louise

I do not know about the study that came out of the UK, but I had both chemicals on day 1, only one on day 8, and neither on day 15 of a 21-day (3 week) cycle. On the days when I had both, I was usually at the hospital about 5 hours, but on the day when I only had 1 chemical, I was usually done in about 2 hours or less. I was on Gemzar and Cisplatin for both series of chemo (July 07 to Jan 08 and Sept. 08 to Dec. 08.) Chemicals did what they were supposed to do. I’m currently in remission. Had CT scan last week, saw oncologist yesterday, Jus come ba ck in about 2 months for follow-up).

Hope this helps!
Louise

Heather,
Remember, statistics are historical, not predictive. Also, those who have survived 5 years today had to have been diagnosed more than 5 years ago, and treatments, drugs, collection of knowledge, have changed considerably in that time. There are many people who have posted stories of being told they were inoperable but later had operations. There are also stories of prognoses becoming self-fulfilling prophecies. Does that mean that what we believe comes true? And if so, don’t you want to believe the very best for your sister? My brother-in-law is convinced that his mom fought cancer valiently until she lost hope. It may not have been the cancer itself, but the expectation that made her third battle her final one. And so far in this post, I haven’t mentioned the power of prayer. In my mom’s case, her oncologist believed that without surgery, radiation, or active chemo (she was on low-dose pills), she might last a year. With prayer as her primary weapon, she is still going nearly 3 years later, but she’s now in her final days.
I guess what Kris and I are both saying is that you don’t have to believe the stats or the worst. What the stats might really be saying is that there were a fortunate few who found it early, found good doctors, asked the right questions, found and chose good treatments, and never lost hope. Those who lost the fight include those who gave up, those who didn’t find or were not willing to try the “new”, the “experimental”, or whatever would work for them, or could not afford the recommended treatments. The stats do not tell you all the facts.
Keep looking forward and upward! The ride probably will still be bumpy but it could be a long and great journey.
Louise

Hi, Heather,

If you use the search forum above and put my name in as author/writer but do not put a subject in, it should pull up all the posts I’ve written, and that is one way to hear about what I’ve been through. Basically, I was diagnosed May 29, 2007 with a pathology report from exploratory surgery. I have since had 2 different sets (6 to 8 months each) of chemo, 28 days of radiation (Feb. to April, 2009, daily M-F), several procedures to insert/change stents, a hysterectomy, a jujenostomy, numerous scans and scads of blood draws, I have a port, my prayer chain keeps growing, and the hardest thing for me right now is that my Mom has taken a different path in dealing with her own cancer in the same family. She was diagnosed in Nov. 2006 at the age of 85-almost 86 and chose not to have surgery, radiation, or active chemo. She was on a low-dose pill of at-home chemo. Her oncologist did not expect her to last a year. A few weeks ago, he saw her again, amazed she lasted this long. Her latest scan showed metastasis to the lungs + and he referred her to Hospice. At initial evaluation most of us were thinking she might have another 6 months, but she took a fall Thursday. Still not interested in trips to the hospital/ER. She’s beginning to have fun visits from my Dad, who passed away in ’05 after 60 years of marriage. She is so ready to go and has been saying goodbye to everyone. After her fall, a hospice nurse estimated that Mom might have 2 weeks. Most of us are no longer comfortable with her being alone for long at all. So you might say a death-watch has begun. Of course, if I had had all the visitors she had yesterday, I would be exhausted. (4 of her kids, 7 grandkids, 6 of my cousins, a couple of my aunts, and daughter-in-law with her mom that I know about, could be more).
Throughout my journey with cancer, I have maintained my full-time job as professor at a community college, but I’ve come close to using up my sick-time a couple of times. I have my next scan on Wednesday this week. Ask me anything, I’ll respond. I’m a teacher with 6 kids of my own, most are grown, 2 still in high school. God has been very good to us. In some ways, this cc is a roller coaster ride. There are ups, downs, and bumps. Some people get a short intense ride, others have a lower, longer one. No way to know what her ride will be like, but best of luck as you share what you can of it. Does your sister know you are visiting this site? Is she interested in what you learn here?
Gotta go, hubby wants help and I’ve grading to finish. Summer school is over ang drades need to be posted by tomorrow evening.
Louise

