Normalcy?

Well, I'm back in my own shoes, wearing regular socks, and requiring nothing more drastic than an occasional slathering of lotion to keep the skin on my legs and feet supple. The edema finally responded to slow, steady use of a diuretic, and I'm pleased to put my ugly shoes away for the next time. It's such a relief to abandon yet more medicine, and to see results that require only patience and time.

Actually, I so seldom "see" results that I hardly know what to think. We in the Renal Cell group always kid one another: If you've got side effects, your meds must be working, unless the side effects get out of control to the extent that one must stop taking the medication! But side effects are generally the only outward sign of a medication's "presence" in the body. I have to rely on scans and test results to know how things are going, and even then I'm at the mercy of someone else's interpretation of those results - I can't make any judgement for myself by looking at the test results, or viewing the scans. Fortunately we have tools at our disposal.

I mentioned long ago a great resource, Netwellness, which is a service of 3 major universities in Ohio for composite medical information that's unbiased and definitive. One of the most useful components of that service is the Medline Plus Medical Encyclopedia, where one can look up test names to see what the test is measuring, what's "normal" and what the test results indicate. All of the Medline Plus content is available without charge to anyone with an internet connection; there are lots of ways to get to the Medline Plus site but I like to recommend Netwellness because of the other resources available there.

Saint H got a nasty surprise yesterday. After suffering all weekend with a mild toothache that gradually worsened, he ended up in the dentist's office yesterday afternoon, getting a crown. Further, he's scheduled for another appointment tomorrow morning for a crown on the tooth next to the one treated yesterday. Ah, the wonder of growing older - I know it's worth keeping one's own teeth as long as possible, but egads it can be costly! Guess we'll cross that bridge when we come to it.

Testing, Testing - Part 2

As the patient, you are entitled to a copy of your medical records, including all test results. I discuss the tests with my doctor, but I also keep my copies in a file so I can refer back to them later.

Sometimes when I go back to look at the test results, it just looks like alphabet soup. Some of the tests have similar names and/or acronyms. If I'm not talking them over with my doctor at the time, I can feel like I'm in a medical maze. So I've found some sources that I use to make sense of those reports. You can search any or all of them for quality, reliable information.

MedLine Plus Encyclopedia

Harvard Medical School Family Health Guide to diagnostic tests

WebMD A-to-Z Health Guide to medical tests

Lab Tests Online (use the "Search" feature; easier than scrolling through their lists)

I go to the local podiatrist on Monday - is the sore spot on my left foot a blister, or is it hand/foot syndrome? Whatever it is, is sure hurts!

Testing, Testing - Part 1

Renal cell carcinoma is a puzzler. The cause is unknown. The symptoms are vague and don't seem to add up to anything, so it's hard to detect. For instance, my symptoms included:
- sudden spike in blood pressure
- fatigue
- sharp pain in the lower back and right side
- insomnia
My doctor at the time didn't add these up though I asked repeatedly; maybe I can forgive him those. What he didn't follow up on was a test result showing blood in the urine - that should have been checked, though he said the amount was "negligible." Doctors I've worked with since then have said any blood in the urine should be considered an indicator that something's wrong, somewhere.

Research is underway that may lead eventually to a simple blood test for kidney cancer. It's in early stages yet and the mechanisms of the test are complicated beyond my comprehension, but I'm glad to hear that it's more than a rumor in the community. Will it come in my lifetime? Probably not. But two new therapies have been developed and approved in my lifetime since diagnosis, so maybe that's not such a farfetched possibility.

I seem to be adjusting to the increased dosage with little more than the expected side effects - commensurately increased number of diarrhea episodes, increased fatigue. I'm making certain I have plenty of Immodium on hand; we'll see how things go.

On being a perfect patient

Every time I check in for a procedure, or am in the hospital, or see a new doctor, I get asked a set of questions. The questions are consistent, almost unvarying, and depend on my memory for answers.

