It’s already been a month since my diagnosis on February 28, 2013.
It’s already been a month since my diagnosis on February 28, 2013.
It’s official: I am now in the hands of science. And, in the hands of the somewhat unknown. I am the first and only woman at the Red Rocks Cancer Center, and possibly in the state of Colorado, to shoot up Halaven before any other kind of chemo. My oncologist and nurse are hopeful it will work as well or better than they’ve seen it work on women who have already had several other treatments, and they hope the side effects will be much less than the standard treatment. But, they only know how it affects women who have already had many other types of chemo, so they can’t truly predict how it will affect me.
This will be a freakin’ walk in a beautiful flowery park, right?!
I had my first injection of Halaven on Thursday, and I was surprised by how easy it was. I was only there for about 40 minutes. My next injections will take even less time because the nurse will not need to explain as much to me, and I probably won’t have as many questions. After consulting with my nurse, I began with a finger poke to check my blood, and then I had a 20-minute IV infusion of anti-nausea medication. After that, the Halaven took less than a minute to push into my system. My surgeon did a good job of placing my port near the surface of my skin, so the nurse didn’t have to hunt for it; you can easily see the tree little nubs that indicate where to put the IV without even touching it. She froze the skin over the port with some sort of crazy freezing spray, and then she stabbed me. The port has a thick plastic back, so the needle can’t go through it. It didn’t hurt at all, but it was certainly weird. I didn’t look at it.
The day of and the day after I felt a little foggy in the head like I’d had a few too many glasses of wine the night before. I also had a slightly weird taste in my mouth. I was a little nauseous last night, but it was nothing a glass of ginger ale couldn’t remedy. Today is supposed to be the worst day, and I feel fine other than a bit tired. I imagine side effects will build as I get more injections. I have another this Thursday, and then I take a week off. I will do three more cycles after that of two weeks on and one week off. I also go in one extra day at the beginning of each cycle to check my vitals and blood.
After Halaven for 12 weeks, I will move on to the hardcore stuff: AC. From what I’ve heard and read, that’s going to be one scary chemical cocktail. Not only for me, but also for my cancer, which is seriously going down.
(It’s crazy and probably completely psychological, but I swear I feel sporadically sharp pangs coming from my tumor. I plan to ask my doctor about this the next time I see him. How cool would that be if I can actually feel it suffering?!)
Knock on wood, but I’m not as nervous about going back to work as I thought I would be. I think my next injection on Thursday will be a little bit more difficult to tolerate as the chemo builds in my system, but I am hopeful it won’t be as bad as I thought. Keep them crossed, pray, do interpretive Mother Earth dances, meditate, send smoke signals to the stars, or do whatever else it is you do to give me good energy as I move through this. My goal is to make it to the end of the school year without too many hang-ups. After that, it can knock me on my butt, and I’ll have all summer to cope.
Cheers to science, ginger ale, and tumor pangs!
After many hours of research and several second and third and forth opinions, I decided to enroll in Dr. Kantor’s Halaven (eribulin) clinical trial. (CLICK HERE if you missed it.)
Yesterday, I found out that I am in the experimental arm, and I will have my first hit of Halaven tomorrow afternoon. Each cycle is two injections, one a week for two weeks, with one week off. I will do this for twelve weeks (eight injections for four cycles total).
After that, I will have four cycles of AC, which will be one injection every three weeks for twelve weeks.
Halaven is a synthetic version of a cancer-fighting compound a couple of Japanese scientists found in a sea sponge in the mid-1980s.
Here’s a lovely photo of Halichondria okadai, the magical sponge:
Unfortunately, one ton of Halichondria okadai and his friends could only produce 300mg of the super fantastic cancer-fighting compound, so studies were halted.
Years later, Harvard scientists picked the study back up in hopes of creating a synthetic version of the compound, and they were successful.
CLICK HERE for more about eribulin, my new magical mystery cancer drug.
The hope for the study is that Halaven will attack the cancer cells in a way that will make them less likely to come back. The side-effects of Halaven are believed to be less severe than those of the standard drug, Taxol. I am hopeful that this is the case. Another bonus of Halaven is its five-minute injection time, which completely trumps Taxol’s one-hour injection time. As long as I am feeling up to it, I do not need to miss work for treatments. Happy day. And, happy Halaven!
