One patient with glioblastoma still alive nine years later
by grillsgt47 on Sat Mar 20, 2010 04:22 AM
My wife and I are RN's. In June of 2008 she developed jaundice and at first the Dr thought it was one of her medications. Stopped the medications and actually got to feeling a little better for awhile, but things got worse again. she developed long bleeding times and had to have fresh frozen plasma. she was set up for a liver biopsy (useless in klatskin tumor, but couldn't have it due to bleeding). A different radiologist looked at her MRCP and saw that the bile ducts were dilated (swollen). Presumptive diagnosis of Klatskin tumor. Tubes were placed to drain the bile which provided some relief, but still needing heavy duty pain and anti nausea meds. We had to irrigate the drains daily and they had to be replaced several times. Went to Dallas and found that we couldn't have the re-section as metastasis was found in the abdomen. A lot of klatskin tumors, I've found out, have already spread when they're discovered. Spread means no surgery. Started chemo of IV gemcitabin and capcitebine (Xeloda) oral form of 5FU. Were hoping for "radiodynamic ablation therapy" which is the infusion of radioactive micro beads into the blood stream to the tumor site which can kill the tumor. However there has to be an adequate blood vessel directly to the tumor because if any escape, they can cause a lot of damage elsewhere. The blood vessels in our case were not adequate, so no radiodynamic therapy. (An interventional radiologist is the one who carries out this therapy). Had the external drain tubes removed and "wall stents" placed internally, this is a lot better. Also the possibility of "photodynamic therapy" which hasn't been approved in the USA by the FDA for this type of cancer, but possibly since it's a palliative treatment, it may be able to be used in the future. This is using a photosensitive chemical (Photofrin) which is infused and a couple of days later a laser is shown on the tumor region. The chemical activates and kills off tumor cells. As of now, this is all I know of how this can be treated. We are 20 months out from discovery of the primary tumor and probably she had the disease for a couple of years but the Docs didn't think to look for this sneaky little bugger inspite of previous gallbladder problems and long term elevated alkalin phosphatase. I'm not upset about that, just hope to get more info out there. We're also trying to do some lifestyle changes and recommend the book "Anti-cancer..." By Dr David Servan-Schreiber. It is a well research documented approach to living with cancer. We've had a lot of well meaning folks who've tell us they've heard about this and that, but most of that is likely quackery. Dr Servan-Shreiber's book earned our respect for it's documentation and references to actual research, plus he's not selling any products other than the book. I will look into the recommendation in response to my first post. Oh, and did I mention the power of prayer and support of our church. Emotional support and hope are very important. The statistical mean survival rates for this cancer are discouraging, but with the right treatment, lifestyle, and support, you can live well beyond the statistical mean.
She has been able to see both of her daughters graduate from college since the diagnosis and although she has a lot of pain and is on a lot of pain medication to control it, she can still do things at home (it's important to stay active) and she has a good attitude. We are doing everything we can do. We have a lot of friends and people we don't even know who are praying for us. Our church supports us and helps us out. I would continue to say don't give up. Keep fighting and keep a good attitude. Do eat healthy, get some exercise, keep your protien up (her problem has been low albumin (protein) due to sometimes poor appetite, She is now using protein supplements. I've found out it is very dangerous to let your protein levels get too low. Also if anyone is having severe itching due to the bile and liver problems, get your doctor to prescribe Rifampin. A liver specialist put her on that for "liver itch" and it completely went away. Most Doctors don't know about that we've found out, but it is supported in the literature.
We are now out over 1 1/2 years from when the big symptoms first appeared. She still has the original metal wall stents and her disease is called stable. We were not able to participate in the clinical trial as her albumin levels were consistently too low for the trial. She did have one or two treatments with cisplatin and the trial drug. After the trial, her oncologist started her on paclitaxel and carboplatin. That did drop her platelets after a couple of treatments, but she had a brief rest and restarted on the same meds at a lower dose. Carboplatin and Paclitaxel have caused some peripheral neuropathy and fatigue. Our oncologist recommended the protein powder L-Glutamine, 10grams three times a day mixed in the fluid of your choice (she likes OJ), and it helps a lot. For fatigue, the clincal trial Dr recommended ritalin, which she does take daily in small dose. A lot depends on attitude, if you get depressed, get on an antidepressant. It's ok. Oh, ursodiol helps to thin out the bile. The liver surgeon who wasn't able to do the resection, ordered the ursodiol. It's a bucket load of medications every day. We were told she probably wouldn't survive this long. With God's help and grace, we are still here and still fighting.
by grillsgt47 on Fri Apr 23, 2010 04:45 AM
On to another drug, Doxil IV every four weeks. The intervention radiologist who discovered the bile duct cancer 20 months ago was going to do a procedure a couple of weeks ago. He hadn't seen her since the original diagnosis and said "frankly I'm suprised that you're still alive, and you look good."
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