violarob

Insurance battles really stink!

Regarding the whole issue of PET scans: My oncologist at MD Anderson prefers CT scans with iodine contrast rather than PET scans. He says he gets better visualization with the CT scans, especially when they are viewed in series over a period of time for comparison to look for shrinkage and other changes.

However, that is just his experience and preference. YOU should be getting the care you feel you need/deserve. Keep us posted on how things are going.

Violarob in Texas

Dear Gale:

Here is something to think about: When I had my radiofrequency ablation, I was surprised to discover on the day I was admitted that I was on the surgical schedule for a “liver resection”. When I asked the surgeon about this, he said “don’t worry; we are going to do RFA”. Interestingly, all my medical records say “resection”, and the hospital bill and insurance claim both said “resection”. Virtually all insurance companies will pay for a resection. I had no trouble getting my procedure approved and paid for by the insurance company.

I would not want to use this forum to advocate anything shady or illegal, but perhaps you might share this story with your surgeon. It might give him some very creative ideas….

Violarob in Texas

Dear Vincent: You are doing the right things, being very aggressive and not taking “no” for an answer. If your mom has only a single tumor 5 cm in diameter, that is definitely treatable. Don’t let them tell you that chemotherapy “doesn’t work”. I had chemotherapy with excellent results. The standard combination these days is Gemzar (gemcitabine) in combination with either cisplatin or oxyliplatin (sp?). Oral drugs are often added to this regimen, like Tarceva or Xeloda. If Cyberknife or Theraspheres are not an option, there are ablation therapies like radiofrequency ablation and ethanol ablation. Ablation can do major damage to the tumor without resection or major surgery.

Unfortunately, the leading hospitals for treatment of CC are not near to you. They would be MD Anderson in Houston, Mayo Clinic in Minnesota, Sloan-Kettering in NY, University of Pittsburgh Medical Center, and Cancer Treatment Center of America in OK. Having Medicare/Medicaid as her insurance may limit treatment options or hospitals, but I have no experience with that.

Explore this web site. There are dozens and dozens of stories of different kinds of treatments. Good luck to you! We will all do what we can to help.

Violarob in Texas

Dear Robyn: I hope your mom is doing well on her new chemo regimen. I also am being treated at the MD Anderson GI clinic, by Dr. Javle. (I wonder if you are being treated by Dr. Javle or Dr. Kaseb?)

Anyway, I am about the same age as your mom, and I have been at MD Anderson for about 8 months now. I am doing really, really well! Good luck to you, and keep us posted on your progress. I hope your experience at MD Anderson will be as positive as mine has been.

Violarob in Texas

Howdy everyone: I had chemoembolization (with doxorubicin) performed as first-line treatment after my diagnosis. Some people sail right through this procedure with few problems, but for me it was VERY painful. Also, I did not get much benefit from the treatment. During the chemoembolization, they did a hepatic arteriogram, which is standard practice so they can see exactly where to inject the embolizing material. While viewing the arteriogram, they could see for the first time several other lesions not diagnosed previously. These additional lesions could not be treated with chemoembolization. Long story short, they could only treat one tumor out of the 7 visualized on the arteriogram. (This episode was followed by another loooong story, which I will post elsewhere on this site. I eventually received appropriate successful treatment, and am now cancer-free for the time being).

According to info from my oncologist and my own research, chemoembolization is only effective for treating 1 or 2 tumors, and they should be less than 5 cm in diameter. In addition, only 50% of those treated will have a positive effect. Rarely are the tumors destroyed; usually, they are either stabilized or cause some shrinkage. It is considered palliative, not curative.

Violarob in Texas

When I first went to see my oncologist at MD Anderson, I asked him about Nexavar (sorafenib). He said that some patients have good response with it if they have regular HCC, but he says he has not had good luck with it on his cholangio patients. His preferred regimen for CC is daily tarceva with periodic infusions of gemcitabine and cisplatin. I do not personally know of anyone taking sorafenib for CC.

Violarob in Texas

Platelet counts are always a big bugaboo with gemcitabine-based chemotherapy regimens. Lots of different “cocktails” being taken by our pals in this discussion group; gem alone, gem+cisplatin, gem+xeloda, gem+oxiloplatin, etc. There is a wide variation of dosing schedules too. Some have infusions every week, some every 2 weeks, some every 3 weeks.

I have had trouble with platelets too. I have cirrhosis and chronic hep B infection (which is controlled with Hepsera). My “normal” platelet count is around 100k. Regular normal is 150k-350k. After infusion I fall to around 50-60k and climb back up over 3 weeks. They originally wanted me to be on a two-week schedule, but the platelets would not cooperate. However, I am doing very well on the 3-week schedule, so it is not a big deal.

Chemo regimens are trial and error. There will be lots of adjustments to dosage and timing until they determine what works best for you personally. So don’t lose heart if you don’t fit into the “standard” plan. It is disconcerting the first couple of times that they pull the rug out from under you and delay treatment. It is not “bad” or “wrong”, just part of the process of figuring out what is best for you. Good luck to you!

Violarob in Texas