1

(16 replies, posted in Chemotherapy & More)

Carl,

You mentioned the difficulty of doing genetic sequencing given the lack of biopsy sample. In researching different genetic sequencing options for my Dad, I came across a company that's doing sequencing using blood samples. The researchers came out of Stanford and are working in collaboration with several large hospitals, including UCSF. It can be worth a try. https://www.guardanthealth.com/patients.html

Best of luck to you and Lynn, I'm sending you my best wishes.

Julie

Hi everyone,

I recently came across this new company, Guardant Health, that is using a simple blood test to identify cancer mutations. Unlike other tests such Foundation Medicine's, this just requires a simple blood draw (no biopsy needed).

You can see more details on how to order the test through your doctor on their website, but I think this is a promising new test in the realm of cancer genomics. I'm planning on getting it for my Dad and I hope it'll be helpful for folks!

https://www.guardanthealth.com/index.html

Meghan,

Regards to second opinions, I think it's a good idea to pursue because this disease is quite complex and doctors have varying degrees of experience with it.

In addition to what surfer recommended above, in Los Angeles area, UCLA is another good option. My dad had his surgery with Dr. Busuttil at UCLA. He's a very good surgeon who sees lots of cases on cholangiocarcinoma. Also, within CA, you can reach out to UCSF and Stanford in NorCal.

For out of state second opinions, my dad has managed care as well, which restricts where you can go. So I looked for places that were willing to do second opinions over the phone. The surgeons that were willing to review my dad's files included Dr. Tomoaki Kato at NY Presby, Dr. Chapman at Barnes.

Best of luck.

Hi,

I am not a doctor but from talking to my dad's doctors on the issues you raised, here are some thoughts for you and questions for your doctors.

1) Pathology result of tissue is the most reliable indicator of what a tumor is (benign or malignant, and type of malignancy).  While some diagnostic radiologists can tell what a tumor is from looking at scans (CT/MRI/PET CT etc.), even they will say it usually is not with 100% certainty until confirmed by pathology work.  Having said that, since you already have multiple scans, and a MRCP coming up, you could get copies of those scans and ask for second opinoions from multiple radiologists, especially ones familiar with liver tumors, to see what they say.  You would want to know if the tumor is i) benign vs. malignant, and ii) if malignant, with how much certainty is it cholangiocarcinoma or hepatucellluar, or something else.

2) Seeding is a concern in biopsy, but multiple doctors have told me that the likelihood of it is very small.  You'd want as experienced a doctor to do it as possible so getting it done at a major hospital is worth it and likely decreases the chance of seeding happening.  The percentages quoted on the internet are averages that don't take into account the quality of care of different institutions so the numbers can be misleading.

And as a personal anecdote, my dad's tumor was ~5cm when it was diagnosed and his surgeon at UCLA (Dr. Busuttil) recommended resection right away without a pre-operative biopsy.  I don't know if that is conventional or not, but the diagnostic radiologist felt strongly the tumor wasn't benign so from the surgeon's perspective, given the size, it made sense to remove it sooner rather than later, and biopsy with pathology results afterwards, which indicated it was intrahepatic cholangiocarcinoma.

Hope this helps.

5

(30 replies, posted in Nutrition)

Carl and Toongirl,

Thanks for reviving this thread, I too would love to hear more of your experiences in nutrition.  We have been doing more research on this topic since my Dad was diagnosed with the disease, and it would be great to share the info.  I will post more later (holiday cooking a priority right now!) on our experience, but I'm really looking forward to sharing experiences and learning from you.

Merry Christmas!

Julie

Gavin, I concur with Willow's comment - thank you SO much for all the research you do to keep us updated.  I learn a lot from the links you post, so thank you for all the time and work you put into it. 

Have a fabulous holidays!

7

(16 replies, posted in General Discussion)

Hi Porter,

I am by no means an expert on scans so speaking from experience of being my Dad's advocate. 

From my understanding, scans are generally 2-dimensional whereas tumors are 3-dimensional, so depending on which angle the radiologist is looking from, the measurement of the tumor(s) can differ even if the tumor's size did not necessarily change. 

Also, different radiologists looking at the same scan could also spot differences, one radiologist told me that sometimes, looking at scans is not just a science, but also a bit of an art (in which case experience does matter).

