So worried and scared...what's next for my Dad??

User

Posted 04 Oct 2018 at 18:59

Hi everyone

To cut a long story shot, I'm extremely scared and worried about my Dad and really need some advice...

Bit of background:

- Dad was diagnosed with advanced metastatic prostrate cancer in 2013 (solitary rib mets) - presenting PSA of 24

- Gleason 3 + 4 plus score 9 in 12/12 biopsies

- further mets since diagnosis in ankles, knees, shoulders

Treatment to date:

- LHRH analogues since diagnosis (got his PSA down below 0 for approx. 18 months)

- Enzaluthamide from Mar 2016 - Feb 2018 (kept his PSA below 0 for 12 months and then it started to rise-doubling each month)

- Docetaxil - Mar 2018 - Aug 2018 (8 cycles completed out of 10 but with no positive effect on his PSA. In fact, it has continued to rise rapidly and the most recent reading was 897 at the end of August 2018. )

He finished his Chemo back at the end of August after the decision was reached that it wasn't working for him and it feels as though we've been left in limbo ever since with no clear treatment plan.

His Oncologist referred him to Royal Marsde in the hope of getting him onto a trial but they have apparently said they might not be able to help and it now also appears they may in fact have asked for further tests (sorry to be vague but comm's haven't been make overly clear to us as we've only managed to gain this information from PA's and not Dad's Oncologist)

Dad hasn't been seen by his Oncologist, or anyone for that matter, since he finished his chemo back at the end August and he's now been asked to go for a laproscopy and colonoscopy next Tuesday.

He had a bone scan over two weeks ago now and we've still not had the results from that and his last CT scan was largely stable.

I guess my question to all of you is...is this normal?! We seem to have gone from regular contact to radio silence and frankly it make me concerned as I would have least expected him to be having his PSA checked or appointments with his cancer nurse.

To top it all off, Dad's also been really off colour since stopping the chemo but keeps playing it down and is reluctant to call the hospital - fatigue, nausea, occasional vomiting (but only a bit of retching and mucus), burping plus a real loss of appetite which is resulting in weight loss.

I know it can take time for the chemo and steroids to work their way out of your system but as you can see from above Dad's chemo finished quite some time ago now and I'm so scared these symptoms are a sign of something more sinister.

Any help or advice would be greatly appreciated - I know a change in treatment can take time to put into action but I feel so in the dark and am worrying myself sick this end. All I keep thinking is how high his PSA is now from when this all began.

Thanks for reading.

Boo

User

Posted 04 Oct 2018 at 21:15

Hi Boo,

So sorry to hear about your dad and the fact you appear to have been left in limbo. I honestly don't know if this is normal or not. Have you tried to contact the nurse he has been allocated to find out what the next course of action is? I do hope someone on here will come along and be able to give you more guidance. Sending you positive thoughts x

User

Posted 04 Oct 2018 at 22:18

So have they stopped all treatment for the time being or is he still having the hormone injection? If he isn't having any active treatment, there will be fewer oncologist appointments and they may refer him on to another team or department for monitoring and support..

If the oncologist was hoping that the RM might have a suitable trial, there may be a good reason why radium 223 hasn't been offered; perhaps your dad has another medical issue that rules it out? You could ask dad to call his nurse specialist to ask.

Could the laparoscopy and colonoscopy be related to the RM request for further tests?

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

User

Posted 05 Oct 2018 at 06:47

Thanks for your replies.

Yes-Dad is still having his injections but thats it.

I guess these additional tests could very well be at the request of RM but Dad doesn’t seem to feel the same urgency I do to understand where all this is leading.

Clearly the chemo hasn‘t worked but I’d be bangling down doors to find out what was next. He was so relieved to finish the chemo, especially as he was going through all that with no positive outcome, and was really buoyant and optimistic about the RM referral but since then and with all this uncertainty his mood had changed and he’s definitely low and clearly expecting the worst.

I don’t want to keep pressuring him into making calls and chasing tesults as he‘s clearly going through so much at it is but it’s so frustrating when you can’t just pick up the phone yourself and speak with his primary care tram...or can I? Are they allowed to speak to me?

i’m also really keen to hear from anyone on here who has had docetaxil and it hasn’t worked-what happens next? From the posts I’ve read most seem to have gained some benefit and I’m perplexed as to why Dad responded so well to all his other lines of treatment beforehand yet the chemo has done nothing.

Sorry for the long post again (!)

Thanks for reading.

User

Posted 05 Oct 2018 at 13:20

It may be that dad is aware that there are no further treatments and is trying to protect you. Fingers crossed there is a suitable trial but some of the current ones have very rigid criteria so he may not be suitable.

