hormone refactory - continued treatment next step - - Page 3Advanced or metastatic cancer

User

Posted 09 Jan 2016 at 22:18

Hi to you all,
Again thanks for all of your comments, I can't express enough how appreciative we are for them.
Our minds are becoming more positively focused to face the oncoming chemo treatment. From your experiences we are certainly more reassured that it will be manageable.
Think I may be a bit obsessive with the cleaning regime, that's just given me something else to add to my medical list - cleaning products!!
I will keep you updated as to our progress.
Best wishes to you all.
Lesley x

User

Posted 13 Feb 2016 at 09:39

Hi all,
Time to update, some good, some not so good. Hoping for some advice on the maybe/or maybe not so good.
Well firstly, good. Chemo cycle 1 went a lot better than expected with no bad side effects at all.Still a head full of hair, no nausea/sickness, no infections. More tiredness has been the only minor problem. We didn't venture out a lot but did treat ourselves to a visit to the Black Country Museum. Well I can highly recommend this to anybody coming to this area, it's amazing how long you can live in an area and not visit your own local attractions.
Now for the not so good!! Latest blood test pre next course of chemo shows the ALP- down a little from 200 to 185, but PSA - shot up from 78 to 197.6. Not sure what to think really, might it be a initial flare up in first response to chemo and will settle after next treatment or is it that the cancer may not be responding to treatment. Next chemo on 15th.
Any thoughts my friends?
As always best wishes to you all.
Lesley x

User

Posted 13 Feb 2016 at 11:46

Lesley not had chemo yet so cannot advise though I do expect the impact of chemo is cumulative. Maybe need to ask your onco in next visit. But being well and coping with it is of course important so good start otherwise. Others will give more specific advice.

User

Posted 13 Feb 2016 at 22:27

Hi Lesley,
I don't know anything about a flare with chemo but it does happen with some of the HT treatments so fingers crossed that this is what is happening.
BFN
Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 15 Feb 2016 at 20:29

Hi Lesley
I'm so sorry to hear this. I don't know if this helps but I have seen people say here before that PSA after chemo can rise because dying cells give off more PSA. I hope that's the reason for such a large rise. When do you see a consultant next?

Lots of love
Allison xxx

User

Posted 15 Feb 2016 at 21:45

Hi all
Thank you for your kind replies, really appreciated.
This is such a learning curve, continually having to pick up new info to understand what is happening on this journey.I have been doing a bit of googling on psa flare during docetaxel. I know we have to be mindful of how reliable some of the sites are but it sounds like a small percentage of men having docetaxel can have this flare up during first 6 weeks.
Bob has just had 2nd cycle today so have my fingers crossed that maybe things will soon settle.
Will certainly be asking Oncologist on next visit about this increase in psa, Allison - 3 weeks time. Long time to wait for answers but hey Ho we must stay positive.
Do think of you all on each of your personal journeys.
Love to all, take care. Thanks again for your thoughts.
Lesley x

Edited by member 15 Feb 2016 at 22:40 | Reason: Not specified

User

Posted 02 Apr 2016 at 11:20

Hi all,
Mixed feelings my friends but will endeavour to stay positve. PSA now at 262 so has risen again quite considerably. We have spoken to Oncologist and his reassuring comment was not to be concerned at this stage as PSA can be all over the place. Also said,as devonmaid you commented,dead cancer cells produce psa. My god there must have been a lot of cancer cells was my thought!!! He will plan scans at end of chemo course to reassess progress.Still feel a little anxious despite consultants advice but, hey Ho, we must try to stay focussed and positve.

Bob has just had cycle 4, doing ok. Side effects are still manageable athough somewhat worse as we progress through the cycles.More tiredness and more hair coming out, perhaps more gut ache.

We did get a lovely couple of days away to barmouth, great therapy for both of us. Few glasses of wine for me!!!😊😉

Love to all
Lesley xx

Edited by member 27 Jun 2016 at 15:23 | Reason: Not specified

User

Posted 02 Apr 2016 at 16:04

It seems to be reported often here - the PSA rises during chemo as the cancer becomes more frantic in an attempt to fight back and then produces extra PSA as it dies off.

