Support and Advice

Support and Advice

User

Posted 11 Jul 2022 at 18:55

Hi Dave, apart from Portsmouth and the north of Scotland, we would stop in Belfast, Isle of Man. So you are right as we should still be covered by the NHS. We were asked by Saga about taking insurance cover, what would the insurance cover?.

User

Posted 12 Jul 2022 at 19:39

Hi All, Mike saw the Oncologist today and he took us through the biopsy test results. He confirmed the cancer had spread to the spine, lymph glands and a few spots on the lungs. The liver was ok. He explained that Mike had two options for treatment - the first was to go for chemotherapy and the second optioni was to have the tablets ( I cant remember the name). However he strongly suggested Mike should go for chemotherapy as he is so fit and well and would therefore be able to tolerate it a lot better. So Mike is now not sure what to do, his first choice is to go for the tablets. Because his Gleason score is 10 which we are told shows that the cancer is very aggressive that is why chemotherapy was suggeted.

I am so upset with all of this, interestingly unlike the Urologist who was more positive,the Oncologoist gave me the impression that Mike's life expectancy was not good Maybe I am over reacting. Mike is taking this in his stride and as I speak is haveing his daily shot of whiskey. Any comments and shared experience would be greatly appreciated.

Maud.

User

Posted 12 Jul 2022 at 21:07

I think when an oncologist recommends chemo first and then tablets, that is what you should do - they are experts in their field. Research shows that chemo can make the tablets work better and for longer.

The chemo is probably docetaxel - most men tolerate it quite well and he will probably be able to continue enjoying his tennis apart from a few days in each cycle where he might want to avoid people in case he gets an infection.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 12 Jul 2022 at 21:30

Hi. Sorry to hear this and I hope he and you are ok. I feel, as above, that going with the oncologist view, given Mike’s fitness, would seem the best course of action at this point. Good luck with it all.

User

Posted 12 Jul 2022 at 23:00

Thank you Lynne for your positive message . Mike has decided to have chemotherapy and we were told the waiting time is between 2 to 3 weeks. He read up on all the side effects of chemotherapy and it was that which put him off having it. However he knows that it’s the right thing to do.

User

Posted 12 Jul 2022 at 23:05

Thanks Mike for your good wishes. Just wondering how you are getting on with your treatment. Hope all is going well.

User

Posted 12 Jul 2022 at 23:15

Sorry to read this news again Maud.

Glad Mike has made his decision for chemo, I’m sure he will do really well. Reading the possible side effects is always a worry, but it’s really unlikely he will get them all and a lot seem to get very few. I think if we read all the possible side effects of paracetamol etc before taking we would probably think twice.

The main thing is that Mike continues to feel well, it’s great that he is continuing his sports….I’m sure it will make a huge difference physically and mentally.

Hope you’re ok too. Take care x

User

Posted 12 Jul 2022 at 23:22

Originally Posted by: Online Community Member

All chemo has risks but the side effects of docetaxel are generally milder than for other chemotherapies. My father-in-law had it at the age of 79 and his biggest problem was the horrible metallic taste in his mouth and mouth ulcers - this was resolved by sucking frozen cubes of fresh pineapple during the infusions (but you should check with Mike's doctor because people with heart problems mustn't have too much pineapple). His other big problem was that his wife wouldn't let him go to the pub on days 5- 8 in case he caught some bug!

If Mike finds it unbearable, he can always stop early - even having just 2 or 3 infusions seems to provide a benefit.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 13 Jul 2022 at 02:43

Originally Posted by: Online Community Member

Thanks Mike for your good wishes. Just wondering how you are getting on with your treatment. Hope all is going well.

Hi Maud, thank you. Hormone treatment is going ok albeit with some pretty harsh side effects at night (flushes and insomnia). I see Oncologist Thursday this week for the next steps, I expect something similar to your situation but we shall see.

Take care.

User

Posted 13 Jul 2022 at 10:20

Hi All, has anyone gone on holiday between having chemotherapy sessions please. We booked a UK cruise on the 25th September for 9 days. Mike is hoping to start his chemotherapy in around 2 to 3 weeks time. The Oncologist said it was ok for him to take his holiday especially as he is not travelling abroad. However I just wonder if anyone else has done this and what their experience was like. Also I am assuming we will need to let the insurance people know.

My husband is such a warrior, he is so matter of fact about all of this and I feel that due to his posistive attitude he will pull through this journey well.

