"Sue Saddened Wife" Continuation Thread 2

Sue, I emailed you. Don is not at all impressed with anything the oncologists suggest. We now have weekly standing blood tests for blood counts and electrolytes form the oncology dept of the hospital and a LDH test weekly from the GP. I'd like the LDH a lot more often than that as the treatment he is on needs closer monitoring. I can do the potassium and uric acid as I have the meters but would like to see what is happening with the LDH. The people who gave the transfusion should do weekly monitoring. xx

Post Edited (Moonlitnight) : 7/16/2015 2:18:46 PM (GMT-6)

Sue, the jevtana worked wonders for Gary. See if you can get medonc to do it in combination with zytiga now! With nos that high, waiting to stabilize might be too late. If he can tolerate it, I would go for it.
Beth

Carol,
From what I was told, the bad SEe from liver mets show when the liver is really bad, like jaundice, etc. Gary has been able to get the SEs from chemo to a minimum, so he continues. It's a tough choice, and I know it must be terribly difficult for you to support his decision, knowing he might get more time, with less qol. No matter how you look at it, it's just so darn hard!

Thank you, Sue, but I was young and unaware of what dying involved, and had two little kids to keep my mind in the present. There is never a good time to go through this. My uncle just recently passed away and his 83 year old wife doesn't know what she is going to do.
There's that split moment when you wake up in the morning thinking nomal thoughts, and then you are hit with reality. Someday, you too will be thinking, "how did I manage to go through that?" Every body just does. You just get up in the morning and do what needs doing. There is no time for falling apart. I sometimes don't have much patience for petty problems when you women are going through hell and wondering what the morning will bring.
My best to you. It's so hard.

Carol did your oncologist say what can slow liver mets ? Dave has 2 of them that were not there on the previous scan. They seem so non concerned about this. I am hoping jevtana will knock some of those out . I wish they would use jevtanta with the zytiga but ..STANDARD OF CARE here in Canada. They of couse are not worried about time left or what could keep Dave here alot longer. We were told if we find a drug trial to let him know and he will see if he can get us in. I thought they should know whats going on In trials and if Dave fit criteria they should get it for him.
Ok Dave is so absolutely soaken wet every night what are your guys taking and has any of it worked at all!! Sheets are in the laundry steady! After sweats like this he is freezing cold.
Last night for a good nights sleep added 2over the counter muscle night time tylenol. First sleep until 5 am in months . Not up every hour on the hour! He even looks happier this am.have a great day everyone 💙 XOXO

Carol it is absolutely frustrating!!! OMG what would these people who put things on hold do if it was them. They just don't understand from our point of veiw.our oncologist told us If I find any drug trials or meds he would see what he could do. BUT why isn't he looking for something on his own. When we did the xofigio for Dave he didn't didn't know alot about any of that . What was even scariest wss the fact that the radiation oncologist where go never knew about it either?? This is supposed to be a cancer centre? There are lots of times in the the course of this that I have learned the newest thoughts on treatments before they have . I have a I box and I read alot of the new drug findings and treatments. They should have way more access thanI do.
Dave was only given 2-4 months in May but I really don't buy into that . I asked the oncologist how he derived at the prognosis and he said he based it on crappy Dave was feeling after he allowed his hemoglobin to slide to 68!, and then made him wait 10 days before a blood transfusion. Today we have to findout if the uurologist will fill the prescription for the xgeva sfter palliative care and the oncologist wouldn't?? Ithink that is the most frustrating thing of all is to be dealt with a absolutely rotten disiesae like this and the feeling no one really wants to help with anything. It must be nice to find a place where they actually are thinking of us going through all of this. Its become so mainstream and they seem so uncaring and for Dave and I at this juncture feel they aren't willing to do ANYTHING at all. I am not above begging if that what it takes.! Thanks for the advise on ice chips .Hopefully you get some sort of news from the centre in Detroit. 💙 XOXO

Yes, Carol. I don't care and neither does Don. It is how he is feeling that is important these days, along with his LDH as the treatment he is on should reduce that quickly if it is working properly. We just discovered we have a standing order for a transfusion every Tuesday. Interesting how suddenly everyone is doing what they are supposed to.

The appointment for radiologist is Aug 11  we are trying to get an earlier appointment but we had to be put on a call list.  I will let you know as soon as it is over.  We also got called today for the clinical trial consult which is July 30 I will let you know what they say.

Glad to hear Gary is doing pretty good.  At church last night they asked how is Steve and I said on the out side he is good working every day and feels pretty good, but on the inside his cancer is growing and spreading fast.

Is Don still on chemo? I was wondering why his blood counts keep dropping?  Is is usually from chemo but can be from cancer effecting the bone marrow production of blood.  Sounds like he has little time to feel better before counts drop and he feels bad again.

