Eli
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Gavin, thank you for posting this study.
Here’s the part of the study that I found very interesting:
Quote:Similar to HCC, increased levels of IL-6 have been demonstrated in serum from CCA patients. IL-6 levels in one study were not only elevated in CCA patients compared to healthy controls, but they were elevated to a greater extent in CCA than in HCC or colorectal cancer patients (121). In addition, serum IL-6 levels correlated with tumor burden and were significantly decreased two weeks after surgical resection of CCA. Other studies have evaluated the potential for IL-6 as a diagnostic and prognostic tool in CCA. Tangkijvanich et al. showed that detectable levels of IL-6 (0.18 ng/mL) were able to distinguish between CCA and benign biliary disease with a sensitivity and specificity of 71.1% and 90%, respectively (122). The authors propose that IL-6 in combination with CA-19-9, a conventional tumor marker for CCA, may provide superior diagnostic accuracy and sensitivity. It should be noted that this study was performed using patients from Thailand where CCA is particularly prevalent, presumably due to high rates of Opisthorchis viverrini infestation. Another study performed in Korea showed that IL-6, at a cut-off value of 0.25 ng/ml, provides a sensitivity and specificity of 73% and 92%, respectively. This study also examined the effect of photodynamic therapy (PDT) on levels of IL-6. PDT is an emerging treatment for CCA in which an intravenous photosensitizer is administered followed by illumination at the appropriate wavelength. This treatment leads to an apoptotic and anti-angiogenic response (123). Interestingly, in CCA patients following PDT, IL-6 serum levels dropped approximately 7-fold, again suggesting an important relationship between IL-6 and CCA (124).My wife is starting the next round of chemo on Tuesday. She doesn’t have a measurable tumor that can be used to monitor chemo effectiveness. Our oncologist already told us that CA-19-9 isn’t a reliable test. Too many false positives/negatives. So, basically, we will be “shooting in the dark”. Endure six cycles of very toxic regimen and hope for the best.
I want to ask the oncologist to start testing CA-19-9 and IL-6. It’s possible that we won’t get any useful feedback from the tests. But, at the very least, we will establish a baseline that can be used for future surveillance.
Percy or anyone else:
How common is IL-6 blood test?
Can a regular hospital lab test it?
Is it expensive to test?Thanks!
Byron,
When I did my research on DCA, I came across a small, private clinic in Toronto, Canada. They prescribe DCA “off-label” and provide medical supervision. Blood work review, etc. One of their pages mentions that “telemedicine” is an option (the patient doesn’t have to travel to their site).
They don’t sound like shysters, but they are very clearly a “for-profit” outfit. Please keep that in mind when you review their DCA info. The quality of their evidence does not come anywhere close to what you see in a formal clinical trial.
As always, please seek professional medical advice from your own oncologist before you try any alternative treatments.
Wishing you the best,
EliDISCLAIMER:
These links are for information purposes only. I’m not affiliated with this clinic in any way. I cannot vouch for their trustworthiness. Please do your own due diligence.
DCA Therapy – Main page
http://www.medicorcancer.com/dca-therapy.htmlDCA FAQs
http://www.medicorcancer.com/dca-faqs.htmlDCA Treatment Data
http://www.medicorcancer.com/dca-data.htmlDCA Case Studies
http://www.medicorcancer.com/dca-reports.htmlByron,
I am sorry to hear your news. I went through your older posts and my understanding is, Gem/Cis is the only protocol you tried so far. I want to mention another protocol. You probably read about it on this site, but it’s worth repeating…
Ask your oncologist about GEMOX + Cetuximab protocol. It was used in a clinical trial in Austria. Small sample of patients, but very promising results. 63% response rate. 9 patients out of 30 went from unresectable to resectable. Here’s the link to their report:
Cetuximab, gemcitabine, and oxaliplatin in patients with unresectable advanced or metastatic biliary tract cancer: a phase 2 study.
http://www.ncbi.nlm.nih.gov/pubmed/21071270The same protocol is currently being tested in a French/German randomized trial. They reported their interim results. They look promising too:
A multicenter, randomized phase II trial of gemcitabine and oxaliplatin (GEMOX) alone or in combination with biweekly cetuximab in the first-line treatment of advanced biliary cancer: Interim analysis of the BINGO trial.
http://www.asco.org/ascov2/Meetings/Abstracts?&vmview=abst_detail_view&confID=65&abstractID=34761Your oncologists are supposed to know about these trials but I wouldn’t take any chances. Give them the printed pages and ask them what they think.