I would absolutely recommend you talk to the doctor about your question on the scans, but more likely than not, the radiologist would be able to give you a more clear answer than the oncologist.  Hope this helps.

Julie

Thanks Percy, your advice is always appreciated, I was secretly hoping you'd respond to the post!

Just to tap your knowledge a bit further - can you share your understanding of the effectiveness of RFA if the disease has spread? 

The oncologist my Dad has been seeing at UCLA says there is no role for RFA when the disease has spread beyond the liver. 

Thank you!

Hi forum,

I haven't posted here for a while, but I'd like to ask for your advice.

A short recap - my Dad (63 yo) was diagnosed with intrahepatic cholangiocarcinoma in early 2012.  He had resection on the one tumor in the liver, and did not do chemo afterwards.  The first recurrence (2 tumors, each ~1cm) was found in January 2013 and after biopsy confirmed recurrence, he underwent RFA treatment for the two tumors.  The procedure was successful, and he did not do chemo afterwards. 

Couple of weeks ago, he went in for his scans and the MRI found again two small tumors (~1cm each) on the liver, and a suspicious nodule on the lung.  The radiologists believe the liver tumors are recurrent, but that the lung is not related.  We are waiting to do a biopsy on the lung to identify what it is.

The situation right now is that we have the chance to do the RFA on the liver this week, without knowing what the lung nodule is (that biopsy is scheduled for weeks later). 

My question is - assuming the lung nodule is related to the liver (though we hope not), does it make sense to do RFA on the liver + follow up with chemo OR should we just wait to do systemic chemo?  I'd love to hear your experience and thoughts on this. 

Thanks very much.
Julie

Thanks Gavin and Jason.

This link worked for me! 

http://www.cancerresearchuk.org/cancer-info/news/archive/pressrelease/2013-11-17-body's-defence-system-warns-against-returning-cancer?rss=true

Percy and Marion,

Thanks to you both for the replies.  I will await for your update Marion.

Julie

Hi folks,

I wanted to follow up on this thread and see if any others have done genetic testing by FoundationOne? 

Would love to hear of your experience with it.

Thanks,
Julie

13

(22 replies, posted in General Discussion)

Pattimelt - my Dad's surgeon at UCLA was Dr. Busuttil and his oncologist is Dr. Finn.  Both are experienced with cc.

If I may suggest, having dealt with insurance on getting approvals to see doctors etc, please do go see Dr. Chandler.  If he's not the right person because of his area of focus or expertise, ask him to refer you to the right surgeons and oncologists at the Pfleger Liver Institute at UCLA which is where the liver specialists reside.  His referral could get you to the right place within UCLA faster than trying to argue with insurance.

Best of luck.

Surfer,

My Dad was diagnosed with intrahepatic cholangiocarcinoma after his resection at UCLA.  The scans couldn't discern what type of tumor it was before the surgery, but the surgeon at UCLA decided it was best to remove the tumor regardless given the size of ~6cm.  Since your insurance has contracted with UCLA, it could be another place for you to get a second opinion.  The Pfleger Liver institute is the place you will want to contact.  The surgeon my Dad had was Dr. Busuttil, and his oncologist right now is Dr. Finn.  They are experienced with CC patients, but UCLA does tend to be more conservative and I do agree with Mark that USC's Dr. Selby is the person you'd want to talk to, especially if others say no.

Best of luck.

Julie

Bob and Nancy,

I'm truly sorry for your loss.  I've followed Jeff's journey since joining this forum, and have always been inspired by his bravery and spirit.  From your posts, it's not hard to see you've also been incredible parents. 

Many hugs.

Julie

16

(26 replies, posted in General Discussion)

Lisa,

I am so happy to hear that the CT scan was clear, hoping that the CA 199 will go down from here.

Keeping you in my thoughts.  Big hugs!

Julie

Hi,

I just wanted to add a point about stress though not directly related to cellular memory.  I'm reading a very good book called "Why Zebras don't get Ulcers" by Dr. Sapolsky at Stanford which is a fun and informative read on what stress is, how it impacts our bodies and our well being.  It's well researched and scientific, not pseudo science.  And what I've gathered so far is that stress not necessarily a direct reason for diseases, but if a person is in an extended state of stress, the impact on us physically and mentally can be very debilitating, to the point where it alters the way our body defends itself and significantly affect how effective our immune system performs etc. 

