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Posted 9/23/2016 2:26 AM (GMT 0)
Hello everyone, I really struggled on how I should write this post. The first thing I want to say is that I am not writing this to discourage any of the brave men that are fighting this disease. What has happened to my husband is what the doctors are calling "the perfect storm.", or NOT the perfect storm in our eyes.
On my last update I had posted about my husband getting extremely sick after his first chemo treatment of his second round after progressing while on Xtandi.
He ended up being in the hospital for 14 days with severe Colitis that they believe was caused from a combination of radiation and chemo.
Without going into the horrible details he was extremely sick and the doctors were very concerned for a while which obviously scared my family terribly.
He is home now but continues to need TPN nutrition feedings given through his PICC line. He is still very weak, but trying to gain strength back everyday.
We went to our oncologist appointment on Monday and after a very long conversation my husband has made the gut wrenching decision to stop all treatments. This disease has become even more aggressive and angry. He has decided he wants "quality over quantity."
Again, I am posting this as an update on my husbands journey and not to scare or discourage anyone.
I don't really know what else to say as I am still trying to find peace with this very difficult decision my amazing strong husband has made.
He is at peace with it and that is all that matters.
Thank you again to everyone on this forum that has given us knowledge and support. It has and continues to help us through an extremely difficult time.
Posted 9/23/2016 4:33 AM (GMT 0)
I see that he has failed on Xanti. Has he already been on Zytiga? In no then is this an option?
Posted 9/23/2016 5:19 AM (GMT 0)
You are both brave. We all care about your journey and need to hear about others who show courage in the face of PCa. It helps the rest of us to try and be brave.

Thank you for sharing

Bless you both

rf
Posted 9/23/2016 6:22 AM (GMT 0)
Teamchris,
I am so aware of the emotional and physical roller coaster you and Chris are riding. I was almost hoping Gary would make that decision when he could only eat a bite or two of food for several days. Then a battle with thrush, and now fighting a UTI. His PSA rose 100 points to almost 800 and he weighs only 109 lbs. But he chose to have his chemo and lupron on Tuesday because he has felt good and eaten well for past several days.
I guess what I want to convey is that while Chris has certainly taken a he'll of a beating lately, his psa is still pretty darn low and he may start feeling a whole lot better and want to give tx another go in a month or even several months.
When Gary stopped the pilot clinical trial in Portland, he told the doc there the same thing. He wanted to spend the remaining time he had living, not traveling to Portland for tx. That was 16 months ago, but he has continued trying repeat tx with our local MO. A lot of the tx he has undergone have ha very minimal SEs, and have likely made him feel good enough to have had many, many good days.
Please don't think I'm trying to get you to plead with Chris to change his mind. Just consider exploring what other treatments might be available once he gets past this awful battle with colitis and may want to consider a treatment for palliation rather than intervention.
You indicated that the cancer is aggressive. Do you know if Chris has been tested or if it's suspected that it has mutated to a more aggressive neuroendocrine type of cancer?
I have been following your every post, as I feel such a kinship to you and your situation. I only wish you both more very good, good days to enjoy each other's companionship and love as Chris regains his strength.
Keeping you in thoughts and prayers for comfort and peace.
Beth
Posted 9/23/2016 6:41 AM (GMT 0)
Good luck to you both.
Posted 9/23/2016 8:44 AM (GMT 0)
I think that is a very reasonable decision. Someone in my support group just made the same decision. There may still be some palliative treatments he may want, so that he can have as much quality of life as possible. The critical issue for most men is the bone pain - spot SBRT and hormone therapy do a better job of controlling the pain than opioids, I think. And preventing fractures and spinal compression can keep him up and about for longer. I know how difficult it is for you, and hope you enjoy this precious time. Please do check in.
Posted 9/23/2016 12:54 PM (GMT 0)
Keeping you close in my thoughts and prayers. I hope he will recover from the side effects of his chemo and feel better soon. Wishing you peace and strength.
Posted 9/23/2016 1:49 PM (GMT 0)
Dear TeamChris,
I am sad to hear about your husbands side effects with his treatment but I believe that I understand just how he feels. There will be a time in many of our lives when we just say "Enough is Enough." Prolonging life just for the sake of prolonging it is not living, its just existing, and, I don't think any of us just want to exist. Enjoy every moment for Every Day is a Gift. Take care,
Posted 9/23/2016 2:18 PM (GMT 0)
May God bless you both and help you live each day to the fullest. None of us have any guarantee for tomorrow on this earth regardless of our situation today.

