3 months down the line after first hormone injection

Hi Big Col , sorry to hear your latest results but a plan is in hand.  Good luck with the CT scan.

Big Col said:

Can I have a holiday on ht

I wasn’t quite sure if you meant can you have a holiday or a break from HT.  Answers - yes definitely and ask your consultant respectively.  Please come back if you have any more questions.

I am not sure how B12 deficiency is diagnosed but sure others will answer.  David

Hello Big Col . Sorry to hear about your little friends but sounds like you have a good team behind you.

Doublet therapy in your situation I think means the addition of a second generation antiandrogen in addition to the 1/3/6 monthly ADT that you are having. The Bicalutamide (1st generation antiandrogen) will be stopped and replaced with either Abiraterone, Apalutamide, Enzalutamide or Darolutamide. All of these treatments can have additional side effects so you will be monitored closely but one thing to take into account is that if you have Abiraterone which is usually given with a steroid then it may be possible to have one of the other ARPI's later on if the cancer overcomes the Abiraterone but it is not usual to follow the other ARPI'S with another hormone therapy at the moment. Which one you are given can be determined by your health, other co morbidities and what is approved by NICE in your area.

Doublet therapy could also mean the ADT alongside chemotherapy Docetaxel if there are multiple metastases.

Intermittent hormone therapy is a possibility for men whose PSA is negligible for several months.

Osteoporosis is not a common side effect but it is a possibility for men who are on hormone therapy long term which is why some doctors recommend calcium and vitamin D supplements.

My husband has fairly regular vitamin B12 checks when he has his routine blood tests. I have attached a link if you want to know more.

https://www.nhs.uk/conditions/vitamin-b12-or-folate-deficiency-anaemia/diagnosis/

My husband was on Enzalutamide for 18 months and yes he did have more side effects compared to when he was on Bicalutamide - the main ones being brain fog and increased fatigue along with mood swings. 

Hi were you already having radiotherapy?

The results are good it means my psa isn't rising and should go down  Thanks David I'll ask at my next meeting  

Thanks it's only if I become castrate resistant I .e doublet therapy it's the chemo bit I am trying to avoid. As ever a mine of information 

I finished in2019 my psa started to rise last Year a pet scan showed lymph node only, small  nodules. 

Hi BC

many, many many  more moths down the line  (see bio/posts )

not in bones but was partying else where.

HT can be tiring you sort of get used to it. you are in the early stages  body still adapting  

I'm castrate resistant    (bio)

There is more than one type of treatment  depends on what they think is best for you.

but basically your on the hormone of choice for life (  heard recently there is a possibility of a break) and then the attack the  rising PSA numbers with something else, my case more tablets . Then you are back to getting used to it.

my  bone density is less than when I started, I take a calcium tablet, daily  still a lot less than my wife takes  who has the big O, we are in our fifties.

 I live an active life, people are surprised when they find out what I have.

Try and stay positive( I have been at this for quite a while now,) really helps.

BOL

TG

Thanks  am kinda of getting used to it and try and fight the fatigue  don't always work and I have learnt to be positive  2 years ago when my psa was steadily rising again I had a miserable  Christmas and realised I had just wasted time...so everyone stay positive. 

Ask your GP for a B12 test,  I'm three weeks into my third of four, 6 monthly hormone injection, and have been really affected by what it has done to me,weight loss, muscle loss despite doing or trying to everything everyone tells me to do to avoid some of the side affects, mentally it has been scaring me, I am stumbling fall asleep in a second, anywhere, don't sleep well at night, the lost goes on.

My younger sister who suffers from Vitamin B12 told me to go to the GP and get another test done, I had one tree years ago. And subsequently had 6 daily b12 injections and told that's all I needed.

So a week ago I got the results back from my second B12 blood letting episode, my GP could not understand why I hadn't been put on 3 monthly injections for the rest of my life after the first test.

So tomorrow I start on another 6 B12 injections the one every three months of my life.

I looked up the affects of a lack of B12, it runs in my family, tingling hands, stumbling and erratic, for me walking, trouble concentrating, tiredness, trouble remembering names which is really worrying.

I have vitiligo which can be caused by a lack of B12, my mother had it as well as a B12 defiency.

I understand that the hormone treatment will affect me but not as bad as I have had over the last six months.

My GP has been a wonderfully patient to listen to all my worries and problems.

As for a holiday go for it.

Hello Big Col,

Concerning the holiday issue, I'm on triplet therapy which is chemo (completed last autumn) and now on indefinite HT and darolutamide. There's no problem going on holiday for me whilst on this, I was able to get worldwide annual travel insurance in January this year and am using it to the max at the moment.

Hope you get sorted on this,

Derek.