Hi again.  Just curious why the suggestion was not to have Chemotherapy ?  And how did it come about that your husband had a PSA test?  Hope the biopsy has gone well. With a PSA of 768 I’d be interested to know the Gleason score. It took me a couple of weeks before the expected ‘blood in my urine’ stopped - but there was very little colouring.  

As an aside, on one American cancer site there was a person interviewed who had a PSA of 1150 some 25 years ago - he was now 75. So there is hope for an above average outcome. 

Hi the reason he had a blood test is because he was going to toilet 3 times thro night which he has never done in 34 years so he went to doctors they did bloods then a examination of his prostate which was hard and bigger so so far when we was told he had advanced prostate cancer he had injections the same day which is degaralix he has to have them every month the last week had CT scan and bone scan then today biopsy that's all we know for now no chemo was offered as yet 

This is worth reading

https://prostatecanceruk.org/prostate-information-and-support/get-support/our-specialist-nurses/life-on-adt-classes

Thank you for your messages it helps alot its the not knowing now for us it's the worst thing how are you doing now

You likely know that a normal PSA is quite a low number.  The following is what I understand. If PC that starts in the prostate is contained within the prostate the science seems to be to use ADT to stop testosterone production and monitor a patient over time. Before actual diagnosis and if PC has already escaped from the prostate ( as in my case ) each area where is has established starts to create its own testosterone and hence you get PSA at a higher number. If ADT works you are castrate sensitive and if not you are castrate resistant.

While ADT treatment does work to reduce the PSA level, as I have experienced and therefore am castrate sensitive, the cancer cells outside of the prostate are likely to still create testosterone to feed on. This is why I have chosen to have chemotherapy along with the latest ADT drug called Darolutamide. I read that the chemotherapy is supposed to find and attack all the PC ️cells in the body, but will not necessarily get 100% - some minute bits will be missed. A person can just chose one of the four newer drugs, of which Darolutamide is one, but recent science research apparently shows much better results with Darolutamide and Docetaxel ( chemo ). I feel that I want to kill off as many cancer cells in my skeleton as possible and hope that I can tolerate the chemotherapy ok - six sessions three weeks apart - but I haven’t started yet - waiting to hear. 

Again, my understanding is that over time a person will become castrate resistant and at this stage one of the other three newer drugs would be used along with possibly more chemotherapy, but using a different chemotherapy therapy treatment ( Jevtana is one of the names for it ).  Keep in touch. 

i will keep in touch hope all goes well for you we know nothng as yet till january its the not knowing thats the worst thing ,do you have any pain or are you unwell at all,my husband has a pain in his side that has now gone but gone round to is back  but he thinks he has pulled a muscle 4 weeks and its taking time to heel 

Your husband’s suggested treatment will all come down to the Gleason score and results from the CT and Bone scans. My PC seems to be throughout the bone skeleton and hence the treatment I’m on - not curable but hopefully manageable. I had a call today to start chemotherapy on January 8th. I have no real pain and am not unwell. I think that being on the ADT has disturbed the cancer cells as I have been getting the odd twinge in my shoulders, but I may have had them before and thought nothing more than ‘ that’s from lifting something’. It’s not worth worrying too much as ‘it is what it is’ and there are life extending treatments, with cancer drug trials taking place all over the world. Hope that you can enjoy Christmas even though it’s always in the background of thought. 

Thank you hope you have some support IE wife or family you try have a good Christmas take care speak soon

Hi there how are you doing with your chemo how was your christmas ok i hope ,my husband has had his results and the cancer has spread to his bones but just from his neck to his groin not anywere eles he has had 1 testosterone injection and from his PSA been 776 it has dropped down to 81 thats just after 1 injection we are amazed how much it has dropped from just the 1 injection we go on the 6th of feb to talk about treatment for the bone cancer..

Hi there! I thought I would add an update about my father. Unfortunately the bone scan and ct results were delayed a bit due to Christmas but we got the results yesterday. He has already began the hormone therapy, started on tablets and now on injections. His cancer has spread to his lymph nodes and bones, specifically his spine, hips, legs and ribs. We have not been given any idea of treatment plan or prognosis yet but I am preparing myself for the worst..

