Diagnosis update Chemo to start in January

Hi Skippy - Welcome to the Gleason "9" club. I think you knew Chemo was on the cards but like everyone wishing you would miss out on it.

So - New Year - New Start - let's tackle this together you me and the rest of the Community - we have some fantastic people who have in the last 12 months undergone Chemo and I am sure they will be with you on this (I am lucky with a PSA of 182 and Gleason 9 I had no spread). You don't have to go through this alone. As the dates get closer I am sure you will have many questions - ask away.

You have been brave enough to say the diagnosis has affected your mental health - with my Community Champions hat on may I suggest the following:

"Maggie's" - these are cancer support centres and offer a wide range of support - to find your nearest Maggie's - 0300 123 1801, enquiries@maggiescentres.com or www.maggiescentres.org

Mind - Advice and support for mental health issues - 0300 123 3393 ot text 86463 or www.mind.org.uk

MacMillan helpline 0808 808 00 00 (8am to 8pm 7 days a week) it's good to talk and the support there is first class and it's a free call - you have nothing to lose but plenty of help at hand.

There's no shame in asking for help - realising and posting is half the battle - positive thoughts are another half. let me know if I can do anything else for you - you know where I am.

Best wishes - Brian.

Positive vibes are on their way to you right now. Our oncologist said chemo dosent always have to be dreadful and in my husband's case you wouldn't have known he was having treatment as he sailed through it. I suggest you take a book with you or something else to occupy your mind and a little picnic as well. We thought that because we were given an appointment time that husband would go in at that time but the first time we were kept waiting 4 hours as the doctor hadn't signed off the chemo. After that session he went in pretty much on time. You may also get free parking at the hospital so it is worth asking. They may  tell you what foods to avoid but if not just ask me and I will tell you what we were told. Read our profile if you haven't already done so 

At least you know now and can plan accordingly.  Not knowing is the worst thing
Try to find out what drug they are treating you with as some contain alcohol and you wont be able to drive afterwards
I was lucky and got a lift in and collected from
I was on Docetaxel
The treatment took one and half to two hours each time but the first one was longer as they wanted to make sure there were no adverse reactions(there was but all sorted easily)
Be prepared for the side effects.
I felt generally crap for 3-5 days after the treatment.  Taste buds get knackered and only just start to recover before the next treatment so make the most of all the nice food over Christmas as everything will taste crap after treatment.
I lost what little hair I had on my head including ear and nose hair but kept the eyebrows for some reason
 The thing about the nose hair is there is nothing to stop your nose running when it wants and when you're walking the dog on the beach in a gale it tends to run a lot.  Keep hankies in your pockets
I also has severe pain in my ribs after the first treatment.  It started 2 days after the treatment.  It was like being stabbed in the ribs every time I moved.  Hospital couldn't work out what it was but it subsided after 8 days so I didn't worry about it. Thankfully it wasn't repeated

It's important to keep a positive mental attitude.
At one treatment I was in a room with several other people and I mentioned that it was difficult to walk the dog.  One of the other patients said 'How can you walk the dog when you have cancer'
'Willpower' I replied.  It may seem harsh but 50% of this is up to you and I refuse to 'go quietly into the night'.  I'm going to fight this with everything I've got

Good Luck with the treatment

Not what you wanted to hear but I think it’s similar to what you had expected? My husband didn’t have any detectable spread so no chemo experiences to talk about. I can fully appreciate, though, the impact on you mentally. I think whatever the stage, we all reel with the shock of the diagnosis such that we don’t ever take life for granted again! We are all going to be reaching out to you as you go through the chemo! Just ask for support and I think you’ll get it in bucketfuls! I do hope the chemo goes well and really look forward to hearing that the cancer has been beaten into retreat. .

The other thing they want you to check is your temperature twice a day. Don't do what I did and get obsessed with it as I was making hubbie do it even more, I drove us both mad and then if it had gone up from 20 mins previously I was in a panic. 

Hi Skippy.

Well now you know what you are facing and the first step is the chemotherapy. As Shar and Slartiblartfast have said come back to us if you want some tips on infection control and diet and we will try and hold your hand through it.

My husband is also Gleason 9 with distant mets but behind the pancreas, diagnosed 41 months ago and he is still going strong - I hope this gives you optimism. If you do actually have liver involvement then there may be more challenges for you. Because of the distant mets we were warned that it may be trial and error to find out which 2nd generation antiandrogens might work best so be prepared to go through a bit of a rollercoaster to find out which one is the most effective for you. We have found the medical team excellent at monitoring and keeping things under control so make sure you tell them how you feel.

It is really important to try and have a positive attitude. I know it is difficult for you particularly at this time. Please feel free to ask any questions. Sending you the biggest of hugs.

Totally agree with alwayshope about having a positive attitude. This has been my husband since he was first told, and even now he says there is nothing wrong with me. I am convinced that his positive attitude and thinking has got him through this so well. He also believes he is going to live many many years and that there will be a cure.

Hi Startibartfast,

Brilliant attitude. Love it

Best wishes

Dafna

Skippy1959,

It feels like when you think you know the score, something else is thrown at you!  Well, the good news is you now know the start point for your journey.

Slartibartfast has given you a pretty good account of the chemo (Docetaxel) process. I had mine on Mondays and on Tuesday was going around saying what’s all the fuss about.  On Thursdays I got chemo head, which was hard to describe but nearest I can do is say it felt like fog in my head.  Slow recovery to day 7 or 8 ready for the next round.  I would strongly advise you to keep a diary as this is useful to predict how you will be in the next round.  Your neutrophils (in your blood) usually take a hit, so try and avoid getting together with anything catching.

Have a good Christmas.  Stay positive.

David