How Things Are Going

I finished my course of 10 radiation treatments on July 20 and returned home on the 21st, completely exhausted and troubled with pain in my right shoulder. I spent much of my time the remainder of the week asleep, as the exhaustion was completely debilitating. I did have a birthday, I think, but I mostly slept through it. My friend Swanknitter had made arrangements to visit from the 25th, so I was happy to be awake when she arrived. I was still absolutely flattened by the pain, which seemed not to be responding to anything. I had been switched from Dilaudid to an Oxycontin/Oxycodone combination and I was feeling quite ill from the diminishing effects of the radiation, the new painkillers, and other accumulated problems. I was finally feeling better from the radiation by the 28th, to the extent of having an appetite and getting some energy back.

Dr. G had asked that I come back for new scans on the 30th so we'd have a new baseline set. Swanknitter and I finished up our visit on the 29th and she returned to DC to head home to Australia from there, and we headed up to Cleveland that afternoon. The scan results weren't great but they weren't hopeless either: I'd been off all forms of treatment since end of April, so no surprise to see progression in the lungs. Test results also showed that I had high blood calcium levels, and that was probably to blame for the complete exhaustion and slight confusion I'd felt after getting home. I was given a two-hour, two-liter infusion of saline, and an infusion of my old friend Zometa.

Dr. G also made arrangements for me to meet with Dr. R of the Pain Management Clinic. Her recommendation was to continue on a reduced dose of the Oxycodone, the dose of Oxycontin that I was already on, and to add to this a prescription for Neurontin. Dr. R's nurse Brenda said, "As it is, nobody knows how it works or what it does, but it works and that's all that most people ask."

I was able to fill my first month's prescription for Afinitor before we headed home, and Saint H handed in my Neurontin prescription to fill at my local pharmacy after we got home.

I sat down last night and wrote out my pill schedule since so many things have changed: we start at 7:00 a.m. and can run continuously through 24 hours every 2 hours, if I'm awake, though the blessed Brenda says "we don't set alarm clocks to take pills, for heaven's sake!" I like that thinking. Also, last night having been the first complete cycle including the Neurontin, I'm thrilled to report that I have very little pain in my shoulder for the first time since November of last year. It's great to be witness to one of those little mysteries of medicine; I don't have to know why Neurontin works, either; just the fact that it does makes me happy. I look forward to improved conditions in the coming days. Wah-hoo!

Song Virus

My friend and sister C2, who sings in a folk trio, uses this term to describe the tune that implants itself into your head and your routine. Generally it's something obnoxious or inappropriate, and you just can't rid yourself of it until it's supplanted by something equally obnoxious or inappropriate ...

For the past several days I've been attacked by Disney's "It's a Small World", thanks to my friend A who sent me a jovial message on Monday. Over the weekend she visited with friends and family in her hometown and was chatting with her niece and nephew's maternal aunt. I don't know how the conversation turned to this, but the aunt is a nurse at Cleveland Clinic. It turns out she knows me and St. H rather well - she's none other than my sweet nurse Vicki whom we met on the last clinical trial. Yes, it is a small world. I just wish that song would go away!

Yesterday was scanning day at Cleveland Clinic, my first since starting Votrient in April. I'm officially off Votrient, as it did nothing to slow down my lung lesion and, indeed, I've developed seven tiny lesions in other areas of the lungs -- both lungs, unfortunately. Dr. G is working on options and schedules - looks like we'll check into radiation therapy on the right lung lesion, primarily palliative as I'm starting to have quite a bit of pain from it pressing against the shoulder blade but possibly as a debulking measure if they think it's possible. And sometime soon I'll be starting on Afinitor, the oral mTor-inhibitor. Nothing like pushing forward regardless ... I'll post more as soon as I know more.

Actually, Mr. Yuk Is My Enemy

I sent a message to Dr. G and Nurse Shari last night. I'd spent that truly miserable week with nausea and vomiting, though never so bad as when I was on Sutent, and had to finally give up on the sulfa drug rather than spend all my time in bed or the bathroom. Some of the nausea and stomach upset persisted until early Sunday morning, by which time I felt so rotten that I curled up in bed and stayed there quite late. When I got up I was still so woozy that I just couldn't face eating or taking my dose of Votrient, so I didn't take it.

