"Sue Saddened Wife" Continuation Thread 3

Deanna, this is the hardest thing in the world to live through .your mother could never prepare you for this. I know I tried right up to the end to stay focused on the future even though I knew it was not looking good. You have to do this for you because it drains you to much emotionally to think about it all the time.Dave and i talked about xmas and next summer evrn though we knew in our hearts things were not going well. Those words they use when they tell us that are worded in such a way they hurt the most. We know it within our selves its not well but I know Dave did dwell on the fact end of life was close. We weren't in denial but to live at all. you can't keep focusing on dying..Love him, hold his hand that is doing more for him right now than any dr ever could.💙 XOXO

Celebrate Life,
Thank you for asking. I have not been good about updating things. The short version is my husband was diagnosed April 1, 2014 with wide spread bone mets, and he had a PSA of 790. Lupron/Casodex brought it down for first 4 months, then immediately started to rise, He did Taxotere Sept - Dec, 2014, and got the PSA down, but by January it was already going up. In May he started Xtandi. June he did Provenge. We were suppose to go hiking in upper Washington state in June, but postponed trip until July, because of Provenge. We flew to Seattle on July 22, and almost immediately I knew something was wrong, he was very weak, and could barely carry his camera case, this was not like him. Over the next couple of days, he was walking like he had Parkinsons disease. On July 26, I took him to a hospital in WA, they sent him by ambulance to another hospital in Olympia, WA. There we found out he had a fist sized tumor that had literally grown into his spinal cord, and we had to stay in WA and have it radiated 10 treatments. We went to WA planning to "hike", we left WA with him unable to walk. As soon as we got home from WA, we went into our hometown hospital because he was slurring his words. It was then discovered that he had cancer in the dura mater (brain/skull), liver and lungs. At diagnosis we knew it was already from knees to skull, but he had done amazingly well .... working, playing, living life. He has since had 10 rounds of radiation on his skull/brain to relief the mets, and his speech has greatly improved. Here is the catch, his PSA is 0.78 at last check. Our oncologist has said that it really isn't part of the equation any longer, that it has morphed into something else. Has given him a short window of time. His urologist has asked that we go see Dr. Eric Small at UCSF in San Francisco, and we are on Tuesday. I have seen him really decline this last week, when I tried cutting back (as instructed by the radiation oncologist) the Hydromorphone, he was just exhausted and needed assistance moving from wheelchair to recliner, etc.. I have upped it again, but have seen little improvement in energy or strength. A hospice worker was sent to our home, but we did not agree, because he still wants to go to SF and see what else might be available. We get a visiting nurse once a week, a physical therapists twice a week, and we were getting an occupational therapist, but her last visit was yesterday. He is taking morphine and dilaudid for pain. It is not good. Even though we have known for 17 months that he was not going to be cured, he has done really well up until July 22. I will let everyone know what Dr. Small has to say or offer after Tuesday. I see that your husband also started with a very high PSA, that is encouraging. Again, thanks for asking. I wish I had more to offer people on here, I always feel like the recipient.

Deanna
No one fights alone!

Hi friends,  I am so glad to see posting continue.  The reason Sue kept this going is for us to be able to release our feeling and encourage others.

Deanna please keep posting.  I am one step behind you but with out many of the problems you are experiencing.  In the last month Steve has had to stop being president of a club, stop riding his motorcyce and quit work.  I think that is harder on him than hearing about more cancer. I have not asked "how long" but am thinking maybe time for hospice as they are a great support for the family and answering questions. I know the mental decision making is most of my stress.  Carol

Deanna, Carol, and Theresa... keeping y'all in thoughts and prayers.

Theresa xx We have always taken this tack. We discuss the future constantly. This seems to ANNOY (seriously) some of the people in palliative care. I just don't get that but I am sure Sue experienced the same.

Deanna, Your story gave me goosebumps as we were there for a while - mets in skull caused excruciating head pain and severely crossed eyes. This went on for three months while the lot of incompetents at the cancer agency did absolutely nothing. Long story short - diagnosed over the phone by a neuro in NY - neighbour ophthalmologist got us an emergency meeting the next morning with a neuro-opth at another hospital, two days later, in radiation. Second of six rounds wiped out the pain almost instantly and, over three months, eyes went back to tracking normally. My guy also has had bone marrow destroyed by Ra223 therapy and needs a transfusion every two weeks. PSA is almost 300 and rising rapidly and one of the docs at the cancer agency said that most of his cancer isn't producing PSA. We are debating what to do. I IV him with 3-bromopyruvate but the protocol on that has not been established. All the MDs doing it seem to have their own ideas. He would never do chemo and cannot anyway due to daily diarrhea. Our friends are going to a clinic either in US or Mex (I think US) that specializes in integrative oncology, so will update everyone on that in three weeks. They do the dendritic cell therapy.