Another way to think about it is - during a football game, the performance related stress can turn the body into a heightened state that leads to an athlete's optimal results, but if your body is in that state for an extended period of time (say, as a result something very emotionally absorbing like a difficult divorce or terrible boss that hovers over you all day long) then those stressors eventually tire your body out and make it more susceptible.  And when our bodies are susceptible, diseases are more likely to manifest.

I hope this helps, one layman to another.

Julie

Sending you lots of good wishes Lisa!

Great news!!!

Mark,

This is such positive and encouraging news, I hope you continue to feel better!  You are in my thoughts.

Best,
Julie

Hi folks,

I'm wondering if anyone on the board has gotten a liver fluke test done after diagnosis of cc? 

I know that cc is a bigger problem than liver flukes but in terms i) understanding the root of the problem - if it's liver flukes induced, and ii) if there are still liver flukes lurking in the liver, I'm thinking of proposing this to my Dad's doctors for a test, but wanted to see if anyone has done this before?  Would love to hear thoughts/experiences/opinions!

My Dad's situation is that he had recurrence ~1 year after surgery and then had RFA this April to remove the two recurrent tumors.  He's recovering from the RFA procedures, and getting stronger.  He continues to eat, exercise, and sleep well, but on his latest blood test, there was a spike in a blood marker that indicates the elevated level is related to possible parasites.  Hence my question to the group on liver fluke tests.

Thanks!!
Julie

Lisa, that is such wonderful news, so happy for you!!!

On the hives, was there any progress on the autoimmune diagnosis?  I mentioned to you my Dad's situation where he was having a lot of skin reaction too after the RFA.  We saw a good dermatologist recently and he thinks its likely an autoimmune reaction.  I was also having conversations with a liver specialist here in CA, and he also thought an autoimmune response is not unusual given the tight connection between the functions of the liver and skin.  Hope you find the root of the hives and a comfortable remedy soon!

Julie

23

(15 replies, posted in General Discussion)

Pat,

I don't know the answer to your question, but great to hear the liver looks clear!  Hope you get a good answer from the oncologist.

Julie

Hi folks,

I read this article on whether to take/not take vitamins and wanted to share it with the community.

Julie


--------------------------------------------------------------------------------

June 8, 2013


Don’t Take Your Vitamins

By PAUL A. OFFIT


PHILADELPHIA — LAST month, Katy Perry shared her secret to good health with her 37 million followers on Twitter. “I’m all about that supplement & vitamin LYFE!” the pop star wrote, posting a snapshot of herself holding up three large bags of pills. There is one disturbing fact about vitamins, however, that Katy didn’t mention.

Derived from “vita,” meaning life in Latin, vitamins are necessary to convert food into energy. When people don’t get enough vitamins, they suffer diseases like scurvy and rickets. The question isn’t whether people need vitamins. They do. The questions are how much do they need, and do they get enough in foods?

Nutrition experts argue that people need only the recommended daily allowance — the amount of vitamins found in a routine diet. Vitamin manufacturers argue that a regular diet doesn’t contain enough vitamins, and that more is better. Most people assume that, at the very least, excess vitamins can’t do any harm. It turns out, however, that scientists have known for years that large quantities of supplemental vitamins can be quite harmful indeed.

In a study published in The New England Journal of Medicine in 1994, 29,000 Finnish men, all smokers, had been given daily vitamin E, beta carotene, both or a placebo. The study found that those who had taken beta carotene for five to eight years were more likely to die from lung cancer or heart disease.

Two years later the same journal published another study on vitamin supplements. In it, 18,000 people who were at an increased risk of lung cancer because of asbestos exposure or smoking received a combination of vitamin A and beta carotene, or a placebo. Investigators stopped the study when they found that the risk of death from lung cancer for those who took the vitamins was 46 percent higher.

Then, in 2004, a review of 14 randomized trials for the Cochrane Database found that the supplemental vitamins A, C, E and beta carotene, and a mineral, selenium, taken to prevent intestinal cancers, actually increased mortality.