Surprisingly, within a couple of hours my stomach had calmed, and the weird swallowing problem I've had for over a month had gone away. My appetite returned, and I was feeling pretty fabulous for the first time in a long time. It's funny how it's borne in on one, by the absence of symptoms, how quickly one can feel better - the misery becomes a distant memory in no time.

So, I thought I needed some advice from my medical professionals - should we consider lowering the Votrient dose? How much of this could be blamed on the nasty sulfa drug? Was it possible for symptoms to disappear so quickly, or was I just so relieved to feel better that I was hallucinating? Would they condone lowering the dose or would they want me to stick it out until my first scan in June?

I called Nurse Shari in midmorning as I'd not heard from her. Turns out Dr. G isn't due in until later today, but she was able to give me the following tidbits:
- The nausea and vomiting was almost without doubt due to the sulfa drug, as it's notorious for causing severe stomach distress. I should add it to my no-no list and forbid any doctor from giving it to me again (my inclination exactly, and thank goodness there was no hesitation on that decision)
- The remaining symptoms are probably due to the Votrient and she suspects we will reduce the dosage level. All I have to do is wait for Dr. G to arrive and have time to decide course of action with her, and they'll relay to me.

I really enjoy participating to this level in my own care - perhaps it's perverse in some people's view, but good heavens! I feel like I have some control over what's happening. Why persist in misery just because "that's what I was told to do"? That may have been the traditional approach to medical treatment ("Sit quietly and take the nice medicine, that's a good girl!") but I certainly have no use for it.

I am thrilled to report that, after several years, barn swallows have located one of the brackets Saint H placed on the internal fascia of the front porch. They are placing a careful array of mud pellets for a nest, right in view of the living room window. Cola is absolutely fascinated. Our house is becoming a handy roosting spot for the barn swallows; this morning I was serenaded by a throng of them waking up from roosting on the roof. A raucus symphony, indeed, but one of the most welcome sounds I can think of.

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!

All-Nighters

I've had lots of near-sleepless nights since the gamma knife procedure. That's due in part to the steroids, I know, but I've had a lot to think about since the middle of February.

When we left Cleveland Clinic on March 1, we had information on 4 drugs, a rough idea of schedule needs, and an assignment: choose the next drug I wanted to use by the end of the week. You may be wondering what goes into making such a decision, and I can tell you it's not easy. The four drugs we were looking at were: Votrient, Torisel, Avastin, and Afinitor. Here are some of the factors we considered:

Schedule - How quickly can one begin a new therapy? What might influence the schedule?

Risks - All of the drugs involve varying types of risk, though certainly better odds than doing nothing. Of the four, which posed the most immediate threat to me based on my individual response to the drugs I've taken so far?

Efficacy - What's the drug's mechanism of action and track record to date? Is it similar to drugs I've already taken, or is it something new that we'll have to monitor closely?

Side effects - Are the side effects controllable with other medications? Is there evidence of any new or particularly threatening side effect that I haven't encountered with other drugs?

Costs - What is the drug's cost? How much will insurance pay? How much will I pay out-of-pocket?

Other considerations - Are there some inherent constraints that will control access, schedule or other points on the list?

Taking these factors, we came up with the following concerns:
Schedule - In this case, Dr. G wanted me to start as soon as I could, possibly by March 8. The problem: steroids would preclude concurrent use of two of the four drugs, and my late-night driving adventure spelled the need for continued steroid use; therefore all four drugs return to the list of possibles. My start date: on or about my next appointment, April 2

Risks - Risk assessment is the hardest part of the equation and is closely tied to the drug's efficacy and side effects. Each person's reaction to a drug is very individualized. So, while I know that VEGF-inhibitors may increase one's risk for internal bleeding, not all VEGF-inhibitors cause me to bleed (so far only Sutent holds that distinction). Newly approved drugs try another approach, with a new drug pathway to try, the mTor inhibitor. My leaning is to exhaust all the drugs of a single class before trying something new; hence my inclination to go with Votrient first. But the most serious side effect of Votrient is the potential for liver failure, and given the liver damage I already have, this gives me pause.

