I’m a little late with this news.
I find that when I’m feeling particularly good or bad, it’s easy to compose posts. Otherwise, it’s often hard to generate the energy to write something. Monday and Tuesday provided mixed news and the rest of the week provided little motivation to write. It’s either a sense of guilt or a desire for completeness that drove me to finally write this post. My apologies.
On Monday I saw the oncologist for our bi-monthly meeting. I gave him a copy of my medical directive info, including an addendum that describes in more detail when I want a Do Not Resuscitate, or DNR, applied. Apparently, I want a DNR applied earlier than most, as he commented I seemed very pessimistic. I have to admit I was surprised. When it’s clear the end is near and no more than pain/heavy sedation is in my future, a DNR makes sense to me.
We then started talking about bone pain and when I might likely start to experience it. He said it can’t be predicted, but the good news is it might not happen at all. This was much appreciated – I’ll keep hoping I remain bone pain free.
I told him another of the potential side effects of Casodex had surfaced, very tender breasts. Any moderate pressure on my breasts produces a sharp pain. About 30% of the men who take Caosdex experience this and/or breast enlargement. (So far I haven’t had any enlargement issues.) I asked if there was anything we could do to reduce the side effect, which right now is yet another inconvenience, but tolerable. The short answer was no. The longer answer was it might get much worse, so that it’s intolerable, and then surgery is the only generally accepted option, but the surgery might not fix the problem. Great. A hot flash hit me right when he said “surgery” and then built until he finished with “might not fix the problem”. The prospect of this growing into intolerable, incurable pain scares the hell out of me.
My distress must have been very obvious, because after that he became more positive about my future than he’s ever been. Suddenly, he was hopeful that the Casodex might continue to work for 50 or even 100% longer than on average. I felt better at the time, but later realized there were no tests or any other new data since the last visit to warrant any change in opinion. It was nice he noticed and reached out, though.
We briefly discussed Zytiga, an existing prostate cancer drug now being used earlier in treatment than originally proposed. It sounds as if I would go on it after Casodex fails and before chemo. Preliminary results show up to an 18 month life extension. Very good news.
On Tuesday I called to get the results of my latest PSA test – 0.45. Good news, the Casodex continues to work.
A couple hours later my wife returned from the vet. It turns out our one remaining french bulldog, Julia, is having trouble absorbing proteins from her food. She’s an old girl, and the bottom line is we’ll be lucky if she makes it through the end of the year. At least she’s alert, eats well, is happy, and not in pain. Still, it hurts my heart.
I’ve been reading a lot of good news about Zytiga. Sounds to me like it is really working for a lot of folks. If the casodex last long all the better. Good news on the PSA. I like numbers that start with 0. (expect maybe my paycheck which needs more zeros on the right).
And I know what you mean about writing a post. There are times I just have to force myself to start.
Hang in there.
Zytiga really is getting some great press. I failed to mention it also minimizes bone pain. I’m not sure what the side effects are though. I know it’s supposed to be taken with low dose prednisone, so there are two sets of side effects. I’ll cross that bridge when I come to it.
I believe that open communication about the DNA order and opening a dialogue about your decision-making process will often help to smooth over any difficulties within families. Most times, when loved ones understand why you feel the way you do and respect the thought you have put into the decision, they will come to support you.
When I found out I had cancer I immediately starting investigating into pre-paid cremation service’s and attractive urns, I would chose. It gave me peace to do this myself and to take the pressure off my kids.
With the bone pain issue, I read this online and thought you could speak with your MD about it.
“ScienceDaily (Sep. 25, 2011) — Many prostate cancer patients develop bone metastases, and controlling the pain these cause can be difficult. Now the first large randomised Phase III trial of a bisphosphonate drug in these patients has shown that a single dose of the drug is as good for pain relief as single dose radiotherapy, the standard treatment for bone metastases. Results of the trial were presented at the 2011 European Multidisciplinary Cancer Congress.”
Beware with this drug ( BISPHOSPHONATE) it can cause problems in your mouth, if you get an extraction, ( called jaw death) and there has been reported causes of bone fractured as well. The pros and cons of every drug, comes down to a cross, do we wish to bear or not.
Also I read that you can take a prevented measure and have your breast/chest radiated to stop enlargement, however it has to be before the enlargement is happening, otherwise it cannot reverse it or stop what is there already. The electron rays’ they use can control depth and power levels within it and this is why it is used, it will not hit your heart or lungs as is will not go that deep. (This is something I would think about twice.) There is a lot of men with big chests and people don’t think twice about it. WHO CARES….
If all fails, you could always have surgery to reduce them, instead of radation, anyday in my book.
The Gods still want you around with your fanastic PSA test – numbers.
Have you look into the macrobiotics diet. ( avoid sugar, candy, soda, baked good, animal fat, preserved meat, mayonnaise, salad oils, you can have only olive oil, no butter, fried food, fast food)
Try the “flaxseed oil diet” which is flaxseed oil and cottage cheese mixed together.
Take 3- 6 tablespoon of the oil and 1/2 cup of cottage cheese = 3 times a day with a macrobiotics diet.
1. Get apprroval from your MD first…..
2. you can buy the flaxseed oil at walmart.
3. try this every day for 60 -120 days recheck your numbers to see if the cancer is gone,
4. look into the book “outsmart your cancer” for other types of recipes.
Sorry to hear about your dog’ health, I hope he has the best last year of his life with you and your family.
Wow! Thanks for the research! The biophosphonate sounds promising. I’ll look into that. Hopefully, I won’t have any issues with bone pain, but better to be prepared. The zytiga is also supposed to reduce bone pain.
Regarding radiation to prevent breast enlargement, I discussed this with my oncologist. Sounds like it used to be commonly done, but is falling out of favor due to side effects. Surgery is the preferred option.
I’ve thought about macro-biotic and other diets and decided to pass. A friend developed breast cancer and went on such a diet. My wife and I tried to eat the same food when we were with her, but it was just too unappealing. I’d rather enjoy my meals and die a little sooner. The anecdotal evidence that it might cure cancer is insufficient for me to give up the food I love.
At least think about the flaxseed and cottage cheese at 3 times a day.
Will do! Thanks for your concern and effort – I really appreciate it.
I can hear your voice when I read about what you are dealing with. Thanks for taking the time to write. I am so sad about Julia. You and your wife have been thru way too much.
Thank you for all your support. It’s very much appreciated.
Questionably pertinent to your post, but I remember a conversation I had with my friend where we agreed that the best times for us to engage in our respective arts (I’m a painter, he’s a musician) are when we are at the polar ends of the mood spectrum – either really melancholic or really happy. Being able to capitalize on that emotion often makes for some of the best expression. On the other hand, the grey area in between is tough – sometimes a lack of inspiration or a lack of need of expression stems from this, I guess? I also would like to comment that “mixed news” as a title for a blog post is always a better herring than a post titled “terrible news.” I know I’m grappling for the very thin silver lining, but still….
I think you’re right, the more emotional intensity there is the more motivation and depth of expression there is.
The silver lining is thin, but it’s not all bad!