Hi

Hi Lofty2 .

A warm welcome but sorry that you have had such a shock diagnosis which we found takes a little while to come to terms with. The Bicalutamide is a very good drug which blocks the cancer from being able to use testosterone as it's food. My husband also has advanced metastatic prostate cancer which was diagnosed in July 2020 and is still going strong thanks to a range of different treatments. Can I ask what dose of Bicalutamide you have been put on and have you been told that you may have to have a regular injection to also control your testosterone levels. The more information you can supply the better the help that can be given you such as initial PSA, age, TNM and where the cancer has spread to. The Bicalutamide can suppress you appetite for a few days until your body gets used to it but it should return. In the meantime just try to eat little and often, particularly protein rich foods, but if you find that you are losing weight and your appetite doesn't come back then you should see your doctor. Please come back with any questions and the great people on the forum will try and help.

Hi Always Hope

Thank you for replying to my post and your husband's story. It certainly gives me hope that my cancer can be controlled. This was a double whammy for me and my wife as she had major back surgery on 1st May and the plan was that I would be her carer. She is 80 and I am 83, but have rarely had any illnesses, so we're now in a bit of a pickle; both our sons live abroad. Our eldest granddaughter lives around 10 miles away and has been a great help, but has 2 young children and a full-time job so we cannot expect her to be able to come here too often, although we do have the assistance of a carer for a short while each morning.

My bicalutamide dosage is 50mg and I finish the course next week. I've had my first injection and have been told that I will be having one regularly for the rest of my life. As for PSA levels , in 2011 it was 1.7 and is now 383. I'm due for another PSA blood test next month. I have a full body MRI scan on Saturday, so we'll know more next week when the results are in. So far I've lost about 1stone 4lb, but the weight loss seems to be slowing down now. One of the greatest upsets for my wife is my loss of appetite and so far there's no sign of it returning.

Thanks again for your reply. I'm sure things will settle down soon.

Lofty2

Thank you for getting back to us Lofty2.

I am sorry to hear about your wife and hope that she is on the road to recovery.

It sounds as if you have a good start to treatment with the injection/ implant which will stop your body from producing testosterone and give your medical team time to sort out the best plan for your particular type of prostate cancer. The scan you are having on Saturday will give them a better idea of where the cancer is plus they may also send you for a bone scan- scans are painless but expect to have a tracer injected. You may also have to have a biopsy but come back to us and we can tell you what to expect if you want. Once all the results are in then your team will come up with a plan. I have attached a link which gives you more information on how prostate cancer is diagnosed plus another one on advanced prostate cancer.

www.nhs.uk/.../

https://prostatecanceruk.org/prostate-information-and-support/just-diagnosed/advanced-prostate-cancer

My husband also lost over a stone initially and lost his appetite but this soon recovered after he was started on the hormone therapy, keep an eye on it. The one thing that every man has to deal with is fatigue so stay as active as possible as this helps combat it. There are other side effects but these can usually be helped and you will be offered advice by the great bunch on this forum.

Hello Lofty2 

A warm welcome to the Macmillan Online Prostate Community from me too. I am so sorry to find you here.

It's great to see Alwayshope has given you some fantastic advice, I am aware that a Prostate cancer diagnosis can come as a shock and with the complications of being a carer for your wife I can see you have your hands full.

Can I just say we have some amazing people on our support line on 0808 808 00 00 (8am to 8pm 7 days a week) and they will be happy to give you some extra help and guidance if you need anything. We also can provide help if you need to claim any benefits etc.

Feel free to ask any questions, nothing is too trivial - we are a Community and are all here for you.

Best wishes - Brian.

Hello Lofty and welcome to the forum! I am so sorry to read about your circumstances and realise this will be a big worry for you both. As Always Hope has said, your treatment has been started and will be stopping the cancer in its tracks while the experts work out where the cancer might have spread and how best to treat you. Prostate cancer, even at the advanced stage can often be very well managed  . The medical teams have a lot of oils in their box to throw at it!  

you say you are in ‘a bit of a pickle’. Don’t forget that your local authority social services might be able to help you - sooner or later depending on their workload and the urgency of your need. There are also other potential sources of help - your local Age UK, Carers Association, Citizens Advice, Healthwatch etc are all there to guide. In my area they have introduced the JOY platform - an online service which guides you to all available organisations. I don’t know whether this is a national service or just in our Integrated Care System?

I note that Millibob has given you the MacMillan contact details too! 

i hope you can get the support you both need from us here and from your local organisations. 

i  hope, too, that things soon begin to improve!