to it not working.  No meds following this until given 3 months of Dexamethasone.  This will take him to mid March, however a telephone call from consultant is not planned until end of April.  Reading about Dexamethasone, it does state 'do not just stop taking'. 

Naturally, we feel in the dark. Wrote to consultant, no reply, now sent letter direct to her secretary, so far no reply.  Should someone not have been touching base, see if things are better, worse  As per, worrying.  We also wonder why just 3 months????

Did Barrie have a biopsy in the early days when he was being diagnosed? If so, there will be a Gleason score somewhere in his medical records. Sometimes, though, a man is diagnosed with advanced prostate cancer without ever having a biopsy so he never gets a Gleason score.