mlayton

Hi Billy,
My wife Lisa had a successful resection surgery for ICC in January of 2014. Prior to her surgery, she had a biopsy of an enlarged retroperitoneal lymph node that was confirmed to be metastatic. She had several lymph nodes in this area removed during surgery and only two of them were positive for metastatic disease. Lisa had adjuvant chemo-radiation due to a positive hepatic vein margin as well as the positive distant nodes. Lisa is currently battling metastatic spread to her lungs, but overall is doing well more than three years after her big surgery.

I have not heard of the combination of liver resection surgery and the HIPEC procedure at the same time. However, I am very intrigued by this combination and impressed that your surgeon is willing to take such an aggressive approach. The decision to have surgery now vs. two months is a difficult one and I am sorry that I cannot provide any guidance as each situation is unique.

We will keep Kathy in our thoughts and prayers and will be hoping for the best possible outcome.

-Matt

Jennifer,
Lisa was treated at Oregon Health and Science University (OHSU). We live in Portland, OR, so it was very convenient to have the surgery so close to home. My wife’s surgeon was Dr. Kevin Billingsley, and we cannot say enough great things about him. We traveled the country seeking out multiple second opinions, including Mayo Clinic, Sloan Kettering (Dr. Yuman Fong), MD Anderson, USC, and Loma Linda University. No one was willing to perform surgery initially, and only a few of the more aggressive surgeons were willing to take on Lisa’s case after she had a good response to chemotherapy.

After the initial rounds of chemotherapy, Lisa’s largest tumor shrank from 15 cm to about 11 cm. She had 6 tumors in all and the surgeon was able to remove all of them (right trisegmentectomy); however, he was not able to get clean margins in one area near the hepatic vein. Lisa had adjuvant chemo-radiation to this area post surgery.

I hope this information helps. Please let me know if you would like to speak with me or Lisa about her experiences. We are happy to talk via telephone or through e-mail if you would like more details.

Kind Regards,

-Matt

Steven,
I am so sorry to hear about your mother’s recurrence and the challenges that she is facing. My wife Lisa is in a similar situation. Lisa was diagnosed with ICC in May of 2013. At the time of diagnosis, she was inoperable due to multiple large tumors in both lobes of her liver and positive distant lymph nodes. Fortunately, she was able to have a life-saving resection surgery after six months of chemotherapy treatments, including 8 rounds of folfirinox (folfox plus irinotecan).

This past February, we learned that Lisa had a recurrence in the form of multiple small nodules in both of her lungs. Like you, we pursued the TIL trail at the NIH, but after an extensive review of Lisa’s medical records and scans, we were told that the lung nodules are currently too small for her to qualify (the nodules range between 2 and 9 mm).

Lisa underwent a thoracotomy surgery at MD Anderson in June. The surgeon was able to remove 4 of the 12 nodules and confirmed that the lung lesions were metastatic cholangiocarcinoma. Unfortunately the genetic testing did not reveal any mutations that qualify for clinical trials. Lisa is currently being treated with a combination of xeloda and gemcitabine. Although folfirinox was very effective in treating her initial liver tumors, Lisa is not able to have this type of chemotherapy any longer due to persistent neuropathy that she still experiences as a side effect. Folfox and folfirinox are tough treatments with some unpleasant side effects. However, in Lisa’s case, this regimen was very effective in shrinking the tumors. I truly hope that your mother is able to have similar results and that the side effects are not too difficult to endure.

We are very hopeful that Lisa’s current chemotherapy regimen will be effective in shrinking or even eliminating her lung nodules. In the event that this treatment is not successful, our next step will likely be to try keytruda. Keytruda has demonstrated great promise for melanoma, and some early studies and anecdotal cases have shown some success for solid tumors as well (although clinical trials are ongoing). Because there are not currently any openings for Keytruda clinical trials for biliary tract cancers, we will likely explore using this drug on an off-label basis. Lisa’s medical team believes that Keytruda could hold promise because her tumor expresses the PL-D1 antibody. If your mother has not had this testing, I would definitely recommend that you pursue it to see if she would be eligible for similar immunotherapy treatments.

You seem to have a very good handle on your mother’s treatment, so I am not sure that I have much additional information to offer aside from the recommendations above. Your mother is very lucky to have you in her corner. We will keep her in our thoughts and prayers.

