"Sue Saddened Wife" Continuation Thread

3-BP????

\Is that the Phase 1 Trial you alluded to earlier?

Mel

We have to be honest here . The drugs are the hope givers and we all cling to a the idea of something , anything working. I know for Dave I am desperate and even with drugs the extended life benifits are not that great 3 mths for alot of them. But that three months is more time than what was there the day before. I think some things for PC are being flogged through probably with out enough testings. Right now with all thats going on with Dave how do you pinpoint cause . Fatigue from low hemoglobin, Hydromorph pills, other pills, residual from xofigio ? I do know that some drugs cause instant reaction like Xtantdi. Weight loss, fatigue, and how do we know the internal damages? I know that they keep telling us that men live longer lives with PC but do they? Are we really living? For us that prognosis is a grim reminder that every treatment is really just a moment that we can slow down progression.

We are at the hospital were Dave is getting a blood transfusion. The radiologist didn't think the pain In shoulder blade or upper arm should be zapped. His thinking it would bring bone marrow and platelets lower . Long day getting a transfusion by the time tbey cross and match. Dave bends the truth now when they ask him how he is because he doesn't want to be written off living. He says he hardly naps, doesn't need help with day to day. Yet he needs me to help just getting dressed , showered, and every thing else . It just takes so less time when I help and less stress on him.
Any ways thats our day . Wed is bloodwork , Thurs is home care . Unless something crops up . Sue 🌞

Sure hoping Dave gets the results needed from the transfusion. Let us know when you can how he's doing.
You need to get some much needed rest whenever you can, too.
Thinking of you both,
Susan

Guess they do expect a pretty quick reaction if they're testing so soon after the transfusion. I like your thought on the donor blood, Sue, made me smile! Good news to hear it made him feel better. That makes you feel better, too.
Have a good night,
Susan

Glad to see there's some improvement in Dave, Sue. I wish you well on the teleconference - it's great your neighbor will be there with you. Looking forward to seeing what happens and what they're going to do to help Dave!
I em'd Q and last heard from him a week ago - he seems well and is tolerating the Xofigo pretty well. He says his bloodwork is good. I do owe him a reply.

Don hasn't been doing well. He's lost 10#'s since chemo on 5/29. He's very weak and has slept more hours than he's been awake. It's been a very rough week here. Today things seem to be turning around - his appetite is coming back, he's only napped an hour and he's looking forward. We got the lab results from last Friday and were pretty disappointed to see his PSA has gone from 13.68 to 38.84 in just over 9 weeks. Now what...next Fridays tests (CT Combo & labs) will tell. Am I worried? Absofreakinlutely. Thats a word, right?

Wishing everyone well,
Susan

Well, Carol, just do what the rest of us here do - we ignore that kind of talk. Now I know some will not agree and thats ok. But for my husband and I, thats a choice we make. Not sure what will happen but whatever it is, we'll deal with it in the best way we know how. We have to go about living because that is what's happening right now. A person can live in fear or they can live looking forward to each day until they no longer do. And that is something we've talked about and agree upon.

I recently referred to chemo as "Healing Poison" but I've changed my tune on the "Healing" part! I know it works well for some, but we don't seem to be getting those results in our house. Do I know what shape he would be in if he hadn't had chemo? I do not. I only have today to go by.

So, fight with all you've got? Absofreakinlutely!!! (Please feel free to use that word frequently ;-)
And we all together will fight with you - you can count on it!

2005 Husband dx at 63 yo Gleason 4+3
2006 LRP First post surgery PSA 11.8 Stage IV Start Lupron
2010-2014 Casodex, Provenge, Nilandron, Zytiga, Orchiectomy, Xtandi.
PSA cont rise. Spot on spine & enlarged lymph nodes.
2014 Xgeva & Taxotare
10/31/2014 Last Taxotare due to SE’s PSA was 14.82 now 1.3
2/27/15 PSA 10.48
3/20/15 PSA 13.68 Multiple lesions found in liver
3/27/15 Start Jevtana w prednisone Neulasta 24 hrs after chemo
4/17/15 2nd Jevtana Finally The Great Constipation resolved
5/08/15 3rd Jevtana
5/29/15 4th Jevtana PSA 38.84

Hi all,
I haven't posted lately, but still reading the threads. I am so saddened to hear that chemo has been difficult for your guys, and same for Gary. Knocked him back for several days but he's feeling better this weekend. Carol, Gary did good with zytiga first go round, but did nothing for him second time round. Have you looked into clinical trials for Steve. Don't give up! He's feeling too good to allow the docs to say we're done treating him.
Sue Susan and Krissy...think of you often and sending cyber hugs.
Beth