Sometimes I'm not capable of answering those questions, and sometimes the person with me doesn't know enough details to answer for me. So I've made up a sheet that I carry with me at all times, that hangs on my refrigerator, that my friends have copies of ...

The sheet lists my name and address; my emergency contacts; my doctors, their locations and phone numbers; my diagnoses; treatments I've taken and the dates; surgical procedures and dates; allergies; medications and dosages. Nurses are happy to have a list to consult and, in at least two emergency room settings it's saved time and given ER personnel concise answers under trying circumstances.

I keep thinking of things I should add, like my blood type, height and weight, plus details about my mediport. It's up to me to think ahead - no exaggeration that my life could be at stake.

Lies, damned lies, and statistics - Part II

When I was diagnosed in 2000, there was only one FDA-approved treatment for kidney cancer, high dose interleukin-2. In action, the patient's immune system is destroyed and rebuilt, on the theory that one's body will then be able to recognize and destroy cancer cells. It's a very toxic treatment, it requires hospitalization, and it's not terribly successful: about 20% of patients who receive it show any benefit, and only 5-7% are placed in remission, though that remission is generally long-term (decades). Nevertheless, as the only approved option, it was routinely prescribed in hopes that the patient might be "one of the lucky ones."

A second immunotherapy, interferon-alpha, has also been used to treat renal cell carcinoma. One of my doctors has referred to it as "a drug looking for a symptom" - that is, in his opinion, it's widely used for anything with T-cell involvement, but has not yet provided a "knockout blow" to anything. It is FDA-approved for use against hepatitis C.

In December 2005, the Bayer drug Nexavar was approved for use in kidney cancer, followed in January 2006 by the Pfizer drug Sutent. Both are biologics, and they are antiangiogenic. Tumors require enormous blood supplies and essentially create a vascular system for themselves through a process called angiogenesis. Antiangiogenic drugs fight this ability; tumors starved of blood supply die. (Antiangiogenic theory was developed by Dr. Judah Folkman. May his shadow never diminish.)

These and other developing drugs are known as targeted therapies. They work on the molecular level and target specific actions by the cancer cells. It's still too early to tell what these will lead to, but the results from clinical trials to date are overwhelmingly positive with recorded high levels of response rate or stable disease state. There will be more testing as time goes on - drugs in combination with each other, drugs in succession, drugs as first-line vs. second-line therapy options, etc.

I feel very lucky to have had multiple options open to me for treatment. I've tried them all and my options are probably still open should my Nexavar treatment course be unsuccessful.

Aches and pains

Happy 4th of July - I hope that all your fireworks have been bright and safe!

I've been troubled the last few days with sharp stomach pains, intermittent but coinciding unfortunately with mealtimes. Time to go back to my files and research all the side effects for my 8 prescriptions, I'm afraid. This can be a nuisance - thank goodness for the MedlinePlus drug information files on the Internet, as those patient information leaflets always seem to disappear when one needs them.

Once I've looked at all the information I can determine whether or not this paticular problem might be a side effect of one or more drugs (so far, I've found it for at least 3 of my prescriptions). I'll see if the symptoms get worse. If they don't I'll talk with Dr G next week when we're in Cleveland. If they do I'll call his office tomorrow.

Gone are the days when every ache and pain made me panic - might this be a sign of the cancer's return? Does every other patient feel this way or am I the only one? Am I going to be [crippled, bald, incapacitated, incoherent, comatose - whatever!] for the rest of my days because of this?

I know my body well enough now and have lived with renal cell long enough to know that I'm most likely to be in trouble if I develop severe diarrhea or severe confusion. Almost everything else that I've come across so far can be controlled through dosage adjustments or other medications. It takes a while to gain that level of - call it confidence - in interpreting one's symptoms. And, I am never going to try to self-diagnose. I am my first line of defense, but the heavy artillery remains in my doctors' hands.

Much to Marmaduke's displeasure (the 19-lb one-eyed Maine coon cross who's sprawled over my papers next to me) I'm heading into town for more adventures at the old house. Cat logic: you're here, I'm here, why should you want for more? Telling him that it's only temporary doesn't cut it ...

