4weeks after husband’s diagnosis

Hi Paul to be honest it was very disappointing we thought we had a face to face with oncologist however it was a phone call which wasn’t the best he talked about the hormone therapy Keith is already on and the possibility of starting him on a another tablet however it comes with bad side effects and basically said it’s not needed but is available if he wants it I asked about life expectancy which was difficult however he was honest and said it is bad but whilst hormone therapy is working between 2 and 5 years however less if it stops working so we have decided to just live life to the full and take each day as it comes x

So sorry to hear that maria, I hope you are both ok. What was the other drug if you don't mind me asking, I am on enzulatimide so wondering if it was that or maybe abieritone. That's all we can do is live each day as they come, hope, pray and be positive. It's all individual and these statistics are from years ago when these new drugs were not around so I hope we'll set new time scales and live for many years. Good luck to you both

Some encouragement for both of you… I find Dr Sholtz videos on YouTube so informative and comforting 

https://youtu.be/gtmWNp83NLw

Hi Paul sorry for last reply chemo wasn’t and option only more hormone tablets worst case scenario 1year could be 3 depends on how long hormones work we didn’t actually see oncologist he doesn’t do to face and didn’t really fill us with hope or even endorsed the tablet however he is going to give it a go as side effects can be bad and doc agreed quality over quantity at times like this  but not giving up 

Hi Maria,

im in a very similar position with my husband who is stage 4 advanced with bone and lung mets. We found out in October and all he had was lower back pain. You are a lot younger and so I can only imagine the pain you must be feeling. Especially with the other cancers in your family. 
im here if you need to talk. My husbands prognosis is similar. He is benefiting from Zytiga and PSA is now 0.2 from 44.4 at diagnosis. This has given us a lot of hope as some men on here are living 7 years plus on hormone treatment. I know it’s not a lifetime but who knows what other treatments will be here in the next few years. The treatments for stage 4 are phenomenal and getting better all the time.

Sending you much love ️ 

Hi

Ive been reading how things are going for your husband, personally I hate the phone call touch, I know their under staffed, but this is his life your talking about.

The tablets that were offered with the bad side effects, do you know the name of them ? We’ve all gone through and still are fighting every day, if it’s to keep this disease at bay. 
Taking the option of just carrying on without further treatment except hormone, is a difficult choice, you yourself must have gone through an assortment of treatments with your condition at the time, so you know what it’s like.

Was Aberaterone or enzalutamide offered ? Just asking as I’am on the latter, plus there are a few other medications out there, whatever happens I hope you all enjoy the time you have together hopefully it will be a good few years, take care.

Stay safe

Joe 

HibThankyou you for you email and supportive words initially because of Keith’s young age and good fit health the treatments where endless however they did say from the onset it had metastasised to his bones and possibly other places we later found out after tests it had also spread to lymph nodes and other tissues we where told them he would see an oncologist in about 3 to 4 weeks this was alarming for me because mine and my sons chemo started within days they said chemo could be an option depending on biopsy results and because they weren’t good chemo wasn’t an option the oncologist said worst case senario could be a year I know from research that the hormone injection may only be effective for 6 months or a year possibly more and they have taken the pain and improved his symptoms if I am honest I feel like the new tablet he has just started in a sympathy drug because the doctor said he would leave it up to Keith to decide and didn’t enforce how it would help or prolong his life I can see changes in Keith daily it’s heartbreaking beyond words at 47 but we are taking each day as it comes making memories good and bad days 

sending love and best wishes️

Maria Susan, I’m so sorry you find yourself in this devastating position and you are both so young. I feel your pain and respect that being so young is even worse with any advanced diagnosis.  However, remember that these are groundbreaking treatments that are improving so fast and that many men are living with advanced mets for many years. This is what I hold on to when things feel hopeless because there definitely is hope!look at some of the guys in this group! 

My husband decided to take the Arbiterone (Zytiga) and his PSA is now 0.1 in just a couple of months. There are side effects but he feels they are worth it. His tumours are in 7 bones both lungs and lymph nodes.  Yes he gets tired and sore but he is still working full time and this period of low PSA has given us our life back even if we are putting the incurable word to the back of our minds. from what I can gather you guys are fighters if not warriors and you can carry on with hope. I’m not saying it’s easy but it’s very possible to have much longer than a year. It will take time to process this but I would put money on it that you guys have much more than a year!!! 
my husbands cancer is Ductal adenocarcinoma which is graded as more aggressive. Can I ask what the pathology report is on your husbands biopsies? 

kindest regards and much love to all of you… if you ever need to private message me at any time at all I am just a click away. I mean that very sincerely,

Louli xxx

Hi Maria Susan, so sorry to hear about Keith.My husband was diagnosed with advanced prostate cancer April 2018 at the age of 63, he had no symptoms just the need to urinate more often at night, he is very fit and active. The cancer had spread to ribs,hips and spine, incurable.He had chemo Docetaxol and hormone injections.3 weeks ago we were told the cancer had spread further affecting a lot of his spine, the consultant was trying to show us what his normal vertebrae should like but was telling us it had progressed so much she was getting info from a spinal surgeon about spinal surgery. We are waiting for results of his recent CT scan.He started Abiraterone 3 weeks ago and we were informed today his PSA has dropped from 3.1 to .7 He has been feeling ok since starting Abiraterone, he also takes a steroid tablet every day , this reduces the side effects. I have had 2 operations for laryngeal cancer and I have to have the camera down every 12 weeks. I understand what you are going through. I have been struggling lately and the tears have been flowing. I contacted Macmillan who have been amazing,as I feel I need counselling and support. Hang on in there, it is hard trying to be positive all of the time but I keep trying and I am so grateful for all the help and support, being on this site helps as we are all in this together. Stay strong and take care.

Chris