I hope the few days away has recharged your batteries x

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

User

Posted 02 Apr 2016 at 20:28

Hi Lesley
I'm sorry to hear that the PSA keeps rising, I can only imagine how scary that is. I hope it is his dying cancer cells putting up a last fight, that would be great. I do agree that keeping from dwelling on illness is a help, planning trips away and even a lunch with family keeps us on an even keel (most of the time). Sometimes it's the smaller annoyances that seem to tip us over but it's not an easy thing to do to keep being positive. I really admire you both for your zest for life, but I'm grateful that talk of skiing has stopped, that was a heck of a risk. A few glasses of wine in Barmouth sounds much more like it. I'm sure Bob will feel much better once the chemo is over, I think it must put you both into a high state of alert all the time. How is work going? It must be tough leaving him and caring less about work issues, I know it became too much for me and I'm much happier staying around caring for John and not having to make my brain ache with all that legal stuff I do for a living.

Is Bob still on Stillbestrill? John remains on his and it continues to keep his PSA down (as we all know that statement is only as good as the last test results). Will they offer enzalutimide after chemo? That is fairly well tolerated it seems.

I think you may need the forum comfort blanket, I know Rosy needed it and so did Julie, I don't think they'd mind sharing it with you.

Lots of love and hugs
Devonmaid xxx

User

Posted 02 Apr 2016 at 22:11

Hi Lesley,
Comfort blanket is on its way I have sent it first class post.
BFN
Julie x

NEVER LAUGH AT A LIVE DRAGON

User

Posted 03 Apr 2016 at 09:45

Hi Lesley
This must be a very worrying time for you both. PSA rise is almost expected for men starting Docetaxel chemo with a high figure. By cycle 4 or 5 Your Onco should know if the chemo is working, he may call for more scans to back up his thinking. He may even decide to extend the course to 8 or even 10 cycles if he feels it is working and just needs more time. Sadly there is also the possibility that he decides that palliative chemo is not actually helping much and is putting Bob through all those side effects for no real benefit.

There are still more options one of these is Radium 223. It has had some significant benefits for men here on the forum, you have to have been down the chemo route to qualify for it so Bob may be offered that next. The main thing is to keep Bob feeling reasonably well despite his PSA levels.

I see Julie has sent you the cuddle blanket, it has done the rounds over the years but it signifies our solidarity it lets you know we are all thinking of you and will be here to try and offer you any support we can.

I will be thinking of you and hoping that rounds 5 and 6 hail that knock down punch.

All my very best wishes
xxxx
Mo

User

Posted 03 Apr 2016 at 09:45

Arrh Julie thanks so much for sharing the comfort blanket. Received better than 1st class post, sunday delivery free and sent with love,kindness and support! 😊 It's a tough old journey at times as you all very well know. I cannot express enough how apreciative I am of your comments and support, lyn, devonmaid and Julie.

Devonmaid - work isnt easy on top of everything but is, should i say, tolerable. The team I work with now are a great support and although I am experienced at what I do they are happy to take the lead. There has been a recent announcement that our dept is to close in 6 months and this is a bit unsettling as not long moved from another closed dept! I don't like leaving bob but I think he does like a little bit of space from me!!😉 I work part time so he doesn't get too much freedom!!! Lol.
Stilboestril (can never spell that d..m word) was stopped pre starting chemo. It's so good to see J is still doing well with his. Have still got fingers/ toes crossed that cancer is responding to chemo but maybe enzalutamide or possible radium maybe an option. Will cross that bridge when it arrives.

I totally agree, barmouth was a much safer BREAK! than skiing!! Good therapy for both of us lyn. Must start thinking about another little break soon.