I had to file for family medical leave at work today.  It is intermittent which means I can just take days off that I need.  He now has so many appointments I can not get enough days off work. Another step in my life I did not want to take.  "Cancer Sucks" every aspect of our lives Carol

Things are not good here. Don's hands and feet swelled up probably due to low albumin and the 500ml infusion. The palliative doc hauled us into his office and gave us the "death talk" which thrilled us no end. So the primary plan is to fatten him up so that he doesn't look so skeletal. His WBC and neutrophils are within normal range, platelets low but "OK" and haemoglobin 96. PSA was 214 last time I checked. LDH continues to fall.

Susan, *Doing a happy dance.*

Susan, I am thrilled to hear about Don. What is carboplatin? Gary was taken off taxotere due to SEs and is back on again after finding out how to deal with SEs. He gets his psa result tomorrow before third round of chemo. Hopefully similar to Don.
Antonio, so sorry your Don is struggling again. Keeping weight on our guys is a never ending battle. I don't seem to have any trouble
Carol, thank you for keeping us in the loop about what they will be trying to do iterating Steve's liver mets.
Sue, give our best to Dave. We are praying for him.

Beth n Gary

Well, I was hoping Gary's psa had dropped, but it crept back up to 1043. Everything else on blood test very good. Slightly anemic. I tried to get doc to consider adding xtandi now, but he wants to wait and see what this round of chemo does. Said not to get wrapped up in PSA. Yeah right At least he's still feeling good, thank you God!
Sue, did you get psa results? I think if anything can help, zytiga is it. Best drug so far for Gary.
Do something nice for yourself this weekend ladies!
Beth

I am feeling very angry today. Gutted, as we say in the UK. During our meeting with the palliative care doctor, Don was asked where he would like to die. He was obviously taken aback and said, "On the sand outside our Caribbean cottage, at age 80 and I fully intend to be there." The doctor was not pleased with this answer. I said, "At home" and he then turned to Don and said, "You are a VERY SICK man, Don, you don't seem to realize this." I had to bite my tongue as I wanted to say, "No kidding! And we thought we were sitting in the heath spa" or something snarky. What a ridiculous thing to say. As if we don't know this.

So then this fellow says something along the lines of, surely you have considered Don dying pretty soon and thought about it. Haven't you? Hmm? Hmm? He was staring at me so I told him that I don't dwell on the negative, that two of my friends lost their husbands to sudden heart attacks, one in his sleep, and that I prefer to focus on life. He didn't care for this answer and so asked Don if he had thought about dying soon. He said the same, that he feels he has some chance of getting better and so he holds onto that. At this point the doctor was becoming frustrated, thinking that we were being evasive and in denial. I told him I would contact him personally for further discussion. I do not want Don going through this crap and the object was to get us to sign onto the palliative care program. I will happily do that but I am sure they will want Don there to agree. He refuses.

I mentioned some of this to three friends, one a retired nurse, one a doctor, and one a writer, and all were disgusted. The doctor used to work in palliative care and thought this approach was really pushing it. He said that normal practice would be to explain the palliative program and allow the patient to decide whether or not to participate. Not to ask such personal questions that have no real relevance. The doc we saw said, "It is my job to help you to die." No one has EVER said, "It is my job to help you to live."

I view dying as part of life and personal. As long as we have family and friends, the painkillers and the assistance we need via the palliative program, then we don't need some unknown "helping" us to die. This guy gets written up in all the papers as some sort of hero leading people off into the light. But we neither want, nor need him to be there. So does anyone have any advice on how to handle this situation? I want to tell him that we will sign up, that Don doesn't want any more "death" talk, and that we will call on him if we need something. I don't want to be rude as he does manage to get people to respond fairly quickly - he called the urologist for example, and we now see him Monday and not September 3. But I need to get this point across, that we are pretty independent and we do NOT like discussions about death. We have wills and we know what we want to be done with our earthly remains after transitioning. We practise Buddhist beliefs and have the Tibetan Book of the Dead audio stuff (thanks to Richard Gere and a truly wonderful client/friend). No vultures.

Antonia ; this Dr sounds terrible . Tell him to worry about his own mortality ! Life is about living , its not that we are in denial but you can't think every day that it could be your last !
We had a bad day as well psa has shot up by 1,112 in a week and is now 4,334. The urologist on Monday ordered up all this bloodwork because I said I wasn't happy about not getting that done .I actually had to insist that we didn't wait 5 weeks for bloodwork from the oncologist. Where would psa be in 4 weeks from now . It is the very worst of care as far as I see .I will be telling the oncologist off on Mon and he had better be on the phone before 8:30 mon morning. I know a blood transfusion will be in the works for next week . Hemoglobin isn't bad but the platelets are at 59 and he is totally breathless. .Well hoping for better things for us all next week💙💙💙