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Not Clear Enough

I have gotten some feedback from last weekend's blog entry that I was not quite as clear as I might have been. I thought it was pretty obvious and in so doing, I think I skipped some parts that were not so obvious to others. I will try to make more sense of things.

As I think you know, I started feeling less well in August. I have gone back to the doctor's several times trying to find the answer. The question being, if this is not the cancer, is there something we can do about it? What I was not getting was the answer, what you are feeling is from the cancer. We can address the symptoms, but not the cause. Since I was not getting that answer, I kept asking and complaining. Hence, the CT scan and bone scan and then MRI. In the CT scan they found a mass in the area of the stomach. (I know, I know, I am repeating myself.) I asked if this mass was cancer or something else. He felt strongly that it is more of the cancer. And the reason I am having trouble eating and am losing weight. I have been losing at about the rate of 3 pounds a month. If I wanted to lose weight, well, then that would be a good rate, but I don't.

After the MRI, I called the doctor back. I am glad that I don't have cancer in the bones. I hear it is very painful. What they did find was that I have a fractured vertebrae (T12). I'm not sure how that happened. It may have been when I fell in the shower. Or not. It is from osteoporosis. Whatever showed up on the pelvic region on the bone scan didn't show up on the MRI at all, so it is dismissed.

I couldn't quite leave it alone, so I called again. I said to the onc that I felt we were still missing something because the area that was causing me the most trouble is my lower abdomen/pelvic region. Finally he said, make no mistake. That is from your disease. The CT scan is just not fine enough to find it, but it can still be causing me problems. Strictures, obstructions, etc.

The question is, What's next? The onc would like me to try Xeloda, which is an oral form of 5FU, a very well-named drug, in my book. The idea would be to reduce the effects of the cancer, purely palliative. I must say, I feel very little enthusiasm for this plan. I realize that to not do this would make the path certain, but I had a bad reaction to the 5FU. I suspect that I will have a similar reaction to the Xeloda. Frankly, the disease is bad enough. I don't need added effects of the drug on top. And I don't really think it will do much good, either. It didn't seem to do much when I took it before in intravenous form.

So, Daddy and I are taking some time on Wednesday before he starts at UH to go to the Gathering Place and consult with the medical librarian. It is so hard to find objective opinions. (Is that contradictory?) This is a hard decision to make.

Anyway, I hope that has cleared things up. If not, please ask. If you are confused, there is a good chance that someone else is too, so you would be doing a service to everyone who reads this blog to ask me to clarify. Thanks for staying with me on this. It is not always easy to write about.


Seems pretty clear to me, Stephanie! Claude and I are praying for you.

I'm sure you've gotten this sense from others, perhaps even yourself, but there's a part of me that wants you to try the 5FU, just, you know, to see, 'cause, you know, you never know. Can you remind me of just how 5FU didn't work for you? And why, with this previous experience, your onc thinks it's worth trying again in a different form?

Step by step:
Yes, I do get the feeling that others want me to try the Xeloda 'cause, you know, you never know. I am less enthusiastic. The 5FU made me sick to my stomach, throwing up 5 to 7 times daily. It gave me sores on my hands and feet to the point that walking was painful and I could only wear pull-on clothes because I couldn't do buttons or zippers. I developed mouth sores. The irritation went into my lungs and I developed a terrible cough, bad enough that on two occasions, different doctors thought I might have pneumonia. You may wonder why you haven't actually heard about this before. Remember March 2006? Yeah, I didn't blog. I was too sick from the 5FU and radiation. When I read about Xeloda, it says to call you doctor immediately if you have these symptom and discontinue using. What my current oncologist thinks is that I developed toxicity to 5FU because my liver doesn't metabolize it. So, if it doesn't metabolize 5FU, why would it do any better with Xeloda? He says the dose would be much smaller. And I have not found a single shred of evidence that Xeloda alone does anything for pancreatic cancer. Whereas I have a lot of first person evidence of it can do to me.

Believe it or not, I am still keeping an open mind. Okay, not all the way open, but slightly ajar.


I vividly remember what 5FU did to you. It was ugly. More prominent in my mind than the sores and the wardrobe and the nausea was the fact that you were so drained and burdened by the effects of the drug. It felt like you were very old and very frail. That in mind, I approach this Xeloda with an odd combination of emotions.

Here are my questions that I wonder about:
Will there be medically predictable negative consequences if you start the drug and then need to go off of it?
If you do go on the drug and need to stop taking it, how likely do you feel that it will leave you, personally, emotionally, spiritually, etc., unable to cope with your current symptoms if you cease taking it? In other words, will the potential side-effects be too great of a test for you to overcome if you do start to experience them?
Where are you going to draw the line? When to stop?

I'm also thinking about how unusual your cancer has been, and I expect that taking a risk like this would result in less-than predictable consequences. This could be a gamble that will give us all more time with you, but it may also be a gamble that will be negative. So far, we've been lucky, considering the cancer, and I am optimistic, but I also realize that we will need to be prepared for anything if you did start a new form of chemo. I support your decision either way, am glad that you posted all of this info, and would be happy to be a sounding board if you need to sort through stuff.

I love you and I admire your courage and resolve,

Maman, thanks. I couldn't remember whether the 5FU had done that to you, or the radiation. Basically, Kristen wrote my follow-up thoughts. :-)

Gros bisous,


p.s. who has the fabric markers? is it Kristen? Rachael? Could you bring them all to Thanksgiving please? I have a wee project for all of us. . .

I think they were divided between the two of us. I'll make a note of it so that I remember to bring them.

If I remember, I will bring them.


I am "one of the faithful" on Leroy's blog and read your post today. It seems that you are "winding down." What a good phrase to use re: cancer. That is the way it happens. You weaken, you disconnect, you stop working....and you sometimes lose support. I guess because of my hospice training, I'd like to pick up where others leave off. If you respond to this, I will. If you don't, I will respect your privacy.

Diana Kitch

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