caroline-stoufer
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Dear Lem –
Cholangiocarcinoma is a rare form of cancer and not easily treated. It sounds like your father had surgery. How big was the tumor they took out?
Has the oncologist recommended chemo or any clinical trials or any other procedures? You may want to consider going to one of the better cancer centers such as MD Anderson, Mayo Clinic, or Sloan-Kettering.
I had my liver resected 4.5 months ago. They also found cancer in one of nine lymph nodes and they told me it would probably come back. It already has – I had three or four small tumors at my last scan about 6 weeks ago. I am on a clinical trial for Sorafenib – you can access my blog via this website. I suggest you read the family blogs, these discussion pages, and the patient histories. Also there is a cancer nutrition website. You can also get info off the internet by searching the website. The American Cancer Society is a big help, as well as, the National Cancer Institute. It is difficult because there is so much conflicting information out there in terms of alternative treatment.
Does your father have someone who can go to the doctor with him.? Does he like his oncologist? Where does your father live?
I have chosen to participate in this clinical trial, but chemo will be my back-up plan. I try to diet, eath healthy, and get exercise. I was taking some supplements, but I have suspended those for the time being. It helps to have a good attitude and a suport group.
This disease can take a person quickly, so I would make plans to see your father as much as possible this year. If he lives, you’ll be that much better off. I have to confess, I have not studied the stats for cholangiocarcinoma, but I know people who have their livers resected have a 40& chance of being alive in five years. I think I’ve been told the average survival rate is one to two years.
I’m sure others from this website (which is a life-saver) will have some advice for you. If you ever want to contact me directly my e-mail is buckskin@ouraynet.com. My cell phone number is 970-596-1068.
It’s not all bad, having cancer. You have time to get your life in order. People are good to you. You make yourself live in the moment and you really get to enjoy life. At least it’s been that way for me.
-Caroline Stoufer
Hey y’all-
I’m in Arizona visiting my sisters and I couldn’t log in for awhile because I couldn’t remember my password.
In Feb. 2005, I weighed about 165 pounds at my worst that winter. I was going to OWLS – Ouray weight Loss Support at the local library. (Weight Watchers will no longer hold a meeting in our county because we don’t have enough people. If they’d quit paying that duchess so much money, they might be able to afford smaller meetings.) Over the summer, I lost about 10 pounds without trying which should have tipped me off that something was up, but it was an extremely busy summer for me. I had my bookstore, I worked at the Chamber of Commerce doing bookkeeping, and I volunteered on Sundays at the Humane Society Thrift Shop. I weighed 140 at the doctor on Monday morning and I’ve been pretty stable there.
Patricia, 7 litres! I had two litres drained off me three weeks after my surgery and I thought that was bad. Your poor husband.
Steroids give you a good appetite, but I have had trouble sleeping.
I’ve heard them say that it is really not the cancer that kills you, but starvation. For someone like me who actually worked for Weight Watchers twice in her life (the program worked great for me), this is still weird. I tell people it’s one of the upsides of cancer – you get to eat all you want and still lose weight. Hell of a diet.
Everybody, let’s just keep haninging in there.
-Caroline
David-
My appetite was really low after my surgery last fall and has taken some time to recover. I hardly ate any solid food in the hospital. Food commercials made me nauseous. In fact, in one rather humorous moment, my hospital roommate’s family was trying to cheer her up and telling her in great detail everything on her dinner tray. “Oh, look here’s a nice salad with some lettuce and carrot and ranch dressing, Here’s a roll with some butter, and look, beef tips over noodles.” I thought I was gonna die!
-Caroline Stoufer, Ouray, CO
Hi Susan and Patricia-
I don’t know anything about the hydrazine sulphate, but I sure know about the steroids. I’ve been taking them now for about a week and my appetite is radically different than before. I can’t believe how much I’m eating. But I don’t sleep much either. I was in a writing workshop today and I asked a friend to drive me because I’ve only slept about 10 hours in the last week. I’m also dealing with another stressful situation at work which is probably part of why I’m not sleeping.
I’m slowly tapering off the steroids and will be glad to them over with, but I’ve been told aches and pains and other things come back. They gave me the steroids to fight the rash which is a reaction to sorafenib, but I’m wondering if my doctor also gave them to me to put some weight on.
After spending my life trying to diet, this is so ironic.
Anyway, it’s good to chat with you two,
CarolineGeoff-
That AHCC sounds promising and I must look that up. Unfortunately, I was asked by my oncologist to suspend the supplements I’ve been taking while I’m in a clinical trial.
I would consult with your oncologist, but if you think this is something that may work, it’d give it a try.
-Caroline
Dear dsdan-
I would check out the blogs and the other posts on this website. Patricia in England has a husband who is doing photodynamic therapy. The blogs have info on various chemo treatments which I haven’t had time to catch up on completely. Another person is having a liver transplant at Mayo Clinic. Also, you may want to consider a second opinion at one of the more specialized hospitals such as M.D. Anderson, Mayo Clinic, or Sloans-Kettering.
