Plan B. radium plus dexamethasone

It's definitely a different approach Eleanor. You've got an Onco that thinks and doesn't just go by the same old, same old, treatment regime. It sounds good to me and gives me great hope for a positive outcome. Plus you still have Abi/Enzo when and if necessary.

Got 'em all crossed for you.

David

Hello Eleanor,

my (82 yr old G9 with bone mets) husband just had 1st shot of Radium 223 last Thursday in Seattle.He had no noticeable side effects and his blood work will be done weekly for total 6 times hopefully.

He has been very fatigued since November because of medications. Level 1 pain around holidays but gone now (maybeXgeva and Xofigo working now

I hope his signature will post with this quick reply . I have read a lot on this worthwhile website but am a novice at posting. He has a Radiation oncologist and general Medical (not prostate) oncologist.

Take care and I hope treatment goes well for David.
Anniee

The comfort blanket and a bottle of gin is on its way I will even lend my red dressing gown if you need it ( just shout ). From one very frazzled wife to another ! Keep your chin up Chuck.

We have had rise on rise with the PSA for what seems like ever in fact probably well over a year, I have just updated our bio if you want to take a look , this disease is a erm just trying to find the right words . The phrase Head Cluck comes to mind but I won't say that just in case I get Nominated 😂

I am just about to update and my advise is keep on trucking because 4 weeks ago I thought we were Over and Out and the difference a few weeks has made has been incredible.

BFN

Julie X

Eleanor, hide the bottle in next door's recycling bin and give the dexa a little more time, fat lady isn't singing yet because she is behind the sofa with the gin

And my story goes on, now PSA down to 3.74 with no enzo or anything else at ,east until March check -up sonalready have a year's respite with dexomethosone. As julie says things get bad and then a few weeks on they can improve. Uncertain paths but stick in there.

Plan B continues to go awry!

Bone pain increasing, sleepless nights and numb legs so on Saturday we rang various people who rang various people who got the message confused and, 7 hours after the original phone call, upgraded us to a blue-light emergency. Cue excited neighbours, irritated ambulance drivers and, eventually, a morphine prescription which did the trick as far as the bone pain was concerned but it seems to have taken my OH's brain away and left a small damp ball of cotton wool in its place.

Bit better Sunday - up to two small damp balls (I've just realised that I'm heading for oooo-er-Matron / Carry on up the Prostate territory here so will stop that metaphor immediately!) and bone pain more manageable.

Follow up calls from lovely hospice nurse and from the cancer hospital and then from the onco today wanting my OH to go in overnight and have another MRI scan tomorrow. Unsurprisingly he declined the offer so he's been told to up the Dexamethasone dose from 0.5 to 4mg immediately, and take another 4mg tomorrow morning. Then off for the scan in the afternoon.

And even more excitement from my brother (who has Amyloidosis Myeloma and a host of complications) who collapsed yesterday and ended up in a chair in A&E most of the night. Back home now and ok. I've passed the remains of the gin bottle on to my sister-in-law.

Oh to be bored witless, sitting around in a fog of tedium with nothing to do except watch the rain and pluck stray nostril hair.

OMG Eleanor, plucking stray nostril hair, that is so 19th century!

What you need is a personal trimmer. Mrs_C has one and uses it to remove the hairy bits from my ears, trim my eyebrows but only after she's ripped out the grey ones with tweezers (she's got some 19C in her) and then tackles my nasal hair.

Now the first two of these treatments I can tolerate but then she gets a strange look in her eyes. Mrs_C can be quite scary. I've noticed that when she gets to my nasal hair she starts to give a passable resemblance to Laurence Olivier in Marathon Man. Come to think of it I've never seen Mrs_C and Laurence Olivier in the same room, could they be one and the same? Anyway, Mrs_C seems to think my nasal hair is rooted some two inches up my nostrils and proceeds to attack the source of the problem with a vengeance. I get worried that she's going to perform a sinus widening operation without the use of anesthetic and shrink back in my chair. Mrs_C growls "come here you, sit still, it won't hurt". At least, so far, she hasn't said "Is it Safe?".

Edited by member 06 Feb 2017 at 18:15  | Reason: Not specified

Strikes me you need the occasional reign of terror to keep you in check! And it's probably better than her having a passing resemblance to John Hurt in Elephant Man.

Ex

Too late! I am already using her as a role model. If I can work out how to customise my profile picture I'll post a shot of my hairy legs - grown in her honour.

But seriously, you lot are looking after me beautifully Lyn...makes such a massive difference.

E

x

So happy to read this, its almost a mirage image of Trevor's last month ( minus the nose hair) . Trevor has just had infusion no 3 today .

So so happy for you both ! Yay let's break out the gin!

BFN

Julie X

As Tony the Tiger says:

Greaaaat!

Hi Eleanor

I've finally been able to get back on to the website properly.  For some reason it just wouldn't accept my password.  Anyway - Ive caught up properly now on your horrible roller coaster from the last couple of weeks. I'm so glad things have calmed down a bit now - you have both really been through the mill. Hope the gin is taking the edge off ! x

Eleanor,

I'm so sorry to hear of hubby's continuing troubles. Re the sickness, I doubt there is anything I'm going to say that won't already have been tried, but, just in case:

1. I take Ondansetron for three days per 21 day chemo cycle. I've never felt sick. It's a bar steward at binding you up but a combination of Laxido and Dulcolax has sorted out that problem.

2. I was given Metoclopramide to take as a backup anti sickness if needed. I've never had to take one so I've no idea how good they are or aren't.

I really hope the medics manage to sort this for hubby, he deserves to have some good days to counter balance the crap ones.

David

Oh Eleanor this all sounds horribly familiar! Have you tried phoning the hospice nurse yourself? I was driven to do this while David was at the hospital having his blood and the nurse arranged to come and visit. He (the nurse) looked at the whole situation and did a major rejig of the medication. A regular double dose of metaclopramide and normacol sorted the constipation, nausea and lack of appetite. Along with an increased dose of MST David was a different person within a couple of days.

Once you've got him sorted you could take up knitting the long hairs up into a handy blanket?

Take care and big hugs

Rosy xx