Good Morning;
Well new week for all of us. Lets hope its a good one for every one.Today is our only day off. Tomorrow we have a Dr appointment at 8:15 so will need to hit the road for 6:15 .We must be seeing an amazing Dr as he is even coming in early to see Dave . Then wed we now have bloodwork as a standing order , Thurs is the Teleconference Friday back to Kingstson for palliative care appt at least we won't need to be on the road till 9:30.
Dave himself was in alot of bone pain for pretty much close to a week. The worst has been in the groin and it stops him cold. Just getting up from a sitting position at times has been excruciating. .I hope palliative will come up with better pain control. Last week at radiation oncologist he didn't want to use radiation because of the risk of lowering the platelets and hemaglobin. So how they can deal with pain could prove interesting.? I know the blood transfusion did help imensly.
Susan, how is Don feeling now? Hoping he is feeling better! My friend in the States husband may get his 28th jevtanta treatment today and that is the longest for using that chemo on record. When you find the treatment that works why stop? They know at some point that it may not be able to go forward with it and the week of getting the chemo was not fun.His oncologist did the treatment every 4 weeks instead of 3 so there was a longer recovery period in between treatments.
My legal department, neighbor across the street has done up the most professional presentation to the reveiw committe and at least on Thurs that will be one less thing to worry about. I just can't wait untill its the nurse practitioner turn because from what I see there , missing labs , missing visit entry? Then the first lab Dave had with her the hemoglobin was at the highest point which can indicate tumour and also cause Dvt , I the bloodwok she did the hemoglobin was 4 points over the top and Daves blood should have been monitored wuth just a simple inr.That could have prevented the Dvt that came close to being a death cause. Then when she gave Dave his psa reading she told him it was 8 when in fact it was 80.So obviously she didn't know how to read lab work. Well I guess I better get off here and begin my day , rain, good day for inside catch up .

Well just going to get Dave up soon as we go for pallitive care appointment. They won't do blood transfusion today as hemoglobin is 85 .I guess they wait until you are so run down and for Dave breathless! The hemoglobin was at 97 just a week ago. So by next Wednesday where will it be? I absolutely hate this appointment and if he starts talking about Dave dying as the focal point of the appointment we will leave. This puts Dave in a down mood for says after. You already know your mortality why they think you need a constant reminder is beyond me. I need no reminders I see it every day in Dave. I do more and more for him every day .The pain has been pretty bad and I have given him more in break through pills.
We had the Teleconference yesterday and that went very well. This in regards to a Dr not putting a referal in with a dermatologist because of moles Dave had. We waited 5 months for an appointment that had not even been applied for. This Drvis the one in the same who told me he has never has a physical , no dre , and has no desire to know his own psa?? He also told me if he himself had done Daves physical no he wouldnt have done screening either. My poor husbands fate was signed and sealed at that clinic.It was crazy the care from there , When we ended up with him as a Dr he even admitted he had Dave as a pateint for 7 months and not once lookec at Daves previous medical record ,The records that show this patient has stage 4 metastic prostate cancer.suffered a terrible DVT . NOTHING!
He knew nothing about us even though nurse practitioner was in a colabrative office with that Dr? He is actually head honch and is in fact her boss. We didn't know this but when we got her for care she had only been licencend for 3 months she probably never had done a physical before. Thats why she never did the Dre?
Then all the paper work was going there bone, ct scans, radiation reports. Heart spealist reports, surgery report, oncologist of every kind, bloodwork and yet he knew nothing of Dave , it is scary really!!
Well will update later this week end.Have a good day every one and hope every one is doing well .Sue💙💙💙

I just wrote the best, the smartest and the funniest post ever then I did some darn thing and lost it all. Too mad at myself to write more good stuff right now. Dang. Will try again tomorrow.

Ok I'll say one thing: I care very much about everyone here. Goodnight!

Well, Sue, in the morning you head out for a very long day so here are my wishes for a productive and positive doctor appt. I know that seeing Dave dealing with so much pain is difficult and makes you feel helpless even though you must know you’re doing all you can and you know that he appreciates all that you do for him. Maybe tomorrow will be the day something will be done for his breathing. Let’s hope together.

Moonlit – get some good R&R with your Don & enjoy every moment.

Beth – wonderful news about Gary – glad to see he’s bouncing back after a difficult start on Jevtana. He’ll get through this and I see success coming his way!

BeeJane - I really like your suggestion to Peter…I’ll second that and hope the rest of the group does too.

Carol – Did Steve have some good weather for a weekend bike ride? Hope things are going well with your fight…we’ll be here to support you.

Krissy – thinking of you & hoping things are well. You have to be one of the busiest ladies on HW – here’s to catching a break and things slow down a little for you.

To all the wonderful women here – take care of yourselves while you’re taking care of him.

Better get this posted before it vanishes again and I have to say a lot of bad words…

Susan

2005 Husband dx at 63 yo Gleason 4+3
2006 LRP First post surgery PSA 11.8 Stage IV Start Lupron
2010-2014 Casodex, Provenge, Nilandron, Zytiga, Orchiectomy, Xtandi.
PSA cont rise. Spot on spine & enlarged lymph nodes.
2014 Xgeva & Taxotare
10/31/2014 Last Taxotare due to SE’s PSA was 14.82 now 1.3
2/27/15 PSA 10.48
3/20/15 PSA 13.68 Multiple lesions found in liver
3/27/15 Start Jevtana w prednisone Neulasta 24 hrs after chemo
4/17/15 2nd Jevtana Finally The Great Constipation resolved
5/08/15 3rd Jevtana
5/29/15 4th Jevtana PSA 38.84
6/11/15 CT Combo & PSA

Post Edited (myman) : 6/16/2015 3:03:24 PM (GMT-6)