Hi Everyone,
I’m done with two cycles and am of course hoping that it’s working. I should have another scan at the beginning of January. Nothing is scheduled yet but that’s when I was told I would have another one. I’m hoping for good news. I haven’t had any good news in a long time; it would be nice.
We have some indication that the chemo is working because I was feeling ill on November 19 so they sent me for a chest x-ray. The x-ray showed a “considerable decrease in the size of the innumerable metastatic nodules throughout both lungs.” Now, that was just an x-ray and we need a CT scan or a PET scan to be sure. So I shouldn’t say I haven’t had any good news but it’s been a good long time. That x-ray was done with only four doses of Irinotecan and now I’ve had seven. I’m keeping my fingers crossed and praying—lots and lots and lots of praying!
I’m in the midst of a two week sabbatical from my chemo, which I’m enjoying immensely! By the time I go back, which should be January 8, I will have enjoyed five weeks off the Irinotecan. In any normal cycle I would have three weeks off (just to repeat myself it’s a six week cycle, with four weeks of chemo and targeted treatments and then two weeks of just targeted treatments). And just to be a little more annoying I’m going to reiterate that the Irinotecan is the chemo and the Avastan and the Cetuximab are the targeted treatments.
I’ve had laryngitis for about seven weeks which is concerning everyone—including me. I thought for sure once I was off the Cetuximab for a few weeks, my voice would come back. It hasn’t yet, which worries me.
I’ve traded one set of side effects from the old drugs for another set with these new drugs. The rash continues to bother me and my fingers have started to literally crack. I’ve got to keep everything moisturized and sometimes that’s easier said than done. I seem to have a handle on the rash on my face so it’s looking a lot better than it did a few weeks ago. I also notice a slow, steady fatigue with this new regimen. My last course was more acute. I would be tired for about 36 hours and then I’d be fine. This new fatigue just kicks me in the fanny every day! My stomach is taking more of a hit this time as well. It’s hard for me to eat. There are days I can barely eat one meal. So I’ve lost a ton of weight. However, due to the time off coinciding with the Holidays, I’ve been able to put some pounds back on!
The hardest side effect for me to deal with right now is my hair loss. I’m not bald but I’ve lost a lot of hair. I mean a LOT! I’ve got a receding hair line and some serious bald spots. Luckily my worst bald spots are on my right side and I just so happen to part my hair to the right. So I guess you could say I have a legitimate comb over!! J It’s hard to look at myself in the mirror. Most days I cry when I catch sight of myself. That’s a very vain, shallow thing to say, I know. And I know, I know, it’s just hair but try telling that to someone who is losing theirs—male or female! Sy Sperling became famous and made a lot of money off a little something called “just hair!” I’ve started to wear a baseball hat when I’m out and about and am seriously considering a wig (and no, Greg, for the thousandth time, I’m not getting a red one!). I don’t want the wig to look fake though so it will have to be a good one. Maybe I could get myself a Jennifer Aniston one!! Ha ha ha—there are some of you out there that will laugh harder than others at that one!
The funny thing about me losing my hair is that I’m not supposed to be losing my hair. It was only supposed to thin. Oh it’s thinning alright. And the Nurse Practioner I work with said she’s seen “a few cases of elderly women who have bald spots but it’s very rare.” Awesome. I hit another rare percentage!! Seriously, could I please have that kind of luck with the lottery—or better yet a cure/long remission??? I’m hoping I’ve lost as much as I’m going to lose because it’s not going to take much more before I am bald.
It’s been a tough couple of months—physically, mentally and emotionally. I’m almost longing for the days of my fanny pack and neuropathy!! And I’m not telling you all of this so that you’ll feel bad for me, or try to make me feel better. I’m just telling you because this is part of my journey. I told you I would share the good, the bad and the ugly. And this is U-G-L-Y. I’m having such a hard time with it! Like I said, I am trying to keep my head covered and I actually avoid going out and have “hid” from people I know if I see them in a store. I have a few parties coming up this week and I’m stressed because I can’t really wear a baseball hat to a party! These people are my friends so I’m not expecting them to make fun of me but it’s not fun when you feel like a freak!
Anyway, enough of that. In my last post I gave you a very lame explanation of how the Cetuximab works. I did a little more research and have, what I would consider, a better explanation: The drug is actually called Erbitux but it’s marketed as Cetuximab (like Ibuprofin is marketed as Advil). Cancer cells are very much like healthy cells and it’s hard to tell the difference between the two. All cells within our body grow and divide. Both normal and cancer cells have receptors that stick out from the surface of the cell.
Are you with me?
Each receptor only allows certain types of signaling agents to attach to it and each signaling agent has a different effect on the cell. In order to have an effect on the cell, the agent needs to bind to the receptor.
The Epidermal Growth Factor Receptor (EGFR) is one kind of receptor. Cells that have EGFRs on their surface are said to express this receptor. By binding to EGFR on the surface of both normal and tumor cells, ERBITUX can block the receptor from binding to signaling agents that would otherwise cause the cell to grow and divide. When this happens to cancer cells, these cells may stop growing and dividing allowing the tumor to shrink. Side effects occur when ERBITUX blocks signals to normal cells. This is where my rash comes into play!
I’m not sure if you really cared if you understood how the Cetuximab works but I attempted to explain it anyway!
We had a good Christmas and we’re enjoying an extended vacation due to the ice storm we had here in Central Mass. The kids have been home since Friday, December 12 and will go back on Monday, January 5. We’re looking forward to the rest of vacation and the New Year. I’m looking forward to getting back into a routine after the kids go back to school but am enjoying the break from the hustle and bustle.
Thank you to Auntie Jean and Uncle Bob who took us in for a few days during the ice storm. And they don’t just give you a nice place to stay; they also feed you very, very well!
By the way, we did NOT send out Christmas Cards this year, which bums me out. I know you were probably running to your mailboxes every day to see if one was there! I hope everyone had a Merry Christmas and I hope you have a happy, healthy New Year. Thank you for all of your beautiful cards!
I will keep you posted on the scan dates and how the third cycle goes.
Love,
Kim
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