Another review, published in 2005 in the Annals of Internal Medicine, found that in 19 trials of nearly 136,000 people, supplemental vitamin E increased mortality. Also that year, a study of people with vascular disease or diabetes found that vitamin E increased the risk of heart failure. And in 2011, a study published in the Journal of the American Medical Association tied vitamin E supplements to an increased risk of prostate cancer.

Finally, last year, a Cochrane review found that “beta carotene and vitamin E seem to increase mortality, and so may higher doses of vitamin A.”

What explains this connection between supplemental vitamins and increased rates of cancer and mortality? The key word is antioxidants.

Antioxidation vs. oxidation has been billed as a contest between good and evil. It takes place in cellular organelles called mitochondria, where the body converts food to energy — a process that requires oxygen (oxidation). One consequence of oxidation is the generation of atomic scavengers called free radicals (evil). Free radicals can damage DNA, cell membranes and the lining of arteries; not surprisingly, they’ve been linked to aging, cancer and heart disease.

To neutralize free radicals, the body makes antioxidants (good). Antioxidants can also be found in fruits and vegetables, specifically in selenium, beta carotene and vitamins A, C and E. Some studies have shown that people who eat more fruits and vegetables have a lower incidence of cancer and heart disease and live longer. The logic is obvious. If fruits and vegetables contain antioxidants, and people who eat fruits and vegetables are healthier, then people who take supplemental antioxidants should also be healthier. It hasn’t worked out that way.

The likely explanation is that free radicals aren’t as evil as advertised. (In fact, people need them to kill bacteria and eliminate new cancer cells.) And when people take large doses of antioxidants in the form of supplemental vitamins, the balance between free radical production and destruction might tip too much in one direction, causing an unnatural state where the immune system is less able to kill harmful invaders. Researchers call this the antioxidant paradox.

Because studies of large doses of supplemental antioxidants haven’t clearly supported their use, respected organizations responsible for the public’s health do not recommend them for otherwise healthy people.

So why don’t we know about this? Why haven’t Food and Drug Administration officials made sure we are aware of the dangers? The answer is, they can’t.

In December 1972, concerned that people were consuming larger and larger quantities of vitamins, the F.D.A. announced a plan to regulate vitamin supplements containing more than 150 percent of the recommended daily allowance. Vitamin makers would now have to prove that these “megavitamins” were safe before selling them. Not surprisingly, the vitamin industry saw this as a threat, and set out to destroy the bill. In the end, it did far more than that.

Industry executives recruited William Proxmire, a Democratic senator from Wisconsin, to introduce a bill preventing the F.D.A. from regulating megavitamins. On Aug. 14, 1974, the hearing began.

Speaking in support of F.D.A. regulation was Marsha Cohen, a lawyer with the Consumers Union. Setting eight cantaloupes in front of her, she said, “You would need to eat eight cantaloupes — a good source of vitamin C — to take in barely 1,000 milligrams of vitamin C. But just these two little pills, easy to swallow, contain the same amount.” She warned that if the legislation passed, “one tablet would contain as much vitamin C as all of these cantaloupes, or even twice, thrice or 20 times that amount. And there would be no protective satiety level.” Ms. Cohen was pointing out the industry’s Achilles’ heel: ingesting large quantities of vitamins is unnatural, the opposite of what manufacturers were promoting.

A little more than a month later, Mr. Proxmire’s bill passed by a vote of 81 to 10. In 1976, it became law. Decades later, Peter Barton Hutt, chief counsel to the F.D.A., wrote that “it was the most humiliating defeat” in the agency’s history.

As a result, consumers don’t know that taking megavitamins could increase their risk of cancer and heart disease and shorten their lives; they don’t know that they have been suffering too much of a good thing for too long.


Paul A. Offit is the chief of the infectious diseases division of the Children’s Hospital of Philadelphia and the author of the forthcoming book “Do You Believe in Magic?: The Sense and Nonsense of Alternative Medicine.”

25

(167 replies, posted in General Discussion)

Pam,

I can't tell you how saddened I am by this news.  You have an amazing family, and I am sending all of you my best thoughts for this difficult and trying time. 

May Lauren rest in peace in heaven, and know that there are many of us who have never met you but have been touched deeply by your courageous fight, and are sending you our love.

Julie