Laptop crashed last night so I couldn't update, sorry to worry everybody. OK so psa up to 66 , not the news we wanted to hear. I suppose in the back of my mind knowing how high Trevor's initial psa was and how quickly it had dropped could it climb back just as fast.?
Dr T seemed at a loss with no particular plan of action, to be fair we have always known that we don't have many options, she is adopting a wait and see , she wanted to do a 12 week review but I disagreed and she has moved to 8 weeks. Steroids were suggested but Trevor has been on steroids for his asthma for around 2 months now and we still had the rise. She also mentioned new drugs but did not name any so I am presuming Abi and Enza, she is reviewing his other medication to see if there are contraindications with these. So for now we wait and see what happens in 8 weeks, I have never been very good at the waiting game.
It is really difficult for me to ask direct questions with Trevor there, he has refused to talk about the cancer from the word go and I accept that is how he deals with it. Honestly I felt Dr T was fobbing us off and was in a way saying that's the end of the road. Deep down I think Trevor thought the same thing.
Its time like these that we need TG to pop up and say something very sensible and meaningful. Like pull your socks up girl and soldier on. Life is for Living.
Bri I have fingers crossed for you, Steve psa anxiety is called squeaky bum time.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-embarassed.gif and Si (what holiday) I thought you had just been.
Mo, 3 RED cushions in the lounge and large red rug in the kitchen covered in Cocker Spanielshttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-embarassed.gif
Thanks to all for thinking of us. X
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
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Hi Julie,
Sorry to hear about Trevor's PSA rise, but in your world 60 is a drop in the ocean. As long as Trevor feels good then bugger the PSA.
Cant wait to see the new designs battleship grey sounds ........... well nice http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif
Just finished my 3 week 1 day HT holiday and i felt magic, Nothttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif will have to keep a close eye on the dates in future cant start feeding Mr cancer.
We all send our love and the girls send there love to the dogs, Sorryhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif they want to know how many you have now.
Si xx
Don't deny the diagnosis; try to defy the verdict |
User
I wouldn't panic yet, there is always the possibility that this rise is a blip and is the aftermath of that missed infusion in June.
I have been trying to search back to see which member it was that posted with similar complications to Trevor but it is hard to search for anything specific on this new platform if the posts are probably in the archive section. I will keep searching. Fact is hon, if they said he could have Abby-tabby but there is a risk it will make his heart worse, is that really a risk? I understand why medics might be averse to trying something that could have consequences for other ailments but weighed against the risk of doing nothing, it might be a no-brainer.
Did you see the wonderful nurse while you were there? Did she have any words of wisdom?
Even if I am talking bo****ks about the missed Zometa, perhaps telling Trevor that is probably all it is might just give him a bit of peace of mind.
Battleship grey and dog hair sounds lovely x
Edited by member 07 Sep 2014 at 11:53
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"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Hi Julie
Yes that rise is a worry, it's probably proportional to our worry at reaching 5 as John's PSA tends to be low and Trevor's was massive. Getting it checked in two months is a good idea though 6 weeks would have been better. I can't understand why anyone would consider leaving that for 3 months. Well done to you for fighting that battle and winning. I think they will check his various meds and then decide what the next step is, it's not going to be simple with someone with Trevor's medical history.
I doubt they will do nothing at all, has he even had Casodex added yet? Sorry for not remembering. John remains on Stillbestrill so that's another possibility.
Loving the sounds of battleship grey, it goes great with brown lino from memory.....
Big hugs Julie
Love Allison xxxx
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Hi SS the rise in Trevor's PSA is not what you wanted or needed to see, however it is still good by comparison. The other drugs might actually be some of the older HTs, Like Lyn I have been trying to find the name of one I am thinking of ..Devonmaid's John is on it and doing well. I suspect Abby may be a risky option it has a whole list of meds that are contraindicated and some of them are everyday drugs ike statins. My answer to that though is are the statins being taken for a life threatening illness or just as a precaution in which case ditch them and have the Abby. I was very surprised when I watched the last Snuffy video about Abbi at how many doctors and pharmacists are unaware of this. There is now a lot of evidence that shows it is a brilliant drug and can have amazing results for those it suits.
Enza also has some issues it is classed as a "chemo" drug by hospitals and nurses do not handle it without gloves given in a little pill pot to swallow without touching (a feat in itself whe each dose is 4 horse tablets) etc. The evidence for that drug seems to be that it is being prescribed too far down the line and should be given sooner. If you are worried about pushing for answers because of T ask to have a quiet word on your own.
Catch up before Saturday my firend xxxx
Mo
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Lyn thanks for reminding me of the missed infusion, I had forgotten about that. As you say it may have nothing to do with the rise but Trevor was immediately lifted when I mentioned it.
Our lovely urology Nurse only works Tue-Thur and our appointments have been moved to Fri so we didn't see her but I have left a message saying that I want Ts alp and T levels phoned over. That was Mon I left the message and so far nothing, so I will be ringing again in the morning. Thanks to PRO-MO for the suggestion.
Alison, Nanny, I love it. Casodex was added last year so we have already used that option.
News front the ride on is now fixed again, it spends more time at the pig farm (that's where our ride on fixer man lives) than it does in our barn.
I have just realised where the silver grey inspiration came from, I just caught sight of my self in the mirror, OH NO it's my hair.
Love to all as always.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
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Have you not heard of hair dye?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Well here we are nearly that time of year again, the nights are drawing in and I thought today maybe I should put up the xmas tree. I know what you are all thinking (is she mad it's only Oct) the truth is xmas makes me feel good. It reminds me of my childhood when everything was ok with the world, magical times. OK thinking back they weren't always that magical there was the time that my Dad left the Turkey in a phone box on Xmas Eve (he had imbibed a little too much Xmas cheer) and we ended up with Mum not talking to Dad and a fry up for xmas dinner. Yep magical. So that's it the tree is going up.
