Family- new diagnosis

hi sorry that your having to post this news. there will be several people along shorty with advice. but if you click on my profile (the little chair thingy) that may give you some idea of whats possibly ahead . regards dale

Hello JCat 

A warm welcome to the online Community - although I am so sorry to find you joining us.

Any treatment for Prostate Cancer comes with side effects - some people get away lightly and get very few, some of us get all of them, so I would urge dad to keep as fit as possible and to ensure he's on a decent diet.

With a Gleason 10 score and spread to his pelvis it's very likely that his Oncologist will start him off on "Triplet therapy" (indeed golfboy has just posted ahead of me and details of this treatment are in his profile ).

As a group we are all here for you and your dad - please feel free to ask any questions - nothing is too trivial.

Best wishes - Brian.

Hi JCat , new drugs and treatments are coming along all the time.  When I started 9 years ago, triplet therapy wasn’t around so I went straight to chemo and RT.  Now those treatments are in reserve for years down the line.  The key to coping with this illness seems to be quality of life.  Some of the treatments and drugs aren't good, but overall life is good.  Please come back if you have any questions.

Hello JCat,

I'm very sorry to hear about your dad's diagnosis. Do try not to worry too much (difficult I know!) as there are many excellent and successful treatments for this.

Others have mentioned to prospect of triplet therapy so I thought I'd send you the link (below) to my blog documenting my experience of having this treatment and the follow up.

Perhaps not something to waste your time just yet as you'll have plenty to think about, but it's there to read if he does embark on this treatment.

All the best,

Derek.

Hello Dale,

Thankyou for your comment, seeing your journey on your profile has made things clearer as to what we can expect. Wishing you good luck for your further hormone therapy 

Thankyou David, I’m glad to hear that overall life is good, that is very reassuring to hear especially 9 years into your diagnosis. Do you have any tips on how you’ve maintained your quality of your life? 

Hello Derek,

I've had a read through your blog, especially the early days in your treatment, and have found it very helpful reading your experience, thank you for sharing this, as triplet therapy is what has been mentioned to us at the diagnosis meeting yesterday.  Reading through everyone's comments has really made me feel much more positive about the outcomes!

Hi JCat All I can add is that I am now approaching my 3rd year of Hormone treatment only .That is Apalutamide daily and Prostap at 3 month intervals only.

Radiology or Chemotherapy has only been discussed as a possibility somewhere down the line if HT stops doing a job.

Like your dad my only symptom was the urination issue,That remains the case and that is not an issue as I have an indwelling catheter.Dont ask me why but I have,

The only discomfort is the hot flushes,but in my case these are only a fleeting issue.

So hopefully your dad can live as he feels and that the mental initial shock to him and the family passes quickly.

As I said to someone else I no longer have a daily obsession with my condition or feel the need to refer to Doctor Google which was the case for a while.

All the best to you and now we are off out to have a tea and scone in the sun.

Hello Rivelin,

That is really positive to hear, my dad has been prescribed his first Prostap. 
That is great to hear you have been managing with just the HT for almost 3 years, I will discuss this further with his oncologist at his treatment planning meeting to see if we will trial just HT at first or the triplet therapy route. 
It is really positive to hear that you haven’t got any further symptoms apart from the hot flushes- this seems like a very common symptom for us to expect and I’m glad to hear that you’re no longer googling daily- hopefully we will also get to this stage at some point! 

I hope you enjoy the sun and your scone- sounds like a lovely day! Take care and Thankyou for your support 

Hello JCat 

JCat said:

I will discuss this further with his oncologist at his treatment planning meeting to see if we will trial just HT at first or the triplet therapy route. 

To be effective "Triplet Therapy" needs to commence no later than 12 weeks from diagnosis.

 Kind regards - Brian.