Today I had my first MUGA, or multigated acquisition, scan. This is also know has a nuclear heart scan. Yes, that’s right, nuclear.
I do believe this one took the cake. The nuclear cake, that is. Not only did the nuclear medical technologist draw my blood and mix it with a radioactive tracer, she then pushed my hot blood back into my body. I positioned myself under something that looked liked an inside-out Tie Fighter; this was apparently a gamma -ray-shooting camera. The gamma rays picked up the radioactive tracers as they rocketed through my body. This all somehow let the radiologist know that my heart can handle chemo.
I am now supposed to drink a lot of water and urinate frequently to rid myself of any remaining radionuclides. As with the PET scan, holding babies is out of the question. Again, hide your children.
(Do you think Professor X would go for the mutant name “MUGA”?)
CLICK HERE for more information on MUGA sans.
I’ve decided to cut my hair before I start chemo. Yes, there is a chance it may not fall out, but that chance is very unlikely. I’ve decided that cutting my hair short keeps this whole experience somewhat within my own control. Overall, that will be far less mentally damaging than wondering “when” and “if” and possibly dealing with it actually coming out while it’s long.
So, I need your votes. Which short hair cut should I go with? I’m also considering messing with color; if it is going to fall out, it won’t happen right away, so I might as well have some fun.
Post your votes as comments. Cast two votes: one on style and one on color. Or, post links to other short cuts you’d suggest.
Tess and Katie A., if you see this, please let me know if any of these will not work well for my hair, which is fine and very full with some wave/curl. Or, if any of these are actually the same cut but just styled differently.
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I’m fairly certain Professor Charles Francis Xavier, leader and founder of the X-Men, would like to recruit me. Not only do I have radioactive sugar-vein powers, but I am also officially a mutant. It’s only a matter of time before my true nature and purpose are unleashed. I wonder what he’ll name me? It’s too bad “Rogue” is already taken.
The results of my genetics test are in, and I have an Ashkenazi Jewish BRCA 1 mutation that I most likely inherited from my mother’s mother’s side of the family. I am not surprised, and in some ways, I am weirdly relieved because now I know why I have triple-negative breast cancer at only 31 years old. If I did not have a mutation, then I’d be even more of an anomaly. At least now I’ll know my risks and odds, and I’ll also have a clear picture of future medical decisions and procedures. And, breakthrough-hungry oncologists in big and dirty cities won’t want to study me. I was told that’s what happens to women my age who get triple-negative breast cancer and do not have a known genetic mutation. That does not sound at all as fun as Xavier’s School for Gifted Youngsters.
This will not change my treatment, but it will change the way that I consider my post-treatment surgery. I am meeting with the genetics counselor this Friday to get all of the details. Thankfully, I do not have to make any surgical decisions until after chemo.
Apparently I am quite rare, so I’m sure Professor X will be knocking on my door soon enough. Who knows, maybe he already has a new member of the X-Men who can cure cancer. Or, maybe that member is me.
(Rayan’s convinced I can move things with my boob; I just don’t yet know how to harness my powers.)
I received some advice tonight that goes along perfectly with advice many of you have already given: I need to ask for help BEFORE I need it, and I need to stock my freezer.
With chemo on the horizon, I’d like to stock my pantry and freezer with easy-to-prepare and portion meals of all varieties. So, I’m asking for help.
(This is very hard for me, by the way!)
There are a few ways that you can help, if you’d like.
1. Reply to this post with some of your favorite, easy-to-portion, freezer-friendly recipes. They can be anything from light soups or rice dishes for nauseous days to flavorful foods for days when everything seems to taste the same. Apparently garlic, basil, horseradish, ginger, and green chilies are good for this. Also, cool or refreshing foods for when my mouth is sensitive or sore.
Those of you who have been through chemo, please share food hints and/or recipes you found helpful. I’m also going to stock my pantry, so please suggest anything that I should have on hand.
2. You can cook for me. I’ve been advised to ask for foods that I can easily freeze and portion. Please use disposable dishes because I may not get to it for awhile, and I may forget which dish is yours. I’ve heard soups, casseroles, marinaded light meats, and rice dishes are good. I’m also supposed to eat a lot of vegetables. Apparently, food I love may seem awful, and food I currently dislike may seem great, so create and share whatever sounds good to you!