Hi, Kris,

I was told I would probably lose my hair when I had chemo. My biggest concern was for my husband because he always liked looonngg hair. I gave him warning and time to think about it. When it seemed like I spent longer cleaning hair out of the tub than I spent cleaning the hair on my head, I asked him to shave the head. He did, and couldn’t get over how the hair didn’t do anything, the head has a beauty of its own. He explored a website that showed pictures of lots of women without hair before we cut my hair. I had him do it because, with 4 sons, we have good hair clippers. At church that first Sunday, our priest did a double-take and then he was fine. I saw one little girl stare at me but when I smiled at her, she smiled back. Other than that, I had no adverse reactions. I had people ask if it was Okay for them to feel my head. My hair was short, but never totally shiny bald. After the first chemo series, the hair came back pretty much like it had always been. When I faced a second series of chemo, my hair became an incentive for my son’s boy scout troop. I was doing the accounting for a fund-raiser, and I offered that if they had the money all turned in by some date, the boys would get to cut my hair. The boys thought that was funny. They met the goal, but when I took the clippers to get my hair cut, some of them were not willing to touch the clippers or work on my hair. They were funny. After the meeting, my husband still needed to trim it up a little. None of the scouts were interested in holding the ear out of the way so they could trim around it, and none of them were interested in “shaving” the neck, but finishing my haircut after the boyscouts started it only took Tom about 10 minutes (or less) compared to 45 minutes or more the first time. The hair seemed slow returning after the second chemo, but the radiation that followed may have been a factor. When I got the hair trimmed, removing the thinned hair made the thicker new growth underneath visible, so I had to laugh when people started talking about how much hair I had after I got it cut. As it has grown back this time, it actually has some curl. The color is still the same as always. Somebody I work with was telling me last week that she was asking herself who I was until she realized that my hair had finally grown in enough that I no longer look like a current cancer patient. We both had to laugh about that.
One day, my husband and I had gone out to dinner. A perfect stranger assumed from my short hair that I had cancer. She asked if I would mind telling her what kind of cancer I have, what that meant, how was I doing,… She finished by asking for a hug and offering to pray for me and my family. I never felt my hair made people upset, afraid, or unnatural. Yes, I continued to go to church regularly and I teach at a community college, so I never knew what strangers would notice my hair. I had a couple of wigs, but they were more uncomfortable than people’s reactions or thoughts on my lack of hair. I also had a couple of fun hats, but those were usually not needed. I did wear some turbans, but more for temperature control because the head would easily get chilled. The hardest thing for me with the Gemzar/Cisplatin combo was that it put me into menopause. So if you think of hair as just another accessory, dress it up any way you like, have fun with it, be comfortable. A friend used her chemo as an excuse to collect scarves, and she was always finding ones for her professional wardrobe at the thrift stores. They were also welcome gifts from friends.
Once upon a time, a woman with little or no hair was pitied or ostracized. Now, as long as you are comfortable with your look, the length of hair is no more important than the length of skirt, pants, …
Keep smiling! It makes people wonder what you’re up to.
Louise

Sally,
You may need to be her advocate. There is a search function at the top of this page as a first place to look when specific questions come up. There is a section for Hospitals/Doctors. We always encourage second opinions, especially when the doctor doesn’t seem to have answers. Of course, sometimes, the doctor has more info and the patient is not able to focus because the diagnosis is so scary so going with the patient to the doctor can be important. Please pursue a second opinion and follow your instincts! I agree with you, “small things” that need another look should not have to wait that long for the second look. By then, it could be too late for some of the options. If you read through the comments on this site, early detection is often the best chance people have of getting the care we need. Yes, insurance is a great thing! But be prepared, the insurance companies sometimes need to be fought as well. That is one of the places where an advocate can be really helpful. Ask the doctor how many patients they have seen with cholangiocarcinoma. At the hospital’s web site, check out the credentials of the doctors. Find out if the doctors regularly meet to discuss unusual cases. My dermatologist had not heard of cholangiocarcinoma before, so being with a top group doesn’t mean they know this type of cancer. I’m not sure my doctor had many other cc patients, but she does have a strong background in hematology, reads a lot about the cancers, and has presented my case to liver specialists and oncologists seeking suggestions and help more than once. Yes, this beast is nasty, but it can be fought. Attitude, faith, knowledge, these are ALL important tools. On my first visit with my oncologist, I made sure she understood that I wanted to be aggressive in this fight. I have had the wonderful work Remission twice already! My next scan is next week, and I’m hoping it continues.

God bless you and your family!
Louise

What Suzanne says about her cancer center could also be said of the place where I go. The Goshen Center for Cancer Care takes a holistic approach to the treatment of cancer patients. In addition to having traditional treatments, chemo and radiation, alternatives available include the naturopathic care, a dietition, acupunture, chaplains, etc. and they try to plan the appointments so that you minimize trips. I’ve even had the dietition, the chaplain, and the naturopathic specialist come to see me while I was getting chemo in the infusion room. Even when they see me in the halls around the hospital, I am called by my first name.

http://cancer.goshenhealth.org is their website. You can read all about the oncologists there.

Currently, Indianapolis and Lafayette have the only cancer centers listed in Indiana, but the University of Chicago Hospital is closer to me than either of the sites listed in Indiana. I am very happy with the care I have received locally (about 10 minutes from my home in northern Indiana), especially with Dr. Carol Westbrook. She sent me for evaluation to the radiation oncologist before my first treatment because the current literature at the time was suggesting chemo and radiation during the same period in an agressive attack. Though I was not considered a good candidate for that approach, it was considered. The oncologists have a regular weekly meeting where unusual cases are presented for input from various specialists, and my case has been presented more than once. I feel respected and part of the team deciding on my care. My questions have always been taken seriously, answered carefully, and anyone I take with me to any of my appointments is also respected and given a chance to ask questions.

Hi, Katie,

I’m wondering if weight might be a factor. When my port was put in, I weighed over 200 pounds. When I laid on my side, the shoulders sort of formed a bow and the soft tissues had nowhere to go but to press against the port. It was uncomfortable. Since then, I’ve lost weight (I’m under 180) and the discomfort is rare. Alternatively, if you’re real skinny, the port may just press against the bone with every movement you make. Without wiggle room, each movement may be jarring. So for me, posture, patience, and weight management were all part of the answer. Unfortunately, I can’t guarantee that any part of that will answer your questions or diminish your pain. I’ll be praying for you.
Louise