Survived so far.

Hi Jaybeey. 

A very very warm welcome to you too our big family of prostate cancer fighters. 

Wow what numbers when I was told mine was 1000+ I struggled to find anyone close to these numbers not as though I wanted to.

Sorry to hear that the Cancer has become active again, if you can let me know what the 3 pill regimes are I can try and point you in the right direction as we have got some info and also members who may be able to offer you some help and support/advice??

I do hope that more of the team/members will be able to offer you much needed support and if there's anything that I can help you with please please let me know???

Prostate Worrier.

Hi Jaybeey,

Warm welcome to the community. Wow PSA 2150 it is very high. My husband diagnosed 5 months ago and he is on Zoladex injection and Enzulatemide which is 2nd generation HT. Has side effects like hot flushes and fatigue but it is totally tolerable and his quality of life wonderful. Like your husband the PC spread to the bones and nodes. You can read his profile when you click on his name.

We will never chose 'doing nothing' and I trust Robin oncologist will suggest few routes how to carry on with treatment.  I am sure members of the community here which by the way all brilliant in sharing their knowledge and experiences will join the conversation soon.

I wish you and Robin all the best and please feel free to ask any question.

Lots of love

Dafna from Brighton

That is interesting. Yes, the PSA was almost accidentally discovered and was so serious we had to go direct from home to GP to hospital, The Churchill in Oxford, wonderful. Caused quite a stir. Brilliant treatment there and at Trauma Centre in John Radcliffe and recovery at NOC. We are lucky to live near Oxford now, although we are both from Sussex and Rob was born in  Brighton. He had Degarelix from day 1 and every month since. PSA went up a little so also on Biculatamide. Now PSA creeping up more we have new consultant who wants to try either Enzalutamide, Abiraterone or Olaparib. I was very pleased to see that your husband tolerates Enzalutamide quite well. The side effects of all three (dr gave us print outs from the Macmillan site as 'homework') are daunting but then, the blurb always is pretty shocking and the reality often quite benign.

Really good to have your contact. All the best to you both.

Jackie from Banbury

Very good to hear from you. No, the figures are not a competition, but we knew it was dramatic when were not allowed home and had to drive direct to a wonderful oncology triage department, which then attracted clusters of young students and doctors. It was fantastic treatment, kind, considerate and effective. We are lucky to live in the Oxford area with several first class hospitals. He started at The Churchill, JR for spinal surgery, 2 ops, 1 8 hours, then to NOC for recovery.

Rob had more or less lost the use of his legs, diagnosed as a slipped disc but bloods taken. The phlebotomy people at local hospital rang practice immediately, they rang us and our GP was determined we should be admitted as an emergency without going through the usual procedures. She wouldn't let us come home, just straight there. Then it snowed so I had a fraught drive back that night. Rob is calm and philosophical so has coped very well with monthly Degarelix and Biculatamide more recently. He will be pleased to have a 3 monthly injection. Our problem really is that up to now we have had fantastic consultants, but have a new one and it is always hard adjusting to such different temperaments and manners.

The 3 pill regimes are Enzalutamide (favoured by us), Olaparib or Abiraterone. Consultant gave us printouts of the Macmillan info. 

I won't hesitate to ask for more info.

Very best wishes to you in your journey

Jackie

Hi Jaybee (aka Jackie)

all I can say is that you have EXACTLY the right attitude (and I suspect Robin has the same).  Of all the weapons in your armoury, that is the most important one.

AW

Hi Jaybee.

Another wife here welcoming you. My husband has had Prostap injections every 3 months, plus Bicalutamide for 18 months. When his mets showed some activity he was then taken off Bicalutamide and put onto Enzalutamide which acts in a similar way to Bicalutamide but acts more strongly to block the cancer. Side effects from all the hormone therapies, including Bicalutamide, are similar so if Robin tolerated it then there is no reason why he should not be able to tolerate the second and third generation of drugs. My husband is 80 now and about to start another treatment regime and as our oncologist says, he has plenty of tools in the toolbox.

Please come back with any questions as there are plenty of people who are in a similar situation and will willingly share their experiences.

Hi Jackie.

Many thanks for your reply, that's great to hear that you have a very supportive GP which makes a real difference believe me.

Wow you are from my part of the country where I lived for 20yrs +. I still have family in and around Oxford. JR is one of the top hospitals in the country.

Are you ok with the info that you received from the hospital from our site or is there anything that I can do to help with these??

Sorry about the number's as we did find it difficult to process in the beginning due to the negativity off my consultant who has now mellowed considerably.

We did all fear the worst & hoped for the best & yes Xmas has come and gone and things are looking good.

I wish you both the best & please come back to me if there's anything that I can help/support you with???

Prostate Worrier.

Thanks for this. Our immediate reaction is the profound difference in attitude of our new consultant. I am hopeful we will reconcile ourselves and he may mellow.

I shall definitely come back to you all for support and advice.

All the best

Jackie

Hi Jackie.

No probs it's my pleasure, yes our first appointment with my consultant upon diagnosis was very strange as he told my wife to be quiet and let me answer his questions!!

But as I have previously had a Stroke/BI my Memory is completely shattered so I was unable to answer his remaining questions.

But as the appointments went by he started to mellow and now he is completely fine.

Yes please please come back to us as we are all here for you both.

Prostate Worrier.

Hi Jackie,

Great to know that your husband had a PSA of 2150 at diagnosis and he is still going strong 6 years later. Very positive. My partner has been taking Abiraterone with Prednisolone (steroid) for the last year.  He has a monthly blood test to keep an eye on liver function etc. These medications run along side a Zoladex three monthly HT implant. He seems to tolerate this combination quite well, the only obvious side effects are fatigue and hot flushes. Abiraterone is supposedly a very good drug for extending life, it does have a long list of side effects like all drugs, but it seems to work well at the moment. A down side is that he must take the Abiraterone on an empty stomach, so he sets the alarm at 6am. I think this is more of a problem for me than him though!

I hope you find one of the three drugs agreeable to take and carry on with lots more bonus years keeping PC in check.

L