Met with Dr. B, da radiation guy Friday, after Diana had another chest CT for the Chemo Dept.
We had more questions this time, and he was pretty good with answers. He also gave us the full study poop sheet, and not just the consent form. That, along with a fair amount of googling has produced the following information:
Treatment of stage IIIb non-small cell lung cancer (NSCLC) is still very much a developing field. They have learned that concurrent chemo and radiation works better than either alone. The chemo makes the tumor more vulnerable to the radiation, and doing both at the same time gives better results than starting the chemo first. Often, that shows early results, but the cancer comes back within a year or so. Five year survival is about 20%.
To try to increase long-term survivablity, a post-radiation 'consolidation' phase of chemo seems to be emerging as a standard.
The standard chemo drugs are carboplatin and ciscplatin, and there are a lot of studies trying various 'cocktails' of other anti-cancer drugs, usually in addition to one of those two.
This study (CALGB 30407) will use carboplatin and pemetrexed in one group, and carboplatin, pemetrexed and cetuximab on the other.
Pemexetred is an antifolate that kills cancer cells by inhibiting enzyme reactions they need to live. Cetuximab is an epidermal growth factor receptor inhibitor (EGFR) that has been shown to inhibit tumor growth and increase vulnerability to radiation. Trivia fact: cetuximab was grown by ImClone. If that name sounds vaguely familiar to you, it's because ImClone was the company with which Martha Stewart was accused of insider trading.
In addition, the radiation treatment is little stronger and a week longer (200 cGy M-F for seven weeks). They've made a lot of advances there. Next week, dp will go in for a special CT from the Radiology Dept.; this one just to map pathways to the tumor. With a 3D map, they'll figure out what sequence of what pathways will deliver 7000 cGy of total x-rays while keeping the amount of radiation to the heart to less than 2500 cGy, the amount to the spinal cord less than 5000 cGy, and the combined lung volume receiving 20 Gy will be less than 40%. Dr. B made the analogy of four or five little flashlights, all pointing at the same spot from different directions -- while everything around it gets some light, most of the it is on the spot. Gy stands for 'Gray' -- the standard measurement unit of radiation, and cGy is a centiGray -- one 1/100th of a Gray.
Next Thursday, she is scheduled for another PET scan. Then on day 1 (May 23, if all goes well), she'll get get her chemo. The pemexetred is delivered IV over 10 minutes, and the carboplatin over 30 minutes. That happens once every three weeks. If she's in the cetuximab group, that will be delivered IV over 60 minutes once a week for 7 weeks. Since some people have an allergic reaction to cetuximab, the first week it will be delivered over 2 hours.
The carboplatin/pemexetred is 4 cycles of three weeks each, so she'll be on that for the first 12 weeks. The next 12 weeks is the consolidation phase, where she'll get just pemetrexed once every three weeks.
Side effects are pretty much everything you hear about -- low white blood cells (high susceptibility for infection), low platelets (increased bruising/bleeding) and low red blood cells (anemia and fatigue), headache, nausea, loss of hair and loss of appetite, skin rash, 'chemo-brain' (I'll let dp tell you about that one), skin rash and irritation. Any fever over 100 takes her to hospital, and there's an elaborate list of anti-infection procedures for us to learn.
Still, both Drs. B and C said that the goal is cure.
The danger of infection during the protocol means that we'll not be doing any travelling for the duration...probably the rest of this year, and we'll be accepting Guests on a sporadic basis.
We're a bit concerned about finances. The pemexetred and the cetuximab are provided free by the drug companies (Lilly and Squibb, I think), but the study calls for four more CTs during the study, three in the next year, and two a year after that. It doesn't pay for them, though.
I've been through my insurance policy, and I can't find anything about studies one way or the other. It does have a technology clause that says that all technology must be approved by the FDA, but the drugs that aren't approved aren't charged to them anyway. So far, they've had no problem getting pre-approval for the new CT and PET scans, so I guess we'll know if they balk before we accrue the cost.
Diana's larger financial concern is whether the insurance will cover any of the possible long-term injuries which could be sustained as a result of the protocol. Or that the experimental drug will go commercial and that we'll need to cover the $17K/mo. for the cetuximab.
I'm thinking I'll go talk to my HR director Monday...
Meanwhile, I've been home sick with a cold since Tuesday. Thursday morning, I was thinking I'd be ready to go back to work by Friday, but by Thursday night I had a new sore throat, no voice, and a nasty ear ache. I was whispering questions to Dr. B, but I'm feeling and sounding more like myself today.
Now Diana has a sore throat...
And it's Graduation Weekend -- we've had Guests reserved since last fall, and there is nowhere we can refer them. Nancy held down the fort while we went to the hospital yesterday, and helped Diana do breakfast and cleanup this morning. I mostly stayed out of the way. I think folks are happy -- the weather today is absolutely glorious, so that should help.
Trooley and I put on a frisbee show, and now we're both pooped. Diana has slept a good part of the afternoon -- I guess I should start thinking about supper.
The photo of the two jays was taken last week...birds of a feather...
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4 comments:
Ok, Katie, here's my comment. Kevin has done all the work on this one. I think he knows more at this point than I do about chemo and radiation . I like the fact that both docs, but especially the radiology guy, have been willing to give Diana and Kevin all the information they can, even the scientific stuff that I don't fully understand. Not much help today, am I? I'll keep trying, though....
Oh Nancy, Thanks for thinking of me! I was feeling left out last week because since you were there with them, you didn't need to weigh in here. I'm very glad you were there with them!!! I don't fully understand what Kevin said either. Tim can talk about drugs that help during chemo. Did the doc mention Zofran?
I'm very impressed with all this newfound expertise. Amazing what you can absorb when you have to. Of course, it would be a real mistake to start handing Diana a bunch of meds and tell her to "trust me." The survivability of a physican under those circumstances would be about 5%. Push on brother and sister. We're proud of you.
Since this is an experimental protocol, they're being very picky about even the vitamins I can take...we don't know what they may offer to help with side effects during the protocol and will greatly appreciate anything Tim can tell us.
And, Tuna, in addition to everything else, Kevin is learning a complete new dietary regime should I lose my appetite along with my hair *sighs*
We sure appreciate the comments and the emails.
JV, I can't imagine your being underfoot, and there might be some logic to visiting before we begin the protocol...?... Of course, you'll probably catch less flack if you visit _after_ we start -- when my energy is a bit lower *heh* Regards to your new bride!
*pushes on*
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