I GOT AN "A" IN AN OLOGY

Hi Simon

Im really sorry to hear your story and can understand your upset and frustration! 
There are people on here who may be able to help and advise you and I’m sure they will but I just wanted to reply as it’s now Christmas Day and for you to know someone is listening. 
Take care 

Hello Simon (simon IVA) 

A warm welcome to the Macmillan Online community Prostate Group. I did reply to your original post in "New to the Community" and am aware of your blog but would prefer to stick to advice on our own little group.

First off let me say we have many T4 "incurables" on the group who have been diagnosed years ago so there is hope!! I am so sorry however about the way you feel  about your care team - have you spoken to PALS (Patient Advisory and Liaison Service) at your hospital or had a word with the management team?

As to HT injections - this is normally done under a "shared agreement" whereby your hospital team ask your GP to administer the HT injections - is this the problem - lack of communication?

As a group - we have all had issues with our treatment - but we are a group and will fight for one another - don't give up, there are new treatments being rolled out and if you can give us some more details about your issues we will se what we can do.

To help us help you, can you please add some details of your journey to your profile - to do this click on your icon on your home page, then profile and then edit - don't forget to click on save when you have written something. (you can read a journey by clicking on the poster's name or avatar).

We also have another group you may wish to join for support and the link is here:

Living with incurable cancer forum - patients only 

I do hope the above helps and you find our little group to be a safe and supportive place for you. It is a safe space to vent your issues.

Best wishes - Brian.

Hi simon IVA , I am slightly confused (but that’s not difficult these days).  Are you wanting the Zometa to be prescribed by the chemo team? If so, in my experience that won’t happen.  I assume you are on some sort of hormone therapy (HT) possibly 4 or 12 weekly by injection?  This is usually administered by your surgery and hospitals are not geared up for this.  Zometa is nothing to do with chemo, it is a drug to help calcium be absorbed I think (although I have no knowledge of it myself) and again I think it will be administered by your surgery on a 4 or 12 weekly infusion.  If you have any questions with who administers what, I have found my Cancer Nurse Specialist really helpful in explaining and organising.  Please come back if you have any questions.

Obviously entirely your choice if you go on or give up, but having seen a couple of friends give up, I personally wouldn’t go that route as they didn’t have good deaths.  I am on a treatable pathway (stage 4) and this is my 8th Christmas, life is good.  David

hi David ,

sorry only explained a bit about my cancer the Zometa is because I have , osteoarthritis ,osteoporosis , degenerative  spinal disease ankylosing spondylitis amongst other bone and joint issue that why I should have been on it . Intravenous with the Docetaxel. 

Hi

I agree with the others - I had all my Hormone injections at my GP surgery. Although when I turned up for my 1st they expected the hospital to supply the first one.

Regards

Stuart

Hello Simon simon IVA and welcome. My husband is also T4 but with distant visceral and node mets as well. He was diagnosed in July 2020 and is still going strong thanks to the medication. The important medication for you to have are the hormone injections or their equivalent such as Orgovyx which is a tablet version which has recently been approved by NICE and is available in some areas. The Darolutamide works in a different way and it is usually considered better to combine the two different methodologies (another Ology). The biphosphonates are good for a preventative medicine but not as essential as the hormone therapy. The NICE guidelines now state that biphosphonates should not be offered to prostate cancer men on hormone therapy but with your history of osteoporosis I would push for them on that front.

I am sorry that you are having such a difficult time getting the care you need and deserve and at times it can get overwhelming but please don't give up. Brian Millibob has already made some suggestions but you also have the option of your local MP if you have already worked through complaints through the PALS/PILS system. I also had a problem in the UK with our GP and wrote a strong, concise letter outlining my complaint which, even though I had lost trust in the surgery, it did result in a better service and understanding.

My husband has been through different therapies which, whilst not pleasant at times, they have got things under control and are allowing us to have a good quality of life for longer than we ever expected and we are assured that more is available as and when necessary. If you stick with us we can hopefully guide you with what is available but I would urge you to keep advocating for your own health and don't give up. A T4 diagnosis is still very treatable for a long time in most cases.