caroline-stoufer
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I take an Pro DHA Omega-3 Fish Oil gel capsule (500 mg) twice a day that has a strawberry flavoring added to it, so there’s no fishy taste. It’s made by Nordic Naturals of Norway and distributed in the US by Nordic Naturals of Watsonville, California. Phone 800-662-2544, website http://www.nordicnaturals.com.
-Caroline Stoufer
Dear Amilcar-
If you look under general info on this site, and go to the Family Blogs, the Johnson family has some info on a XL119 trial that Sam Johnson was on in 2005. If you go to the January 2006 archive, Mrs. Johnson has summarized their experiences threre. Apparently, the trial didn’t work for him.
Good luck!
-Caroline Stoufer
Just wanted to let everyone know what I found out about the new Davanat trial. I spoke to Bryan Hamilton of Pro-Pharmaceuticals on Monday. My oncologist spoke to him as well. He said they were looking for newly diagnosed patients who have not had chemo for the cholangio trial which should be posted very soon on clinicaltrials.gov.
Dr. Hamilton said there is not much of a track record for Davanat with cholangiocarcinoma, although the one woman who took it had good results. Dr. Hamilton also said that at the recent ASCO conference it was reported that Gemzar may be working better than originally thought. He encouraged me to stay with it at this time. My oncologist and I are keeping Davanat in mind for the future and possibly applying for compassionate use if my Gemzar doesn’t work out.
If any newly diagnosed cholangio patients are reading this, I would encourage you to look into the Davanat trial.
-Caroline Stoufer
Dear Patricia and Jules-
Patricia, I am so sorry to hear about your husband. I am just so sad to know he is not with us anymore.
Jules, thanks for the info on the chemo drugs. I will talk to Dr. Bergen about the new Avastin.
I have to scoot as we are headed out of town and my husband will be standing on his ear if I’m not ready to go. I have more info on my blog which you can access from this site.
-Caroline
Dear CC Patients-
There is a study being done at University of Kentucky regarding the use of the internet and dealing with cancer. You can access the survey at wintis.mowsey.org/survey. Go to the bottom right corner of the first page to proceed with the survey.
-Caroline Stoufer
Jules-
I am tolerating the gemcitabine alone quite well. I feel a little queasy in my stomach at times, but I still have a good appetitie and don’t have any nausea. I do get really tired sometimes. My oncologist pointed out some things in my blood chemistry (phospates, etc.) that he said are elevated, and if they continue to go up, he wants to add another chemo drug such as Oxaliplatin (sp?) or Avastin. He said the Avastin is the one the insurance company probably won’t like and might be controversial with them. I’m guessing this is because it may be more expensive.
I am going to talk to my oncologist more about the Davanat trial or trying to get it through “compassionate use”. To be in the trial, I’d have to be off the gemcitabine for probably one month at least and switch to 5FU or some other chemo drug. There was a post on this site about the Davanat maybe not being effective on tumors in the liver, so I want to investigate that as well. I hope to call Pro-Pharmaceuticals on Monday and then discuss Davanat with my oncologist on Tuesday. We talked on the phone about it last week, and he is receptive to looking into it further.
Hope you and your father are doing well. Have you heard from Patricia or Mary (was that her name whose mother has CC)?
-Caroline
Dear Mike-
I spoke to Mr. Cibotti last night from New Hampshire. I have a call into ProPharmaceuticals this a.m. There’s nothing on the ProPharmaceuticals or clinicaltrials.gov websites about the cholangiocarcinoma trial, only the past colon trial.
I have been off the Sorafenib trial for about a month. I am currently doing chemo with Gemzar, but I will discuss with my oncologist the possibility of going on this trial.
-Caroline Stoufer
Kate-
They told me that my fluid build-up after the surgery is not uncommon. My oncologist looked for it on my 3 week check-up after surgery. It did cause some pain on the side of my body where the surgery was – on my side, in my armpit.
They drained two liters of fluid from me in a procedure that was mostly painless until the end, and then it hurt like heck for a brief period of time. They said the pain was from lung reinflating.
I think the disease is so deadly because it causes tumors in the liver which are hard to treat. And I’ve been told, because there’s so much blood that flows through the liver, it’s easy to grow tumors there, which has been the case for me.
Hope this helps,
CarolineKate-
I am 51 years old and had my liver resectioned on November 30th last year. My tumor was about 10 cm and they took half of my liver, but it does grow back in an amazingly short amount of time – like in one month. I spent 8 days in the hospital. Once home, I tried to deal with my pain as much as possible with Ibuprofen, at least during the day, and take the heavier pain meds at night which caused serious constipation. I took stool softeners and ate a lot of prunes! (My sister wouldn’t let me go to bed one night until I downed 10 of them.)
It took about 2 months for me to get back to normal. For the first month, I felt like I’d been hit by a freight train. I ventured out a few times to a few functions. (The Woman’s Club named me Woman of the Year so I made it to the December meeting, but it took a lot of effort.)
I had a lot of pain on the right side where my surgery was and when I went for my three week check up, I had fluid which had built up on that side which I believe they call ascites. Once I had that drained, my pain was much reduced. Before it was hard to get comfortable enough to sleep.
I still have some pain from the inner incision when I sneeze or laugh. Like Evan said, your life doesn’t ever really get back to normal, but your mother might have a good chance.