Costs - I'm very lucky; these drugs are horrendously expensive and all require a "pharmacy override". That is, I must use my drug plan's special pharmacy service so that the cost benefits are spread over the entire pool, or else I must pay a good portion out-of-pocket. Heck, yes, I'll let them mail the drug to me and pay my normal co-pay.

Other considerations - Oral drugs can be mailed directly to me; drugs requiring an infusion (in this case, Torisel and Avastin) would be administratively harder to deal with. With infusions, the hospital or facility administering the drug probably would have to receive the drug. Would it go to their pharmacy, in which case would I have to pay more for it? It's not a scenario I'd like to test out just now.

So, my choice became "an oral VEGF-inhibitor", which leaves me with Votrient. As we don't have any idea how my body will react to a new drug, I'll be "baby-sat" off and on while I adjust to the medication and dosage level. I'll probably be traveling to Columbus during the day, sitting and knitting at C2's house. That way should I develop any problems I'm 10 minutes away from the OSU Medical Center, as opposed to being 20 minutes from the nearest hospital here and over an hour from the OSU Medical Center.

There you have it - a breakdown of what is, in essence, a life-and-death decision. It's not something to be taken lightly, but we can certainly weigh all the factors as part of the whole. Given enough information, I can analyze just about anything, I believe, and come up with a decision that I'm happy with.

I'm happy to say that my diaper rash has finally cleared up. Now I've got pitting edema in my lower legs. What I've read isn't encouraging but at least we're doing what we can to combat it. Will be interested to see what Dr. G wants to do when we go up on Friday.

Spring Forward

Nothing like having all the signs of spring cram themselves into a couple of days: We have lost nearly all the snow from the fencerows with temperatures in the high 60s for two days. Yesterday the spring peepers burst forth from the frozen mud in the pond, and a red-winged blackbird parked himself on the garden fence and started calling for a mate. Tonight we barely heard woodcocks "peenting" and tumbling over the pasture through the din of the frog chorus. Let's bring on the barn swallows! I'm ready for baseball!

We have "sprung forward" with a decision, so to speak. Saint H and I go to Cleveland on March 24th for a new baseline scan, and I will start on Votrient. This was not an easy decision by any means, and I'll be outlining all the factors we took into account for making the choice over the next few entries. In the meantime, I'm content that we've made the best choice we can, and am ready for the next step.

Brother P is visiting. I'm having a great time cooking for company - so far moussaka and chili have made the list, with corned beef and trimmings planned for Sunday. Steroid therapy ends on the 18th, and with it perhaps my appetite, but it sure has been fun while it lasted. Sister C, I promise to send him back before he explodes!

Roly-Poly Ravenous

Steroid therapy has been interesting to say the least. For the past two weeks I've been treated aggressively to bring down the edema and cranial swelling, with a planned titration through mid-April. So, I've bounded around the house with more energy than I've had for years. I've worked on lots of little projects that I've ignored for ages. I've stayed awake for hours.

I'm also eating everything in sight. For years I've been able to go out for dinner, eat enough to be satisfied and have another meal the next day from the leftovers. Not anymore! I'm eating everything on my plate and sometimes polishing things off from Saint H's plate as well. I can't go for more than a few hours without finding myself in the kitchen, putting something in my mouth. The "something" is generally good for me - cheese and crackers, fruit, nuts, the like - but oh, my goodness. How do parents of teenagers (not on steroids, hopefully!) manage to keep them fed? Today I had breakfast twice, two snacks, lunch, and dinner; and that's the way it's been for two weeks, for heaven's sake. My night-time reading has centered on cookbooks, just as was the case when I was on Sutent and couldn't eat at all. At least I can indulge, cook, and eat this time around.

This may be changing - Dr. G wants me to titrate off more quickly, so tomorrow we start stepping down doses drastically. If I begin having cognitive problems again we'll readjust the steroids for effective control.

Sometime this week I need to make a decision about where we go from here. I'll be weighing options and will report back what we do.