Update on Dad and Xtandi

Hi

Just thought I would post an update on my Dad as I was very grateful for your responses on my first, and so far only post, dated 9th April 2015.

Sadly, Dad continues to go downhill. In the last week he has closed down his company, sent his lease car back, cancelled a holiday in June and is trying to sort the financial side of things as his working days are well and truly over - a very different story from how he felt around 9 weeks ago when starting Xtandi. He is a shadow of himself, in such a short space of time.

He has been asked to attend an appointment next week with Radiology, to discuss radiotherapy treatment on his skull based tumour, which he doesn't seem keen on. He struggles to even walk upstairs, so is spending all of his time sitting, he's even started going to bed in the day which is unheard of. He can't face the side effects of the RT incase he has less energy than he does now, which is zero.

His bloods continue to get slowly worse. His haemaglobin estimation is now 86 (or 8.6 if working the other way) - his GP is trying to organise a blood transfusion. His new blood tests say he has Hyperchromic macrocyctic anaemia and anisocytosis? - I'm not altogether sure what they mean though. Kidney function is becoming poorer, and testosterone continues to rise very slightly?

PSA drop has started to slow down, I'm guessing it will probably stop altogether over the next couple of months:

23rd Jan - 126ng (before starting Xtandi)
5th Mar - 63ng (10 days after starting Xtandi)
25th Mar - 27ng (a month after starting Xtandi)
1st Apr - 26ng
27th Apr - 23ng

I realise you all neither know me or my Dad, but I suppose I just need to get it out there, and tell someone what's going on. I had some really supportive comments on my last post and didn't want to disappear off into the night without filling those, who were kind enough to comment last time, in on where we currently stand.

Radiology appt on 6th and Oncology appt on 12th, which I am attending too. Maybe I'll know a bit more then.

Thanks for reading x

Thank you Michael

My thoughts and prayers are with you and your Dad. Don't give up hope. Even if he has lost hope he needs you to carry the torch. God bless.

Radiation-induced fatigue is a symptom of long courses of radiation. When used palliatively, often with a single treatment, it should not deplete his energy. In fact, it should make him feel a whole lot better by providing pain relief.

- Allen

Your Dad is not alone, the Xtantdi did nothing to help Dave with his cancer either. Daves platelets are at 55 and hemaglobin is at 74. This after trying the xofigio only 4 treatments and we can't go on with any more because of the bloodwork. But I honestly feel it all started with xtandi even though Dave was only on it for 2 months. Dave gets up at 7:45 he is napping by 12:30 until 4 ish and lateley is in bed just after 10 . For us its the breathlessness , he can not do do even the simplest of things. He is only 64 ! I try hard to stay positive and keep our lives sort of normal if you can call this normal. That's all any of us can really do ! Prayers for you both .

Thank you Jim - really touched by your message.

Sue, yes I fully understand. My Dad is 63 and his daily routine sounds almost identical to your Daves. I know my parents lives are a far cry from what they were, and changing weekly. Dad isn't so much breathless but legs like lead. He says he is zapped of energy like when you have the flu - you think you'll get up and make yourself a coffee but by the time you get to the kitchen you are so tired you just go back and sit down. He feels that even eating is an effort.

The palliative care nurse has just been round to see him and she is fiddling around with pain meds, to make sure he is getting the best relief he can. Just heading over to see him so he can give me a full rundown on the visit.

Thank you for your continued support

Hero,
You are also a hero. Your Dad is so fortunate to have your loving support. PC is so hard on all of us. It is agonizing to watch the people you love be in pain with very little hope. I wish you the best and will pray for a treatment option for your dad that gives him back some qol.
Beth n Gary

Thank you so much for your messages of support. It can be very hard, having no one to talk to. Friends will ask "how is your Dad?" but it can be very hard to give a brief summary, so you end up saying virtually nothing at all - "He's ok, not too bad", that sort of thing, when all you want to do is have a discussion with someone who knows exactly what you are talking about and understands the ups and downs that this disease brings.

Dad isn't to have a blood transfusion until his haemaglobin goes below 80, which probably won't be long now really anyway. It dropped from 99 to 84 in 27 days.

He visited Radiology today, he won't be having radiotherapy. The specialist said there was no point whilst the Xtandi was working, as it would likely be shrinking the tumour, but that once it stopped working, they would rethink then.

Gastro team tomorrow, which I think will be a pointless visit, purely because they want to discuss a colonoscopy and Dad doesn't want it. He's doesn't feel well enough to go through the preparation, and it's unlike him to admit that he's 'not well', he usually says 'I'm fine, really good' when you ask him how he is.

I think he is just utterly fed up quite honestly, fed up of telling the same story over and over to different people every day, whether it doctors, nurses, or insurance companies, banks etc etc.

Thank you again for your kind words - it really means a lot to me

Di

Hi My Hero;
Yes I hear where you are coming from . What do we tell people sometimes when I know people ask and its not because they are the kind of people who really give a rats blank I will be frankly honest and it shuts them up because what else could they say! We have run the questions over and over again usually at pallitive care on a scale of 1-10 and it is hard to keep on trying to live life on a normal level. But somehow we plug along as do your parents. It ain't easy but we both say alot of things in life are not. The leg feeling has plagued Dave as well and the Xofigio really did help the leg problems. Tomorrow we have oncologist apt plus the oncologist wants a ct scan . We want answers , we want a end to this breathlessness so Dave can walk around our yard. We will ask or tell him Dave needs a blood transfusion because this breathlessness is not giving him any QOL..
2 years ago to the day we were in the same place being told that the cancer has spread outside the prostate and Dave couldn't have a prostectomy or radiation treatments . So like your Dad Dave to soldiers on !

Dave had those sore legs even going back to 2013 when he did the prostvac drug trial.This breathlessness has been going on for evet as well. I just postec over on my Sue Saddened Wife and that updates our oncologist appointment today

So very sorry about the broken hip ! Has your Dad had any bone scans previous to the break? Even a ct would show if Xtantdi is doing any good. Thought and wishes for a great recovery. 😊

Sorry to hear about your Dad. Hopefully the day 3 not feeling well a result of post surgery. Healthy people usually have day 2 as a not so good day. Dave is not eating well but I have him on 2 boost drinks with extra protein. He never was a breakfast eater but will have a bowl of oatmeal in the morning. The blood transfusion will hopefully perk him up.
Dave had a fall in the garage last week, thankfully didn't break anything but bruised his arm badly as well as his ego. For him I am hoping they will tranfuse soon because he is so dizzy from the low blood . Dave is very independent as well and it breaks my heart to see him not able to do the simplest of things.
Well take care , hope today is a better day!💙💙💙

Dad has had radiation to bone mets spine, shoulder, hip,and leg. Not at all well at the moment but we were told he would get worse before getting better. he is due to have a bone infusion on the 30th June. Still having problems eating, mobility is poor. Has a lot of pain which hopefully the radiation will help with.

Best wishes to you all