Xeloda Added to "the Cocktail"

As in Bridget Jones Diary . . .

Weight: 65 kilograms (about 142 pounds)

Alcohol Consumption: 0, Cigarettes: None for a long time

Hemoglobin: 12.3, up from 11.7 last week (normal 13 - 16)

White blood cells and platelets are normal.

Tumor Marker CA19-9: 3358 (normal 0 - 37)


I had my sixth infusion of Gemzar (gemcitabine) this past Tuesday. My oncologist added Xeloda (capecitabin) to my chemotherapy regimen, which I started in pill form on Wednesday morning. The Xeloda has more side effects - I have a headache, heartburn, achy joints, more queasiness, and just really tired. My pattern with Gemzar seems to be that I feel fatigue on Thursday and Friday after chemo on Tuesday, but I come out of it on the weekend. The Xeloda is adding to those symptoms, but so far I've not had any of its more serious side effects (extreme nausea or diarrhea, hand-foot syndrome, mouth sores, fever) which requires suspension of the drug.

My oncologist said I could quit taking the Xeloda next week, as I have a vacation scheduled for July 7th - 14th. I am taking a writing workshop in Taos, NM. I have such a headache today, which is making me cranky, that I don't think I could drive or sit in a class or do much of anything. This morning when I woke up with it, I didn't want to move at all. My cat Biscuit and I lay in bed and watched the hummingbirds. We have a feeder just outside the bedroom window, and each time one would land, Biscuit would make a slight chatter so I'd look up and see the hummer. Biscuit is a yellow tabby that sort of looks like Jabba the Hut - she's a hefty gal - but very good company. Our other cat is Dumplin', a calico, somewhat standoffish, but affectionate in her own way.

We started melodrama practice on Wednesday night. I have a small, but funny part: Mary Pickaxe. Our performances are August 2nd, 3rd, and 4th at 7pm. This is one of those things that will keep me going.

I did just eat breakfast and took all my medicine including some Tylenol which I hope will help my headache. I have felt "foggy" the last two mornings. I hope this goes away because I've got so much to get done. The Fourth of July is coming up which is our busiest week of the year.

I feel like such a chemistry experiment with all the medications I'm taking, but sometimes I think we just have to "embrace the medication" and let it work for us. The morning pill box now includes: Xeloda, Zoloft, Kytril, Prilosec, Tylenol, green tea extract, a multi-vitamin (Flintstones for me), Omega 3, Co-Q-10, and B-6. Most of these are repeated at night.

Just up here in Colorado, embracing the meds, watching hummingbirds and mule deer grazing in the yard, memorizing lines, and waiting for this headache to wear off.

Sincerely, Caroline

Pooped Out!

Right after my last post when I said my energy had been good, I started getting really tired. I just wanted to lie down all the time. I've pretty much been able to take it easy, but it puts me behind on work for the bookstore. Oh well, it'll still be there. Mentally, I've felt unmotivated as well. This morning, I think my energy level is better. I did read two books this week which is unusual for me. (I know I own a bookstore, but I do all the ordering, bookkeeping, and management, so I hire people who like to read.)

I have had just a little touch of queasiness this week - less than last week. I got my prescription filled for Kytril, but I haven't had to take it. I've been taking papaya enzyme for the slight upset stomach, and it seems to be working. I don't know if it really works, but the little pills taste good. Maybe it's just a placebo for me, but whatever works. There are other digestive issues as well, but I'll spare you those gory details, except to say that I noticed on the Preparation H package that there could be drug interference with anit-depressants. (I started on Zoloft about a month ago after my life expectancy talk with the oncologist.) It's always something with cancer! Turns out I can use both, but I have to use "the H" sparingly and not take it orally. 10-4 ont that one - no sucking the Preparation H out of the tube!

My CA19-9 tumor marker test from last Tuesday showed that it was in the 2800 range which the doctor said was good news. This is up from 2577 from the week before. He was glad that it hadn't shot up into the the 3000's. The normal range is 0 -37.

I went to Silverton yesterday with my friend Jill. We had a great time talking and hanging out. It was a gorgeous day - blue sky, lots of sunshine. The crepe-paper poppies have been in bloom around town and are just outrageously bright and beautiful. Our pots of pansies, petunias, lobellia, dianthus, etc. are in bloom and so pretty, and the hummingbirds are constantly buzzing. The deer have chowed down on the annuals in the front flowerbed, but we still have some blooms out there. Summer is so wonderful here. I don't think the wildflowers have started in the mountains yet. We could really use some rain.

Better scoot. Gotta open the store and do my radio show later today.

Thanks to everyone for your prayers, concerns, interest, and LOVE! You make my life wonderful. To my fellow cholangio patients, thanks for your blogs and discussion group posts - they really help. My best wishes and prayers to all of you!

