Treatment options looking bleak

User

Posted 17 Nov 2015 at 21:48

Having been diagnosed early last year with advanced prostate cancer Dad has tried multiple treatments - to which the cancer appears to be resistant. Hormone implant, hormone therapy, radiotherapy and chemotherapy - he was told today that it's unlikely any further treatment can be offered. The disease has spread to his bones and he has a tumor at the base of his spine which is causing sciatic pain and mobility issues. However, other than the leg pain he says he feels fit and not 'unwell'. Clearly the treatments are taking their toll and he's more tired than he used to be and is increasingly frustrated by the lack of mobility as he has always been a very active man.

We've been advised that Docetaxel was ineffective and therefore that cabazitaxel wouldn't be effective either as it's very similar. Radium-223 isn't being offered either as he's not 'fit enough' and of course, he'll need a staging scan to confirm the disease hasn't spread beyond the bones. The concern here is that after 2 bouts of radiotherapy to the pelvic and spinal area that the Radium may do more damage than good?

It's been suggested Dad should consider quality of life over further treatment.... mutterings of a drug available privately at £5k per month but no information to be able to understand whether this is worth investigating any further. To be honest, we were in shock and have come away with more questions than answers.

Has anyone else been refused further treatment at this stage or gone on to have further chemo after Docetaxel? Feeling anxious.

User

Posted 18 Nov 2015 at 05:34

hi maria
so sorry to read this about your dad, afraid can not give you answers you desperately required, but am thinking of you all

regards
nidge

run long and prosper

'pooh how do you spell love'

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

User

Posted 18 Nov 2015 at 08:53

Just to welcome you Maria.
I'm sure that you'll get others along today who have more experience than me.

Best Wishes
Sandra

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

User

Posted 18 Nov 2015 at 09:37

Hi Maria,

These are the questions none of us want to consider but we simply have to at some stage. My partner died last year, also a very aggressive cancer with lots of complications. At the time I would have given or paid anything for treatments which might have helped my partner, but, yes, quality of life is a massive consideration. What cost is life with minimal quality ? A very personal choice. Some men will accept increasing pain and disability, others, like my partner will consider this isnt a life at all. Have you had any open, upfront discussions with your Dad about his wishes for end of life care, resusitation, pain relief and so on ? Do you have a palliative care team who are the ones skilled in helping with these issues and supporting the family and who can help plan for the future and probably offer a better quality of life for as long as possible ?

Sometimes, involving more and more treatments make matters worse with more side effects and reduced quality of life. The important thing is that right now, your Dad is getting around and feels ok so take as much advantage to have good times with him as possible. Concentrate on the day to day and appreciating him and get him to talk about his priorities from week to week, however small these may be, seeing family, getting out, good meals etc., the little things which may mean so much but which are achievable right now. Sometimes, men deteriorate very quickly, for others it is a slower path. By all means, look into treatments if you wish but find out if it is what Dad wants, he may have other ideas and opinions. I found Atul Gawande's book 'Being Mortal' massively helpful and realistic about facing our own mortality and situations like these and what really matters for this stage of our lives.

My heart goes out to you, I hope you dont mind I have chosen to be very upfront about a situation many have been through on this site.

Regards, Fiona.

Edited by member 18 Nov 2015 at 09:39 | Reason: Not specified

User

Posted 18 Nov 2015 at 11:13

Maria

I am so sorry to read another post where hope seems to be running out. Your Dad is going to face some difficult issues in the coming weeks and months.

Fiona has spoken with much wisdom. If I were you I would follow as much of her advice as you can.

I lost my Husband almost 18 months ago, his cancer was very aggressive and responded to nothing he went through so much without any anger, complaints or fear. He chose to keep fighting but it was all to no avail.

There are several threads where I have commented about facing the transition from palliative care to end of life care. If you feel up to it you can search under my user name and the title "Elephants and their part in a dignified death" you can read how My Husband Mick chose to deal with this with my full support.

Your Dad has to choose what he wants to do but it will help him no end if he knows that whatever he chooses, you will be there supporting him all the way.

If he chooses to have no further treatment then there is no telling how long he will have or for how much of that time he will feel well and remain mobile. There will be good times probably many of them, there certainly were for Mick and I right up to the day he died. Our daughter shared in as many of those as she could. So please do try and make the best out of every good moment as they will bring you much comfort on the not so good days. They also become memories you can treasure.

Like Fiona I do apologise if this makes hard reading. We will always be here if you need to talk or just let off steam.

Best wishes and a big virtual hug

Edited by member 18 Nov 2015 at 11:16 | Reason: Not specified

User

Posted 18 Nov 2015 at 13:38

Hi Maria,

One thing I forgot to mention in my post, Mo has also had experience of this, is have your Dad's medics talked about Spinal Cord Compression ? Think you said your Dad had sciatic symptoms. They can be evidence of developing SCC where the tumours put pressure on the spinal cord and cause increasing immobility and in emergencies, bladder and bowel loss of control. Has your Dad had a recent spinal MRI to check this out as it is a major cause of loss of independence, immobility, where the cancer has spread to the bone, especially the spinal cord. You need to be informed what to look out for as it's important your Dad is as independent as possible for as long as is feasible. PCUK also has a good fact sheet on this, best to be prepared in advance whether these things happen or not.

