violarob
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Dear Jeff: Glad to hear you have had a positive experience from EFT. Anything that spawns liberation from suffering is great, in my book!
BTW, I know you are sick of chemo regimens, but I wish you would give Tarceva (erlotinib) a second look. It has been really beneficial for me and I have had no side effects from this drug. But hey, you have to be the captain of your own ship. Best of luck to you. Your continued posts have a great help and inspiration to me, especially in the beginning when the first round of docs gave up on me and I was sure that I was “circling the drain”….
Keep on posting!
Violarob in Texas
This sounds like a logical plan. I am now on gemcitabine + cisplatin (and tarceva pill every day). My onco said that when/if this combination ceases to be effective, his next line of defense would be to change to gemcitabine + Xeloda. However, I have not gotten to that point, so don’t have first-hand experience to relate. Anyone else out there want to weigh in on this one? Jeff?
Violarob in Texas
Hi, all. My understanding of COQ10 is that it does have some anticancer properties, but the extent of those properties has not been definitively assessed or described. The problem with “miracle” cures is that spontaneous remissions and cures are known to occur, and it is difficult to verify when a remission is spontaneous, or is caused/assisted by the taking of supplements in the absence of a broad placebo-based study.
One thing that is known for sure about COQ10 is that this is depleted by almost every chemo regimen. Supplementation is needed to maintain it at normal levels following administration of chemotherapy. It is controversial as to whether it should be taken during active chemo, but is generally regarded as OK to take during the weeks of between cycles.
My favorite book about supplements is “Beating Cancer through Nutrition” by Patrick Quillan. He was the head nutritionist at Cancer Treatment Centers for 10 years. The book is like an encylopedia of supplements, vitamins and diets. There are tons of footnotes, so you can verify the claims by reading the original articles cited in mainstream medical journals.
I love supplements, and take a whole bunch of them, including COQ10, milk thistle extract, alpha lipoic acid, selenium, resveratrol, and rice tocotrienols.
To each his own, and good luck to all!
Violarob in Texas
Tumor marker tests are subject to wide variation, and are only meaningful when taken in context of multiple diagnostic tests. When viewed by themselves, they are almost meaningless. Different cancers will express certain antigens and proteins when they are active and growing. For instance cholangiocarcinoma often expresses the carbohydrate 19-9 antigen. 40 is considered a normal level. Some cholangiocarcinomas express this antigen at high levels, some express it just above normal, and some variants will not express it at all even when it is growing. The CA19-9 must be viewed in sequence over a period of months, and then compared with CT scans and liver function tests to give an overall picture.
In my case, my CA19-9 was around 65 when I was first diagnosed. Since I have been on chemotherapy over the last 6 months, it has fallen to 40. This has been supported by multiple CT scans which show no growth over the same 6 months, and liver function tests which are perfectly normal.
Unfortunately, one will see certain cases where the CA19-9 normal or only minimally elevated, yet scans show consistent disease progression and deteriorating liver function tests. So, CA19-9 needs to be evaluated only in the context of the overall big picture.
This is also the case with other cancers. For instance, regular hepatocellular carcinoma (HCC) expresses alphafetoprotein, or AFP. AFP of 9 or less is normal. AFP of 400 or more may indicated a rapidly growing cancer. However, there are some cases where the cancer is growing, but inexplicably is not expressing elevated levels of AFP.
Likewise for prostate cancer, which expresses PSA, or prostate-specific antigen.
I hope this helps to make some sense out of a confusing subject. I have spent much time researching this to try to understand this elusive lab test. Please don’t take my explanation as professional. Ask your onco doc, and don’t let him/her go until it is explained to your satisfaction!
Violarob in Texas
I’m sorry to hear about many people having side effects from Tarceva. Maybe my case is unusual, but I have had no side effects, and have been on it for 6 months. My tumors continue to be stable; no growth at all.
Violarob in Texas
I have had good luck with plain old fluoxetine (generic Prozac). I take just a little bit, 10mg every other day. On the off day, I take a supplement, 5HTP which helps your body to make more serotonin. Unfortunately, most antidepressants are trial and error. What works for one person may not work for another. Good luck to you!
Hi, Suzanne!