Just up here in Colorado, listening to the hummingbirds, enjoying the flowers, and grateful for each day that I have in my own little paradise!

Sincerely, Caroline

Five Down, Two to Go

I had my fifth infusion of Gemzar this week. My blood work showed that my red blood cell count fell below the borderline of anemia, but only slightly. So I was able to do chemo #5 and not have a shot this week. My CA19-9 tumor marker was back up to 2500-something a week ago. It was as high as 3600+ before I got off the clinical trial and fell in the 900 range a few weeks ago. Since it is elevated again, my oncologist wants to add another chemo drug to the mix, possibly Xeloda which is taken in pill form.

I have two more chemo sessions after this, then off one week. I'll be in Taos for a writing conference during that week off.

I got to attend the first hour of my support group last Tuesday, so I enjoyed that.

I realized this week that the oral medication that I take before chemo is a steroid which is supposed to help with nausea. I had trouble sleeping Tuesday night after my chemo treatment which was the case last week. So I'm going to see if it's okay to take Ambien on those evenings to help sleep.

So far this week, I have not had the queasiness I had last time, so I am grateful for that. My energy level is holding up well so far.

We had a good time last weekend in Colorado Springs where I had lived back in the 70's in an old house on Colorado Avenue on the west side of town. My girlfriend Alana and I went up to Manitou Springs (a little further west of where I had lived), and I bought a couple of blouses in a hippie-clothing shop that was playing music from the 70's. It was like I never left Colorado Springs. I also bought a pair of turquoise blue crocs - couldn't resist the new color.

Just up here in Colorado, occasionally dressing like a "damn hippie" (my father is muttering to me from his grave) and wearing those brightly-colored crocs!

Sincerely, Caroline

Chemo #4, Davanat Update

I had my fourth Gemzar infusion on Tuesday. I forgot to take my routine medications on Tuesday morning, so I took them Tuesday at bedtime. One of my meds kept me up all night. I couldn't "call in sick" on Wednesday as I had a lot going on that day, and really, I felt pretty good despite little sleep.

Wednesday night I slept very soundly. I went to a meeting yesterday morning and never really woke up. So I came home and slept most of the day and slept really well last night. So I feel better this morning. I was just really tired - one of those low energy days.

I also feel queasy, but not really nauseated. I did get a prescription for Kytril, an anit-nausea medication. I had taken it after my first two chemo treatments - the oncology center gave me samples of it. When I went to fill my Rx for it, no one had it in stock. I found out it is a very expensive drug, but I have hit my deductible so I have no copay. So I was able to get on the Kytril yesterday, and my tummy feels better today.

As for Davanat, I spoke to a doctor at the pharmaceutical company and he said that for the new cholangio trial, they only want newly diagnosed patients who haven't had any chemo yet. The doctor also said there's only one cholangio patient that the Davanat was tested on, although she had very good results. My oncologist also talked to the Davanat doctor. He told both of us that it may be better to stick with Gemzar which has some track record other than try a treatment that there's no evidence for yet. The Davanat doctor also mentioned that at the recent ASCO conference, he heard that there's new evidence that Gemzar may work better than originally demonstrated.

Dr. Bergen and I discussed applying for a "compassionate use" of Davanat down the road if my Gemzar doesn't work out. Dr. Bergen said we may add Xeloda to the Gemazar in the near future which is a chemo drug taken in a pill form.

If any new cholangiocarcinoma patients are reading this, I would consider the Davanat trial. There should be more info posted soon on clinicaltrials.gov or contact the drug company at 617-559-0033.

Robert & I are headed to Colorado Springs today to attend a gem & mineral show and to visit friends. We'll be back tomorrow night.

Just up here in Colorado keeping the faith, getting some sleep.

Sincerely, Caroline

Looking into Davanat

I have been contacted by several people about Davanat which is a carbohydrate compound being tested to lessen the effects of chemotherapy. It has shown promise in early trials with colon cancer and cholangiocarcinoma, not only in lessening the side effects of chemo, but actually shrinking tumors as well. A new trial for cholangio patients is supposed to opening soon (sooner than the several months time frame that I recently heard it would be). My oncologist and I are going to discuss this further at my appointment next week. It may mean that I'll have to quit my current chemo regimen as quickly as possible so I can be off it for the requisite time period before going on the trial. The Davanat has been used in conjunction with the chemo drug 5FU and I think they're considering other chemo drugs as well, but not the gemcitabine that I'm currently taking.

If any of my fellow cc patients are interested in this compound, I would suggest contacting the manufacturer, Pro-Pharmaceuticals, at 617-559-0033. They also have a website at www.pro-pharmaceuticals.com. There has been a cholangiocarcinoma patient who got Davanat through a compassionate use provision.

Otherwise, I have been feeling pretty good - some queasiness, but still a good appetite. I do get really tired sometimes, but for the most part, my energy level has been good.

