hormone refactory - continued treatment next step - - Page 4Advanced or metastatic cancer

User

Posted 27 Jun 2016 at 18:40

Topgun was always reminding us 'life is for living' and it seems Bob subscribes to the same point of view. John climbed kilimanjaro in between RP and salvage RT/HT - I didn't want him to do it but I think it was really important to him to simply feel normal.

Not great news about the PSA but these rises do sometimes happen as the cancer cells scream and object to the chemo - just hold on to the thought that they are being damaged beyond repair, cell by cell.

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

User

Posted 28 Jun 2016 at 08:36

Hi Julie, Sandra, lyn,
Thanks for your lovely comments. I will continue to support bob to live his life to the full and endeavour to maintain his wonderful positive attitude.Even if his being normal is being a bit mad!!Maybe next time I should go and be a bit mad with him!!lol.
Fingers crossed that maybe next blood test will see a possible levelling out of psa and alp continues to be stable.
Lesley xx

User

Posted 28 Jun 2016 at 15:21

Great post! My OH just about to start cabazitaxel after HT, enza and docetaxel failed. Wondering what to do about caravan hols booked but hoping to carry on now!
Glen

User

Posted 28 Jun 2016 at 15:48

That's good to hear my dad was diagnosed last Tuesday with a gleeson score of the same 4-5 we are just about to start this journey. They said it's an aggressive cancer is that what the result is or is that something else we need to be worried about? It's spread to his lymph nodes and looks like bones too although he has bone scan tomorrow so fingers crossed. He is determined to keep positive as are we all, reading stories like your certainly helps thank you and good wishes
Amanda

User

Posted 28 Jun 2016 at 16:27

Hi Amanda
I am sorry to hear of your dad's diagnosis. Starting out on this journey is always the scariest time. Once your dad starts on his treatment plan and starts seeing a respons he will come to terms bether wit his diagnosis. There are many men on this site like bob who have responded well to treatments and although we know,for bob,he will never be cured we hope the control of the disease continues for as long as possible.By reading others stories you will see there are many treatment options.
Will try to explain the Gleason scoring but although I understand I'm not the best at putting into words. The higher the numbers the more aggressive the cells are, the first number indicates what the majority of the cells are then the second number indicates the second most common cells. So if the Gleason score of 5-4 would be worse than the 4-5.The lower the scores the less aggressive the cells are.
Downloading the tool kit from this site is a good idea and speaking to the lovely specialist nurses is most helpful.
I wish your dad well with his treatment plan. Hope I have helped.
Take care Amanda
Lesley xx

User

Posted 28 Jun 2016 at 16:33

Thank you Lesley I apprivciate you taking the time to reply and explain the Gleeson score. As you say it is the Unknown and what lies ahead as everyone is different.
Thanks again for your kind words of incouragement good wishes to you both
Amanda x

User

Posted 28 Jun 2016 at 16:41

Hi Glen
Ooo caravan hols, we love our caravan expeditions out into the beautiful English countryside. I do hope you are able to still get away, suppose depends how he gets on with side effects and whether they may consider to delay a treatment. Holidays are good therapy. Hope all goes smoothly with the cabazitaxel, this may be one of our next options.
Take care Glen
Lesley xx

User

Posted 28 Jun 2016 at 17:01

Wonderful to hear you are getting every ounce (or gram) out of life despite the PSA. Keep on going!

Rosy x

User

Posted 28 Jun 2016 at 17:39

Glen, I hope you get away in your caravan, and I can't see why you shouldn't. Tony has had few side effects from his first dose of Cabazitaxel (75% of full dose), apart from being anaemic and weak, and he can't walk far or fast. He is also getting a bit achy in his limbs. and often takes painkillers in the evening.

We have just had a four-night break in Dublin (flying from Exeter) and had a really nice time, doing lots of sightseeing and strolling around . The thing we did try to watch is the risk of picking up infections in the middle of the course, so it's probably best to plan any trips after about Day 10.

Tony has just had blood tests, so once we know what they tell us, and whether he's fit for his second infusion, I'll post again in the thread I started earlier this month.

Marje

Edited by member 28 Jun 2016 at 17:39 | Reason: Not specified

User

Posted 29 Jun 2016 at 18:02

Hi marje
Four nights in Dublin,sounds good. I hadn't realised your OH had stared cabazitaxel (it's so easy to miss peoples new threads). Have followed a previous thread of yours,wishing you both all the best with your new course to treatment.
Take care
Lesley xx

User

Posted 30 Jun 2016 at 08:59

I love that Bob continues to cock a snoop at the cancer (I know it worrying and not dismissing that) but his joie de vivre and way of living life has me loving that man! I wish for small things like a walk, but in our case I can't ever imagine that happening again. I think that the cancer is bad but the side effects of the treatment can be equally debilitating. Lovely to hear that you are both living and doing what you love, despite the cancer and chemo.

Lots of love
Devonmaid xxxx

User

Posted 13 Jul 2016 at 20:01

Hi to all you lovely people
Well it's time for the change!!Bob has completed 8 cycles of docetaxel with ever increasing psa. His recent bone scan showed that there is evidence of new boney cancer deposits now in skull. PSA - 780 now!!!
So here goes tomorrow the start of cabitaxel journey. Always a bit scary changing treatments but maybe we will be lucky enough to see some decline in psa readings.
We both remain forever hopeful.
Love to to all
Lesley xx

User

Posted 13 Jul 2016 at 21:50

Hi there
So things are not looking fantastic, but another new treatment may be just the ticket. Nobody knows until they try.
It's great that you remain positive throughout but make sure you look after yourself too.
Xxx
Mo

User

Posted 14 Jul 2016 at 06:39

It must be very disheartening to see 8 rounds of Chemo having no effect and the cancer just accelerate away again. Very best wishes with the new drug and fingers crossed from me.
Chris

If life gives you lemons , then make lemonade

User

Posted 14 Jul 2016 at 19:02

Thanks Mo and Chris for your caring comments.
Cycle 1 of cabitaxel went ok today, feeling quite tired now. Fingers crossed that side effects will be as tolerable as they were for the docetaxel. Bob would be very grateful if maybe he doesn't have to suffer that horrid metal taste.
Mo, thanks for your kind concern, I am looking after myself.☺🍟🍰🍷🍷🍷🍷🍷 👍
Take care all
Lesley xx

User

Posted 14 Jul 2016 at 22:14

Fingers crossed from me too. Thinking of you both x

User

Posted 15 Jul 2016 at 16:06

Hi Lesley,
I have everything crossed for you I know what you mean about changing treatments it just brings more unknowns . Keep your chin up we are all rooting for you.
BFN
Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 16 Jul 2016 at 08:31

Hi Lesley, scary times but hopefully this latest throw of the dice will give some relief and extend your time. You can but try and hope for signs of success. Thinking of you.

User

Posted 16 Jul 2016 at 08:50

I do feel for you, Lesley, it is gutting to undergo a treatment only to find that it has apparently had no effect. I do hope the cabazitaxel does its job and slows things down a bit.
Marje

User

Posted 16 Jul 2016 at 10:39

Hi Lesley
Our thoughts are with you both too. Hope all goes well with the new treatment.

Debbie x

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