caroline-stoufer

Jules-

I am taking green tea extract in capsule form, anywhere from 100 – 300 mg per day, which my oncologist recommended. He said they are discovering great things about green tea at Mayo Clinic in terms of fighting cancer. I asked him about Essaic tea last week (the same as Flor-Essence), but he advised against as he was afraid it might interfere with the chemo. A woman in my town who has lung cancer thinks the Essaic Tea is helping her.

I also asked about Milk Thistle but he advised against it, again because he was concerned it would interfere with chemo. He also had me quit taking Mushroom Extract, Folic Acid Mouthwash, and N-Acetyl-Cistine for the same reasons.

I had been doing large doses of Vitamin C earlier this year and my oncologist said this could actually promote tumor growth as it cleans up the exhaust or by-products of tumors. As the large doses of C made me very flatulent, I was happy to give that up!

I also take CoEnzyme Q10 and Omega 3 Fish Oil as well as a multivitamin and Vitamin B-6. The B-6 is to deal with side effects of Xeloda.

Hope this helps,
Caroline

Betty-

I am heart-broken to hear about Sam. His service sounds wonderful. Please let us know if there is anything we can do. Our thoughts are with you.

-Caroline Stoufer

Some news on AZD2171, the new Avastin. It is offered through AstraZeneca. I have a cousin in Florida who is a sales rep for AstraZeneca and I just e-mailed her to see if she could get us more info on it. Looks like the trial in England is the only one open to CC patients unless the liver trial will take a cc patient. My oncologist is interested in getting me on the trial before I start Avastin. I don’t mind travelling to England to get enrolled. I wonder if they would let me do follow ups in America or if they would accept Americans. Sure would love to see Londaon, Liverpool (I’m a huge Beatles fan), and the James Herriot country, Scotland, the Cliffs of Dover. Actually, I’ve wanted to go to England for some time , more than anywhere else. This may be my chance. Will let you know what I find out.

If you read the Johnson Family blog, you’ll find that he did XL119 in 2005. Go to the January 2006 archive on their blog and they have a summary of his treatments. I think he was on it last summer.

The Johnsons haven’t posted for a while. Does anyone know how Sam and his wife are doing?

-Caroline

Has anyone heard of Essaic tea? A friend here in Ouray who is batttling cancer has been drinking it and thinks it is helping. Another friend called me about this tea some time ago. It is a blend of slippery elm bark, burdock root, rhubarb root, and sheep sorrel. A commercial blend is available under the name of Flor-Essence.

-Caroline Stoufer

PS Got my port installed last week and my liver enzymes continue to improve.

Hi Everyone!

Good news on Wednesday. My blood work continues to look good and while my scan results were mixed, most of my tumors are stable. The ones that have grown haven’t grown that much, so we are very encouraged. The oncologist feels it’s the Xeloda that’s really making the difference. Additionally, I am no longer anemic. I’ve added red meat back to my diet and I had a big steak dinner on Tuesday night, so I don’t know if that helped or not.

I did also have my Gemzar infusion on Wednesday as well. We have decided to have a port installed next week which will access a vein near the collarbone for blood draws and chemo. We won’t start the Avastin until the port has been in a week or two and the risk of infection for the port insertion is over. The chemo drugs slow the healing process, and the Avastin would further complicate this, so Dr. Bergen doesn’t want to add Avastin right away.

My hand-foot syndrome has really flared up today. My feet are red, sore, hot, and peeling. So I’m going to suspend the Xeloda for two or three days.

All for now. It’s late and I must get to bed.

-Caroline

Geoff-

I am having some luck with Xeloda!

Initially, I went off of it because of hand-foot syndrome and my feet swelling. But on my last two blood tests, my liver enzymes have improved, so I went back on it. My oncologist feels it’s the Xeloda that made the difference. I try not to work long days on my feet and that has helped the hand-foot syndrome.

I have a scan this week very early on Wednesday morning and then chemo (Gemzar) in the afternoon. (I am taking the Xeloda orally.) I don’t know if or when we’ll add the Avastin. This week’s scan will probably help determine that. While the results of the scan won’t be back on Wednesday afternoon, Dr. Bergen said he’s going to run upstairs to the imaging center and find a radiologist who will at least give him a preliminary report on my scan.

I’m not expecting good news. Everytime I get a scan, my tumors have grown back, or doubled, or more have grown. But hopefully, they will have slowed down a bit. This is my first scan since chemo. My last scan was about three months ago when I was on the trial for Sorafenib.

As for Davanat, the people who have contacted me and made some posts on this site are shareholders in the company and not the company itself. I am keeping the possibility of compassionate use of Davanat on the back burner. The Phase II clinical trial probably just opened, but they’re looking for people who have never been on chemo. Had I not been on chemo, I would consider this trial. But after I went off the Sorafenib trial, I just felt like I couldn’t wait three months to have a new treatment.

The two shareholders of Pro-Pharmaceutical (makers of Davanat) who contacted me had family members who had cancer. Tom’s mother had colon cancer and he tried to get her into the Phase I Davant trial, but she died before they could get her in. He also had an aunt that died of CC several years ago. I think his motives were genuine – he just wanted to let people know about the drug that he felt might have saved his mother. He bought stock in the company as a result of the research he had done to help his mother. My doctor and I had both called Pro-Pharmaceuticals about the trial, but the doctor in charge of the trial said I wasn’t eligible. Tom called the doctor on my behalf as well, but was informed of the same thing – since I was on chemo, I wasn’t eligible. The clinical trial doctor said he felt it was better to stick with Gemzar and other traditional treatments with a proven track record rather than an experimental drug. He also mentioned that at the big oncology conference this summer in the US it was reported that Gemzar is showing better results than previously thought.

Hope this helps,
Caroline

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