Hey Everybody-
I just wanted to weigh in with my experiences. I am 51 years old and was diagnosed with CC last November when they took a tumor out of my liver and half my liver with it. It took a good two months to recover as the doctors predicted. For the first month, I felt like I'd been hit by a freight train. I had pain, constipation from the pain medicine, and not much appetite. But that second month, I would feel better and stronger each week.
My doctor didn't put me on chemo right away so I could participate in a clinical trial. I had a scan in late February and four tumors had already grown back in my liver. They had found cancer in one of nine lymph nodes sampled during surgery. They expected the cancer to come back, but not so fast. As it is in my lymph nodes, it means I need a systemic treatment such as chemo.
I did the Sorafenib clinical trial in mid March - early May. At my last scan in early May, my tumors had doubled in size and I had new ones, so they took me off the Sorafenib because I had too much tumor growth.
I started on Gemzar (gemcitabline) the third week of May as a single agent. My oncologist added Xeloda, an oral medication taken twice a day, the last week of June. I was on it for one week, but I got hand-foot syndrome (shouldn't have worked 13 hours on the 4th of July, but it's our busiest day of the year), so I went off the Xeloda. Plus I was going on vacation and the doc said I could go off it for that week. I did the Gemzar for 7 weeks and had the 8th week off which fell during the vacation as well.
At my oncologist's appointment last week, my liver enzymes were the lowest they'd been since surgery. One even fell in the normal range, and the others were just out of normal range. My CA19-9 tumor marker was up, but not as high as it's been. So I started on the Gemzar and Xeloda again last week. I'm taking the Xeloda for five days and two off instead of seven days a week. My oncologist feels the Xeloda made the difference in the liver enzymes.
My experience with Gemzar is that I usually feel good the day of chemo and the day after. (This is usually Tuesday & Wednesday for me.) They give me a steroid before the chemo infusion which I think is the reason I feel good those first two days. Then I usually have a slump for two days - Thursday & Friday. I feel really tired, queasy (but not nauseated), and may have flu like symptoms such as chills, fever, and aches. Then I start to perk up on Saturday, or sometimes as early as Friday night or afternoon. I've found since we added the Xeloda, that my slump days are worse than when just on the Gemzar alone. I think my doctor started me just on the Gemzar to get my body used to it, and then he added the second agent.
My oncologist has applied with my insurance company for Avastin which we may add in a few weeks. I'm not sure if the Avastin replaces the Xeloda or we'll do all three. I did get approval from the insurance company for the Avastin.
I also take a multi-vitamin, green tea extract (which my oncologist recommended). Omega-3 Fish Oil, Co-Q-10, and vitamin B -6 which helps with some of the side effects of the Xeloda. I have taken other supplements suggested by a reputable integrative medicine doctor, but my oncologist asked me to quit taking certain ones once I got on chemo. I was taking mega doses of Vitamin C earlier this year, but my oncologist advised me that the Vitamin C may actually enable the tumors to grow more easily, so I stopped that right away. I clear everything I take with him.
I do try to eat as many raw fruits and vegetables as possible and organic if I can. I still have some ice cream every week. I try to eat fiber, too. Berries are supposed to be good and any fruit or vegetable with deep, intense color. I did meet with a nutritionist at my oncology center. I was avoiding red meat, but since starting on chemo, I've been slightly anemic, so I do include beef in my diet again and my hemoglobin has held stable. By the way, the American Cancer Society is an excellent resource for info, and if you come to America, they may be able to provide assistance with travel costs. If your country has a cancer society they may have some of the same info or travel assistance.
Additionally, I've been taking Zoloft, an anti-derpessant, for about two months now, plus I attend a support group for women with cancer at my oncology center in Grand Junction, a two hour drive from us. I have started a cancer support group in my own community and we will meet for the first time on August 18th. I do have a blog on this site, and I have started a memoir about my cancer experience. Also, this website is excellent and I don't know what I'd have done without it. It's also good to check clinicaltrials.gov every so often for new clinical trials.
I have taken Ambien to sleep when needed, but that was primarily when I was on the clinical trial, broke out in a bad rash and was on steroids (which kept me up all night) to combat the side effects.
I had lost about 25 pounds since two years ago, but I've gained 5 back. My appetite is usually good. Just a little queasy sometimes after chemo on those slump days. I've taken Kytril for the nausea and I have two back up nausea medications that I've never taken. I try just to take Papaya enzyme for the nausea as it is usually mild and the Kytril doesn't really do that much plus it can give you a headache. I actually feel pretty good these days. I do have pain in my abdomen. I don't know if it's from the surgery, my liver being enlarged, the tumors or possibly all three, but it's not that bad. Occasionally, I'll take Tylenol for the pain. The oncologist said to take Ibuprofen only sparingly while on the chemo.
A friend of mine who is HIV positive and has been on medications for 12 years told me to learn to embrace the medication, even with all it's side effects, because it keeps us alive. That advice has helped me on many occasions.
Lastly, I think oncologists have a duty to give us the worst case scenario in case that happens for us, but I have a very strong attitude and lots of support from family, friends, and my community. I sometimes just say to myself, "I'm not leaving this world until I'm ready!" I have lots of hope, but I've also accepted the fact that this disease will probably overtake me at some point and I have peace about it. But I still plan to keep fighting. I believe miracles happen all the time. And if you're feeling good, it's okay to have some days of denial about having cancer.
I still try to participate in life as much as I can - I'm in a melodrama next week and I'm in writing workshop this week. I've given up a lot of volunteer activities and having cancer is a great way to fade out of some organizations that took more of your time than you wanted. I only allow myself to feel self-pity while I'm in the shower, which I have done sometimes - why me, why did I get this, what caused it, what did I do to deserve this? I don't want to waste any of what time I have left on a lot of negative feelings. I do allow myself a good cry sometimes, but I seem to need that less and less. I have felt devastated at times - like when I was first diagnosed with a tumor in my liver, when the tumors grew back so fast after surgery, and when I had to go off the clinical trial.
My husband has been incredibly supportive. I try to keep a good attitude, not just for myself, but also to make it easier for him.
So, I hope this helps.
-Caroline Stoufer
