Erratic schedule

I can’t wait to call my doctor’s office in the morning; so much so that I’m up again in the middle of the night!

Well, it’s not quite the middle, as I’ve slept less than three hours, but I did wake up in mid-hot-flash, feeling like I might need some more pain medicine, and now waiting some until the right interval has passed and I’ve burned off a bit more energy.

Medication juggling act: Cancer involves a mammoth effort of pain and nausea management. I’m looking forward to the feedback on how to proceed. I think we’re on the right track, but I want to get back to figuring out whether Gleevec is “my drug” and if so, what’s the correct dosage

Brutal day

I slept pretty well last night; fitfully, but relatively pain-free. When I woke up at 3am I needed to do something to get me back to sleep, so I got up and washed dishes!

By morning, however, the picture had changed dramatically. When my ex called to check on me, as he does every day, I was in a bit more pain, and my energy was so low I could barely move to get to the phone. A couple of phone calls to the doctor, and it became apparent I needed to see her, probably to address a recurrence of anemia.

Fortunately, Thursday is his day off, so my ex drove me to the city for blood tests and appropriate treatment. The lab numbers came as a surprise: No anemia and most counts as good as could be expected. But I was in a lot of pain by that point, and let me tell you: Fighting pain is exhausting!

There are other things going on, of course; I’m taking a huge number of drugs, each with its own influence on blood counts. The juggling act becomes complicated in that some of the drugs make me groggy to the point where I lose track of what I’ve taken.

My doctor, who’d just seen a patient with severe respiratory disorders from Gleevec, didn’t want me to also reach that state; she brought her intuition and recent experience to bear and said, “I think it may be a toxic reaction to Gleevec. I want you to go off it for a couple of days.”

NO!

She saw the panic in my eyes. “Not permanently; we may need to adjust the dose down. Every patient is different, and we have to find the correct level and schedule.”

In the meantime, we also need to get the pain under control. She wants me to be pain-free nearly the whole day, not just the four-to-six hours I’m now experiencing, and not just while I'm sleeping; then we can start cutting back on pain meds to where I’m not so dependent on them. And all this takes time, since changing too many variables at once calls reactions into question.

I left the Cancer Center with a couple more prescriptions, a huge checklist of drug doses and scheduled times, to keep my intake organized, and a lot of advice about how to handle situations like “breakthrough pain” and nausea.

On a more personal note, I’ve been trying to keep this blog up-to-date. In addition to keeping friends informed, it helps me to achieve organization and continuity. But it’s very difficult. The physical and energetic swings come fast and furious, and there are days, even if I can get out of bed, I can’t sit up and rouse my focus long enough to get something written. Tonight, I’m feeling a bit better, but am plagued by nausea and vomiting.

Tomorrow is another day.

Gleevec: Anecdote

My doctor has a patient who was ravaged by melanoma. The woman had reacted badly to many of her treatments and had reached the end of her rope. She entered hospice, where she expected to last out the rest of her life in relative comfort.

My doctor noticed that this woman’s melanoma had started in moist lesions, but initial suggestions to try Gleevec met with resistance. The woman was convinced her time was up and didn’t want to go through the pain of more experimentation. My doctor, however, prevailed, and the woman started taking Gleevec.

Several weeks later, the woman reports that she is back on the treadmill, back on the tennis court; and best of all, she’s been kicked out of hospice! She knows she’s getting better because her kids don’t call anymore.

Lately I've been thoroughly consumed by pain management and exhaustion management. It finally hit me this weekend, there's one outstanding question: will I respond to the drug? There will be anxiety in this household until I get an answer to that. But in the meantime, I do know that Gleevec is capable of miracles.

Gleevec: Explanation

I was talking with a friend about my previous entry about Gleevec, and found she’d come away with some confusion, an unintended interpretation. I’ll try to put my own understanding into better perspective and explain a bit more clearly.

Results of initial Gleevec testing with CML (Chronic Myeloid Leukemia) came as a surprise to researchers. Ten years ago they were only looking to verify its safety to test on people rather than its effectiveness; they weren’t expecting to find such high response rates in such early trials. But what they saw drove them to look at the patients more closely to see what was common about them. That’s when they discovered the “Philadelphia chromosome”, named for the lab where it was discovered. This chromosome malformation they had discovered led them to identify the first protein identified as a cancer-causing agent.

When they looked around at other cancers, they found similar reactions and high occurrence of the defective chromosome with GIST (Gastrointestinal Stromal Tumors). Soon after that, the FDA approved Gleevec for use with CML and GIST, making the drug commercially available.

In the meantime, other researchers in other types of cancers jumped on the bandwagon. Maybe they’d find a similar genetic mutation and the high response rates in their disciplines as well. Some of those other researchers, of course, dealt with melanoma.

There are experimental trials currently underway with melanoma to prove the concept. In order to get into such a trial, the drug company requires a four-week genetic workup to identify presence of the deformity. But the doctors on the battlefront have their own anecdotal evidence to identify who is most likely to be receptive to Gleevec treatment. My doctor and her geographically far-flung colleagues have independently observed that melanoma patients whose primary lesions start in two different ways tend to be the best candidates, while other, more “traditional” forms of skin lesions don’t usually respond. The responsive cancers start in moist places of the anatomy, or on the palms of hands and on the feet.

My doctor added her own 2-plus-2 and realized that I’d be an excellent candidate for Gleevec. She didn’t want us to wait four weeks for the drug company to come up their own verdict about me when her own intuition told her to go ahead. We were able to start me on the drug right away because it is commercially available.

Catch-up: Off chemotherapy

“You’re not getting chemo today.”

For a variety of reasons, my doctor pulled the plug on this latest course of chemotherapy treatment. Wednesday’s blood labs showed low platelets again, which alone would have postponed this round of treatment, but in short, I haven’t tolerated it well at all, and it’s not working.

But that wasn’t the whole reason. My doctor was grinning.

“I was hit with divine inspiration. There’s a new drug. It’s experimental for melanoma and I can get you into the next round of study, but there’s a four week wait while they work up a genetic profile to see if you meet the criteria. I don’t want us to wait and we don’t have to. The drug has been approved for other forms of cancer, so it’s available commercially. I just wanted to talk to you about it first so I can have it overnighted to your house and you can start taking it tomorrow. I guarantee, by the time they can get the study done, we’ll know by your response if you fit the profile.”

She then proceeded to tell me about Gleevec.

Gleevec is not chemotherapy. It’s not toxic, has minimal side effects; it doesn’t cause you to lose your hair. It’s a drug that takes a different approach. Instead of targeting cancer cells and everything else in its path, it goes after specific proteins exhibiting a particular genetic mutation. A high correlation of response was initially noticed in patients with Chronic Myeloid Leukemia (CML) and certain gastrointestinal tumors (GIST), which tend to exhibit these defective proteins, the first case of proteins known to cause cancer.

Now here’s the kicker: studies are underway to find other cancers that exhibit the same type of genetic abnormality. In the case of most melanomas, Gleevec has no effect. But various independent studies have shown that there are a couple of forms of melanoma that start in “non-standard” areas, which do tend to have the defect. The first type is in moist areas of the anatomy, such as sinuses, mucosa, and vagina. The second type is when the primary lesion is on the palms of the hand and on the feet. If you remember, my initial lesion in 2002 was on the side of my heel!

My doctor’s excitement about this new drug is contagious. I took my first pill last night. There’s so much more to write about it, but I need to get some sleep tonight. Look for new posts tomorrow.