SueK Treatment decision, all advice so welcome.

Hello Alwayshope

Thank you again for your very useful advice. Please may I ask why your huband started Docetaxyl in 2023 after Dx in 2020. Was it a choice or did Covid prevent it? I do hope this is not too intrusive question,I am sorry if it is.

We are still going round in circles. One minute we are decided Docetaxyl is happening & then we get scared & think how good things are now. We dont know how long this will last though.

LH has only had 1 psa since starting treatment, down to 7. from over 4000, I would like to know if that is the best reached or is it rising from less. As we were not seen within 12 wks he was not able to start Aplutamide. I dont undertake why.

We were told he would have a psa at 3 months & then at 7 months that would be" used as a base line" when he was seen in urology.

We dont want to delay, yet I feel its rushed  ŵe had little time at the end of our appt with the Oncologist.The only explanation was we "might get 12-18 months on Degarelix before it became resistant".

Sorry to write so much,it does help to get it out!

Sending you and your husband all good wishes. 

Sue 

Hello Suekee . The first thing to say is that there is no standard treatment route and that protocols are changing all the time as new information comes in. Chemotherapy was mentioned when hubby was first diagnosed with lymph node mets plus an odd upper abdominal met but no bone mets Things happened very quickly and we were very much like rabbits caught in the headlights and knew nothing about prostate cancer but it was a joint decision between the medical and radio oncologists that for my husband's type of cancer radiotherapy was the way to go at that time and the areas treated remain good. The difficulty we had was that they couldn't deal with the upper abdominal met at the time because of where it is and it is this one which has caused problems ever since. Triplet Therapy wasn't available when my husband was diagnosed but in hindsight this would have been his best option as it has been shown that the hit it hard and hit it fast route seems to have better long term results in terms of time to progression. Also, as we live in Greece we have to get approved for the use of more expensive treatments like the non generic second generation antiandrogens and this takes time so this option was pushed further down the line and was only started when the first recurrence was seen 18 months after initial diagnosis. I have learnt a lot since my husband was diagnosed because the nerd in me needs to understand what is going on. Another piece of information I came across is that the chemotherapy is more effective when given in the de Novo setting compared to when given in the recurrence setting. Triplet Therapy needs to start with 12 weeks of starting the ADT so this option is also off the table for you now but the doublet therapy of ADT plus Docetaxel shows improved outcomes compared to ADT on its own.

With the Degarelix this gives a rapid initial testosterone reduction without the flare associated with other forms of ADT. This is usually associated with a rapid drop in PSA. The fact that LH's PSA has dropped so far indicates that it is working for now and the kinetics of the PSA show that it can drop further with time but a lot more slowly until it reaches a baseline figure. What that level is can be different for each person but generally the lower the better. 

Apalutamide is normally offered to men when Docetaxel is not an option but the regulatory body in the UK NICE have determined that it can only be offered if treatment starts within 12 weeks of starting ADT. If you want to plod through the guidelines I have attached a link.

https://www.nice.org.uk/guidance/ta741/chapter/3-Committee-discussion

The guidelines are usually given based on how effective the treatment will be but also on a cost basis. 

There are other second generation antiandrogens available but the use of them will be determined by your medical team. The difficulty is to know when to introduce them. They are often used once resistance to the first line ADT is seen as this gives the patient more time with a better quality of life but these second generation antiandrogens do also come with side effects so it is a balancing act. Plus normally, once resistance is seen to the second generation antiandrogen, then going onto another one is not effective. The exception is if Abiraterone is given initially then it can be followed by something like Enzalutamide.

Hello Alwayshope

Again thank you for shaing your wealth of knowledge. I realise you have gleaned it for reasons nobody wants. We do send  your husband and you every good wish for the next chapter.

I smiled at your description of yourself as I could so identify with it. I read & reseach until sometimes hearing of different choices made by others adds to the difficulty of making our own.

We are both retired nurses that is both a blessing & a curse. Unfortunately our history of being "on the other side " has not been good and impacts our ability to trust.

However we are trying to stay with the thought we would rather have an exacting ally that is less of an unknown,  than the aggressive enemy. Also as you have pointed out chemotherapy is the recommended choice.

We too have been like rabbits in headlights,followed by a  short period of calm routine,when everything felt normal.

