When In Doubt, Ask

One of the things I enjoy most about working with Dr. G and Dr. LA is that both encourage me to call or email with questions. Their staff are all attuned to the needs of the patients (for good reason they all wear pins emblazoned with the Cleveland Clinic square symbol and the slogan "Patients First"). I've never had a question or comment dismissed as silly, or irrelevant, or unimportant, and I've never had a call or email go without answer for more than a few hours.

Once we got home from Cleveland on Wednesday, I felt exhausted and was ready to go to bed. I spent most of Thursday in bed, with all muscles and joints aching incessantly, no appetite, and no relief in sight from Dilaudid. I felt somewhat better on Friday, but decided to call Nurse Shari. I left a message: had she any reports of similar reactions on Votrient or any other drug that I am taking, or any idea what this might be? About 3 hours later, she called me back: "I would say that any reactions to Votrient would have occurred much more quickly after you started using it, and your results Wednesday were so good that I can't attribute it to anything else. I have heard of a bug going around that starts with a headache and progresses to muscle and joint pain; the muscle and joint pain is persistent and constant. The good news is that it seems to pass off in a couple of days generally. I think that might be your problem." We both decided that this pattern fit with how I felt, and that if I didn't feel better after the weekend, I should call again.

Today was much better; I feel almost back to normal. I'm so grateful to have such responsive medical staff on my case. They are quick to respond, they're reassuring, they are always happy to answer my questions, and they all work together to include me in my medical treatment. All I have to do is ask.

Nothing In My Brain

"I want to show you some beautiful pictures." Those were the first words we heard from Dr. LA in Cleveland yesterday; she suited actions to words and pulled up before-and-after MRI shots from the gamma knife procedure.

As of yesterday's MRI results, there is no swelling remaining in the brain, and all of the targeted lesions were eradicated. There are no new growths present. The procedure was completely successful. It was fascinating to see the images side-by-side. The largest lesion left a hole, literally, in my brain. Thank goodness we have more brain matter than we need ... Dr. LA is thrilled with the results, as are we.

We met also with nurse Shari, who reviewed my labs. Nothing abnormal showed up; my hemoglobin counts continue to hover just below normal, and we'll continue to monitor that as well as some of the other "normally abnormal" counts that I've accumulated over the years. We'll also continue to monitor my liver activity, as anecdotal reports have several Votrient users suddenly developing liver dysfunction. I'll be seeing Dr. LA every three months, and probably will see Dr. G about every 8 weeks, so we'll still be burning up the roads between here and Cleveland for the foreseeable future.

On the homefront: last night Cola suddenly howled, sprang into the air, and raced around the living room, disappearing down the basement steps before I could stop her. She stayed huddled in the basement all night and most of the day today. This was a mystery until I found the yellow jacket in my bathroom. My guess is that she (the Mighty Huntress) found the dratted thing, attacked it as she would any other insect, and was stung. I swatted it with a towel 3 times (each time it started stinging the towel), and finally crushed it with a bottle. I remember stepping on one of those as a kid; it took pliers to pry it away from my toe after I was stung. Poor little kitty!!

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.

First Day

We went to Cleveland for appointments on Friday - benchmark scans and a general check on my health and well-being. And, because I was still dealing with edema in my lower legs and feet, I had ultrasound exams on both legs. Our results were good: scans were stable and lab results were generally in good shape, though my hemoglobin levels are down to 8.7 from 11.4 at the last set of labs. The ultrasounds were added to the mix late in the day, so we didn't have final results when we left. By the end of the day I had my first 30-day supply of Votrient with instructions to begin on Monday if all the test results were good.

I spent much of the weekend stewing about the possibilities: side effects, my body's weaknesses and strengths, warning signs, and the like. Even though I had come to a decision, that decision once made must still be lived with. Without data to fold into the equation, one's mind becomes the hamster, endlessly chasing the "what if"s through the night on the treadmill of the unknown.

I did query my friend Bruce who started on Votrient about 3 weeks ago; we've gone through Sutent and Nexavar together, with some of the same reactions to the same drugs. I was reassured to hear from him that it's gone well; I can't tell you how much that calmed my fears.

Monday I saw my primary care physician Dr. MC to reassess my current maintenance meds; we changed out one blood pressure med for another, and reconfirmed my use of a diuretic to continue fighting the edema. Then I called Dr. G's office; Nurse Shari and I traded phone calls for a while until we finally talked together in late afternoon. The ultrasounds showed no blood clots so I was given the go-ahead to start on Votrient today.

I took a full dose, 800 mg, at 10:30 this morning. The day passed relatively normally (a meeting, lunch, and a lecture tonight) and I'm feeling relieved. So far so good; no immediate negative response, no big red flags. I'll be watching things closely, monitoring my blood pressure and looking for signs of trouble. Keeping fingers crossed - would love to have a med without side effects! What a concept!