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Jay Lake
Date: 2012-12-13 05:24
Subject: [cancer] The latest questions for my oncologist
Security: Public
Tags:cancer, health, personal
In case you're wondering what cancer patients and their doctors talk about. I see my oncologist every two weeks. This is Friday's crop of questions, some of them in the light of the fact that my forthcoming chemo is my last before the surgery break.

1) Can I have my teeth cleaned sometime in January right before we resume chemo, or should I wait until this summer after chemo is completed?

2) Do you think I should pursue the Illumina testing post-operatively? As I understand it, the testing we did recently was checking for those specific mutations listed. Illumina would be sequencing the whole genome of my normal cells, plus the whole genome of a couple cancer cells, so it's a much more thorough process. Do you believe this would be of clinical benefit?

3) My hands cramped shut last weekend. Painful, cold claws that I had difficulty opening up again. So far, it's a one-time event. Does this indicate potassium deficiency? Or is this just peripheral neuropathy weirdness?

4) I've had a constant side effect of low-level bloating and cramping in my gut which makes it difficult for me to sit up in a normal position for extended lengths of time. Basically, discomfort that eventually builds to low grade pain. As a result I spend the vast majority of my time horizontal or nearly so. I don't remember this from my previous chemo series. Is there any significance to this issue? Or just another one of the trials of life on chemo?

5) Given the apparent disappearance of my third tumor and the halting of the rather rapid growth of the other two, is it fair to say that this chemo series has been more successful than the prior two? Or is that question even meaningful? (My first chemo series was post-operative, so there was no tumor shrinkage to evaluate, but I metastasized again less than a year and a half later. My second chemo series was configured like my current one, and as I recall, the tumor stabilized but did not shrink significantly, and I again metastasized, multifocally, eight moths after the end of chemo.)

-- I realize these next few questions are really for [my surgical oncologist], but I'm curious as to your opinion.

6) Do you have any sense of when we'll have the surgery? My assumption is the second or third week in January, to give me 4+ weeks of spacing from chemo to be in good enough shape to tolerate it.

7) When do you want me to see [my surgical oncologist]? Or is that up to them?

8) Will we be doing more imaging in December or January? Is a PET scan justified? Also, the Johns Hopkins team had felt pretty strongly I should have an MRI pre-operatively. Is that last up to you or up to [my surgical oncologist]?

9) In terms of the surgical plan, will we be taking tissue where the small tumor has receded or vanished? I assume so, but I'm unclear on best practice here, and/or the clinical thinking.

Some of the things I have to worry about are banal to the point of inane, like teeth cleaning. Some are just weird, like my hands spontaneously folding into claws. And some are deeply serious, like surgical logistics. It's a wonder I ever get anything normal done.

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User: a_cubed
Date: 2012-12-13 14:13 (UTC)
Subject: (no subject)
I am continually amazed by your openness about the progress of your illness on here. Pursuant to your recent questions about whether people read your cancer posts, I do wonder myself what my rationale for reading them is given that while I know/have known many peole with cancer (I've seen some estimates that one in three of our acquantainces on average will get some form of cancer at some point in their lives) luckily few have been close relatives (one older mid-distance relative died of womb cancer at 92 - they were aggressively treating it but couldn't prevent it killing her - she didn't look 92 and they don't aggressively treat cancer at that age unless you're in really good shape for it). I'm not sure except that I feel these kind of things should be faced up to and your writing is generally compelling enough to feel worthwhile reading even if somewhat harrowing at times (though also often leavened with some humour).
Thank you.
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Jay Lake
User: jaylake
Date: 2012-12-13 15:58 (UTC)
Subject: (no subject)
Thank you.
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User: klwilliams
Date: 2012-12-14 02:29 (UTC)
Subject: (no subject)
The teeth cleaning isn't inane. You can damage your heart due to infections and other side effects of cleaning your teeth. (The guy who played Lorne on "Angel" died from congestive heart failure brought on from a teeth cleaning.)
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Rowan aka: The Seticat: * cat - medical - djinni
User: seticat
Date: 2012-12-14 03:48 (UTC)
Subject: (no subject)
Keyword:* cat - medical - djinni
Tooth cleaning and other dental procedures make perfect sense to double check on. You're whole immune system is 'wonky' [one of those exceedingly precise medical terms]. The last thing you'd want to do is run the risk of systemic infection by getting oral bacterial into your blood stream via the gum irritation/micro-bleeding that can often happen with cleaning.

Those are exactly the type of questions that need to be asked along with the bigger, more usual ones.
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