Best wishes,
EliDear Susie,
I am so sorry to hear about these new developments. Here’s what I’m wondering though… is it possible they scanned you too soon? I know you finished radiation around Nov 26th. When did they scan you?
FYI… my wife finished radiation on Oct 20th. We did CT scan on Dec 2nd. We tried to move up the date of her scan; our hospital refused to do it. They said they have to wait 6 weeks after radiation ends. They said that radiation causes a lot of inflammation. Inflammation “clouds” CT images and makes them harder to read. They wait 6 weeks to let inflammation settle down.
In your case, it doesn’t look like they waited 6 weeks. Something you might want to ask them about.
Wishing you the best,
EliI don’t like the sound of this…
Table 1 on Page 994 (page 6 of the PDF)
Compound: Curcumin
Group: Polyphenol
Carcinogenic: No
Genotoxic: EquivocalRemarks:
A significant increase of benign neoplastic lesions was observed for rats and mice in a long-term NTP study. However, malignant tumors were not significantly increased compared to the control groups. Moreover, there was a lack of dose-dependent effects as well as consistency across sexes and/or species. Previously, it was concluded by JECFA that curcumin was not genotoxic. However, new in vitro and in vivo studies gave positive results (e.g. DNA adducts and chromosomal aberrations). According to EFSA ‘the available in vivo genotoxicity studies were insufficient to eliminate the concerns regarding genotoxicity’. Nevertheless, there is no carcinogenicity.
Not exactly a ringing endorsement.An update on my wife.
GREAT NEWS:
December 2nd CT Scan is clean!!!!! We got “unofficial” news from our oncology nurse a week ago. We now have the official confirmation from the doctor.
Good news:
My DW started to gain weight. She now weighs 110 pounds, up 5 pounds from where she was two weeks ago. She feels that, finally, her body “woke up” after radiation & chemo. She can’t get enough food!
Unfortunate news:
We learned that my DW has post-operative hernia. She has two big bumps on both sides of her incision. They’ve been there for a couple of months. With everything else going on, we didn’t pay much attention to them. We thought that’s just the way her abdomen was supposed to look after Whipple.
DW got concerned a few days ago… she thought the bumps were getting bigger. We saw our surgeon today and he confirmed that Yep, it’s hernia. He said that priority #1 is to go get chemo done. We will see him again after chemo. He said that hernia repair surgery is definitely an option, but that he wouldn’t necessarily rush into it. For now, he suggested that my DW should start wearing a “binder” to support her abdominal muscles.
(The surgeon winked at me and said that abdominal binder makes a great Christmas present. My wife was quite upset afterwards; she thought the joke was inappropriate. I reminded her of our first appointment with the radiation oncologist. The guy sent us off with a helpful tip to get will in place. I asked DW who would she rather see: the doc who tells risky jokes, or the doc who tells to write a will. My remark cracked her up. She laughed so hard, I was afraid she could aggravate her hernia.)
Coming up:
Mon, Dec 19: we see the oncologist
Tue, Dec 20: chemo starts. 6 rounds of gem/cis is the plan.Dear Joann,
The numbers you quoted are on an annual basis. 1 out of 100,000 per year. Given the stats, a town of 26,000 is expected to have a case every 4 years, on average. Sorry if it sounds too scientific.
I know it’s so very hard to come to terms with. My wife has been sick since April. There hasn’t been a day that I didn’t think… Why Her???
I feel your pain.
Hugs,
EliDiane… you are right that UC and PSC do not cause CC. However, both UC and PSC are *confirmed* risk factors for CC. Meaning that, the incidence rate of CC among PSC/UC patients is higher than the incidence rate of CC among general population. In case of PSC, it’s *much* higher. PSC/UC cause chronic inflammation. Chronic inflammation is believed to be the breeding ground for CC.
Lainy… despite elevated risk, very few UC patients develop CC. Your doctor might be right that you have no reason to be alarmed.
DISCLAIMER: I don’t have any medical education. Take anything I say with a BIG grain of salt. Always consult your doctor, etc.Lainy… I think we all have a theory that makes perfect sense to us. In my wife’s case, we point to the salmonella infection that she contracted in high school. That’s 26-28 years ago. By her account, it was absolutely brutal. Bloody BMs, bloody vomiting, etc (sorry for the graphic details). She did recover from it, but her digestion was never back to the old normal. We’ve been together 20 years… she has had digestive issues for as long as I can remember. The symptoms remained rather mild, so we never took them seriously. Looking back, it’s quite possible that she had an undiagnosed chronic condition.
