Wednesday, October 31, 2012

Current Status...and Advice

I'll admit, my recent optimistic posts were always filtered through rose colored glasses. This time, it's no longer possible. Some of those "possible" tumors have actually continued to grow. The other areas have become stable, but in general the cancer has spread, albeit slowly, into lots of different locations. Some growth has even shown itself on the right side of the brain. There aren't a lot of choices for treatment. From what I can tell right now, the options are simple: stay with Temodar, but shift to a more consistent schedule where I take it every day for 6 weeks at a lower dosage, or; switch to CCNU with the hope that the areas still growing through the Temodar become hammered by the old school chemo. Of course, the best stuff is not held until the end. The best stuff is offered first. So you see, these choices are not particularly enticing in general. This makes it difficult to get excited. There is, of course, some hope. But more to the point, and more towards reality, I am hoping to enjoy whatever it is I have remaining. Taking a drug that will make my life miserable does not fit the bill. Especially since there is so little evidence in this case for misery to lead to a long life.

That said, it is still not entirely clear which of my options will reduce the misery and allow the most enjoyment I have left, whatever that may be. They each have there negative side-effects, and from what I've read, the risks move all over the place. So there, dear readers, is the moment I could certainly use some advice. You have the two options available. I'll be curious to hear your opinions.

9 comments:

  1. No advise except to enjoy whatever you can. You are in our prayers.
    (Friend of Julie Green)

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  2. Worthless in terms of advice, but let us know if there's anything else we can do. Chocolate delivery or something maybe?

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  3. My advice is to always seek a vetted second opinion ASAP - how about UCLA/Cedars or MD Anderson?? Please let me know if I can help in ANY way...

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  4. I'm sorry to hear the Temodar isn't working. I'm also sad there aren't better second- and third-line regimens. You've probably seen this, but I thought I'd link to it anyway. There seems to be some credible scientific evidence that depriving the body of glucose by going on an Epileptic's diet can slow brain tumor growth. If you're running out of options, it might be worth looking at.

    http://www.ncbi.nlm.nih.gov/pubmed/17313687
    http://www.time.com/time/health/article/0,8599,1662484,00.html

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  5. Yeah - wow. I wish I had some good advice. The "get a 2nd opinion" seems like a good line to follow. As for the two on the table, I see good reasons to do both.

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  6. I had been meaning to check in to see how the MRI went and I'm sorry about the news. I could never give advice like that through the blog (in part because I feel totally inadequate to do so) but if you need somebody to act as a sounding board and help you make the decisions I'm there for you. Call me and we can get together sometime either with or without the family.

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  7. Most unhappy to hear news. Indeed.
    Seems that quality of life warrants getting one, even two, second opinions. Unfortunately I have too many friends fighting cancer, yet this has revealed that different oncologists can have different experiences and recommendations.
    One approach would be hammerish for eg 3 mo, re-evaluate, go from there. The reasoning there has to do with rate of growth. Without being able to tell the future, it's hard to quite give up the hammer ... ;-)

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  8. I consulted my magic 8 ball but the darn thing keeps telling me it's unclear. Duh. While I can't be helpful in making a decision, I'm at least sending you good vibes and hugs.

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