SueK Treatment decision, all advice so welcome.

Hello Sue (Suekee) 

A warm welcome to the Macmillan Online Prostate Cancer Community, although I am so sorry to find you here. I am Brian one of the Community Champions here at Macmillan and am on my 4th year of my personal Prostate Cancer journey.

Just to let you know I have removed your 2nd post as it will be better to have just one thread running and get all the answers together in one place - I hope you don't mind!

I can't answer your question myself as I have managed too "dodge" Chemotherapy so far in my journey  but I can understand the oncologist's thinking in killing off the cancer with the chemotherapy and mopping anything left with radiotherapy whilst keeping the HT going to keep the testosterone (the cancer's food) in check.

Hormone therapy gave me intense hot flushes - I cured these by taking sage tablets - I don't know if your LH has tried these, they don't work for everyone - but they did for me.

I hope the above helps - I am sure other Community members will be along soon, in the meantime feel free to ask any questions, however trivial.

Best wishes - Brian.

Hi Suekee , looks like a great PSA reduction (I assume it started at 4,443 not 4.443) and now down to 7.  I had a similar path at the start with Docetaxel and most guys who have had it manage fine.  Nearer the time, others will give you lots of help, but just try and keep your LH as fit as can be.  Ask any questions and the group will try and answer them.  David

Thankyou  Brian for your prompt response & attention to my 2nd post. We are grateful for any help. It is a real rollercoaster of decision making as LH feels well & life is pretty much as before,besides the few adjustments. The prospect of "making him unwell"for 18wks feels dreadful for both of us. Yet we are worried to take a gamble prolonging HT alone. 

Thankyou again

Hello Suekee and welcome from a wife whose husband is also T4 with distant mets. He was diagnosed in July 2020 and had chemotherapy in 2023 when he was 79. One thing to take into consideration is that the hormone therapy puts the cancer into hibernation whereas the chemotherapy and radiotherapy will kill the cancer. Also having chemotherapy as a de Novo treatment has statistically shown to improve the time to recurrence compared to just having the Degarelix and also improve the quality of life. The side effects from the chemotherapy can range from mild taste changes to feeling very unwell for a few days each cycle. We found that my husband was ok for 2 days after the infusion, then felt washed out with flu like symptoms for days 3 to 5 which then improved daily to being back to normal by day 9. Each cycle followed the same pattern so it allowed us to plan to do things on the good days and let him rest on the rough days. You also have the option to stop treatment at any time. The experts have supportive treatment which can help reduce side effects and really do help you through the process. Please ask any questions and we will try to help you.

Hello Alwayshope

Thank you for your swift reply.  It is such a help to read your story. I feel less alone and your advice re noticing patterns and planning around them is very helpful.

I am sure I will be posting lots of questions in the coming weeks. My husband feels so well we are worried about the dide effects and yet dont want to take any risk. The emphasis today seemed to be far more on the G10 than the extreme drop in psa. Your description of chemo killing rather than controlling explained why that was....penny dropped! Even though we knew thats what chemo does. 

Thank you again, warm wishes 

SueK

Hello Millibob

Apologies, I need a bit of help to navigate site!

How do I add  thanks to all those kind people you replied to me from my first post do I post to each individual.? If I want to adk another question to all do I start a new thread ?

Thank you

Sue

Hello SueSuekee . I will jump in here if Brian Millibob doesn't mind. If you want to thank people then you can click on the 'React' which is in green at the bottom of each post and this gives you the option of a thumbs up, a heart, a dislike face or a hug - click on the one you want and it is done. Alternatively you can do a general thanks to everyone in a single post. 

It can be useful to keep all the information on one thread so if you want to ask another question to all then go to your original post and hit the green 'Add a Reply' button and type in your new question, then hit 'Reply' when you have finished. This will bring your thread up to the top and alert those who have previously answered you that there is more activity.

You can also bookmark this thread so that you can find it more easily in the future by clicking on the vertical rectangular icon at the top of the page and it will ask if you want to 'bookmark this forum thread' - click on it and it will automatically save it there. When you want to refer to it in the future, or add to it, then click on the bookmark and then click on the thread heading and it will automatically bring it up.

There has been another thread recently on chemotherapy which you might find useful. I have put a link to it here and if you click on it then this will bring it up for you.

 Hubby about to start chemo 

It can be difficult to take everything in at first and understand the implications of what you are being told so I am glad I have helped to bring you some clarity. Keep asking questions as this will help make you comfortable about the decisions you have to make and also make you feel more in control of what is a very frightening time. It is good that your husband is feeling well at the moment - the aim is to keep him that way for as long as possible and the phrase 'short term pain for long term gain' comes to mind.

Hello Everyone

Thankyou your support & advice so far.

Ive just noticed in my original post the M reads 110 ...it should read M1. 

We have struggled with the decision this morning, lots of stress & tears for both of us. The risk of Docetaxyl frightens us. We cried through it ,concluded the risk of what might be going on with only limited control is worse and more unknown.

We have been gardening this afternoon,enjoying the spring sunshine. Distraction activity has helped.

During all the reseach I'm doing,I came across a product called Pom T. Has anyone any experience/info re this please?

Hello Sue Suekee . The Pomi-T  has been part of a trial with Addenbrooks hospital and has been shown to be beneficial for men with localised prostate cancer, particularly those on Active Surveillance or Watchful Waiting. It improves the time until active treatment is needed. Your husband is not in this category. It has also been shown to be beneficial in the chemotherapy setting for reducing some of the side effects. All food supplements come with a warning that you must check them out with the medical team before taking them as they can interfere with the efficacy of the medication, either by reducing or increasing its effectiveness and sometimes to a dangerous level e.g.  Pomegranate should be taken with caution if you are on statins.

Hello David

Thank you so much for your reply. I wonder would you share your experience of Docetaxyl.  We know it has been offered as an option because my LH's Gleason is 5+5.T4 N0 M1 From what I now know it seems to be the best path at the start of this journey. We are struggling, as Im sure many others making this decision do. Its been a glorious day,my husband has been doing usual gardening chores& feels well. We are scared we are making the right choice at the age of 78yrs.How will he cope with side effects? He is normally known as 2 paracetamol a year guy as rarely unwell. 

Thank you for reading this. 

Panicking Sue &LH.