Paperwork, arrrghhh ...

Don't you just love getting mail? Don't you just love getting mail from places with names like "Patient Financial Services" or "Patient Accounts"? I admit to some palpitations every time I pick up the letter opener, wondering "what have they screwed up now?"

Over the past 18 months I've gotten pretty good at keeping things straight. I have a 2" notebook with sections for each entity I deal with (Cleveland Clinic, OSU, and my local clinic), plus a section for the "explanation of benefits" (EOB) statements from my insurance company, and a manila envelope that I've 3-holed to corral all of my receipts. When something arrives from any one of my financial friends, I go over it quickly to see what's pending with insurance, what's been paid and what they say I'll have to pay. Sometimes I get quite a heart-stopping surprise, like the bill for over $17,000 representing numerous espohageal scopes that I had during my month of bleeding episodes last fall, or the $4,300 bill for emergency room services at my local hospital that memorable month. Turns out in both cases the charges were not turned in to the insurance company before I was billed.

Sometimes there are just "duh" moments on somebody's part, where codes are wrong and insurance won't process a claim until those codes are corrected. Sometimes there are genuine goofs, where charges are double-billed or payments aren't noted. It's not easy to compare the bills to the EOBs. Dates of service don't match; reference numbers don't match; descriptions of service don't match. Where I find problems, I use highlighters on the EOBs to flag discrepancies, and write the claim number, check number, payment date and date of the EOB on the bill. This seems to be a good thing for me to do when my meds keep me awake (sick, I know). I have a 3-in-1 printer and so far the copying function has been dedicated to straightening out financial statements. I send out lots of photocopies and so far things have gotten resolved with me going to debtor's prison. On the whole, though, getting the mail isn't nearly so exciting as it was when I was a kid!

I don't know what I would do without insurance - I get myself worked up enough over bills that are screwed up but that will be sorted out eventually. I will not get started on the whole issue of health insurance and medical costs in this country, as the level of inequity is so appalling it makes my blood boil.

You can't pick your relatives

No, this won't be a sob-filled post about my evil family - I love my brother and sister, and my parents never beat me (though there were probably times they should have).

My brother's first words, on seeing my shaved head: "You look like Uncle Bernard - or, actually, you look like Grandpa Ray." Yep, just the words a girl wants to hear (though if I had bushy eyebrows I could look like Uncle Floyd too). We know we get external similarities from our ancestors, but what else?

Renal cell carcinoma has several forms - the most common is clear cell, with small percentages of patients having chromosomal or papillary forms. What has become clearer with time and a better understanding of the human genome is that there are genetic predispositions toward RCC. One genetic malformation at 3-p25, for instance, is a marker for von Hippel-Lindau syndrome. VHL expresses itself with various types of cysts, tumors and cancers including RCC.

You might try a little exercise: go back 2 or 3 generations. For those who have died, use your memory to "fill in the blank" about cause of death, and if you're really serious, get death certificates. This is roughly what I found out:

Paternal grandfather: died age 88, complications of diabetes
Paternal grandmother: died age 90, ovarian cancer
Father: died age 66, esophageal cancer
Paternal uncle: died age 84, natural causes

Maternal grandfather: died age 65, pancreatic cancer
Maternal grandmother: died age 42, kidney failure
Mother: died age 77, complications of diabetes
Maternal uncle: died age 71, heart attack
Maternal uncle: died age 75, adrenal cancer
Maternal aunt: died age 41, cerebral hemmorrhage

The further back you search, the less precise the information and the harder it is to find medical records. I really don't know about my maternal grandmother's death, other than that she died when my mother was 10, in 1933. She'd been ill for years, and had gone several times to a sanitarium in southern Indiana, where "taking the waters" was supposed to be good for kidney ailments.

Do yourself a favor - ask questions now, while there are still "grown-ups" around. I wish I had asked more questions when I still had parents and grandparents around.