Worried the cancer has spread

2/2/24, met with consultant  and discussed future treatment. Agreed I would commence Abiraterone Acetate (Zyriga) daily with an additional steroid tablet. Liver, kidney and potassium levels checked every 2 weeks for 12 weeks thereafter 4 weekly.

Not a great day

Hi David.

Thanks for the update. Your medical team sound excellent and are keeping you well monitored. The combination of Abiraterone and steroids have been shown to give good results so hopefully they will put things to bed for a while. I have attached an article if you want to plough through it which explains why the steroid is given with the Abiraterone.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4257741/#:~:text=The%20administration%20of%20abiraterone%20acetate,inhibition%20%5B6%E2%80%938%5D.

You also have the option of being put on Enzalutamide next if the cancer starts showing resistance to the Abiraterone and steroid or if you find that you have too many side effects.

I hope this reassures you a little.

Thanks Alwayshope, 

Aberdeen oncology staff have been great throughout my journey. We are just back from a play date between our guide dog puppy and a friends so will read the article over a warming cup of tea. 

Hi David.

I forgot to say make sure that you have your PSA checked regularly as well. Most people get a good response but if you get bad side effects or a poor PSA response then it can sometimes help to change the steroid. Also the guidelines are that you can only switch to another second generation antiandrogen such as Enzalutamide within 12 weeks of starting on Abiraterone. 

What a wonderful thing to do with the guide dog puppies but it must be difficult to have to give them up.

DCL

Hi

I was diagnosed in Sept 2020 T3b N1 M0 aged 61

Aggressive and high range and incurable with a spread to the lymph nodes deep in the pelvis area 

Had Chemotherapy first and after a planned rest I had radiotherapy (which came with a whole lot of side effects)

I had two years of Prostap hormone injections

My PSA was 17 at it highest but went from 3.8 up to the 17 in six months

I have been told that the low figure and sharp rise was because I am a Low Secretor 

My six monthly PSA checks have been 0.01 on my last check

I have remained positive, my next PSA will be in three weeks and this time I have a reason to worry.

My weight has started to drop, and since being  diagnosed I have lost 3 stone it has never gone up, even on HT

Most of my weight loss has come recently.

I keep pushing on telling myself I am being silly.

 I have always been fatigued and had neuropathy in my feet after chemotherapy.

My oncologist apologised for my uncontrollable bowels saying this was due to my radiotherapy and this is an ongoing problem.

 I just keep trying to be Strong and push forward

I hope this all makes sense as I feel since my treatment was over It’s thought that treatment is over and “your ok now”

Sorry if I sound paranoid

love and best wishes to everyone

Spud 

“You don’t know how Strong you are,

until being Strong is your only choice”

Bob Marley 

Spud

You are not being paranoid. You have been through a range of treatments which have kept things under control but from what I understand from your profile is that you are no longer on hormone therapy? A sudden drop in weight for no apparent reason should be investigated a) to put your mind at rest and B) to get you on the right medication if the cancer has decided to rear it's head again or c) find out what is causing it. I think the first thing to do is to have a full blood test, including biochemistry and PSA which should point the experts in the direction of whether it is a cancer recurrence or something else. Having an aggressive cancer and being a low secreter (remind them of this) means that I would also push for a scan. Also make sure you have a Vitamin B12 blood tests as pelvic radiotherapy can affect this and if low it can result in anaemia and weight loss due to malabsorption of food.

Stay strong - it's a good quote.

Hello Spuduknow  Wow, I hope all is good at your next PSA.  That’s a really good post above from Alwayshope . Remember you are one of us and we are all with you here.  A positive attitude is half the battle- you are not paranoid you are just realistic but stick with us and keep fighting as you say “stay strong push forward “

Nice to hear from you again - keep us posted - we are here for you and we can get the better of this bastard!! 

Best wishes - Brian.

Spuduknow, hi and welcome to our club.  Your diagnosis is the nearest to my own that I have seen on this site and so is your treatment plan, but I am 3 years in front of you as I was diagnosed in March 2017

I know what you have been through and well done for staying positive.  I always think that the side effects are much better than the alternative!  After 6 years I still get anxious when waiting for results, it seems only natural.  
I haven’t had weight loss at anytime, quite the reverse, I have gained half a stone and really try to exercise and eat well, but fatigue is a challenge.  The fact that you have never put on weight presumably means that our metabolism’s are just different, although increasing weight loss does need to be checked but could be for many reasons.

The advice from Alwayshope seems very sensible.  Good luck on your journey and keep in touch.  Best wishes, David

Millibob 

Hi Brian 

thank you for your kind words on my post.

As you are a community champion I wondered if you know the answer to this next question.

When I was diagnosed treatment was supposed to be HT and radiotherapy and on my first meeting My oncologist said change of plan we are going to give you Chemotherapy first.

 I wondered why the sudden change

thank you again 

take care

Spud

Alwayshope 

Thank you for your kind words all I know about low secreation is the PSA is of a low number.

My PSA went from 3.8 to 12 in six months and never went higher than the 17 this is when low secreator was mentioned.

Thank you for your comments 

take care 

Spud