One of LH's hopes is that he can still go to the theatre on 26th April to see our Grandaughter playing Sandy in Grease. This may sound odd, given the situation, but it means such a lot to us. Given that he may start his treatment in the next 2 wks, so may have only had 1 ,if he feels well enough,what are your experienced thoughts of this please?

Apologies for the length of my posts!

Thank you, so very much.

Sue 

Hello Sue. How I can relate to your comments about having a background in a particular sphere can be a blessing and a curse as the experts think you have a greater knowledge and I have to do the 'translating' for my husband and make sure that they involve him in the discussions. It does help that my training helps with doing the research and being able to understand some of the technical jargon but it also means that I have to make most of the decisions and double check everything as the experts assume I have the knowledge.

I do hope you get to see your Granddaughter play Sandy. When my husband had his chemotherapy we found that the first 9 days of each cycle were quiet days but days 10 to 21 we still went out both during the day and in the evenings. The first cycle usually gives you an idea of what is going to happen for each cycle which makes planning easier. He got into the routine of having an afternoon siesta which meant that he was good to go in the evenings but we did try and avoid crowds, but if this was unavoidable then we wore masks and generally adopted COVID like precautions. Check your calendar and see if you can arrange the cycles so that the 26th April falls into the second half. Quality of life is important whilst on this journey and there are things which can be done to ensure that the right balance is made whilst undergoing chemotherapy.

Hello Alwayshope

Thank you for your reply. Its good to know you recognise the feeling of"blessing and curse too".

I imagine it has been hard for you,trying to interpret for your husband,  whilst perhaps understanding more, particularly implications of choices.

I feel like I am a project manager sometimes,especially organising prescriptions and nurse appointments. Thats my way of coping though.

We have a "pre chemotherapy group meeting" on Wednesday at the Clatterbridge Cancer Centre. As we understand it, part clinical for base line obs etc and part social to meet others about to have treatment. Also an opportunity to ask questions. I will remember your advice about timing & April 26th ,thank you.

Did your husband have any of the other possible side effects other than those you have mentioned? I was reading about possible mouth soreness/thrush risk and peripheral neuropathy.

There is so much unknown for our individual journey, you are helping me feel more confident about it. 

Warm wishes 

Sue

He had the metallic taste but no mouth sores/thrush, peripheral neuropathy, oedema. It was mainly the flu like symptoms for a few days. Fatigue did build up the more cycles he had. Hubby does have CKD and needed Filgrastim for 4 days after each infusion to help with the white bloods. He then needed Epoetin alpha to boost the reds. He didn't develop sepsis but this was the one thing that I monitored him closely for. Slightly loose bowels a couple of times but Imodium sorted it. All body hair went apart from a Mohican - I was surprised how quickly he lost it. Only slight nausea but eating regularly sorted it. Toe nails went a funny colour.

Hi Sue (Suekee ), sorry for the delay in responding but I somehow missed your reply to me on Sunday.  
Firstly, we are all different, so people tolerate treatments very differently.

I was 67 when I started on Chemo and quite fit, also didn’t normally take painkillers or any drugs and was needle phobic!  Well how that changed!  My chemo experience was along the following lines, Monday had about an hour while the infusion went in.  Felt absolutely fine until Thursday when I woke up with chemo head (foggy, slow reactions, spaced out etc) by Sunday I was normal again.  This repeated on each 3 week cycle but also fatigue increased.  I lost my taste somewhere along the process but can’t remember when.  My hair started to thin (so I had it cut really short) and my nails had chemo lines from each cycle.  Unfortunately after round 3 I became neutropenic and managed to get pneumonia and after round 4 (delayed by a week) my bloods were so bad, my oncologist pulled the plug on me.  I have a feeling that my bad reaction meant that the chemo was working extremely well, but I don’t know.  
Anyway that was 7 years ago.  Most of the guys on here who have had Docetaxel, tolerate it reasonably well, so my example was on the extreme side.  I would definitely go through it again if needed.

Please let me know if you want any more info or have any questions.  Best wishes, David

Thank you again! I know everyone is different but the more I know the more prepared I feel. I have to be doing something! 

Hi David

Thank you so much for sharing your experience,I cant tell you how helpful and supportive everyones stories are. Stepping into the unknown is so scary. My husband was heartened when I read to him your account and thst you would definitely go through it again.

Very warm wishes to you 

Sue

Just to say that my husband is going to start chemotherapy again once he is stabilised on the medication for a pulmonary embolism so the previous experience didn't put him off.