We have also had "the talk" and ignored it for the best part. What they mean is that THEY cannot do anything more. That is not to say you cannot.

Good morning;
I agree whole heartedly with Moonlitnight. Oncology only has so much to offer and then you hit a dead wall. They dont care for the fact that we dream of the future because they have already deemed it other wise. I think they have "Standard of Care " and once you are past what is deemed to be standard there is nothing else. As far as I see it had Dave been given testing to see if he was ARV-7 possitive or negative that could have affected treatment choices we had to make. A positive would have clearly shown that Xtantdi or zytiga may not have fit Daves PC. A pet scan as well would have a year ago picked up the microscopic mets to long bones and again would have perhaps changed treatments. I am not a medic far from being a scientist but because I tried everything I could possibly do to help Dave you soon learn a thing or 2. I know the fight you are all going through and Lord knows it ain't easy. Remember though to take care of yourself each day, take a time out , do something just for you . Pc is not a easy fix I had hoped Dave even with all the odds stacked up against him and right up to the last breath he took always HOPED,
Hope and looking forward to the future kept us strong and probably added months to Daves life and in those months anything could have happened. Response to a treatment, feeling better, and I know it was more days with me. So love them , spoil them and never give up
Love to you all Sue 💙💙💙 XOXO

Sue, I so echo your words, dear friend. You have expressed my thoughts entirely. I spoke to the Greek doc who came up with the AR-V7 test but little point since Don had just started the awful (for us) Xtandi after an unsuccessful period with Zytiga. He said he would like to have helped out (but basically too late).

I am constantly stunned by the lack, not only of knowledge, of our cancer personnel, but their perpetual unwillingness to look outside of the box when I mention any drug in the works. Of course, now it is all palliative so they don't give a you-know-what. Meanwhile, our PCa coach, who is a retired US prostate oncologist, tries to set us up with various luminaries in the US medical system but we cannot leave the country as no insurance plan will cover Don for any medical intervention - like if he slipped and broke a bone. He is now angry with us for not doing what he suggests in consulting personally with these people.

Sue, yes, we will ALWAYS have hope. I hope you are doing OK, but know that is a bit of a stretch. xxx

Don is doing relatively well although I am now convinced the diarrhea is NED related. The new and nicer palliative doc doesn't understand why the egotistical twerp we had before did not pursue the diarrhea thing. She put him on cholestyramine. Not sure of the outcome yet. Seems to have slowed down but then it could just suddenly come on full force again. He is walking around the mall and getting lunch out (he loves this) and being independent. This morning, he is very perky and just fixing his brekky (again he has to do it himself). Aside from mebendazole and the 3BP, we don't have any anti-neoplastic options. [Update, the dreaded D is back...]

Carol, Oh my. What to say? I feel so much for you and poor Steve. Please tell Steve that three-and-a-half weeks ago, all Don could do was lie there and make very small journeys to the bathroom and back. He felt despondent but something happened after the last transfusion to make him much better than after previous transfusions. After the sun the rain, after the rain, the sun. and all that. I am keeping you two close to my heart today.

Theresa, Susan, Krissy, Beth, Deanna, Mel etc. hugs to you all...

Post Edited (Moonlitnight) : 9/8/2015 9:39:21 AM (GMT-6)

Carol and Steve,

I wish I could reach across the miles and give you and Steve a hug. I can' stop crying every time I read your post. This shouldn't happen to anybody, but especially not to young and vibrant men in the prime of their life!

Sue, That happens to me too! Hang in there love, we are all holding you near right now.
XOXO,
Beth

Sue, Thinking of you today and always. You're an inspiration to all of us here. Please keep posting and updating, we all think of you so often.

Sue, this is the first post of yours that made me smile...just a little one, but I smiled at the thought of you out with a friend shopping. Dave and you will be together for all eternity. He will be there as sure as that adage "True love never dies."

Carol, how is Steve? Susan, I emailed you and hope you got it. It was in response to your last one to me. I am having all kinds of problems with email bouncing back, being compromised and what-not.

Beth, Theresa, Deanna, Mel, Krissy and everyone else, have a wonderful weekend (as wonderful as it could possibly be, anyway), and hold your guys closer than ever. Mine is not doing well. The evenings are hellish with this perpetual burping and diarrhea. I think it is to do with liver or pancreatic mets but, since there is "nothing more we can do" from the medical side, we don't get a scan of any kind to find out.

Oh it sounds like so much fun, Krissy! I love Oregon. We are just across the border so used to get down to WA and OR a lot but now we are not insured :(

I know when we went on a short trip in the fall last year, the radonc put Don on dexa - 8 mg for five days and he felt a lot better.

Continue to have a great time! xo