His response to the different hormone treatments has not been sustained over long periods and it seems from what you have said that he acquired new mets while on HT? Unfortunately, some prostate cancers are much more persistent and determined than others.

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

User

Posted 05 Oct 2018 at 20:37

Hi, I am a little puzzled about everything going quiet. I had Docetaxel and Enzalutimide as well which did not work. However, there is still Cabazitaxel to try. Neither of the previous two treatments disbar you from having this.

If the RM are going to see if you can get on a trial, it seems most of the new trials target specific gene defects. In order to check what yours are, they need to have access to your prostate biopsy tissue. To do so you would need to sign consent forms. If this has not happened, you need to press them to find out what they are planning.

Assuming your dad has not told them he does not want any more treatment, you need to be proactive. It took about 7 weeks to get the results back and placed in a trial. Speak to your dad, and if both in agreement that doing nothing is not an option, push as hard as you can.

User

Posted 05 Oct 2018 at 22:02

Hi Orm - thanks so much for your reply.

I totally agree with you and feel as though none of this is making sense.

It's hard to know what conversations have taken place between my Dad and his oncologist but I feel it's highly unlikely that Dad would not want to pursue further treatment and if that was the case I'd know about it.

It really feels as though his team at the hospital have hit a brick wall and don't know what to do next and when there are clearly other treatments available I can't understand why they've gone straight down the trials route!

My gut is telling me that if they are carrying out a colonoscopy and a gastroscopy (apologies but I stated the wrong procedure earlier in this thread!) it's because they are obviously worried that there is possible organ spread but I can't fathom why they would think this just based on his high PSA and why the RM would request such procedures.

The only thing that is sticking in my mind which I didn't mention earlier is that a while back now Dad's Onco asked whether he's ever had Diverticulitis so maybe it's link to that?

I guess we are going to have to wait and see what comes out of these explorations next week but I feel there needs to be some firm talking to Dad's Oncologist in order to get a clearer picture of where we stand and how we get things moving - time is of the essence and with a PSA that never really got above 5 to suddenly be in the 800's is a major worry.

Thanks for reading...

Boo

User

Posted 10 Oct 2018 at 16:34

Hi there

Just thought I'd update you on where things are at with my Dad..

He had his colonoscopy and gastroscopy yesterday and thankfully they didn't find anything of concern. Apparently these tests were requested by the Royal Marsden so hopefully we're one step closer to getting him on a trial....fingers crossed things start to move in the right direction now!

Boo

User

Posted 15 Jan 2019 at 14:09

Hi everyone

Happy New Year!

I haven't posted for a while now as it's been a gruelling 4 months plus of waiting this end to find out where we go next with my Dad's treatment.

Just to recap:

- Dad had 8 cycles of Docetaxil last year for his advanced prostrate cancer but the treatment was stopped in August due to his ever increasing PSA.

- Oncologist decided to refer him to Royal Marsden for suitable drugs trials (the back and forth on this took months due to the request for further MRI's, tests and the time it takes to get this info passed from one arm of the NHS to the other!!!)

- Finally got things underway with Royal Marsden just before Christmas but they called to say they were really concerned by Dad's latest tumour cell count in his blood and that whilst they looked into possible trials for him they wanted him to start chemo again - this time having Cabotaxil. Dad's cancer has spread to further bone mass (not sure of where and extent) but no organs or lymph nodes.

- He was therefore referred back to his original Oncologist who felt that he would be better off having Radium 223 rather than Cabotaxil due to the ineffectiveness of the Docetaxil (soooooo hard to know who's lead to follow when you get conflicting opinions from various Oncologists!) He's still having appointments with Royal Marsden and starts his Radium 223 treatment locally next week (6 cycles).

So my question(s) to all of you is...what can we expect from Radium 223? Is it effective? Will it have the desired effect and bring his PSA down long term?

I'd also LOVE to hear from anyone who had no real success with Docetaxil but then went on the have a totally different experience with Cabotaxil?

Look forward to hearing all your wonderful pearls of wisdom..!

Thanks

Boo x

User

Posted 20 Jun 2019 at 21:57

Hi everyone

It's been about 6 months since my last post and Dad is now coming to end of his current treatment.

Just to recap - he's had 5 cycles of Radium 223 (started in Jan 19) and is waiting on his 6th but they have delayed it by a couple of weeks as his platelets are low.

In terms of the Radium 223, he seems to have tolerated it pretty well but has required 2 blood transfusions along the way.

My biggest concerns have been his fatigue, lack of appetite and weight loss - for a man who's always loved his food it's so heart breaking to see him struggle to find things he fancies to eat on a daily basis. He's been referred to a dietician in a couple of weeks time so I hope this may help but I fear after all the chemo he had this side effect of the treatment/illness is here to stay.