We had the annual visit from Trevor's American and Canadian cousins yesterday, know I don't want you to think that I don't enjoy there visits on the contrary it's lovely to see them but they do seem to have a very maudlin preoccupation with death. The whole 5 hr visit was spent telling us who had died, who is just about to die and who has taken out a funeral pre-payment plan, lets just say that tact isn't there middle name. Of course to some this would sound very depressing until you picture the scene of 5 very elderly black ladies sipping tea , eating Ginger cake and occasionally farting. At one point I thought they were going to break into song and give the old reggae rendition of HIM KICKY BUCKET.
There is a point to this story apparently 2 of Trevor's 5 half brothers have died of pca so this is not looking good for the genetics. More reason for the boys (Trevor has 5 sons ) to get early testing. Trevor never met them so he wasn't upset just shocked. Yesterdays visit could explain Trevor's reaction today. He had his appointment for his Zometa and came back visibly shaking apparently he was kept waiting longer than usual and this probably gave him too much time to think. Our lovely Urology Nurse called him into a side room (this isn't normal practise) she said she wanted to speak to him privately , he assumed she was going to give him bad news and nearly fainted. In fact it was to discuss my request for ALP and Testosterone to be added to his next psa test. She rung tonight to check if was OK, so she was obviously worried about him.
So to back track when I rang to get Testosterone and ALP level results his ALP is 73, I know this is within normal limits (here I go) but it still seems on the higher side of normal , or is that me just over worrying. Answers on a postcard please.
Apparently T levels are not routinely checked and when I asked why they seemed confused as to why I was asking. It is going to be added to our next psa test . I can't believe that it is going to be added just because I have requested it. When I spoke to our Urology Nurse tonight she had read Trevor's notes and it seems the next course of action is to drop Bicalutamide and then this can be reintroduced at a later date. I am needing help understanding this guys so again answers on a postcard it seems to me she has rumaged around in the tool box and come up with a screwdriver.
Next visit on Nov 7th
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
User
Hi Julie and Trevor,
Sounds like that was a very long five hours! : )
I can't advise about treatment here, but I can add to your comments about requesting various tests to be added every time Trevor has a PSA blood request form.
For ages now I've had to ask for Testosterone and Bone profile to be added to the routine PSA test list.of bloods.
Why are these nurses/doctors always so surprised WHY we ask?
I would say I AM SURPRISED THAT THEY ARE SO SURPRISED.
Isn't it vital that we watch testosterone along with PSA, and need to see the Bone Profile results to check our ALP?
I agree with you totally. It's a good thing we take the initiative and tell them exactly what we want on those request forms, but isn't it a shame that we have to tell them in the first place?
All the best,
George
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Hi Julie,
Sounds like they want to give Trevor a break from Bicalutamide and its side effects for a while. Using the anti-androgen on an intermittent basis is not a bad idea. Eventually it starts to work against us & using on & off may postpone that happening. Others say stay on it as long as it works for us. It's just different opinions.
The serum T. level is often a bit higher when on Bicalutamide as it blocks , not stops.
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Thanks George and Rob for your replies, even though I have read a lot about the HT holidays this didn't seem such a wise choice when Trevor's psa was rising so rapidly. I suppose I was hoping for something to be added (not sure what) just some miracle cure at the bottom of the tool box but then I guess that's what we all want.
I am realistic about our situation , we have known from the start that our options are limited and it is weird to say that after the shock and tears at the start of our journey, for the last maybe 6mths we have had a strange calm acceptance of our situation, but then like all with our dx just maybe, just maybe there is some new wonder drug just around the corner, just maybe.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
User
Hi Julie and Trevor,
It's good that you have a 'calm acceptance' of the situation, but as long as you keep that very positive and defiant attitude you've always had, then there's is always hope too.
Allister often talks about 'what's next in the toolbox', and over the years there have been many amazing stories on here.
What works for one man might fail for another, and it seems that only through trial and error that those with metastatic cancer eventually find the one that actually gives massive improvement.
I suppose it will remain the same till the day tailored tailored treatment arrives, treatment based on the DNA of our cancer cells.
That certainly looks to be the way forward.
In the meantime, keep on doing what you're doing, because you do it WELL!
Warmest wishes,
George
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thank you all contributors - for making me cry - for making me smile;
I'm a mere 'newbie' and after reading the stories here, I feel humbled, my state is nothing compared to some of the stories here. So, you have indirectly helped me cope, for which my heartfelt thanks.
I think I have seen the very best of human nature, and now I realise how important is the effect on carers and family around me; I shall adjust my attitudes to be very careful to include the feelings of those close to me.
Lastly, thank you, all of you, for educating me a little bit, probably the most important lesson I have ever learned in Life.
Bless the lot of you, for I have seen courage.
Kindest regards, b0b
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Well it's nearly that time again we are off to see the Wizard tomorrow, my how time flies. Trevor has been down with his usual breathing difficulties for the last few days and is back on steroids this morning. I have to smile as our GP now asks me how many days I think he needs and would I like them reduced gradually or a abrupt stop. Who put me in charge.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-foot-in-mouth.gif
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
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Hope all goes well today Julie
Take care
Bri x
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NEVER LAUGH AT A LIVE DRAGON |
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Good Luck today Julie oh and Trevor http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-embarassed.gif
Si xx
Don't deny the diagnosis; try to defy the verdict |
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Thinking of you and Trevor my SS
I think the change in weather has affected a lot of people with respiratory issues, make you sure you stay snuggly warm xxx
Mo
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Same here, hope all goes well !
Fiona x