The perils of Jillene — still more cliff hanging adventures.
[picapp align=”left” wrap=”true” link=”term=scary+movie&iid=178444″ src=”http://view3.picapp.com/pictures.photo/image/178444/mother-and-children/mother-and-children.jpg?size=500&imageId=178444″ width=”380″ height=”253″ /]In the last episode of our horror movie, our heroine had decided to go off chemo, get the lesion on her T6 spine zapped (which will end on June 21), and try to get her feet back under her from nine months of relentless chemo which, apparently, had not worked or had kept the cancer from spreading further but hadn’t killed it or had actually worked (what it did depended on the doctor our heroine was talking to at the moment). Meanwhile, in Chicago, the oncologist was searching for answers at the annual cancer doctor meeting; in Renton, the naturopath was making other suggestions; and in Seattle, the surgeon had still other ideas.
Okay, enough of the horror movie. I’ll toss out what I know, gather opinions, ask for prayer, and then Hank and I will make a choice some time early in July. As a reminder, the drugs I was on for lo these many months (since August 14, 2009) were:
- Avastin – a “biologic” agent that inhibits a tumor’s growth by cutting off its blood supply. It has no idea how to discriminate between various small blood vessels in your body so it also inhibits the growth of small blood vessels elsewhere, including your kidneys, which can result in kidney failure, high blood pressure, and chronic nose bleeds.
- Abraxane – a “chemo” that is derived from the European Yew tree and works like all chemos by targeting fast-growing cells, which usually include tumor cells. The problem is that it also targets other fast-growing cells resulting in hair loss, fingernail and toenail loss or damage (that one’s fun), nerve damage especially in the fingers and toes (even more fun; I couldn’t open a ziploc bag or walk without limping until last week), and red and white blood cells (resulting in anemia and susceptibility to infection). Oh yes, and fatigue. Bad fatigue.
- Zometa – similar to the anti-osteoporosis drugs, but stronger. This one is designed to deal with hypercalcemia caused by tumors in the bone. It has few side effects, but down the road can cause fractures of the femur — actually, I should say femurs because both fracture at the same time.
So here’s the medical thinking in no particular order:
- The surgeon thinks I’m a good candidate for lung surgery to remove the remaining nodule in the left upper lobe of my lung. He also thinks that the shadow showing up next to the original lesion (tumor, whatever you want to call it) is probably just inflammation and said that the original lesion had shrunk from 8.8mm last time it was measured to 4mm now. So, maybe the chemo was working after all — whatever. He wants to see the brain lesions shrink before he does surgery just to make sure the cancer isn’t on the move while I’m trying to recover from a major operation. He does, however, recommend physical removal over radiation to kill the lung lesion because that will give us some tissue to send to the lab for close examination. So, surgery might happen, but likely not until early next year.
- The naturopath has encouraged me to start intravenous vitamin C therapy along with continuing Iscador (mistletoe injections – standard practice for breast cancer patients in Europe). The IV vitamin C would be weekly for a year and lest you all think this is way too whacky for words, it looks like my insurance will cover it. Also, I’ve had more than one person say that IV vitamin C burns upon injection. I have a portacath, so that takes care of burning. Chemo burns too, which is why they invented portacaths. I will definitely do the IV vitamin C and continue with the Iscador. These are the only two things I know for sure so far.
- The oncologist had the following interesting information, some of which made me a bit angry (see the last point) but I was nice to him anyway:
a) Avastin does not prolong life at all; instead, it seems to just keep tumors to a size where they’re undetectable on a scan. So, I’m off Avastin. It’s an incredibly risky drug in many ways, like I could bleed to death if in an accident and I can’t have surgery within 6 weeks of being on the stuff. What if my appendix burst and I needed surgery right away? The only problem with going off it now is that there are studies showing it also changes the nature of slow-growing cancer and turns it in to aggressive cancer. I can’t begin to tell you how mad this makes me.
b) The much-touted PARP inhibitors that were supposed to have such promise for triple negative cancer seem to work well, but only if you have the BRAC 1 or 2 gene mutation. I don’t have either one, so this puts me into an even less studied cancer ghetto where nary a pink-ribbon dollar will see the light of day.
c) Zometa seems to have “some benefit” for preventing metastasis to the bone, but not as much as previously thought. Teeeee-riffic!
d) And after I heard a, b, and c, I thought….. I was on these things for nine months for what? To run up huge bills for my insurance company? To make me “appreciate life” and learn to “live for the moment”? To ruin my health? To add more stress to my family?