Lesley xx

User

Posted 03 Apr 2016 at 12:26

Hi mo
It is a bit worrying but am trying to hang onto the view that it could be the dead cancer cells producing psa.
Thank you so much for your kind, informative and Frank post. Hadn't thought of the possibility extending the chemo course.
I am endeavouring to stay hopeful and positive.
I don't know when and who thought of the comfort blanket but it is such an ingenious idea. It is so lovely to feel the solidarity of every one on here all to ready to help and show support when it's so needed.
Hope you are keeping well mo and have some good travel plans for the summer.
Lesley xx

User

Posted 03 Apr 2016 at 20:44

So glad that you received the blanket Lesley
I know it is a bit tatty but it has been all over the country , I did give it a a wash on the delicate cycle before I sent it , just to give it a freshen. If you wrap it around your shoulders when you are feeling low you will be able to feel the love from all of us.
When you have finished with it if you could pass it on to Devonmaid rumour has it she is pretty good with a needle and thread and I did notice that it needs some blanket stitching on the edges , it is just a little bit frayed .
I am not sure where or who first made it but what I do no is it realy does help to give comfort when it is needed.
If you could manage to not spill anything on it that would be great.😚
Stay strong , and if you can't stay strong then wrap up in the blanket.
BFN
Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 03 Apr 2016 at 21:33

Julie
Many many thanks!It's the most beautiful blanket I've ever received. Im very sorry though I've already spilt on it, it's soaking wet with tears. Tears that perhaps should be shed more often than they are. I promise to dry it out before I send it for repair to devonmaid.
Lesley xxxxx

User

Posted 04 Apr 2016 at 19:34

Lesley,

Sorry to hear of your struggles. It is though still all up for grabs. The PSA may start to respond and if it does suspect enzalutimide becomes the better choice. If it dosn't and cancer seen as still active, radium 223 works best in those circumstances. So still options. I follow you with interest as I am not far behind you and really hope things will begin to pick up. I'll watch this space with hope!

User

Posted 04 Apr 2016 at 20:18

No rush with the blanket Lesley, A few stitches in the right place (I'll use a nice silk thread I think) will have it back in action in no time. I heard that this particular blanket has magic properties, it absorbs sorrow and fills the wearer with love and hugs (as Julie says), no amount of washing, delicate or not, ever takes away its special properties. Our blanket has comforted many of us and now it's your turn.

With love
Devonmaid xxxx

User

Posted 27 Jun 2016 at 16:14

Hi all
Feel its time to update you all on our progress. As the patern continues mixed good and not so good.
Well!!Here we go! Since April's postings bobs PSA has continued to rise, it's now 609! Urgh. (catching up with Trevor readings, julie!). ALP - 107 so remaining within normal limit. Bonescan done- awaiting results and bob is continuing with an extra 4 cycles of doxetaxil, just had chemo 8. I'm afraid I cannot deny this is a little worrying and bob is feeling bit fed up and quite scared.
So medically that was the not so good but for life experiences despite bob feeling crapp he is so living life. We had a few days in Cornwall and walked along some beautiful coast lines. He also went away with my son for what I call 'a man day' to the Goodwood fast car festival. What a fab time they had,went on a helicopter ride (very jelous I was). Also he didn't tell me until after that he went as a passenger in a rally car. Apparently there were warning signs saying anybody with neck or back problems should not take part. I think metastases throughout spine would come into that category!! I gave him a telling off! Lol.He is a law unto himself!!Ha ha
I hope this gives inspiration to others that having advanced cancer should not entirely restrict your life. But I also say please be safe in what you do, us ladies do stress!!!
Take care all
Lesley xx

User

Posted 27 Jun 2016 at 16:49

Loved your post Lesley, not the PSA rise bit but the getting on with life part for those of us who drew the short straw on this journey it is so important to make every moment count. Know what you mean though about the daft things our men get up to but I have to admit they sure are living in the moment.
BFN
Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 27 Jun 2016 at 17:16

I am so impressed that both your men get on with their lives, not just living it - but living in the fast lane!!

Well done to them both

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

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