I can pick up food, and I welcome deliveries. I’ll be in Lakewood/Golden Thursday evening, the Wheat Ridge area Friday evening, Denver Saturday afternoon, and the Littleton area Monday afternoon. Yeah, pre-treatment preparations are giving me a lovely tour of Denver. Rayan works downtown, so he can pick something up in that area after work.
3. You can cook with me. A friend sent me a great cookbook: “The Cancer-Fighting Kitchen”. I plan to bust out and freeze some recipes this coming Sunday, Monday, and Tuesday. I’ll be on Spring Break, so I can cook all day. Anyone is welcome to join. Bring extra takeaway dishes if you’d like to take some home. Wine is obviously on the house for anyone cooking in my kitchen.
If you are unable to help out with food right now, but you would like to later, I know that I will probably make another food request as I get further into treatment.
Thank you all again and again for your support!!
CLICK HERE if you missed the first post on the clinical trial Dr. Kantor is suggesting.
More information about clinical trials in general:
Most Commonly Asked Questions About Clinical Trials from Women’s Cancer Network
Clinical Trials: What You Need to Know from the American Cancer Society
More information about eribulin (trial drug):
Eribulin Improves Survival of Women with Metastic Breast Cancer from National Cancer Institute
Eribulin Equal to Older Drug in Advanced Breast Cancer from Medscape News
And, to make things even more confusing, here’s a study Dr. Borges is suggesting:
(Yeah, she emailed me twice this weekend after I asked her about her thoughts on Dr. Kantor’s trial!)
CLICK HERE to see the trial Dr. Borges suggests.
Her’s is much more specialized to the type of cancer that I have, but I’d have to see her in Aurora because Dr. Kantor is not involved in this study. I was not going to consider it, but she jumped back into the picture after she responded to my email in less than 6 hours on a Saturday. I wasn’t expecting a response really at all, let alone on a weekend.
I’m still fairly set on Dr. Kantor, but I also don’t want to miss out on anything if Dr. Borges is truly the way to go. And, yes, even as Dr. Borges suggested in her last email, I should follow my gut, but my gut really isn’t giving me much right now other than knots and butterflies and whatever else guts do when they have no idea what to do!
Any thoughts? Psychic powers? Genies in bottles? Jokes that will make me forget about all of this for a moment?
Good news and confusing news from the PET scan.
Good news: I do not show signs of cancer anywhere other than my left breast.
More good news: I’m still convinced that I have super powers.
Confusing news: According to the PET scan, I do show signs of cancer near or on lymph nodes close to the tumor. I asked if this was the biopsied area that came up benign, and Dr. Kantor said maybe. Apparently the PET scan shows areas and not specific sites like the MRI. Apparently the biopsy results could be false. Apparently the PET scan results could be off. Apparently I no longer need biopsies, and I should decide when I’d like to start treatment. Apparently there was a reason for my last lymph node biopsy that I should apparently understand, but I don’t.
Obviously, I am confused.
I am quickly learning that this whole breast cancer business contains many maybes. Those of you who know me well know that I do now do well with maybes.
Any advice? I know that I should have been more direct with Dr. Kantor when he told me this news, but I didn’t realize my confusion until after our conversation. I plan to ask some specific questions the next time we speak, but I don’t really know what to ask.
The one thing I do know is that this is an appropriate time for another sweet Power Ranger picture:
Dr. Kantor called tonight to let me know that I’m good to start treatment later next week. I need to decide if I want to go with the standard treatment or the clinical trial. CLICK HERE to see my treatment options.
Sticking with the battle metaphor, I need some help scouting out the clinical trial. I’m going to meet with the research coordinator to find out more, but I know that she will want to sell me on it, so I’d like to develop meaningful questions. I also want to decide if it’s even worth looking into.
Any help or opinions would be great.
HERE’S another link to the trial info.
Below are some other links about eribulin (generic for Halaven), which is the drug the trial is testing.
Paclitaxel (taxol) description from the American Caner Society (This is the control drug in the trial and the drug I’d receive if I go with the standard treatment.)
Find any other useful links?
I’d like to let Dr. Kantor know whether or not I’m interested in the trial by the end of the day Monday.