Oh I did forget to mention round 1 of xofigo Dave had almost 19 days of diarrhea. I am not sure if the Xtandi was still in his system but it was terrible. That is when we started using boost 3 times a day . I have cut that down to 2 a day now. The last rounds have been ok . It is a posted SE of the xofigio. I still think we would have done better to have zytiga as the combine that with the xofigio and it is supposed to pack a two punch kick at the PC.
Sequencing , direction , guidance, words and advice we could all use!!

Well its a good thing diarrhea could be going away. I know Don is a pretty tall man and 150 lbs o his frame would not be much. Dave in the past couple of weeks put on a few pounds ...mostly in empty calories but at this point I really don't care as long as there is meat on the bone for what the future may take away. I think all of Canada is just not with what to sequence for treatments of PC . I wish there was a game and follow up plan . I feel secure when I know what is next and can rely on the fact that something is being done!!

Sue and Moon,
I just want to comment on "palliative care". When Frank was first diagnosed, we tentatively scheduled surgery while, at same time, speaking with medonc and radonc, among others. For some reason, radonc thought Frank should have nuclearmedicine bone scan, though his PSA was less than 20, so not standard protocol. Bone scan showed mets, bone biopsy confirmed and we went from chasing a "cure" to "palliative". Well, we walked around in shock for days. Frank's nephrologist put us in touch with the palliative care branch of the local hospice he works with. What a group of caring, kind individuals...they came to the house for a meet and greet and discussed what they could offer both of us going forward. No talk about hospice or dying etc, talk of advocacy, support, counseling, pain management, house-cleaning, whatever would help Frank and I help Frank. So, a counselor came by once a week to speak with Frank as he was very depressed in the beginning. Haven't used any other services yet but glad they know who we are and that we've made the contact pro-actively.
Another thing I'm pondering: I recently read a study in New England Journal of Medicine, out of University of Massachusetts that was thought-provoking for me. Patients with terminal non-small cell lung cancer lived 25% longer when palliative care was added to the standard of care vs. group receiving only standard of care. The palliative care patients chose not to seek as aggressive treatments
while control group did. The take away from this study showed that by stopping aggressive treatments earlier there were less toxic consequences for the palliative care group. Less toxic consequences improved quality of life and improved quality of life contributed to the will to live thus the 25% longer survival benefit. This has given me a lot to think about and discuss with Frank as docetaxel has been a hard treatment regimen and I don't think Frank would do it again.
All for now,
Lisa

Beth,
Benadryl is a definite prior to next injection. It's an irritation but not like 19 days of diarrhea I'm pretty sure on that point. How's the garden growing, the mayor domo of our acequia is wearing himself out getting our water flowing in the irrigation ditches and the apricots bloomed without a freeze so it looks like a fantastic year down here. I'm still gonna wait till May 15 (avg.last freeze) to put out the essentials like heirloom tomatoes, chilies, basil, and cucumbers. There nothing better then a cucumber sandwich in the heat of the summer . . . Q

Lisa ; I as well read a article about hospice addition and how it prolongs survival. In Daves case the type of PC is very aggressive and the approach to it has to be as well .Dave really doesn't do well with strangers and I know he has no desire to never have hospice care. He really doesn't want palliative care either . I am not in love with being locked in a room for over 3 hrs while Dave answers the same question 3 times over. It is the most depressing appointment we go to and life is just to short to have to do that monthly. I managed to get rid of Marches apt. And this time he is at 6 weeks before going back. At times I would just like to quit the whole bunch of them !! It just seems as life evolves around appointments.
Antonia I have no idea just why in Canada there are not that many petbscan machines, I know the cost is always a factor but for the quality of them you would think there would be few around some where?
Bloodwork again for Dave and crossing fingers and toes that levels allow xofigio shot soon.
Hi Quincy ..garden sounds lovely! , FRESH veggies Yum!!
take care every one Sue

Susan, I must tell you that we have discussed the treatment v. no treatment thing endlessly. One of my clients - a truly brilliant man - is for no treatment as soon as the treatment appears to be causing more trouble than it's worth, but how do we know what is treatment related and what is disease related? All I know is that my husband was feeling fine except for discomfort in his collarbone (this being after a metastasis on his skull base pressed on a nerve to his eye, causing terrible pain for three months). That was dealt with via radiation to his neck and he was put on abiraterone. This made him extremely ill. It was followed by enzalutamide, which made him worse. He lost over 100 pounds and then was put on Xofigo. None of these drugs has worked and the radiation has made him very sick. It has been a week of throwing up and terrible nausea - which is back with a vengeance today. Aside from the eye nerve incident, he has experienced no pain, except for an achy lower back, which the docs feel is more likely to be from arthritis.

