"Sue Saddened Wife" Continuation Thread

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(url=https://www.healingwell.com/community/default.aspx?f=35&m=3448962]"Sue Saddened Wife" Continuation Thread 2

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Please use this thread to continue the conversation started on New Member "sue saddened wife" : PSA rising (3005) after two tx xofigio. What's next? which has become long enough that it may cause something to go *sproing* in the software. Threads that run to more than ten pages sometimes make trouble.

Thanks, PeterDisAbelard, Moderator.

Post Edited (PeterDisAbelard.) : 7/8/2015 7:56:51 PM (GMT-6)

Hi just a update tomorrow we go for a bone scan at 10 so will be on the rosd for 7:30 . Not crazy on the time wait of oncologist appointment after that because its not till 3: 30 and a very long day for Dave. But out of it all there has to be fix for the shortness of breath doesn't matter if its a blood transfusion or a platelet as long as something is put in place because he can't keep going like this he will have a heart attack or end up with pneumonia! Whats next ?? There had better be something in the offing because I don't think more xofigio is going to happen. I think bone marrow supression could be a problem and not sure because of the bloodwork if its not happening already.
So we should have a psa read from last Friday bloodwork.
Not crazy about the date and I think bad carma. Ad 2 years to the date was our first disastrous visit to the cancer centre. No good has ever come from our visits there. So my guts in knots and I know I wont sleep tonight.

Sue, I hope sleep comes your way tonight. You do have a big day tomorrow and rest is needed not only for the drive there and back but for the appointment when you talk to the doctor.
If you can at least get some explanation for decisions being made regarding Dave's treatments - you might not like what you hear but you need to know.
I'll be thinking of you both and am hoping for the best,
Susan

Sue, How are you and Dave tonight?
Thinking of you both,
Susan

Hi ;
Well the news here was not good and there are a few things we arevgoing to try. The bloodwork is platelets at 60 hemaglobin at 71 and in actuality psa dropped to by 300 points to 2155. The only thing is we were given a prognosis that we are far from accepting. He told us2-4 months . So to start with I read the side affects of megace that Dave is on can cause breathlessness so tomorrow we drop to half. The following week we are off it , Bloodwork on next Thurs and the we have a oncology apt the following week at that time blood transfusion will be done. No treatments however of any kind as cell counts are just to low. Dave feels as far away from dying . He is not sick , not in pain , and if we could get this breathing better , this time next year I hope the onclogist is telling us the same thing. With out the platelets I know the xofigio probably won't go forward . He did say we are probably within bone marrow supression. But we shall see. The day was loooong and yes I drove home and I don't remember much of it. We never left the cancer centre until 5 . So Dave was pretty darned pooped. If any of you reading can think of ANYTHING to build platelets and bring up hemoglobin. ..I will post some more tomorrow about ct scans ...Hanging in 👍 as best we can!

Dave prove them wrong!!!!!!!!  Steve was told he had 2 to 3 years almost 6 years ago.  In Jan this year dr said he would not ride his harley this summer.  He is riding it. He loves telling everyone he "proved them wrong" The day will come but till then live.

Sue, You can find story after story like Carol's (add my thank you for that) and that is what you can grab on to right now. This is no walk in the park and things are very emotional right now. Give yourselves a few days and move forward with your plan to help Dave's issues with breathing as that is something concrete you can do. Come here or email to vent (in all caps) and hopefully we can help you.
We're standing by you.
Sending best thoughts & thinking of you both,
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

Oh my heavens, Sue, you and Dave are sure going through it. As if you don't have enough stress. Don and I are sitting here fuming on your behalf. Is Dave OK after the fall? He didn't hit his head, did he?

Sue, I just don't even know what to say (if you can believe that). What a terrible day for you both.
Is he ok after the fall? And were you able to get his meds?

Ok now on to YOU. You need sleep - it's absolutely necessary for your mind and body to function. Do you have some kind of over the counter sleep aid? I believe lack of sleep does real harm.

Seems today was proof that you can handle the Crazy Crap that comes up. You can, Sue but you absolutely need to care for yourself with some zzzzzzzzzzz.

Best,
Susan

Steve and Carol
Forgive me for saying "Diane" in previous thread. It sounds like Gary and Steve are very similar in age, dx and treatments. Where are you being treated, if you don't mind my asking? And what kind of Harley? (I know you don't mind my asking that? )
If you want to email me, my address is open in my profile. How is Steve feeling with the chemo? How many rounds? Did the doc end up cutting back. Gary had his delivery method adjusted to battle SEs. Let me know if you want more info on that.
Beth

New day..no problems! Finally got prescription! Non of you would even believe when I opened the bag and it was for only 2 weeks of pills not even a month!
So I am not very happy with any of them. We won't use palliative care I can look after everything my self at least that way if you are let down at all its your own doing. So home care is getting cut to every 2vweeks . Pallitive is 6 weeks and we are going to live and to hell with the rest of them . Will strive to keep our life just as real as what it was before cancer.
Dave didn't suffer any long term damage from falling but his arm is a black and blue mess. I hope today he can come out side as it is going to get up to almost 80 and I have lots of gardening to do , he can sit and soak up some sun
Less time at useless appointments will allow for living and maybe keep Dave possitive . On Sunday we are going to our daughters for Mothers Day and her and I are going to get a pedicure and I am due for one ! Half of the last one is left and thats not a good look.Dave can nap there and visit with our 3 grand babe's.
I bought flowers for our back porch and it all looks nice and summery , the buds are all out on our trees and everything is on the grow!
Don't worry about switching the name , there are lots of us on here and alot of names. I always have gone by Sue . Well hopefully every one has a great weekend ...HAPPY MOTHERS DAY to every one !

I have tried to post 3 times & lost every one. Now I am pissed. Very. Up since 4:30 - 3rd Jevtana today. All is well. Will be back in am. Hurrying before this is lost, too.
Nite All

Hi Everyone;
So this morning I am at at 4 and I think I will really read the ct scan report right through and on page 2 it says Dave has a LARGE paraesophageal hiatus hernia. When I look up symptoms on web md I see breathlessness, anemia as internal bleed can be going on , basically if not fixed yourstomach would be cut off of blood supply and you die . FIRST question Mon am why wouldnt oncologist read that and suggest doing repair? Did he think Dave would just die a horrible death from something that can be fixed. WHAT if after repaired Dave gets blood levels up to treatment and years from now we are laughing about this? WHO gives the Dr the right to just Ignore this , who made them God. WHY am I always having to double check whats going on? BUT ihad better get answers on Monday and a appointment for Dave right away with a specialist .....I may never sleep a whole night the rest of my life