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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

 

 

 
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