First Oncology Appointment

Hello ansteynomad,

Sorry to find you on here, but I'm sure that others with a lot more experience will be along shortly to offer their support & thoughts. 

Having been a site member for just over 2 years now, one thing I have gleaned from the different posts is that each individual reacts in a unique way to treatment & it's very difficult to judge how long a treatment will be effective for, but more importantly, there are lots of different options available in the medical bag that can then be tried & that's not even taking into account new treatments that are currently being trialled / developed.

There is so much information given at these meetings that it's sometimes nigh on impossible to grasp everything, but to my way of thinking, the thing to focus on at the moment (& going forward) is the fact you were told that there is no reason why he should not live a long & productive life.

Best Wishes

Brian

1. Starting with HT (Hormone Therapy), I’m very surprised that you’ve been told HT is only good for 12/18 months. I’ve been on HT for 3 and a bit years and will be on it for life. I know that’s not the same thing, as “only good for” but why would they continue something that’s worthless. I would get a second opinion on that detail. It might improve your positivity about that part of your LH’s treatments.
2. Abiraterone is a staple drug that should work very well with the HT. I had good results with that combination.
3. Keep pressing for a Diagnosis. Self Advocacy is essential and will give you heart. Just doing something to help speed up the process is going to help.

Hello ansteynomad 

Thank you for the update and I note what you say.

I agree with Brian (Buzzers) and Mr U - yes the body can become "Hormone Resistant" but it's not a given. I am on my 4th year of the same Hormone drug and it's working well for me. If one treatment stops working there are other tools in the box.

Abiraterone has many good reports and Radiotherapy is now very targeted and not the "hit and miss" of the old days.

Remember our Support Line is there for both you and DH on 0808 808 00 00 (8am to 8pm 7 days a week) should you need any extra help and support and there's always someone around for a chat (or vent) if needed.

Best wishes - Brian.

Apologies. Looking at my notes again the consultant actually said that Orgovyx is only good for 12 to 18 months.

So I spoke to the Helpline yesterday and what I got from the lady I spoke to was that if there are a lot of mets scattered round the pelvis, which there are, plus potentially one in the lung, then RT may well not be possible either. 

Hello ansteynomad 

I wonder if a "second opinion" might be needed here. (See Mr U's post above) I don't think I would be happy with a Consultant telling me that something is only good for 12-18 months.

Yes DH is incurable BUT treatable and you need some positive help not someone telling you treatment is only good for 12-18 months.

Here's a link for you to consider:

Getting-a-second-opinion.

I do hope this helps.

Best wishes - Brian.

Hi ansteynomad I have read your post a number of times and am not quite sure if I have the same understanding as the others.  I am confused (easily done).

My understanding is the your DH was initially put on Orgovyx but now has been taken off this and maybe replaced with Prostap or Zoladex (or equivalent).  If that is the case, then I think your consultant is correct, as Orgovyx is really very good but only for a limited time.  I have been on Zoladex now for over 8 years and it is still working.

If the others who have replied are correct, then go with their replies.

David, you are correct.

Stop Orgovyx, replace with 'injections' and add in Abiraterone. 

Hello ansteynomad . Your mention of your DH’s lung nodule caught my eye. I had one reported after an early scan, described as 3mm and indeterminate, with a recommendation for 3-monthly scans. They didn’t happen but a later scan associated with staging also mentioned it as ‘favoured to be benign’ by the radiologist. That was 12 months ago now. Like you I would prefer to know for definite so must ask about that next visit… Hopefully your DH can have another scan before too long to check it.