A few posts ago I asked you to add our friend and former neighbor Jennifer to your prayers. After fighting to the very end, Jennifer went home to heaven today. Things took a turn for the worse last week and this news leaves me very sad for her husband and young son. They are all so young, she was always so happy. Life is unfair sometimes, this is definitely one of those times!
Mary picked up on this the other day and asked if I was internalizing what Jennifer and her family were going through. I answered no, but Jennifer’s difficult journey with cancer along with a few others recently have weighed heavy on my heart. The other two situations that have contributed to my solemn mood are from two gentlemen who are participants on the prostate cancer message boards that I follow. The men are in very late stage, they no longer receive treatment, and choose to spend their remaining days at home with their families while receiving hospice care.
One man in particular, John A, is sharing his final days in very specific detail. It’s insightful, fascinating, and so eye opening I hang on every written word. I hope you don’t interpret this as morbid. What John writes is beautiful, along with educational. He shares it with those of us that will follow his path someday. I’ve gone over this from time to time the last few years, but without the type of detail John is providing. I just expected a long drawn out painful end in a hospital bed. However, the insight John has provided has completely changed my thoughts on how this whole thing winds down. It’s with the grace and the caring hands of a certain someone along with those from a good hospice. Additionally, and more importantly, it’s at home, surrounded by friends, family and love.
Please, please don’t interpret this as me throwing in the towel, I’m far from there, there’s a hell of a lot of fight left in me. I just shared this today because it obviously has been on my mind a lot. With the onset of spring I can feel things changing, mostly my mood. I need to get out more and walk. I can’t wait to sleep with the windows open. I anticipate flowers blooming and the trees with leaves. As I say every year at this time, spring is my favorite season.
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A brief update on my last post, I’m almost 100% certain the monthly aches and pains are a side effect of the two monthly shots. More specifically, I believe the Xgeva (bone strengthener) is the culprit. It started over the weekend and last night I needed Advil and the heating pad to sleep. Today is better and I hope this only lasts a few days instead of lasting a week like it did last month.
A brief update on my last post, I’m almost 100% certain the monthly aches and pains are a side effect of the two monthly shots. More specifically, I believe the Xgeva (bone strengthener) is the culprit. It started over the weekend and last night I needed Advil and the heating pad to sleep. Today is better and I hope this only lasts a few days instead of lasting a week like it did last month.
Hi David, I’ve been following your blog for a couple weeks now and have read back to many older posts. Just as you hang on to every word John A. says, I hang on to yours. Even though I am not sick I have a new appreciation for my life and everyone in it. You have made me a better, changed person. Thank you for your honesty about your journey. My husband and I are both catholic and 42yrs old. I pray and think about you often. You will receive many graces for the suffering you endure,just as Jesus suffered for us. Stay strong in your faith and lean on him. He is there for you even if you feel abandoned on some days. Thank you so much! My life is so different. Love You
I’m doing Xgeva and haven’t noticed anything big. I do have aches pains over mets site(s). One Clinical Trial requires I wash out Xgeva for 90 days prior to Provenge. Dunno what I’ll choose.
David, I’ve had 3 Xgeva injections and the second time I had a 14-day bout of serious pain. Third time, about a week. Every oncologist I ask declines to say whether it’s the Xgeva or just “ordinary” bone lesion pain, so it helps me to hear that you’ve had extended pain after Xgeva. Sounds like one of those things the drug company downplays but in reality the reactions can vary. Most oncologists say that 2 or 3 days is typical for Xgeva…
Thanks for sharing what’s on your mind. I find it very helpful, if difficult, to read about other men’s experiences at all stages. May I ask which message board John A is writing on? I’ve tried to follow several online groups but just don’t have the time to read through them. I’d like to read his story if possible.
Here’s hoping spring will come soon,
Dan
My husband was just diagnosed today, and I’m very interested to know what forums you read.
xl184 is a tki, not an AR. I see this question of why is my psa fluctuating…..psa is not indicative of general response.
PSA response (PSA decline>50%) has often been used as a marker of
efficacy in prostate cancer trials
• Based on experience with anti-androgens and chemotherapy
• Generally good correlation between PSA declines and tumor response
PSA expression is driven by AR signaling, but AR-independent
regulators of expression have also been described
• Cytokines (IL-6) and soluble factors released by osteoblasts regulate PSA in
complex ways
Accumulating evidence suggests that PSA response is not an
appropriate measure of anti-tumor activity for TKIs
• Lack of correlation between PSA changes and tumor responses
• Different mechanism of action
I am interested in your comment on XL 184 but don’t understand what you mean by “XL 184 is a tki not an AR” I am really trying to understand how XL 184 reduces tumor volume without reducing PSA.
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> Blocking the androgen receptor may not be sufficient to prevent disease progression. MDV3100 and Zytiga are Androgren Receptor (AR) inhibitors. PSA is an effective biomarker for identifying disease progression with these drugs. It will probably take several drugs to find an effective cure/treatment.
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> XL184 is a tyrosine kinase inhibitors that blocks both MET and VEGFR2. Studies have been shown that blocking VEGFR2 alone initially leads to tumor reduction but eventually the disease progresses and spreads. There is an interesting paper out recently that simultaneously blocking both leads to tumor reduction and stopping metasasis. Other biomarkers/research are needed for these non-AR therapies like ciruculating tumor cells, bone scans.
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> So please if you are on XL-184, do not focus on PSA, but rather the tumor reduction and/or scans.
Where can I read John A’s comments?
Thanks for the explanation. It seems that may be why I read of a new trial that combines XL 184 with Zytiga.
That’s my worry on XL 184 that we will only have temporary results and then the spread will take its course again.
I guess that is part of this journey.
I think xl works well after an AR drug because AR increases one of xl’s targets. I think ultimately it will be a combination of treatments to combat prostate cancer. Good luck to you. I think xl is the way to go for crpc.