We discussed this theory with our surgeon. He was very skeptical. He said go to a pharmacy and find the digestive aids section. It’s one of the largest sections in the store. Digestion issues are very common. He said that if a link did exist, the hospital would be swamped with CC epidemic.
Re Thailand:
If I remember correctly, CC is the #1 cause of death in the 40 to 60 age group in Thailand. I think they are ramping up their research on liver flukes as the cause of CC.
Hi Percy,
I’m looking at the summary paper for the patients.
Cancer Advances: News for Patients from the 2011 ASCO Annual Meeting
A quote from page 1:
Quote:In this study, researchers looked at the tumors from 1,144 patients with advanced cancer to find specific changes to the tumor’s genes, called mutations. The tumors from 460 patients had one or more genetic mutations. Each of these patients received a targeted therapy drug that targets the specific genetic mutation found in their tumor.I’m confused. What about the other 684 patients? (1144 – 460 = 684)
Did they not have a mutation? That doesn’t seem to make sense. Are they trying to say that the rest of the patients had an unknown mutation that researchers could not identify?
Any idea?
Hi Percy,
The list of supplements is not very long at the moment. Supplements are very frustrating to research. As you know, the evidence is all over the place. Lots of studies in a dish or in mice/rats. Human studies are often of very poor quality (small sample, non-randomized, open label, etc). For most supplements, I can find a bunch of studies that directly contradict each other. Studies that are specific to CCA are few and far in between.
Anyway, here’s the list.
1. 95% curcumin with bioperine
http://www.swansonvitamins.com/SWH084/ItemDetail
2. Shiitake mushroom extract
http://www.swansonvitamins.com/SWH121/ItemDetail
3. Maitake mushroom extract
http://www.swansonvitamins.com/MSH005/ItemDetail
Once our current supply runs out, I think I will replace it with Maitake Gold 404
Sloan-Kettering selected this formula for a clinical trial. The company that markets Maitake Gold has Dr. Nanba on board. He is the Japanese doctor who did the original research on Maitake.
4. Calcium supplement with Vitamin D3. Not cancer related.
5. Vitamin D3, to top up the daily dose. We get very little sunshine this time of year. I’ve seen a few studies that linked higher cancer rates in northern countries to lack of Vitamin D. The AntiCancer book is also big on D3.
6. Vitamin B12. Again, not cancer related. We eat very little meat. B12 deficiency is common among vegetarians. The bottle says it also helps with fat digestion (I could not verify this claim).
We might add Astragalus Extract and Milk Thristle in the near future. I’m still researching them.
Best wishes,
EliDear Joann,
I am so sorry to hear about your loss. David is now at peace and without pain… I hope you can find a little bit of comfort in that.
My sincere condolences to you and your family,
EliGood morning Lainy,
You wrote:
Quote:I would venture a guess that MOST of our members do not do radical research, the brain is already on over load with the shocking news. This does not make them bad advocates or bad patients.Amen to that!
We all try to do our best, whatever we think that “best” is. We all come from different backgrounds. We all have our unique personalities. It’s only natural that we approach the same challenge from different angles. There is no right way or wrong way. Is “radical research” (as you put it) necessary? Of course not. Should every caregiver make an effort to do the research? Of course not. Should anyone think less of themselves if they don’t feel up to it? Of course not. Not for one second.
Lainy… I will be the first to tell you that, as a caregiver, I’m far from perfect. I’m lousy at certain aspects of caregiving that are more important than research. Things like being a good cheerleader for my wife, keeping her spirits up, making her laugh, distracting her from her bad thoughts, etc. I’m cerebral and introverted. The emotional side of caregiving is not my strength. I’m sure that MOST caregivers on this board are way better at that than I’m.
We all try to do our best. That’s all that counts.
Peace,
EliHi Gavin,
That was a beautiful post. Thank you for sharing your sorrow with us. Thinking of you, your mum and your dad.
Hugs,
EliMarion… that’s a funny observation. I wonder how long your typical appointment lasted?
Ours don’t last very long. 30 minutes tops. Our medical oncologist is always very rushed. We never feel welcome to explore all questions we have. I don’t put blame entirely on his shoulders. He has a large waiting room filled with patients. I blame the system that sets unrealistic patient to doctor ratio.
