srs74 wrote:

My mom was diagnosed with cc in last month and two surgeons at her local hospital agreed to resect.  We went to MD Anderson for a second opinion and were a disappointed to find that a decision was made that resection was not an option at this time and her case was assigned to a medical oncologist rather than one of the surgical oncologists or one of the oncologists at MDA that specializes in cc.  At the end of the day, my parents were not comfortable at all with the experience at MDA and we've ended up back with her local oncologist.  I think I probably do believe that the decision to not resect at this time was the right one, but I too was disappointed that we didn't get to see someone who truly specializes in cc. 

Any thoughts on this given your positive experience with MDA? 

Thanks.

Dear Srs: Hard for me to comment, since I don't know who you consulted with. There are many reasons to defer or delay a resection of the liver. If you have a diagnosis of cc, I can't imagine why they would not refer you to one of the GI medical oncologists like Dr. Javle or Dr. Kaseb. The GI department at MD Anderson works as a team, so if they referred you to a medical oncologist, then the surgeons felt that was the best course for your treatment.

Again, without details it is hard to comment. Can you tell the group what course of action the medical oncologist at MD Anderson recommended for you? Many members of this group have probably been through it and can tell you their experience with the therapy prescribed for you.

I any case, you have to do what feels right for you. If you trust your local oncologist then that is worth a lot. Best of luck to you!

Violarob in Houston, Texas

Dear Irenea:

Last spring I went on Gemzar alone as "maintenance" therapy, after very successful combo treatment of Gemzar+ cisplatin with Tarceva pill on the side. In my case, the Gemzar alone did me no good at all. I had tumor recurrence within 3 months.

If you are ready to take the plunge into chemo, I would recommend the full Gemzar + cisplatin regimen. They are discovering that has the best result for shrinkage and stabilization of disease.

Whatever you decide, best of luck to you!

Violarob in Texas

Dear Houston Mom:

I was prescribed exactly the same regimen last year (gemcitabine + cisplatin) with Tarceva pill on the side. I got very good results from that combination, with several months of shrinkage and stabilization. My side-effects from Tarceva were minimal. The tumors were then killed with RF ablation. I would say give the Tarceva a try. You can always stop taking it if the side-effects get too hairy.

You mention that your new tumor is 2 cm in diameter. Have your docs mentioned radiofrequency ablation as an option? That is the perfect size tumor for RF ablation. However, they do get nervous if the tumor is too close to a major blood vessel or other sensitive structure.

I also live in Houston, and receive my care at MD Anderson. I wish you the best of luck!

Violarob in Texas

4

(3 replies, posted in General Discussion)

How long have you been on the Tarceva? I had some side effects in the beginning, but they lessened over a period of 3 months. If you are in the first month or so, you might want to stick with it and see if the side effects get better.

Violarob in Texas

5

(6 replies, posted in Hospitals)

Dear Rook:

Please be careful! There are a lot of quacks out there who will prey on the confused and desperate. When I was first diagnosed, my strategy was: Investigate EVERYTHING, but decide cautiously. This web site is a GREAT place for bouncing ideas around. I think you are doing the very best thing, bringing your research here to the discussion boards to check out big claims against the personal experience of everyone here.

Good luck to you!

Violarob in Texas

Hi, Gary:

MD Anderson is very particular about the way they do things. If you want to get a second opinion from them, you must become a patient, even if it is only for one visit. However, if you do become a patient, they will bring the full resources of the entire institution to bear on your case to give you the very best answer. Commonly, people will come to MD Anderson, referred by their home oncologist for an evaluation/second opinion. MD Anderson will then give their diagnosis and craft a plan for treatment. The patient will then take that information back home and have their primary oncologist where they live implement the treatment plan. That is the system that allows patients to have their case evaluated by MD Anderson, while still having the convenience and comfort of being treated in their home town.

Best of luck to you!

Violarob in Texas (a current patient at MD Anderson)

Devoncat:

Xeloda and oxilaplatin are also highly regarded therapeutic drugs for CC. Treatment choice has a lot to do with number of lesions, metastases, rate of growth, placement of primary lesions, etc. These treatment protocols are all new and emerging. At this point no one can say for sure that gemzar + cisplatin is superior to Xeloda + oxilaplatin, especially in your particular circumstance. It sounds like your doctor is trying to make the best choice for you personally. Good luck to you!

Violarob in Texas (NOT a doctor, just a heavy reader! :-)

Gemzar (gemcitabine) + cisplatin: I was on this combination for several months last year and had a good response; shrinkage and stabilization of all lesions (7 of them!), enough to perform radiofrequency ablation. Read Marion's post about this elsewhere on this site. They are discovering that gemzar + cisplatin works far more effectively in combination than either drug given alone. It is also becoming common to add a third drug to this combo, like Avastin (bevacizumab) or Tarceva (erlotinib).

Anyone out there who is on Gemzar alone, ask your onco about combining it with cisplatin!

Violarob in Texas

Neulasta: I had my first injection of Neulasta last week, one day after chemo (Avastin + gemcitabine + cisplatin). My choice was either accept the Neulasta injection, or skip chemo for 2 weeks. I wanted to stay on schedule, so I took the Neulasta.

I had a low-grade fever and mild body aches for 2 days following the injection. Not bad at all, just took it easy for a couple of days. White count rebounded into the normal range and stayed there. (My platelets were not as cooperative...)

I would say to anyone who could benefit from it, to give it a try at least once to see how you tolerate it. I think that if it allows you to stay on your chemo regimen and keep fighting, it is worth it as long as the side-effects are tolerable.

Violarob in Texas

I have personal experience with this, too. I had gemcitabine + cisplatin last year, with very good result. A few months after my RF ablation procedure, they put me on gemcitabine alone as "maintenance" therapy to try to keep from having a relapse. Well, the gemcitabine alone did not do the trick; the cancer came back.