Everyone has different side effects. I have been on gemzar and cisplatin + Tarceva since April. I have had 8 infusions. I have experienced virtually no side effects. The Zofran and decadron made me feel better; no other anti-nausea meds needed. Also, my disease has been stable since January; no metastases. I have also gained 10 pounds.
Let your own symptoms be your guide. Listen to Jeff! He is a fountain of good information.
violarob in Texas
I have been a patient at MD Anderson since April. I am happy to answer any questions. I’m very happy with the care I am receiving there. They are on the cutting edge in every way. They share all information very freely, which I like a lot. No begging for test results or treatment info. All very quick and accurate.
They have a wide variety of treatments for cholangiocarcinoma, from chemo to surgery, to ablation therapy, to radiation to Theraspheres.
If I can help you, let me know!
Violarob in Texas
Dear Carrie Ann: The best resource I have found regarding nutrition and cancer is “Beating Cancer through Nutrition”, by Patrick Quillan. He was the head nutritionist at Cancer Treatment Centers of America for 10 years. The book is more like an encyclopedia, rather than a single dietary method, although different “diet methods” are discussed. It contains tons of information about vitamins, supplements, food value, food combinations, sugar evaluation, etc. Every statement in the book is followed by a foot note so that you can check the original source for yourself. It also contains a guide to practicing naturopaths and nutritionists in every state in the country. Add this one to your library!
Violarob in Texas
There are other postings on this web site regarding Tarceva. I think you can do a search to find them. I have been taking Tarceva for 5 months, in conjunction with cisplatin and gemcitabine. I had acne for the first 3 weeks, but none now. I am having no side effects for the past 4 months. My tumors are completely stabilized, with no mets outside the liver. At the moment, I think Tarceva has been FDA approved for only pancreas and kidney cancer, but it is commonly used now for cholangio and HCC. Good luck to you!
Violarob in Texas
This thread is very timely for me. My case was presented to the MD Anderson Liver Study Group in July (I guess I am considered an unusual case). I have mixed cholangiohepatocellularcarcinoma, complicated by chronic hepatitis B and extensive cirrhosis. There are 7 small tumors scattered throughout both lobes. (The largest tumor is only 1.2 cm, and the smaller ones are barely visible on scan). Oddly, my remaining liver reserve is functioning at a very high level with all normal lab values. I have high energy and work every day.
I am not a candidate for liver transplant, and they said radiofrequency ablatioin is too dangerous for me, but they would consider treating me with SIR spheres at some future date.
I will follow this thread, as I am most interested to know anyone who has had this procedure done, and their experience. Tumor shrinkage? Side effects? Insurance battles? Tell all!
In the meantime, I am doing great on my Tarceva/gemcitabine/cisplatin regimen. No side effects, and swimming every day!
Violarob in Texas
These experiments are happening just 2 miles from my house! Very exciting; I wish I could go watch.
There seems to be some kind of “race” to see who will be the first to bring nanosphere treatment to the clinic. Dr. Steven Curley at MD Anderson completed his first animal trials last November, with good results. I had no idea anyone was ready to go to human trials so soon. I hope they get a good result and that the trial is well designed. A poor result from the first one out of the gate could throw a chill on the rest of the field.
Violarob in Houston, TX
Dear Jeff:
While you are taking a break from your oncologist, I hope you are not taking a break from this group! Your comments have been very helpful to me and many others here.
A word about Tarceva, which you have not tried yet: I feel I have gotten a good result from Tarceva. I have had absolutely no side effects from this drug, though I know others here have reported differently. Tarceva is the drug of choice for my onco at MD Anderson, who specializes in cholangio.
Wishing you all the best. Enjoy your rest from the chemo-go-round!
Violarob in Texas
Dear Handyman: Thanks for your encouragement. The reason that I am excluded from almost all clinical trials is because of my unusual diagnosis. Understandably, they want everyone in the study to have the same diagnosis so that they are comparing “apples to apples”, not “apples to oranges”. I have visited several cancer message boards, and have yet to find a single person anywhere who has mixed cholangiohepatocellularcarcinoma.
I am very pleased with my treatment so far at MD Anderson. I have high energy, no side effects from the medications, and the cancer has been stabilized. Many thanks for your good wishes!
Violarob in Texas
