violarob
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Jeez, I’m overwhelmed! Many thanks for your good wishes, everyone. This little website is truly an oasis of hope for all of us.
Violarob
Dear Rortmanns:
I know this is a tough time for you. Search all the messages on this website; every patient has their favorite supplement or alternative medicine therapy. If you find one that looks interesting, almost everyone on this discussion board would be happy to correspond with you regarding details of the therapy.
My own observation of this discussion board tells me that those who combine alternative therapies with standard chemotherapy do better than those who use just chemo alone, or just alternative therapies alone with no chemo. (That’s unscientific; just my opinion)
Sometimes just the act of searching for alternatives can make you feel better! It keeps you engaged and involved in your own care, which improves attitude. And attitude is a very powerful thing indeed!
Wishing you all the best,
Violarob in Texas
Dear Rose May:
I did some research on hyperthermia when I was first diagnosed. There is very little in the United States. The science behind the therapy is sound, but the problem is proving a direct correlation between the heat treatment and weakening/killing of tumors. So far, no one has proven an iron-clad connection.
Dr. Joan Bull at the University of Texas science center in Houston has an ongoing study combining hyperthermia with gemcitabine. You would have to go to the Houston medical center to be treated. Here is a link to her website: http://www.uth.tmc.edu/thermaltherapy/JoanBull.html
The Cancer Treatment Centers of America offer hyperthermia, but only for “surface” cancers like melanoma, etc. Any cancer/tumor which is more than 1 cm below the surface of the skin is not appropriate for the kind of hyperthermia they offer. (They use a diathermy-type machine, which does not penetrate very deeply into the body.)
There is supposedly a clinic in California which offers hyperthermia treatment, but I could not find any information about them.
I actually devised my own home hyperthermia treatment when I started my chemo a year ago. I used Dr. Bull’s protocol as my model. 48 hours after receiving my chemotherapy, I sit in the jaccuzzi for 45 minutes to an hour. I take my temperature every 5 minutes with a thermometer, and I can usually get my body temperature up to around 101 degrees. I drink lots of water while doing this, and never do it alone in case the unforeseen happens. The theory goes that 48 hours after chemo infusion, the lesions are at their most vulnerable, and the hyperthermia adds more stress to the tumors thus potentiating the effect of the chemo.
Heating up your body like this can be dangerous!!! So please, anyone else out there who is considering doing their own therapy, be careful and consult your physician to see if it is safe for you to spend extended periods of time in a hot tub.
Offered with caution,
Violarob in Texas
Dear “Walk”: Is he eligible for another procedure which might make him feel better but is not as invasive as chemoembolization? I am thinking of radiofrequency ablation. If done percutaneously (through the skin, rather than as open surgery) You are in and out of the hospital the same day, and it can do quite a bit of good.
As you have read in all our messages, every treatment has a wide range of possible side-effects. Example: One person taking gemcitabine may have no side-effects at all, while the next person on the same dose may have fatigue and nausea. If your doctors are honest with you, he should be able to make rational decisions as to what kind of therapies or palliation he would like to employ.
All the best to you,
Violarob in Texas
Dear Maureen: Good to hear you are being proactive to help your mother-in-law feel better. There are so many supplements, herbs, vitamins and foods out there which can be of benefit to feel stronger and help the various therapies work better! My personal favorite is “Beating Cancer through Nutrition” by Patrick Quillan.
Wishing you all the best!
Violarob in Texas
David:
Congrats on the remission news! I have a couple of things to add from my own experience: Regarding PET scans and CT scans: My oncologist doesn’t much like to use PET scans for cholangio. He says they can show too much other unrelated stuff and can cloud the issues. He prefers CT scans as being more specific. I also understand the discomfort of getting different opinions from the same scan. When I get a CT scan, there is always a slight difference of opinion between the radiologist, surgeon and oncologist as to the meaning of the scan. (Radiologist is usually the most pessmisitic and the surgeon is usually the most optimistic.) Reading scans is an art as well as a science, so you will never get two people to read a scan exactly the same way. I always insist on seeing the actual scan and make them explain to me what they see and why they have the opinion that they do.
While we are all thrilled to hear that you are in remission, one common thread on this discussion board is that cholangiocarcinoma tends to come back. If I were you, I would continue to get a CT scan done at least every 6 months for a long time, just to be on the safe side. If it does come back you want to find out earlier rather than later so you can continue to beat this beast!
Wishing you many years of good health and good luck!