- The oncologist also talked to other oncologists at the cancer doctor conference and went to all the relevant meetings and recommends that I try one of the following (to which I said, “I’ll think about it and let you know in early July.” I want to recover my health a bit more, finish radiation, and talk with the naturopath — did I mention that the recovery from Avastin left me with a flaming sinus infection?) Oh, and it was very very nice of my oncologist to study all of this stuff, and he said he needs until early July to really synthesize it anyway — and he doesn’t think Mr. Couch Potato Cancer is going to get off his duff between now and July.
a) Metronomic oral Cytoxan and Xeloda. The metronomic refers to a method of giving chemo in small doses without breaks. The oncologist says that this combination is “well tolerated,” which is what he said about the last round of drugs. At this point I gave him the hairy eyeball and said, “That’s what you said last time.” It’s possible I’d still lose my hair (which makes me madder than I want to admit), feel like a very old person, get hand-foot syndrome (YUCK YUCK YUCK YUCK – the list of things I’d have to stop doing to prevent this is basically my list of things I love to do. How wickedly cruel is that?) and maybe not be able to participate in real life; however, he says he’s had patients on it for two or three years who have done very well and shown no progression of disease. I said, “Two or three years?!” Raise your hand if you’d like to be on chemotherapy for three years. This was his best option, so I said I would get on the Internet (doctors hate that) and find some people who have done this combination and get the real “experiential” scoop. To his credit he thought that was a good use of the Internet. The bonus of this one is that both drugs come in pill form which means a doctor’s visit only once a month or so to get blood drawn to see just how anemic I am.
[picapp align=”right” wrap=”true” link=”term=bean+soup&iid=7702205″ src=”http://view4.picapp.com/pictures.photo/image/7702205/hot-potato-soup/hot-potato-soup.jpg?size=500&imageId=7702205″ width=”234″ height=”174″ /]b) Weekly intravenous gemzar and navelbine. The list of side effects of gemzar alone makes it a “heck no” for me right off the mark. Navelbine isn’t so bad, but it’s not the weekly soup special in the cafeteria by a long shot.
c) Ixempera. This is a last-resort poison that sounds just as icky as the rest of them.
My inclination right now is to do nothing but the IV vitamin C and the Iscador and just watch the cancer for the next few months to see what it does — if anything. That could be the most stupid and deadly decision I’ll ever make in my life, and I won’t do it without much discussion with my husband and family. I also appreciate anyone who calls me on it and says “You’re being stupid.” The naturopath would be the first to say that as she’s never advised dumping chemo altogether. But I’ll meet with her on June 29 to get her opinion about the oncologist’s recommendations. Given the dismal performance of the last round of poison, and that fact that much of it has turned out to be either completely useless or extremely dangerous, I think that being skeptical about doing another round of chemo is within the realm of sanity. Meanwhile, I want to hear gut feelings, other ideas, thoughts, whatever. Prayers for wisdom are the best.
Also, bear with me if we meet socially and I avoid talking about cancer. This blog is so we can all get the latest on my health without giving cancer more time in “real life” than it deserves. I tend to dump it out all here and then I’m pretty much done talking about it and it bores the heck out of me beyond this. I have a life to live (now that I’m starting to feel human again) and cancer deserves no more than 5 minutes a day as far as I’m concerned.
And I’m very very far behind on emails. I’ll catch up eventually.