Aside for the above there is also the obvious and very scary question that I keep trying to put out of mind of 'where do we go from here?' Hopefully he will be able to have the final Radium 223 cycle and then there will be the follow up scans to check for any further bone progression (can't bring myself to think about the worst case scenario) but I've got that all too familiar feeling that one door is closing, treatment wise, and I'm unsure and too scared to think about what door will open next, if any.

Dad found chemo pretty hard first time round (although his side effects were minimal compared to some) and as it was unsuccessful in keeping his PSA at bay he's pretty sceptical. The last thing anyone wants is to undergo chemo, with the finish line in sight, to be told it's not working and I'm scared he will be reluctant to go down that road again. Also, as he's lost a lot of weight and been knocked sideways by all the treatment I worry that he won't be physically and mentally strong enough to endure it, even if other chemo is 'on the table'.

I guess my question to all of you out there is...where do we go next?

If Dad has his scans and they is some further bone spread but no sign of any organ or tissue spread then what's next?

I'd also still LOVE to hear from anyone who had no real success with Docetaxil but then went on the have a totally different experience with Cabotaxil or other chemo drugs?

Sorry for all the questions but there must be someone out there who's riding the same wave as me and can shed some light on further treatment options.

Any answers or advice would be so greatly received.

Thanks for reading.

Boo x

User

Posted 21 Jun 2019 at 14:55

Hey Boo,

Your situation is not dissimilar to my fathers. He did poorly on docetaxel. He didn't get a great PSA response and he also suffered badly from side effects. He refuses cabazitaxel on that basis.

He did very well on lutetium for a period of about 15 months, this taking his PSA down from 131 ng/ml down to the lowest it has been for years at 3.7 ng/ml (it was 1,943 ng/ml when first diagnosed in 2010).

He has only been on monthly degarelix since his last cycle of lutetium that was given in March 2018.

His PSA has now risen again to 500 ng/ml and it looks like there are no good options left.

Lutetium is great if you can get it (assuming your father's tumours express PSMA). It's in trial now within the UK so perhaps he can access via that route? Failing that you're looking at a very spendy £ 8 - 10 K per cycle. He'd likely need at least 4 cycles.

Hope this helps.

Cheers

Jonathan.

User

Posted 21 Jun 2019 at 18:36

You could ask about Stilboestrol, which is less popular these days but produces remarkable results for some men. Also we do have members who struggled with docataxel but have had a good response to Cabz so it may still be worth trying - and being a different chemo, he may not have the same reaction as before.

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

User

Posted 21 Jun 2019 at 21:37

Thanks so much for your replies Jonathan and LynEyre - both made for interesting reading and I will be sure to look into your suggestions.

In terms of Cabz...Dad's Onco said this was closely linked to Docataxel and he was likely to get the same outcome eg: no drop in PSA - is this right??

Boo

User

Posted 14 Aug 2019 at 15:46

Hi Everyone

Hope you are all keeping well.

So it's heart breaking news yet again this end.

Dad saw his Onco today and it would appear that the radium 223 (he's completed all 6 cycles) hasn't worked and the cancer has spread - he now has further bone mets including spine and skull. His PSA is currently at 2025.

The next step is to head to the Royal Marsden (he has an appointment next week) but I'm naturally beside myself with worry as to what they will offer him - if anything. I think his assigned local Onco is baffled as to why we're not seeing any positive results from treatment, as now both the Docetaxil and Radium 223 haven't worked, and he's said that if Royal Marsden don't have anything to offer him then it will be further chemo - Cabitaxil.

He's exhausted all the time and struggling to find anything he can or fancies eating without feeling nauseous (which is soooo painful to watch as my Dad used to LOVE his food) and I'm unsure as to whether that's a side effect of all the treatment or the cancer itself. This in turn has meant that he's lost weight and of course that only adds to the lethargy and compounds the tiredness. The only good thing is he's currently in very little pain but I'm unsure as to how long that will last.

My question to all of you out there is what can we expect next in terms of treatment?

Anyone also got any advice on what might help his appetite - steroids perhaps?

I'd love to hear your thoughts/experiences and from anyone who's currently going through the same hell.

It would also be great to hear from anyone who's currently at the Royal Marsden undergoing trials/treatment.

Thanks so much...

Boo x

User

Posted 14 Aug 2019 at 16:12

Stilboestrol or a steroid might still be worth a try, cabazitaxel if they are willing to offer it. There will come a time when they start talking about palliative care referrals though - have you had those kinds of conversations as a family about where / how dad would want to be cared for? It is usually easier to have the conversation early rather than wait until he is more poorly, when introducing the subject can be frightening.

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

User

Posted 14 Aug 2019 at 16:13

Re appetite, have you asked about protein shakes; these may be available from the GP on prescription.

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

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