You are right; gem + cisplatin seems to be emerging as the standard of care, (with some oncologists adding Tarceva, or Avastin or Xeloda, depending on the individual patient situation.)

Love your posts!

Violarob in Texas

About tumor markers: My onco says that the CA19-9 tests are useful to indicate trends over time. A single test doesn't tell you enough. I have mine done every 3 weeks, and they maintain a flow chart going back over the last 18 months.

Violarob in Texas

Thanks for posting this, Marion. The study was authored by Dr. Kaseb, one of the GI oncologists at MD Anderson. They are discovering that gemcitabine + cisplatin is much more effective than gemcitabine alone.

Violarob in Texas

Has anyone in the group been following the news regarding nanoparticle technology to treat cancer? A lot has been happening very quickly in this field. Nanospectra Technology has already moved to human trials for head and neck cancer. The link is: http://www.nanospectra.com

Dr. Steven Curley at MD Anderson has completed small animal trials, with great success. He has been curing rabbits and mice of liver cancer! He begins large animal trials in September. He hopes to begin human trials very soon after concluding the large animal trials. The link is:
http://www.kanziuscancerresearch.com

There is plenty of other research going on. I find this all very exciting, since progress is being made at a rapid pace (well, comparatively rapid for the field of medicine).

Anyone else have thoughts or news on this topic? Please share!

Violarob in Texas

14

(0 replies, posted in Introductions!)

for those of you who have been following my story, I have posted an update in the section: "What's working/good news; violarob one-year update". Thanks!

Violarob in Texas

Newest update:

Not the greatest news. I had CT scans done in May, 2009. Scans showed 2-3 new lesions, but rather small, about 1.5 cm each. TUMOR MARKERS: AFP went from 0 up to 111; CA19-9 went from 26 up to 65. My onco at MD Anderson, Dr. Javle, said not to panic. Easy for him to say! I was really getting comfortable in my remission, and it was a shock to get back into "fighting mode". Last month I started a new chemo regimen of gemcitabine + cisplatin + Avastin (bevacizumab) IV infusion every 3 weeks, with Tarceva (erlotinib) 150 mg pill every day.

When I went through chemo last year, I was very lucky; no side effects at all. This time around is a bit rougher. A little fatigue and low-grade fever the week of infusion, but not too bad. It is getting better as time goes on. Fourth of July weekend I went swimming and kayaking, with normal energy and appetite. Yay!

Dr. Javle thinks he can get control of the lesions since he caught them very early and very small. There are still no metastases outside the liver. We won't know for sure until August, when I have my next scans done. He is concerned that maybe I am getting too much chemo and suggested cutting one or even two of the drugs. I told him "no way!", that I want to continue hitting the cancer as hard as possible while I am strong. We will discuss it again next week

If we can get control of the lesions (i.e. no growth over a 3-month period) then he is talking about some kind of targeted therapy: Chemoembolization, or radiospheres, or maybe RF ablation again. He is making no promises or definite plans for targeted therapy. He says first things first, get control of the lesions.

Well, that's about it for my long-winded update. Not good news, but not terrible either. I am feeling good, doing all my normal activities. Lesions are small, and no mets outside the liver. I am now 19 months after my initial diagnosis. Everyone keep your fingers crossed for me!

Violarob in Texas

Hello all: I have been absent for quite a while from the group. I will post my news in another section of the discussion board. (Unfortunately, my cancer has returned after a five-month remission.)

To Hector ("Hecace"): You are in great hands with Dr. Curley. Since your post was dated in May of 2009, I am assuming you have already had a consultation with Dr. Javle. He is a brilliant guy, and has all the up-to-date information regarding treatment options. He is an honest guy, and is willing to share as much information as you care to handle. If you have specific questions, please e-mail me privately and I will answer as best I can.

To "JamieD": My chemo regimen last year was gemcitabine + cisplatin IV infusion every 3 weeks, with Tarceva (erlotinib) 150 mg pill every day. I was on this regimen for 5 months, then had radiofrequency ablation. I was off therapy for 5 months. Recent scan showed growth of new tumors, about 1.5 cm each, very small. (The old tumors, treated with RF ablation are still "dead"). My new regimen is gemcitabine + cisplatin + Avastin IV infusion every 3 weeks, with Tarceva 150 mg pill every day. However, Dr. Javle is worried this might be too much, and may delete one of the drugs. I will discuss this next Monday with him. Every patient has a different regimen because of their unique circumstances, so I would caution you not to regard someone else's regimen as the "magic bullet". It is good to compare, but not necessarily good to copy! If you have other specific questions, please e-mail me privately and I will answer as best I can.

Violarob in Texas

17

(10 replies, posted in General Discussion)

Dear Walk:

You are right: a tumor 10X16 is too big for RFA. If your dad is at peace with his decisions, then I hope you can find comfort in that. Many blessings to you as you continue to love and support him.

Violarob

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

Howdy!

I am making a general offer to anyone out there who is currently a patient at MD Anderson Cancer Center, or who is considering seeking treatment there. I live in Houston, and have been a patient at MD Anderson for a year. I am happy to answer any questions about MD Anderson, the Houston Medical Center, or Dr. Javle who is one of the cholangio experts there. I am also willing to answer questions about my treatment regimen. I was diagnosed in december of 2007. I have had no disease progression since that time.

MD Anderson was again rated the No. 1 cancer treatment clinic in America last year. I am very pleased with my care there.

Best wishes to all,

Violarob in Texas

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

22

(10 replies, posted in General Discussion)

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

23

(5 replies, posted in Introductions!)

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

25

(10 replies, posted in General Discussion)

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.