Just up here in Colorado enjoying the summer weather and spending time with my sister Diane.

Sincerely, Caroline

Davanat Trial

I called ProPharamceuticals yesterday about the Davanat trial for cholangiocarcinoma. Someone from the company called back and told my husband Robert that the trial won't start for a few months, which is why I couldn't find anything on clinicaltrials.gov or pro-pharmaceuticals.com. If I find out anything else, I will mention it here and on cholangiocarcinoma.org.

My sister Diane and I went on short hike yesterday a.m. with the local women's hiking group. (There's another woman in the group besides me who has cancer, so they chose this short hike so we'd be able to handle it. Unfortunately, the other woman with cancer just didn't feel up to it yesterday.) Then, Diane & I ran errands in Montrose and had lunch with a friend there. We came home last night and took it easy. We bought a bunch of bedding plants which we hope to plant in the next few days - some annuals and some herbs.

We're gettting some rain here which we need very badly.

I have to scoot. Gotta run the bookstore today.

Thanks everyone for your thoughts and prayers!

Sincerely, Caroline

Chemo #3 Today, Contacted About a New Trial

Robert & I went to Grand Junction today for my third infusion of Gemzar. My blood draw went very smoothly today. I got to attend a portion of my support group. The last two weeks I got 75% of a full infusion, but today I got 100%.

Dr. Bergen pointed out some items in my blood chemistry that are elevated. He said that these indicate the cancer or the chemo or both. He said if they keep elevating, we may have to add another chemo to the mixture. He mentioned one drug that is new and that may be controversial with my insurance company the name of which escapes me.

I was contacted tonight by a man from New Hampshire about a new compound being tested in conjunction with chemo for reducing the side effects of chemo, but in Phase I of testing, a cholangio patient had very good results with it affecting her tumors in a positive way. It's supposed to be in Phase II for cholangio, but on the www.clinicaltrials.gov site, it said it was being tested for colorectal cancer. The compound is a carbohydrate called Davanat manufactured by ProPharmaceuticals. (www.pro-pharmaceuticals.com, 617-559-0033 x115) I'm going to contact them tomorrow about this trial. I hope it really is being tested for cholangio. If you go to the manufacturer's website, there is an article from February this year about it being used in cholangio.

My sister Diane drove in today from Arizona, and it is so nice to have her here. She's going to help me with some things around the house and at work.

It's late and I better hit the hay.

Just up here in Colorado with my hope being restored each day.

Sincerely, Caroline

Chemo #2 Under My Belt

We are getting into our routine of Tuesday trips to Grand Junction for my treatments. We leave Ouray at 7:30am so I can attend a two-hour support group for women at the oncology center at 9:30am. Usually, I see my oncologist later in the morning. I don't always get to stay for the whole group meeting, but even if I get the first hour in, it's still a big help. I just love the other women I've met there. It's hectic getting up earlier that day, trying to eat something so I can take my meds, and get on the road, but it is well worth it.

I had my second chemo this past Tuesday. They checked my blood prior to the infusion. It showed that I was just above the borderline of being anemic which means my red blood cells have been affected. The nurse said there is a shot they can give me to help, but they can only give it once every two weeks, so I didn't have it this time. I think they wanted to save it in case I need it next week. I did feel really tired last Monday and Tuesday.

I am very squeamish about having my blood drawn and being poked with needles, but I usually handle it okay. I did almost pass out this last week. I had to put my head between my legs, and we had to start over again with the blood draw which they also use to set up for the infusion. The tech was very understanding and said it is a very natural response. Usually, I just look away and make Robert look me in the eyes. I think the borderline anemia made it harder for me to deal with being jabbed this week.

One of our members turned 80 in our support group, so we celebrated her birthday. She is really amazing how she's handled her cancer and some heart trouble as well. Unfortunately, another of our group members passed away last week.

The past two days, my energy levels have been pretty good. Still no nausea, but I'm taking some anti-nausea medication just in case. I also had a little steroid before the infusion which helps with the energy level. I've been able to sleep at night just fine. As I was getting my chemo at the noon hour this week, they provided lunch from the little deli in the oncology center which I thought was very nice.

The busy summer tourist season has started with Memorial Day last weekend, and we had good days in our shops. This week, I've taken it somewhat easy. I've been pampering myself with a haircut, manicure, and pedicure, and bought a new skirt. I attended two writing sessions - one for poetry and one for a group of women in the area working on longer prose pieces. I allowed myself to read most of yesterday, something I have a hard time doing even though I own a bookstore. So I need to get my nose back on the grindstone and get some real work done.

Thanks to everyone for your prayers and good wishes. It's beautiful in Ouray right now, so I'm enjoying the hummingbirds and flowers.

Sincerely,
Caroline