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Next Treatment Please

User
Posted 14 Jan 2019 at 21:37
Yaaaaaay ❤️❤️❤️❤️
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 14 Jan 2019 at 21:44

DM

Great news, lots of love and hugs.

Thanks Chris

User
Posted 14 Jan 2019 at 22:04
great news xxx

User
Posted 14 Jan 2019 at 22:26
Good news.xx
User
Posted 14 Jan 2019 at 22:37
Good news. My husband started it just before Christmas and so far so good. Hope it works for your husband.
User
Posted 15 Jan 2019 at 09:59

Hi, just picked up on this thread today. Id like to wish you best of luck with enzalutamide. my husband is just completing his first month of it. so far so good.

Susie

User
Posted 15 Jan 2019 at 22:41
Great news. Still on enzalutimide after 21 months so hope you get that return and more. Thinking of you both.
User
Posted 16 Jan 2019 at 06:53
Great news and fingers crossed

Bri xx

User
Posted 16 Jan 2019 at 08:17

Just wanted to mention a blood marker i hadn’t heard of before we started chemo called LDH (lactase dehydrogenase i think), a measure of tissue and muscle damage and this was particularly high. ALP had raised to 123 from 68 in five weeks and blood volume decreased again. I just hadnt seen mentione of LDH before on here (may have missed it).

I feel much better and am sleeping at last, full body bone scan yesterday, so we will have the full picture soon.

Thank you all for your support.

love Devonmaid xxx

User
Posted 16 Jan 2019 at 10:52

Hi Devonmaid, 

Just wanted to wish you both all the luck in the world with this next stage of treatment and hope that it really works well for him.

Steve x 

User
Posted 16 Jan 2019 at 14:27

.

Thanks Steve

bone scan results are in, hospital called to say extensive further spread in hips and pelvis,  multiple new mets in ribs, some in neck (though those are not new). Kind of them to call quickly as the scan was only done yesterday afternoon. Now offering lots of support, so obviously feeling they were a little mean to us! anyway none of that matter now as we are getting the help we need now. We were advised to stop taking John’s pantaprazole (stomach protector) but i cannot find anything on this in the literature, anyone know anything about this? Ive asked the question to the specialist nurse of course too.

devonmaid.

User
Posted 21 Jan 2019 at 21:56

I picked up the Enzalutimide today, what a pain as the pharmacy denied all knowledge and i had to go back after calling around. It had been there all the time so just the usual bodge. I hope future collections go more smoothly, its a pain finding a parking space. Anyway John decided it was too late to start today but will begin tomorrow. Not a day too soon I’d say.

Devonmaid 

User
Posted 22 Jan 2019 at 00:48
Aaaaaaarrrrrggggghhh!

Hopefully tomorrow is a better day x

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

User
Posted 22 Jan 2019 at 01:13
I'm with Lyn, Devonmaid. So frustrating for you, at a time when you least need it. I don't have a clue about how your prescription system works, but reading this makes me thank my lucky stars that our consultant or GP just writes them, and I just take them to our pharmacy and have them filled.

I do so hope that you see some effects from the Enzo quite quickly. We did with Abi last year, so I am crossing my fingers that it is the same for you.

User
Posted 27 Jan 2019 at 10:29

Well of course i sorted it all out and John started taking enza last tuesday. I’d say no change yet but its early days. We see the oncologist on Feb 4th for a review so next week i guess. on the plus side Indiana (Indy) John was born Friday lunchtime with me in attendance along with his  daddy. Can’t write much of a catch up due to the word processing issues on this site driving me nuts. Safe to say its a joyous weekend here though.

love Devonmaid 

User
Posted 28 Jan 2019 at 03:45

Wonderful news of the arrival of Indy, Devonmaid.  You must be exhausted, but so happy.  I hope John can meet the new addition (and namesake - is he chuffed at that?) very soon.  The grandchildren bring such joy, and are very effective at taking your mind of things, aren't they.

I hope things pickup a little for John before you see the oncologist next.  Will he have any blood tests before you go to that appointment?  If so, I'll be interested to hear how his LDH is going, as well as everything else of course.  I feel very in the dark about some of those blood tests - H's LDH was up from 272 to 688 on the last test, and we got the impression that it could have been due to a few different causes (none of which we can do anything about).

User
Posted 28 Jan 2019 at 21:39

Hi Teacups

Yes bloods this friday and LDH will be measured 644 last time so will be interested in that this time too. 

will let you know, we did go out today which was lovely, so nice to go out for a change.

Love Devonmaid xxxx

User
Posted 27 Apr 2019 at 09:21

Hello friends

i haven’t updated for a while as I’ve tended to tell our story on Kentish’s post but probably need to update this thread now. So John has been doing well on Enzalutimide, PSA now 12 and the LDH and ALP in normal range though red cells HB low and blood volume low as are white cells. John is extremely tired but we will take that thank you. 

However, he is currently languishing in hospital with sepsis. He is doing ok at the moment, so out of immediate danger. What happened was that I was away for work in Bradford and was stuck on the motorway but received a call from my daughter to say that she hadn’t had a responding text from her dad and had gone round to find him on the floor, having fallen four hours previously. He’d hit his head in the bathroom on falling, crawled out (unable to get up), eventually tried to pull himself up on the bed and had fallen backwards and hit his head on the wardrobe and just couldn’t get up again. She found him rather confused, got him into bed, gave him tea and some weetabix and called me. I called the GP who asked me to get someone to get him over there as we suspected a UTI. My other daughter did manage that and he was seen at around 6pm and given antibiotics for a UTI, he was still a bit confused at this point and obviously unwell. My daughter stayed until I got back at 10pm, and at this point he was still speaking to me, but I put the bins out and came back and he was shaking like a leaf, when that stopped I took his temp and it was 39.8, he was grimacing and unresponsive except for muttering along to five men apparently in the bedroom with us. I then called 111 who were amazing and sent a paramedic, who diagnosed sepsis after a few tests, bloods, BP etc, temp now over 40. Ambulance blue lights off to A&E and we spend the night and next day in there. He is now finally on a ward and much better, although he is still poorly. The UTI was so bad his blood was full of bacteria and frankly, I could smell it when I got back into the room after I put the bins out. I can only thank the much maligned 111 call operators and paramedics. And also I must admit that the horrendous delay on the M42 that kept me from home until 10pm probably saved his life as otherwise I’d have been asleep in the other room by then after a long day. He would not have been able to call me. What a day. Thank god for the current focus on sepsis too as the paramedic over ruled the call centre who tried to downgrade his priority 1 call. 

Phew!

User
Posted 27 Apr 2019 at 11:35
Oh Devonmaid

Don't know what to say but he is in the right place for now and hope it clears up quickly. I had wondered how you were doing so pleased to hear an update. My husband continues on Enzalutamide which has now been working for 5 months, longest anything has worked for so we keep hoping and only appointments every 2 months.

User
Posted 27 Apr 2019 at 13:38

DM

Sorry to hear of the situation but hopefully the best place to be at the moment. No doubt the SPC isn't helping. Big hugs to you both.

Thanks Chris

 
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