Please keep us posted,
CarolineHans-
One more thing, I made my oncologist take some blood and check my liver enzymes. He called yesterday morning and said they looked good. We were waiting for the results of a tumor marker he wanted to check which was elevated in February, but I haven’t heard back on that. I am very squeamish about having blood draws, so for me to ask for a blood test means I really want to know what’s going on. He wasn’t going to take blood, as I am scheduled to have that done at one of my scheduled check-ups for the trail next week. I’m seeing my local GP for that visit.
Okay, I think that’s it.
-Caroline
Patricia-
I just got in a book at our bookstore called EatingWell through Cancer and one of the chapters is about eating to gain weight. Would you like me to send you a few recipes? If yes, I may just post them on the nutrition section.
As I mentioned in my post about my clinical trial, while I’m dealing with a nasty rash, my energy and appetite have improved dramatically. I started on a steroid yesterday for the rash, and the oncologist said it would make my appetitle better as well. I worked 10 hours at the bookstore yesterday and did bookkeeping at home two hours before that, so my energy level was way up. Did come home and crash on the couch and did a little Sudoku and watched Real Time with Bill Maher – a comedy show about politics on HBO.
Glad to hear about your husband’s progress.
-Caroline
-Caroline
Hey everybody-
I forgot to mention that since starting on Sorafenib, about the time the rash started coming on, I also started have a lot more energy and a better appetite. I’m taking a steroid for the rash which will probably also make this better. I can see why athletes are wanting to take them.
Before, I was getting really tired a lot. So having my energy level come back up has been encouraging. I talked to a man who is taking Sorafenib for kidney cancer and he said he had more energy since taking the drug as well.
-Caroline
Susan-
I wish we had more TV shows in America like the one you described instead of our “reality TV shows”, many of which seem more staged than real – sort of like these wrestling shows. I think they should do a reality show called “Cancer” which would help educate people about cancer.
I hope you can get one of your mother’s doctors to tell you where they think she’s at. My oncologist is pretty good about warning me that I may not have that much longer. There are days though, when I use my “override” button and just tell myself that I’m not leaving this world until I’m damn good and ready, cancer or no cancer.
I have a post on the clinical trial section about how that’s going for me. Some good and bad. I have a really bad rash, but on upside I’ve got way more energy. They tell me that the rash is a sign that the drug is working.
Thinking of you and your Mum,
CarolineHans-
I am taking Benadryl as well as the steroids and vitamin B-6. Also using some lotiions and creams. My oncologist asked me to stop taking all my supplements to make sure there are no interactions.
The rash is extensive on my back and upper body. My face is very red. The rash is spreading some to my legs. If it gets over 50% of my body, I’ll have to stop the drug until it subsides. It’s starting to itch some. The drugs seem to be helping. The red in my face lessens, and the rash lightens up on my extremities. Scalp and other weird itchy places are getting better. The soles of my feet and the palms of my hands have been sensitive. I worked about 10 hours in the bookstore yesterday which didn’t help my feet.
Thank you so much Hans, for writing back. I think I have your e-mail address now, so I may contact you directly in the future. I hope all is going well with your chemo.
-Caroline
Geoff-
I am in Phase II of the clinical trial to test sorafenib on cc and other liver related cancers. My oncologist told me that sorafenib works 78% of the time in arresting renal (kidney) cancer. He has a patient who is taking it for tumors in his kidney and it is working beautifully. Sorafenib has already been FDA approved and is being used for renal cancer, so the 78% statistic is a quote from my oncologist for renal cancer, but still it gives me hope that it will translate to tumors in the liver.
You can go to clinicaltrials.gov to get more info on the sorafenib trial which is being offered through Southwest Oncology Group SWOG. (You’ll need to search by cholangiocarcinoma, and about 9 – 11 trials will come up – it should be one on that list.) My contact from the trial told me that I was the fourteenth person to start the drug in this phase. They will take 25 people and if anyone shows positive results, they will test another 25. I don’t anything about the Phase I portion of this trial, but I’m sure you can contact SWOG and ask questions.
“Hairballs” are my nickname for tumors and they grew in the 3 months since my surgery which is pretty scary. Hopefully, the sorafenib is in my liver giving them hell!
-Caroline
Hey everybody-
Started the sorafenib on Tuesday so this is day 4. So far, no real side effects. I have set up doctor’s appointments for monitoring for the next six weeks.
So far, so good, but I won’t really know anything until I have a scan next month.
-Caroline
Susan-
I am so sorry to hear that your mother had to go to the hospital, but maybe they can get rid of the infection and she can feel better again, at least for a while.
I have been getting so tired at night. This started before I got on the clinical trial medication. We’re making an effort to come home after work, relax, and go to bed early.
We leave today for a short trip over to Utah. My husband loves to go rockhounding. We’re meeting up with another friend and we will look for geodes and petrified wood. I will mostly stay in the truck and read, crochet, or nap, but hopefully, I’ll make a few “finds” myself. Just glad I have the energy to go with my husband.
I will think of you while we’re over in the Utah desert,
CarolineGood luck mnauss! We will indeed pray for you and your wife that you have great results and a speedy recovery.
I asked my oncologist about a liver transplant – my two sisters have each offered part of their livers – but he said that I would probably keep growing tumors regardless of whose liver I had. Besides, one of my sisters had hepatitis once and the other is a recovered alcoholic, so neither is a good candidate.
We’ll be anxious to know how it goes.
-Caroline