Best wishes
Posted 9/23/2016 2:40 PM (GMT 0)
It cannot be said any better than what the words of JNF have expressed. We can be in perfect health, yet not guaranteed another day. I want you to know that you are in my prayers, that God will continue to provide the peace that surpasses all understanding.
Mack
Posted 9/23/2016 6:18 PM (GMT 0)
Team Chris,
I understand your husbands decision. I hope I never get to that place but some day, if that day comes, I hope I can face it with courage. Having said that, and knowing that he faces a challenging dire, diagnosis, I want you both th know that there are many other treatments available that have less severe side effects and can be more effective than chemotherapy. The afore mentioned Zytiga for one but there are others. I realize that this disease varies from patient to patient and that G-9 tends to defy treatment but I have been taking Zytiga for 3 years. My side effects are no more or less than the Lupron I have been on for 10 years. There are many options. Todd
Posted 9/23/2016 7:46 PM (GMT 0)
My thoughts and prayers are with you Team Chris.
Posted 9/23/2016 8:06 PM (GMT 0)
Thinking of you and your family during this part of your journey.
Michael
Posted 9/24/2016 12:06 AM (GMT 0)
Dear Teamchris,

In the 1800s, American poet Emily Dickinson wrote these words in one of her poems:

"Not knowing when the dawn will come, I open every door ..."

In considering Emily Dickinson's poetic line, I hope that you continue to open EVERY DOOR, while waiting for the dawn of each new day ... continuing to connect with friends, family, and faith, in whatever form that takes for you ...

I'm mindful of what you are going through ... the decisions ... the thoughts ... the value of each day ... the sunrise ... the sunset ...

My deepest prayers for you ... courage ... peace ... solace ...

Please know that I am thinking of you, from across the miles,
"Cyclone Fan" ~ Iowa State University
Posted 9/24/2016 3:19 AM (GMT 0)
I truly understand and empathize with his choice. May he have all the peace he deserves as he continues on this chosen path.
Posted 9/24/2016 4:08 AM (GMT 0)
Thank you for sharing your journey. May many thoughts and prayers contribute to peace along your path.
Jim
Posted 9/24/2016 9:10 AM (GMT 0)
That's a difficult choice to make, but there are times when it is the right one.

Hopefully there are palliative treatments that will bring some comfort.

Peace,
Andrew
Posted 9/24/2016 11:38 AM (GMT 0)
I never cease to be amazed by the courage of those on this board. It takes a lot of it to make a tough decision like your husband. I wish you and your husband well and hopefully the cessation of treatment will give him a respite and perhaps something of a rally.

Bless you both,
Don
Posted 9/24/2016 1:17 PM (GMT 0)
Teamchris........everyone has said it all...I mirror their thoughts and prayers.......but , being a 24-7 caregiver for my wife with severe dementia, I understand what your up against and will be in the future....of course I wish that Chris will have other options even though he has made the decision , but ,you , I worry about too....and wish you strength in the upcoming days ....Peace and Love......David
Posted 9/24/2016 7:51 PM (GMT 0)
Grippin.... courageous....
Posted 9/24/2016 8:32 PM (GMT 0)
I've been in your shoes.

Different cancer. Different gender spouse. Younger than your husband. Same decision.

I can tell you that it is a decision made from love. In my case, our case, I can tell you I look back now, more than 5-years later, and know confidently that it was the right choice.

God bless you both.
Posted 9/24/2016 8:55 PM (GMT 0)
Thoughts and prayers to both of you!

Bobby Mac
Posted 9/25/2016 1:20 AM (GMT 0)
Prayers to both of you as you continue your journey. Making a decision like that can be liberating without having to worry about the next test and the next treatment. Live in the moment and enjoy your time together.
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