Archive for October, 2011
Have you had that breakup moment where you’re just feeling better and then the heart break song comes on the radio and reminds you to be sad or angry? I have. I think most of us.
We all have ails large or small, be it the IRS, a certain in-law, a work grudge. It’s good to forget. At least for a while. So what I don’t like today are The Reminders. Having cancer doesn’t have to be life consuming (til the end) but some days there’s a lot of awareness.
If every meal comes with limits and restrictions or a “price” to pay later. I remember.
When I lost my voice (half actually) that was harder in a way than other things because my rasp or hoarseness is a reminder. Especially when I want to be loud and that’s just not possible. Probably some benefit to society though. :)
When walking to school was hard and weird, that was a reminder. Now that I avoid walking it’s more like a straight jacket than a hangnail.
Somewhat, I’m accustomed to my limits. Just a a few hours at work. Less social drive. But I realized the other day if I just woke up one day in 2008 and felt like this, I’d go to the emergency room, sure I’d been bit by a terrible spider or suffered a stroke in my sleep.
I used to get a reminder from people giving me The Look. That sadness, that pity. Mostly I trained people away from that and the duration of my battle has inured people. I also know that after a few minutes of conversation the energy will turn up and I’m not really threatened by people’s fears and worries.
Did you see the movie “50/50?” Interesting film to see as a chemo patient, as a survivor. I do enjoy the immersion of reading books about cancer while on the drip. To read about the latest in digital imaging and then go to the radiologist. To have been on a clinical trial and then attend a lecture about trials and speak to a group.
The Big Reminder is that I’m alive and that’s not assured and it’s good to have another hug, another cup of tea on the porch and another day.
When the mind and body are both beleaguered, I feel like a single, albeit sad, thing.
Right now the mind is good… curious, optimistic, patient.
The body, my body, it’s having a hard time. The feeling that “I” am riding around in a broken down Chevy puts mind and body at odds.
Right off, typos are more common. My finger tips don’t feel the keys in the same way. Maybe numb, maybe pins and needles. Also like wearing gloves that are too tight. I find myself balling up fists and then spanning out fingers as if to warm up hands stiff on a cold day. Do you often pull the right coin or key, unseen, from your pocket? It’s a cool ability. That takes a lot of nerve endings working in concert.
Under the same umbrella of Peripheral Neuropathy goes numbness in the feet. Once it was like a shoe insert full of holes on the sole. Then like tall socks. Now I can feel it in my thighs. The feet have gone from numb to pins to pain. I literally do not like to walk. Once it was like a fun house mirror, a game to win. But now it’s more like walking on stilts. Mostly I walk on my heels because using the ball triggers my calves and those guys whine. I can drive okay, the pressure is a tenth or less what walking is like. Shuffling around the house isn’t so bad but stairs, agh. Any worse and I will need a cane.
I quit the SGN-35 as it lost effectiveness and multiplied it’s side effects. Now it’s navelbine and gemzar, two wednesdays on, one wednesday off. One of them also causes neuropathy. So the recovery (idealism!) will be slow.
I can’t cradle the phone or look over my left shoulder. The tumor, palpable to the lay person, visible even on the left of my neck, sends little shocks when I lay wrong or crane my neck. For two days my tricep shuddered. I can’t hold a book very long with my left hand.
My appetite is small. That seems to make sense as I’m more a couch potato. Since last Wednesday every meal gets some cramps during digestion. But that beats nausea. I take zofran for that. I find myself chewing slower and slower as I go and I finally give up.
On the happy front, I sleep 10 hours a night easily. Naps come easily.
My esophagus is off center and it leads to some snoring and non-productive coughing. Occasionally swallowing feels really wrong and I have to just relax and let it go by but sometimes the gag reflex gets uppity.
I have the least vivid description for weakness. What is it like? How to compare? No gas in the tank. A hole in my bucket. Today I’m seeing Bill McKibben (thanks Paca) at the Fremont Theatre and I consider my day full. Being at ease with myself involves a lot of acceptance. Maybe too much acceptance? Dorene is encouraging me to “take the bull by the horns” and get into more Complementary and Alternative Medicine.
I know that I can endure much. But things are not going in the right direction.
Yes, that previous post is about a drug, SGN-35 to me, that I took on a clinical trial and now take as an FDA approved drug.
But the side effects are getting worse so I wonder how much longer I can take it
- number fingers, numb feet, “like wood”, dangerous on stairs, disinclined to walk very far
- declining appetite
- fatigue – pain or nausea can be fought but weak is a butcher
- some cough and lesser distractions
Emotionally, that’s none too helpful.
CT scan in 8 days. More drug in 15 days. And probably some kind of transplant (baby blood, unrelated bone marrow donor) by the end of this year.
I’m still going to work every day for a few hours, about 50 hours a month. But. So. Slow.
I am so gratified to be a useful person.
Adcetris is the brand name used to market the molecule brentuximab vedotin, which for a long time was simply known as SGN-35, manufactured by Seattle Genetics. Adcetris is the first new therapy approved for use against Hodgkin’s lymphoma since 1977, and it is the first therapy ever to receive approval against anaplastic large cell lymphoma.
- Class: Anti-CD30 antibody drug conjugate
- Mechanism of action: Adcetris uses a monoclonal antibody linked with monomethyl auristatin E (MMAE); the antibody seeks out CD30 expressing cells and on finding them, releases the MMAE, a cytotoxic drug payload that kills the cell in question.
- Treatment type: Immunotherapy
- US approval: 2011
- Synonyms: SGN-35, brentuximab vedotin
- FDA Use-in-Pregnancy Rating: Unknown, although pregnant women should be aware of the potential for Adcetris to harm their unborn child.
What it’s effective for and why
Adcetris has been approved by the US FDA for two separate indications: for the treatment of Hodgkin’s lymphoma in patients who have either undergone two prior chemotherapy regimens and are not candidates for an autologous stem cell transplantation, or HL patients who have already undergone the transplant.
Adcetris has also been approved for patients with anaplastic large cell lymphoma who have failed at least one prior chemotherapy regimen.
Side effects: Overview
Each patient will likely have his or her own reactions to Adcetris, and while not everyone will experience side effects, those that do are urged to report each and every one of them to their doctor or oncology team. Adcetris has been reported to cause the following side effects: fatigue, peripheral neuropathy, neutropenia, nausea, vomiting, fever, thrombocytopenia, upper respiratory tract infections, and diarrhea.
It is extremely important for prospective patients to realize that Adcetris is very new, and because of this, it is not as well understood as other, older medications. Therefore, all patients are urged to pay close attention to any strange or unusual developments while receiving Adcetris and to report them to their health care professionals immediately. It will be many years before the toxicity profile—and the efficacy profile—of Adcetris is well understood.
Because the FDA approved Adcetris on its accelerated approval program, this means that Seattle Genetics will be required to continue to carry out clinical trials to further prove the drug’s efficacy while it is on the market.