Violarob in Texas
I had chemoembolization with just doxorubicin. No nausea, but I did have intense pain for about 12 hours following the procedure. Make sure they have plenty of morphine standing by for the first hours following the procedure. I did not have any nausea, but did have a low-grade fever for a day or two. Also, I lost quite a bit of weight the first week afterward, and found it difficult to put that weight back on; it took me several months to get back to my normal weight.
Violarob in Texas.
I would like to second the recommendation of the Patrick Quillan book, “Beating Cancer through Nutrition”. He talks about diet, but also about supplements, vitamins, and other alternative home treatments which are easy to follow. The book is well indexed and has liberal footnotes, so you can always look up the original medical journal that is the basis for his recomendations. Also nice is that the book is not dogmatic; he just lays out the information and invites the reader to decide how much or how little of the diet they would like to follow.
Best of luck to you!
Violarob in Texas
Dear Elizabeth: Welcome! This discussion group is great. Lots of first-hand information, the best kind. The drugs you are taking (gemcitabine, pantimumubab) are the absolute newest drugs and are showing high levels of effectiveness. I hope they work for you! If you feel you want a second opinion at some time, I highly recommend MD Anderson Cancer Center. They have a team called the “Liver Tumor Study Group” made up of oncologists, gastrointerologists, radiologists, surgeons etc who do nothing but treat liver tumors. They have TWO doctors on the team who specialize in cholangiocarcinoma.
Please keep us informed of your progess, and best of luck to you!
Violarob in Texas.
Hi, Jane:
I have also sent you a private response.
I know the boat you are in. I too was scared to death to try chemo the first time. I refused to eat the day of my first treatment because of my fears of nausea, vomiting, etc. Well, I sailed through that treatment and all other treatments with no problems at all. As a matter of fact, I go to the gym and work out on my chemo days AFTER treatment! Decadron and Zofran (which they give you alonside the chemo drugs) do wonders for fighting side effects. No one has any idea that I am on chemo unless I tell them. I do not look sick or tired, and I do all my normal activities.
Chemo is a reasonable option, because that is the main tool for stopping any NEW tumor formation. Theraspheres and chemoembolization can only treat the existing tumors and sometimes are not any more effective than IV chemo. There are lots of success stories in this discussion group regarding Gemzar, cisplatin, Tarceva and Avastin. Your doc sounds like he/she has a good plan; stabilize disease with chemo, then attack the new tumors with Theraspheres, and then follow-up with “clean-up” chemo after the Theraspheres. That is “state-of-the-art” treatment for the time being.
Good luck, and let us all know how you are doing!
Violarob in Texas
Questions about disease progression:
1.) Liver reserve: I have been a patient at the Baylor Liver Center in Houston for 10 years, and a patient at MD Anderson for one year. My liver docs have told me that one can function normally with only 10% of the liver working. The liver is a very “redundant” organ, so it has a huge reserve. However, once you pass the 90% damage point, the complications pile up really fast. That is why someone can go for years with a liver tumor with no symptoms at all, even though the liver is being slowly eaten up.
2.) Cachexia: More commonly known as “wasting” syndrome. Cancer tissue is very ineffecient in the way it metabolizes food in order to grow and stay alive. As a result, it “steals” food resources from the rest of your body, resulting in weight loss and general malnutrition. It is a vicious cycle. The more weight you lose, the weaker you become, the harder it is for your body to fight off the cancer, the more it grows, the more resources it steals, and the more weight you lose, etc.
This is kind of a grisly topic, but I hope this posting helps to answer Robyn’s original question.
Violarob in Texas
Dear Katie:
Welcome! You will find lots of wonderful friends in this discussion group. Sounds like you are getting excellent treatment. Liver resection plus gemicitabine chemotherapy is very aggressive, but that is the one-two cholangio punch that can help keep this disease at bay.
Keep your chin up; you have great attitude!
Violarob in Texas
Thanks for posting this interesting information! I wonder how this differs from hepatic artery infusion, or TACE which locks the chemo drug in place in the liver. Anyone have more specific info? Thanks!
Violarob in Texas
Glad to hear you are recovering quickly and that you had adequate pain control post-procedure. Which drug did they use for your TACE? Was it doxorubicin? Keep us posted on your progress!
Violarob in Texas
Hi, Jeff: I was hoping for better news, though I am glad that you gave the Tarceva a try. I saw my onco doc today at MD Anderson, and he says that Tarceva is still “trial and error”, and they don’t know yet why some respond and others don’t. You are brave for giving it a shot! My hat is off to you, as always. You are my favorite poster; please continue to contribute! Sending you good wishes every day.
Violarob from Texas