Hi Grace its c**p isnt it my hubby had is results IT has spread to his bones only the middle area and spread to 2 lymph nodes in his stomach but im guess the little bit of good news we had was his PSA level before ewe knew he had cancer was 776 but after having 1 testosterone injection it ha dropped to 81 which think hospital was a little shocked that it had dropped that much which is amazing so something clearly is working for my hubby he hasnt started any treatment for his bone cancer as yet we speak to somebody on the 6th of feb regarding more treatment keep in touch hun be nice to talk we are in the same situation 

Hi.  Christmas and New Year went ok but always thinking of the upcoming treatment - no doubt like yourselves. Had my first Chemo session on Monday and really feeling the effects. Very little sleep for three nights - that’s likely the steroids - but did good last night. Aching all over my skeleton but not unduly so - hips especially.  Sore mouth from Chemo but have a special mouthwash for that -  5-7 days should sort that. Now on a long course of Daralutamide (NUBEQA]  which, I read, blocks testosterone from reaching prostate cancer cells and hopefully the Chemo will do its best to kill off those cancer cells. Other pills for constipation etc.  Injections starting tomorrow to replenish good blood cells that the Chemo has killed off. Apparently the first week after any Chemo session is the worst. PSA at last weeks test is down to .97 - so something is working. Keep me posted. Thanks. 

Hi.  Christmas and New Year went ok but always thinking of the upcoming treatment - no doubt like yourselves. Had my first Chemo session on Monday and really feeling the effects. Very little sleep for three nights - that’s likely the steroids - but did good last night. Aching all over my skeleton but not unduly so - hips especially.  Sore mouth from Chemo but have a special mouthwash for that -  5-7 days should sort that. Now on a long course of Daralutamide (NUBEQA]  which, I read, blocks testosterone from reaching prostate cancer cells and hopefully the Chemo will do its best to kill off those cancer cells. Other pills for constipation etc.  Injections starting tomorrow to replenish good blood cells that the Chemo has killed off. Apparently the first week after any Chemo session is the worst. PSA at last weeks test is down to .97 - so something is working. Keep me posted. Thanks. 

my husbands geason score was 4x5=9 dont realy know what the gleason score means TBH

Hi. Mine was 5 + 4, so slightly worse, but anything with a 9 total is considered as high risk. My understanding is that I have more 5 than 4 from the prostate core samples taken and hence why 5 came first.  5 is the highest rating which is decided by microscopic investigation of the cancer within the core samples taken during the biopsy.  No doubt your consultant will go through the options on February 6th, which should include the Chemo option and prognosis with or without Chemo treatment.

so is the gleason score is 1 score for prostate and 1 score for the bone cancer then do you think, my hubby said he doesnt want the chemo as he didnt want to be ill but will have anything eles they did speak to him regarding clinical trials we are still in shock of how much the PSA level has come down from 776 to 81 that is a massive drop isnt it 

Hi.  The Gleason score is based on the aggressiveness of cancer found in the core samples obtained from the biopsy - nothing to do with bones. My understanding is that a score is applied to each core sample, with the number of cores taken being decided by the size of the prostate, with samples being taken from all areas. I had 32 cores taken. Of those, I had more 5’s than 4’s - hence 5+4 and a Gleason of 9.  The PSA drop from 776 was quite substantial and shows that the initial ADT therapy has worked and should continue to work.  The consultant will obviously go through the treatment options on February 6th and you’ll be given a time frame to decide - it seems that there is a specific start point if chemotherapy is chosen as part of the treatment . 

they took 6 biopsys from my hubby 

OK.  That doesn’t seem very many - I was expecting 24 and ended at 32. Have you received a biopsy report letter with the details from the consultant? A copy will go to you and his doctor. 

yes we have received that letter loads of numbers and letters on it which we dont understand do you understand what they all mean

Hi.  On the day of the biopsy I left the hospital with a clinical summary. This summary confirmed the number of biopsy samples being sent to histology for  assessment - the Gleason number of 5+4. . Three weeks after the biopsy I met with the Urology clinical consultant who went through my scans on screen and the options for treatment. It then came down to a decision from myself as to how I would like to proceed from the options outlined, with advice that I had to make a decision within three months of initial ADT treatment. The consultant phoned me at 2 1/2 months and I made my decision.   There are four second generation drug therapies, one of which is used with Chemotherapy.    If you Google ‘triplet therapy prostate cancer’ this drug in mentioned and the narrative is under the website of prostatecanceruk.org.  Hope this helps. 

Good morning sticher how are you doing ? hows your chemo treating you 

Awful sleep pattern for 3 days.  A bit achey and lethargic but today is just tiredness.  Two more weeks to go and then the second session.