Unfortunately, they found cancer in one of the lymph nodes they sampled durning surgery, and they told me I had a 70% chance of recurrence which it has done. The new tumors are growing really fast in my liver. I may start chemo next week. I had been on a clinical trial for sorafenib (Nexofar), but it didn’t work for me.
Good luck with everything. I think if you’re with your mother for one month, by then she’ll be able to do most everything by herself. In that second month of recovery, I’d have a day where I felt suddenly so much better.
-Caroline Stoufer
Ouray, ColoradoKate-
If your mother’s tumor is only 2 – 3 cm and it has not spread to the lymph nodes, then it sounds like she may hav a really good chance of beating this. I agree with Jules – look for the best surgeon you can find.
-Caroline Stoufer, Ouray, Colorado, USA
Hans & Kelly-
Hans, I am very glad to hear from you. My clinical trial doctor from CU Hospital recommended Gemzar + Xeloda if I do chemo. (I did get booted off the sorafenib trial due to rapid tumor growth as seen on my last CT-scan.) I do seem to have bronchitis off and on throughout the year. I was on a steroid for side effects of sorafenib and it cleared up all my problems. If you have trouble sleeping, ask for some Ambien. The steroid kept me up all night.
Kelly, are Xeloda and Oxiliplatin the same thing or two separate chemo drugs? I know you had good luck in getting your tumors shrunk for surgery.
I am interested in what’s working in the chemo realm as that may be my next step. Also, looking into other clinical trials, but at this point they all involve chemo.
Best wishes to you all,
CarolineDear Dan & Jules-
I asked my oncologist about liver transplant, and he said that I wasn’t eligible as my problem seems to be systemic and it wouldn’t matter whose liver I had, I’d probably grow new tumors in the new liver. (Both of my sisters have offered part of their livers, but I think they’re going to need them. One had hepatitis a long time ago, the other is a recovered alcoholic but has been so for so long, her liver is probably in good shape.)
I am looking into chemo and other clinical trials which all involve chemo. I did notice a trial in England. I don’t know if that’s a possibility, but Jules, is your father’s oncologist in favor of it? Wouldn’t mind crossing the pond for a trial. As I’ve said before, I’d love to visit England.
Good to hear from you both. Dan, sorry your mother wasn’t eligible for the transplant. My oncologist said there’s all kinds of issues with organ rejection, etc. There is a new trial in Florida for chemo + another drug. I can’t remeber if you are in that part of the country?
Jules, so glad your father’s chemo is going well. I am studying what everyone is doing and how it’s working. I have so much going on this summer that if I do go ahead with chemo, I don’t want to be too debilitated. Guess I don’t really have that much choice, but I am scheduled to do the melodrama August 2nd – 4th which is so much fun – I really don’t want to miss it. By the way, my clinical trial oncologist from Denver that I just saw last Monday said she recommended gemcitabine pluse Xeloda or Tarceva. (I don’t know if carboplatin is the same as Xeloda or Tarceva.) Gemcitabine seems to be the main chemo for cc patients.
Must run, but again, so nice to hear from you both,
CarolineI am off the clinical trial for Sorafenib. My oncologist called today to tell me the results of the last CT-scan which was this past Tuesday. My four tumors have doubled in size and I have some new small ones. The clinical trial only allows for 20% tumor growth, so I was told to quit taking the Sorafenib.
I am frustrated as my last scan was a month before I started the trial med. Then I was on for 2 weeks, off for two, and then back on at a reduced dosgae for three weeks while taking a steriod which is on the list of medications which interferes with the drug. They don’t take this into account. They don’t let you increase the dosage after you’ve had the side effects.
So if you ever go on a clinical trial, try to have a CT-scan right before you start the trial.
-Caroline Stoufer
Dear Jules, Patricia, and Susan-
Just a note to say I’m thinking about you three in England. My doctor says chemo is not on the horizon for me for a while. I think he’s getting some clinical trials set up in Grand Junction, Colorado, so that those will be available there if the Sorafenib doesn’t work out which we really won’t know until July, two scans from now. If a second clinical trial doesn’t work, then I’ll probably go onto chemo. I am trying to make notes from this website about what chemo is the best, but I haven’t really sorted it out yet. My oncologist (or was it the surgeon?) said chemo works 35% of the time (at best) on cholangiocarcinoma. Since we have a rare cancer, I’m sure it doesn’t get the research dollars as other cancers. Someone has to be in that 35% that the chemo works on. And it does seem that there are many success stories on this site. Maybe people who talk on the internet have a higher success rate than those who don’t talk about it. Who knows. There’s a study at University of Kentucky about the use of the internet and cancer. If you go to my blog from this site, and check the comments on my April 27th post, you should be able to link to that survey if you’re interested.
Anyway, I hope each of you has some time or support for yourselves. I know my husband probably needs a break from me sometimes. I try to encourage him to do some things for himself. Each of you has done so much for your loved ones – you
have been wonderful!Guess that’s it for now. Hang in there. Sometimes it gets better. Steroids have been great for me. My friend who has beat the odds with pacreatic cancer mentioned tarceva as helping. Patricia, your integrative medicine doctor sounds like a good choice at this time. Hope we all have a “rally” here soon.
-Caroline Stoufer
