Mum's partner diagnosed with advanced prostate cancer

hey 

time to think outside the box where treatment is concerned !

look at the joe tippens protocol and read his story . MY CANCERSTORYROCKS 

i've started the protocol because all i'm getting is palliative care .

gd luck 

So sorry to hear about your Mum's partner.  This is going to be a hard time for all of you.  I know how ard it can be to care for someone with advanced Parkinson's disease as my Mum also had Parkinson's for 30 years.  It was a great strain on all the family dealing with the Parkinson's especially my Dad who for the best part of 15 years cared for Mum until such time as my sister and I could manage to help when children had left home and I retired early as did my wife to help care for Mum.  This was fine when Dad was in his sixties and seventies and was himself fit and healthy but once into his late seventies when he too had problems - two hip replacements and other problems it was hard for them both.

Can't really help you with any ideas on treatment as you will have to wait to hear from the oncologist and probably the multi disciplinary team caring for your Mum's partner.  Radiotherapy can be given to some of the areas where the cancer has metastasised in some cases to ease pain.  Is he still on Hormone Therapy?  There are also other drugs that can be given and it may be that chemotherapy may be given but this will have to be discussed with his oncologist. 

It may be worthwhile as anubis says "thinking outside the box" to try other treatments.  I go to my local Maggies Cancer Centre where one of the gentlemen I meet on our Wednesday Walnut Club Meeting for prostate cancer sufferers their carer's, partners and wives swears by taking CBD Oil.  He has Incurable Stage 4 Cancer and has refused chemo but has taken CBD Oil for the last 4/5 years it is now widely available here from places such as Holland and Barrett and some pharmacies he has used the oil from H&B at £19.99 a bottle and says it is just as good.  So, although that is an unscientific experiment it seems to work for him.  If he does try something like this then do discuss with the oncologist just to ensure that it does not affect any other medication he may be taking.

As for being your Mum's carer he may find that he now needs help so please get in touch with social services to see what help is available in your area.  You also should enquire about benefits your Mum and her partner can get including Carer's allowance and possibly attendance allowance.  You could ask at your local Macmillan Centre or Maggies Centre or any other cancer self help group in your area or even the Parkinson's Society as they will be able to advise you and help you fill in forms.

Take care of yourself and keep in touch so that we know how you are getting on.

Des

Allt he very best

Thank you for your reply, and sorry for not replying sooner. It has been a very difficult few days managing my mum as her partner was doing a lot of things for her. Her medication got mixed up and caused her to feel very wobbly and confused. Hopefully this is all sorted now. I even learned how to change her ostomy bag, which I'll do until I can arrange some additional support for her. I'm going to contat social services to see what support is available, and thanks for mentioning the additional benefits she may be entitled to as I wasn't aware of these. She seems to manage doing a lot of day to day things, but is very slow and getting quite forgetful.

My mum's partner has been in hospital since Monday with two main issues. Firstly, he appears to have compression on the spine from one of the tumours which is why he is having trouble walking. They have ruled out surgery due to the proximity to the spinal cord, and have given his some radiotherapy. Secondly, he is very out of breath due to low platelets in his blood and he has had a blood transfusion this morning.

He is being given hormone tablets, and I think he will be getting radiotherapy on some of the other metastases but I haven't heard anything about future treatment plans. I'm not sure how quickly these things normally get discussed, but it is concerning that there doesn't seem to be any discussions on this as of yet. He's planning on getting transferred to a private hospital but apparently it is difficult to do once you are already in hospital. One of his ward fellows is very demanding which makes it difficult for him to get any decent sleep.

I'll talk to him about alternative medications. Provided they don't conflict with anything he is taking it doesn't seem to be any harm in trying.

i'm on hormone treatment since 7th jan , 3 monthly zoladex injections 

i had 5 lots of docetaxel in that time i had further spread even though my psa was 0.3 !

the scan revealed i had spots on my rib/spine/pelvis and sternum .

the onc was going to give me radiotheraphy but after that scan he said it wasn't worth it ! 

i was put on abiraterone , it was then i started taking cannabis oil.

my last scan in september revealed all the spots on my bones had gone !!

now into my 5th week of joe tippens protocol and feel great .

Hi Anubis,

It does sound like things are going well for you and long may that continue.

He's back today from a 2 week stay in hospital. He's being given some hormone tablets, I can't remember the name of them, but they are for castration resistant prostate cancer.

He's had a couple of blood transfusions as his platelets were low, which left him out of breath. This does seem to be improving though.

The main issue he had was spinal cord compression from a tumour, which has made it difficult for him to walk. He has received a powerful dose of radiotherapy to the spine to shrink this and he seems to be getting some of his strength back in his legs.

Can I asl how long it was from diagnosis of the advanced stage to getting docetaxel? We don't seem to know about any future plans for treatment other than these tablets and wasn't sure whether this was normal at this stage. I had assumed they would be discussing chemo shortly after this diagnosis.

I've spoken to him about the CBD oil and I think he will try it. I've heard from another person on here that has had good long term results after using it.

things happened very quickly for me got my diagnosis on the 7/1/19 within a month i'd seen my onc and started chemo .

in hindsight i wouldn't have had the chemo because it did nothing to help me !

in fact i had further spread but i am gleason 9 (5+4) so very aggressive , after this i was put on abiraterone .

its basically a keep u alive pill i think ? . thats when i decided to take the cannabis oil .

here to help if you need it 

Things were quick for me also.   I had follow up from surgery bloods were raised so repeat psa fortnight later then psa petscan, followed by chemo, I’ve currently received 3 out of 6 cycles next one Friday docetoxel.  I have regular psa tests which has confirmed it’s dropped last time 0.1 so fingers crossed.

what are side effects of CBD oil, how do you know your safe to drive..   there’s also been reports of dubious quality oil. 

what are people’s experience of CBD

youngman 

If i take it , its at bedtime sso i sleep it off . i have other oil which i take 3/4 times a day which is the one that has helped me .

most cbd oil on the high st is mass produced  rubbish you just have to research a lot before buying .

i was lucky a friend put me onto someone local who is a healer and makes her own. 

the psychotic episodes seems to be the medical professions standard answer when cbd/cannabis oil is mentioned .

they said i'm incurable , i had the chemo and despite a psa of 0.1 it had spread , so it was time in my mind to look for alternative ways to heal myself and thats what i'm gonna do 

He is Gleason 9 also, not sure which way round the figures are.

It's been nearly 3 weeks since the diagnosis and no discussion about chemo. He is on enzalutamide now. He was in hospital for 2 weeks and was discharged on Monday. He has had spinal cord compression which they gave him a massive dose of radiotherapy for. His legs are very weak still so he's finding it difficult to walk about. He's also had problems with his blood, something to do with low platelets, and has had trouble breathing but this is improving a bit now.

He has an appointment booked with the oncologist in just under 2 weeks so I will see if chemo is discussed with him then.

I've had a chat with him about the CBD oil, but he doesn't seem very keen at the moment. I think he wants to see what the next few weeks bring before making any decisions.