I have been reading some fascinating material on sound vibrations and how they can destroy the cytoplasmic and nuclear membranes of diseased cells. There is a lot of research going on at the moment. Oncologist Dr. Mitchell Gaynor uses sound for his cancer patients and is achieving remarkable results alongside standard therapies. Others are using sound vibration techniques as stand-alone therapies. Dr. Gaynor's book is called The Healing Power of Sound. The book on consciousness is by Gregg Braydon and it is called The Spontaneous Healing of Belief. There is so much we don't know and so tend to dismiss. Don is anti-everything these days and I can't blame him.

Keeping it all crossed for all our guys, whatever route they choose.

Sending best wishes to Ted and Sal. So saddened by this. Thanks for update, Lisa.

Yes, that was a really heartfelt post from Sall. Don't feel alone Susan, it left Connie and I weeping as well. I will bee doing the simplest garden possible as an hour a day on my feet is about it for me but I refuse to let PC take away my summer greens, reds, and yellows!

Sue, thanks again for your info on needed Jevtana supplements, you know how valuable these will be to me if I go down road . . . Q

Hi Sue,
Just got Round three of Xofigo this afternoon,and all seems to be well. One thing has us flummoxed though, my PSA dropped in the two week gap between the one I got for my MO, 160, and the one I got for my RO, 150. These are coming off of the PSA I got a month ago of 122. I know that the numbers are much lower than Dave's but it's the trend that I'm looking at here, a roller coaster effect. My RO told me that we really shouldn't be concerned with Xofigos effect on the PSA anyway as it is not intended to have a PSA lowering effect like HT does.

I'm going to buy some 3--5 gallon containers for tomatoes and cucumbers and Basil and such. As low activity as possible perhaps that will force me out of this fatigue I've been going through. I have the shortness of breath but not to Dave's level. I think that if I set the containers up so all I have to do is water once a day I'll be fine. My neigh has volunteered to help set them out. I didn't do a thing the last two years but three years ago I did a whole 1/4 acre. I sure do miss it . . . Q

Quincy, know what you mean about psa being all over Daves did come down from January high of 3,005 to last months 2,410. He has had all these bloodworks done but not a psa so when we go to Kingston and I hope thats Fri we will get another read then. They always say that doing xofigio could increase psa numbers. Glad you feel like wanting to do some gardening. Just did a webinare about the bennifits of exercise and prostate cancer. They say no matter where you are anything just to be moving can slow up progression. The muscle loss is a big factor and just short walks of even 15 miniuets is good. If I can get Dave outside I will aim for a walk around the block, right now he wouldn't be able to do that.
Antonia; I found out that Sunnybrook where Daves goes for xofigio has a pet scan machine. Do you think we should insist on getting one for Dave? If we did I think you said to give it time after last xofigio. How long after? I googled pet scans in Ontario and that gave me a list of hospitals that have one. It surprised me because BC actually has better provincial health care that you can't easily without paying get that for Don.
Dave has had a fair amount of pain in his arms shoulders and into his neck. The firmagon or xgeva gave him a huge bone flare day of pain last Friday. I almost think its from the firmagon because he had that a couple of times before and he wasnt on xgeva at the time. So hoping today we have a idea of what we are doing. I have to say this has not been fun as Dave is getting more depressed over not being able to do anything. Last night I wanted to wash the car and he says just sit down and leave it . That was his job before and I think he wishes he could be doing it.So I make sure its done exactly how he would have done it himself.
Well hope every one reading today has a great day ! Last day of April! Hello May and nice weather!

It is a beautiful breezy sunny day here in Florida. Today we celebrate our 49th Anniversary which of course, was a time for looking back - hard to believe two people who didn't know where they were going or what the heck they were doing somehow worked out all the roadblocks (which mostly were put there by ourselves!), the twists and turns of life in raising 3 children and this cancer thing. This is how we've worked out the cancer thing...he has it - we deal with it. We know there are rough roads ahead but onward we go and are so grateful for every day we have together. Amen!
Our best to all of you and thank you for your support,
Susan & Don

Susan and Don sending you the very best wishes for a HAPPY ANNIVERSARY,. Antonia and Don 30 years to is along time . Just think alot of the couples barely make it out the church and they are heading to divorce court. I think now a days younger kids just don't work on their relationships and take their vows to lightly.
Not to dampen the happiness but apparently we got the wrong message and Daves # is a no go for #5 xofigio and for additional cheemo ?? So told oncologist to find something by next Wednesday appointment because he better not be thinking of just giving up on Dave . Blood transfusion platelets what ever it takes!
So back for labs tomorrow and he is going to do psa as well. He probanly should have had psa done 2 weeks ago to stay ontop of the cancer spread!
when I die I am coming back as the strongest advocator for mens prostate health as well as a oncologist! ,