chemotherapy and after

User

Posted 26 Jul 2016 at 10:31

Hello everyone,

I was diagnosed with advanced prostate cancer with metastases in my pelvis and spine two years ago. It was a big shock particularly as I had had a TURP operation on my prostate the previous year and the histology from that had been cancer free. I was 76 when I was diagnosed so I guess I had reached an age where you should know you are not going to live for ever but it was still a very big shock as I had never had anything wrong with me all my life and was still very fit and active. My wife and I have always loved mountain walking.

I was immediately put on hormone treatment; monthly injections of degarelix. These are a bit sore but very effective and my PSA came down from 80 to 1 in about a month and I still felt well except for a bit of dull backache. I found that life went on. We joined the local support group and my wife found useful contacts and people to talk to at the local MacMillan too. I would recommend both these things to anyone coping with a new diagnosis. We actually found that we were enjoying life. I told all my friends and family everything and that worked for me too.

But about ten months later my cancer became castrate resistant and started growing again and I got more pain. The pain was sorted with a cocktail of drugs from my GP including opiates and I was referred to an oncologist. I opted for a course of ten cycles of chemotherapy with docetaxel and signed up for an experimental trial of a new immunotherapy treatment which involved harvesting my own white blood cells, culturing something called dendritic cells from them and then injecting them back into me at monthly intervals. Of course I don't know whether I am getting these cells or just a placebo but I felt it was worth doing to keep research going and help in the development of new treatments. When you start to live with cancer you quickly learn that there is lots going on to develop new treatments.

The chemotherapy was quite tolerable for about six cycles even though I was troubled with a few infections but towards the end it became demanding with extreme fatigue, loss of sensation in fingers and toes and damage to nails and severe breathlessness. I was very glad to see the end of chemo but a couple of months on things are slowly getting back to normal. Scans show that the cancer has been knocked back a long way. I have come off pain killers and I am virtually pain free. I have more puff again but I feel I have lost a lot of fitness. I have been surprised at how slow recovery has been but feel I am getting there. I have felt more upset recently that at any time in treatment. What next I wonder. I would love to hear from anyone with similar experiences.

Lancashire Fred

User

Posted 26 Jul 2016 at 12:50

Fred,

Welcome!

I'm sure there will be folk who have similar experiences, I just want to say that to come through the experience and the chemo, especially at 76, with such a positive attitude, is quite amazing: that alone will count for a lot going forward.

When you say 'more upset', is this a general lingering low mood, or is it mood swings?

User

Posted 26 Jul 2016 at 18:47

Hello Fred and welcome

I admire your spirit and tenacity and hope that the tiredness passes soon

****

We can't control the winds - but we can adjust our sails

User

Posted 26 Jul 2016 at 20:18

Thanks for this Andrew. No, it wasn't a low mood. I didn't feel depressed but my positivity slipped. I had moments of feeling sad and weepy and sorry for myself and my situation. In a way this didn;t worry me too much because I guess a good cry does you good. Better out than in! but it was a surprise as during chemo treatment I had always reacted cheerfully with the nursing staff and just felt I had to get on with it. After treatment there is a sort of vacuum. I talked to a Macmillan counsellor last week who told me that this isn't unusual. One of their publications mentions it I find. If anyone has any experience of how long it takes to recover from chemo I would love to hear.

Lancashire Fred

User

Posted 27 Jul 2016 at 05:35

hi LF

we all are a bit different with treatment, I completed my chemo in feb this year, went through chemo without any serious issues, but since it has made me more fatigued ( I was very fit before my diagnosis in 2015)

my bone pain increased so my pain management has increased, my hands and feet feel numb after I have either had a lay down or a sleep

regards

nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User

Posted 27 Jul 2016 at 06:36

Hi Fred, I had 6 cycles of docetaxl followed by 6 weeks or radiotherapy from Jan to June 2015, during that time mentally I was ok but a bit less fit ( my running times were 25% slower for a marathon( yes I was fit before but nothing special and was 50). The area I suffered with was the sadness that you talk about. I got that from July to November , I think it was a bit about lots of attention and tests and positivity about doing something then nothing. I found it very hard, I could not face work and found myself bottling up the emotion when others were around. I used to and still do on occasions cry plenty when in bed during the small hours.

It has got better, I live for every morning when I can get up and go for my therapeutic run, then the world is better. I appreciate that I am lucky that I can run but my advice to anyone would be find the thing that does it for you and do it. My way of overcoming the lows is always always plan your " fun" for the next day today, then when you wake you know what you are looking forward to and after that plan the next day's etc. Works for me anyway, it may for you?

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User

Posted 27 Jul 2016 at 08:34

A quick reply and thanks to "bladerunner" and "I run"" what a coincidence to pick up replies from two runners. I am full of admiration for you as running was never my thing. What comes across as comforting is the realisation that we are all different. I suppose our bodies are different and will react in different ways to treatment. There probably won't be anyone with exactly the same experience so I will be patient and see what develops. At the moment I seem to be having a few days when I feel strong and then days when I feel tired and weak again. Fascinating to hear the experience of increased pain after chemo as I have bit of hip pain at the moment. At the moment I am just assuming it is wear and tear of a 78 year old but I suppose it could be cancer pain returning. Talk to the GP next week. Good to hear that I am not the only guy who can be tearful and it is interesting to hear about your strategies. I guess my general philosophy as a former mountaineer is that cancer is a tough hill to climb but it is a challenge and I used to like challenges even when they were tough and painful. you meet nice people in mountains too and you guys sound like nice people. Thanks.

User

Posted 28 Jul 2016 at 07:29

Hi fred
I think rightly or wrongly that having run marathons as also Irun, yourself doing mountain climbing, it helps with your mental strength as this plays a big part in our sport
I also started to think the extra hip pain was cancer related its a common thought, but my last PSA (0.01) result showed the cancer was not the issue
my GP altered my tablets from co codamol and Naproxen to a Butrans (10) skin patch which contains buprenorphine it helps a lot more

regards
nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User

Posted 29 Jul 2016 at 14:46

Thanks Nidge, Fred

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