Fiona.

User

Posted 18 Nov 2015 at 16:56

you could also have a chat with the specialist nurses about all your concerns they are as tony the tiger says GREEEEAAAATTT

nidge

run long and prosper

'pooh how do you spell love'

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

User

Posted 19 Nov 2015 at 09:10

I am a bit surprised and puzzled about what you've been told about Cabazitaxel. My husband Tony's cancer has also become hormone- resistant, and an early course of Docetaxel seems to have been ineffective. But I understood that Cabazitaxel was useful specifically in cases where Docetaxel didn't work.
Tony has been told that Cabazitaxel will therefore be offered to him at some point, when his newly-commenced treatment with Enzalutamide has either run its course or failed to help.

Has anyone else been told whether Cabazitaxel is likely to work if Docetaxel does not?

Marje

User

Posted 08 Mar 2016 at 17:46

Sorry for the infrequency of posting and responding - it's been a roller coaster ride since November's news. Following that appointment Dad had a 5 day course of radiotherapy which alleviated much of the pain and to some degree, improved his mobility. Chemo is not an option but, following MRI and CT scans in the New Year he was offered Radium 223. Several week so of waiting for the scans, the results and referral appointment yesterday his consultant agreed - provided his bloods were good. Having felt treatment options had run out we were all feeling thankful that this treatment may extend his life by some months, as well as reducing pain due to the bone metastases.

However, meeting his consultant today we've come back to earth with a severe bump. His platelet count is too low to enable the treatment to be undertaken safely. In addition, an MRI scan has been booked to investigate a possible skull metastases which could be the cause of a numb lip/chin, nausea and problems swallowing. Radium is not off the radar yet - but I fear the consultant is trying to let us down gently. If there is a metastase on the skull radiotherapy is an option and a the platelets can be topped up.

Feel a little as soon as we plug one hole in the dam, another appears - this is a nasty disease but looks like we have a few more 'plugs'.

Little mentioned about what lies ahead over the next few weeks - and to be honest, during the consultation didn't feel we could ask as outcome of the scans will vary the options but feeling very unprepared and unsure.

Not much to add but felt after all your responses in November I would share the latest update.

User

Posted 08 Mar 2016 at 17:50

Thank you for thinking of us Nidge, it must have helped as things improved a little for a while meaning Dad was able to have a pain-free and enjoyable Christmas with the family. Currently riding another dip but hopeful there'll be more ups for a while yet.

User

Posted 11 Apr 2016 at 18:05

It's with a heavy heart that I write this post. Dad passed away last Wednesday after a rapid decline in his health. We managed to get him to a hospice eventually where he was comfortable for the last 5 hours he was with us. I'm still reeling when I think back to his hospital care and lack of information we received during his stay.

I'm so relieved his is no longer in pain but distraught that more could have been done to make his last days more comfortable for him and less stressful for our family.

User

Posted 11 Apr 2016 at 18:16

I am so sorry to hear you have lost your father, please accept my sincere condolences.

Look after yourself and remember the happy times you had with Dad.

Thanks Chris

User

Posted 11 Apr 2016 at 21:28

So sorry, Maria. I'm sure your Dad appreciated your loving concern and support.

Marej

User

Posted 11 Apr 2016 at 21:40

I am so sorry Maria. I do so understand what you are going through having so recently lost my husband.

Thinking of you and your family

Rosy x

User

Posted 11 Apr 2016 at 21:48

Hi Maria

I'm so sorry to hear about the loss of you father, it seems that his care was less than wonderful, this is a recurring theme at times. I'm glad at least that the hospice was there for his last few hours. Believe it or not that's what happened to my BIL 13 years ago, he was admitted to a hospice only in the hours before his death. Until then he had received very intermittent care and my sister, none at all. It's left a legacy of hurt.

My sincere condolences.

Devonmaid xxxx

User

Posted 11 Apr 2016 at 23:30

Oh Maria, so sorry to read your post and to know that you have been left feeling so angry and let down. The best we can all hope for is that we are able to let someone go with peace in our hearts as well as theirs. Given a little time, I hope you will be able to focus on the dignity and peace of his last few hours rather than the days and weeks before that.

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

User

Posted 12 Apr 2016 at 08:50

So sorry to hear this but he is at peace now and you can and will focus on that in the coming days. Thinking of you.

User

Posted 12 Apr 2016 at 18:48

So sorry Maria. You must have been expecting this for some time but still very hard when it happens. My sincere condolences.

Barry

User

Posted 13 Apr 2016 at 14:01

So sorry to read this Maria my thoughts and condolences go out to you.

BFN

JulieX

NEVER LAUGH AT A LIVE DRAGON

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