Here is the third of Bill’s blog posts. He, and we, hope it will be helpful to all those battling late stage prostate cancer as he takes advantage of some of the new drugs that have come to market over the past couple of years. Click here for earlier parts if you missed them.
Part III: Insurance situation all fouled up …
The big news for this blog post is that even though my insurance carrier pre-approved all my new treatments, when it came time to pay they rejected all of them. Yikes. After a few days of panic and thoughts that I may need to suspend my treatments, my medical team came to my rescue. They assured me we would be able to work out the issue and that I should definitely continue with treatment. The situation is still in process of being worked out but did I continued with my March treatments.
For about the hundredth time in the past 6 months, I am so thankful to my new medical team and medical facility. In June of 2013 I moved my care from a big, big name New York City cancer center to a well-known New England cancer program. It is like night and day from a patient perspective and the level of care is equal or better.
My PSA has remained about the same — in the mid-50s (actually dropped a few points). My bone pain issues increased. I was informed the initial dose of Xofigo can cause a flare in bone pain. Hopefully the second dose of Xofigo will minimize the pain issues (but not yet at this writing).
Fatigue remains a constant issue for me and has increased again this month. I can do all the basics but sometimes I skip doing optional activities. On most occasions I need to force myself to do things such as hobbies. The ADT cloud is also my constant companion but we are still not friends (and never will be).
My insurance situation did resurface a nagging issue for me. The retail cost of my monthly treatments is somewhere around $50,000. OK I know that is not what is actually reimbursed by the carrier, but still it is a lot of money for a somewhat uncertain benefit. The questions which arise for me are: Is this a good allocation of resources? Could these resources be better utilized (and would they)? What is the real benefit to me, 6, 12 or more months of additional survival with a compromised quality of life? Would I pay this amount out of pocket for the same benefit? Could I actually stop treatment and, if so, how would I explain this to my family? For now I have no good answer to these questions.
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THE "NEW" PROSTATE CANCER INFOLINK 
I’m a relatively new veteran of an IMRT run, and I hope I have clear sailing ahead, although there is no real certainty; I am grateful to you for continuing your reporting and the first person pioneering service you are providing. This kind of insight is not available from press releases or equivocation from the medical industry! I hope you can pray for strength and hope for grace in your continuing travail; my thoughts and hopes are with you.
Thank you.
Thank god for the National Health Service this side of the pond. Although I do have BUPA cover, I have chosen to have everything from my brachytherapy, radiotherapy, chemo (including abiraterone, enzalutamide, cabazitaxel, etc.) given to me by the NHS for the last 13 years.
I do believe that they also have the very best consultants in the UK, many of whom actually prefer to work for anyone who is sick, rather than rich folk with lots of insurance cover.
Cabazitaxel ends next month after 6 cycles; my PSA still hovers around 1000, but the tumour in my liver is actually getting smaller, and the bone metastases show no sign of progress.
(As an aside BUPA pays me £100 every time I have chemo on the NHS!)
Thanks for the update. Regarding the fatigue … have you and your doctors discussed Ritalin?
Hi Rob,
Yes I have tried Ritalin. It did not help the fatigue and made me jittery. Thank you for the advice.
Bill
Hi Bill.
Glad to see you’re still fighting and taking chances with different cancer centers.
I was offered Xofigo and refused. I have bone netastases but no bone pain. I am 89 years of age, and I didn’t want to go through the rigors of radium treatment. I have been on Xtandi for 2 months and the tiredness and weakness is constant. It takes me 2 hours to get started in the a.m. and to overcome that weakness.
I am not looking for miracles at my age; just looking to to have quality of life and no pain. I accept the inevitable. I wish you the best and admire your pursuit.
Hi Bill.
How long would you say the pain flare from your first dose of Xofigo (radium-223) lasted? I had my first dose on Thursday, 4 days ago. I was told the pain flares normally last 3 days, would you agree with this?
Thank you in advance.
Keith