User

Posted 20 Jul 2022 at 10:17

HI All just to update on the latest development re Mike. Saw the Oncologis last week and we were told that Mike has T3bN1M1c. So a very aggressive cancer and confirmed as stage 4 metatastic . So he starts his chemotherapy treatment a week on Friday and we had his assessment meeting yesterday with the Oncology nurse. She was very thorough and whilst there was so much information to take in at least we were given the written stuff as well. I dont know how I feel anymore as the final diagnosis whilst it was verbalised to us to then see it in writing was another shock.

Apparently the bone scan has showon multiple bone metastases invnolving the thoracolumbar spine, bilateral ribs, bilateral hemipelvis, right humerus and right femoral shaft. he CT scan has shown metastases in the right pubic ramus, left acetabulum, left posterior ilac wing, bilateral ribs and spine. Also small lung nodules. Nothing in the liver! I was in total shock when I read the report from the Oncologist. Despite all of this Mike continues to play tennis as if there is nothing wrong with him. Even the Oncology Nurse who was at the meeting with the Oncologist told me on the phone that the findings somewhat do not match the evidence when she saw Mike and how fit he is. The Oncologist was just as taken aback. I am not sure what to make of it all, however I am staying strong for Mike as its the least I can do for him.

Hope you are all okay and looking after yourselves in this hot weather.

User

Posted 20 Jul 2022 at 12:33

Nothing in the liver!

Well I always try to look on the bright side so I think we have to cling on to that one. Let's face it there isn't anything else good in that report. However at the moment Mike is doing well, so I think you will have to go with the flow and enjoy life as much as possible. In some respects the treatment is going to be worse than the disease, but he was already getting pain before the HT, without treatment I think things would very soon have got a lot worse.

Hopefully he will respond to the chemo well and the side effects won't be too bad.

Dave

User

Posted 20 Jul 2022 at 15:59

Hi Dave, yes I agree with you re looking on the bright side of things. Its just in my head I cant somehow match the awful report findings with the clinical evidence that Mike displays. Even the Oncologist appeared baffled espeially when the WHO performance test was zero and his clinical examination of Mike was also 100 percent positive. When he pressed on the spine to ascertain pain and Mike felt nothing the Oncologist was baffled. So my questions is when the pathologists read the biopsy findings do they get it wrong?. I know it is subjective depending on the pathologists own interpretation?. Maybe I am just clutching at straws. !!

Mike came back from playing tennis this morning and one of his tennis mates said how well Mike was playing!

User

Posted 20 Jul 2022 at 17:05

To get it wrong from all these tests is very unlikely. Mike has had MRI, biopsy and bonescan that's three tests all confirming each other. Now we have had one person on here who had his biopsy results mixed up, when they did the post op histology they had a perfectly healthy prostate, a legal case followed. For all I know we might have several other people on here where things got mixed up and no one ever knew. But the chances of it being a mix up with Mike are vanishingly slim.

HT can really knock the cancer back, so the fact he feels well is a sign the treatment is working. You can look up life expectancy for people with various diagnosis figures and on the face of it it would seem three years would be Mike's life expectancy, but we have had people on here for 15 years, so for some the HT works for a very long time.

Dave

User

Posted 20 Jul 2022 at 19:41

Hi Maud. Sorry to hear about this. Your husband and I are very similar, much be the shared name! I had much the same news at my oncology appointment and there is nothing for it but to stay active and positive. If you need any support then make sure you get it too. I worry more about my wife more than I do myself to be honest.

Take care Maud.

Cheers

Michael

User

Posted 20 Jul 2022 at 20:17

HI Michael, thanks for your support. I also hope that whatever your news was at your oncology appointment you will commence treatment asap. I hope they have offered you a choice of treatments as my Mike was. Having done a lot of research on life expectancy it is not all doom and gloom. Of course the chemotherapy treatment hopefully will have a positive impact on you as I am hoping it will on my husband. I will phone Macmillan tomorrow and ask if I can have some counselling as I feel I need to share my thoughts etc with someone with experience in these areas.

Take care of yourself and keep in touch.

Maud.

User

Posted 20 Jul 2022 at 20:19

User

Posted 20 Jul 2022 at 21:53

Also look to see where your nearest Maggie's centre is, Maud

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 21 Jul 2022 at 15:57

Thanks Lyn my nearest centre is Coventry. I rang the Macmillan nurse specialist for prostate cancer this morning and she was absolutely brilliant. She definitely knew everything there was to know about the management of hormone therapy and chemotherapy treatment for prostate cancer. She is the first clinican to explain in great detail how the treatement works on the cancer cells and in all was very reassuring. I feel so much better now and definitely recommend speaking to the Macmillan nurses.

Maud

User

Posted 26 Jul 2022 at 18:08

HI all, does anyone know how long the chemotherapy takes to administer. Mike was told it would only be just over an hour and also he could drive home after. I am surprised, however I am taking him there and will be picking him up.

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