-Matt

Marion,
I have a few questions that I would like to have covered regarding the surgical management of cholangiocarcinoma. One of the biggest questions and areas of controversy seems to relate to the eligibility for surgical resection. Some patients are eligible for curative resection immediately upon diagnosis, some patients become eligible after successful chemotherapy or radiation treatment, and unfortunately, many patients are not eligible for surgery at all. The criteria for surgery are far from clear cut. Some surgeons and institutions are more aggressive than others, and many patients who seek out multiple opinions get vastly different responses. In my wife Lisa’s case, we sought out six different opinions. Three of the top experts (including the Mayo Clinic) said no to surgery and three said maybe, meaning that surgery could be possible with a robust response to chemotherapy.

In the case of ICC, the primary requirement for surgery is to have at least 20% remaining healthy liver, with no involvement of major vessels (portal vein, hepatic artery, etc.). But from there the eligibility becomes very cloudy. Some surgeons will disqualify a patient with tumors in both lobes, or tumors of some seemingly arbitrary size. Some surgeons will disqualify patients with any extrahepatic spread. However, other surgeons will still perform surgery as long as the spread is limited to certain lymph nodes or other organs that can also be treated surgically or through other means.

I guess my main question would be: is it possible to come up with more easily understandable guidelines for surgical eligibility? I would also like to hear more about the concept of “tumor biology” and the role it plays into whether or not a patient is a candidate for a curative resection.

Thanks again for seeking our input. I look forward to listening in on Thursday.

Dan,
My wife Lisa continues to deal with significant neuropathy as a result of several rounds of chemotherapy last year. She has tried pretty much every treatment available and has been able to mitigate the symptoms somewhat through a combination of medications, physical therapy, and naturopathic remedies. While her symptoms do not appear to be as severe as those experienced by your wife, Lisa continues to have significant numbness and lack of feeling in her feet. This constant numbness definitely impacts her gait and balance, and she is still not able to drive a car or walk for long periods of time without frequent rest breaks.

The only drug that has worked for my wife is Lyrica. She tried gabapentin and cymbalta to no avail. The Lyrica does not cure the neuropathy by any means, but the symptoms seem to be much more manageable when she takes the maximum dose of 600 mg every day. She was also prescribed a drug called Metanex, which is also taken daily. We are not sure what impact, if any, the Metanex has on her neuropathy, but there are a number of anecdotal reports of patient improvements with this drug.

In addition to the Lyrica, Lisa has weekly physical therapy appointments with a physical therapist who specializes in chemotherapy induced peripheral neuropathy (CIPN). She performs daily exercises recommended by the PT and has learned a number of coping strategies that have helped her quite a bit. Lisa’s physical therapist also recommended electro stimulation therapy (TENS device) which she uses every day in an attempt to help the nerves regenerate more quickly. Again, we are not sure if this treatment is effective since there is little empirical data to support its efficacy, but Lisa is incredibly motivated and is willing to try anything to beat this neuropahty so she can get back to her normal life.

Lastly, Lisa has weekly accupuncture and massage treatments specifically focused on her feet and hands. These treatments seem to help, but quite frankly, she is doing so many things to treat the neuropathy, we are not sure what is working and what is not working. But at least we know that she is doing everything possible to manage her symptoms.

The oncologist and surgeon have told us many times that none of the above treatments will cure the neuropathy. The nerve endings take time to regenerate and apparently nothing can speed up that process. Our goal is to manage the symptoms until her body can heal itself.

Please feel free reach out to me privately if you would like to talk or if we can provide additional information. I can definitely relate to the pain and frustrations caused by severe neuropathy and hope that your wife finds relief very soon.

-Matt

Porter,
I would echo Marion’s suggestion to contact your oncologist. As you know, my wife Lisa underwent 8 rounds of folfirinox prior to her resection surgery (preceded by 6 rounds of gem-cis). The folfirinox caused neuropathy from the first round and progressively got worse with each infusion. She definitely experienced the neuropathy during the treatments, although we do know for sure if the culprit was oxilaplatin or irinotecan. Towards the end of her treatments, the neuropathy was so bad that she needed a wheelchair to get to our car, but fortunately that was only on treatment days and the symptoms gradually improved until her next dose. I also remember that she experienced temporary jaw tightness and mouth sensitivity almost immediately after the oxilaplatin infusions were started.

Lisa still continues to deal with neuropathy and is so unsteady on her feet that she is unable to drive and needs to use a cane (grudgingly) while out in public. In hindsight, her medical team believes that they may have pushed too hard and that stopping the treatments earlier or lowering the dose could have prevented the neuropathy that she is dealing with currently. Although, on the other hand, if she did not complete the 8 rounds of folfirinox, she may not have been able to have a resection so it was definitely a tradeoff for her. We are confident that Lisa’s neuropathy will improve but we have been told that it could take several months or even longer.

Based on Lisa’s experience, I would definitely stay in close communication with your oncologist so they can monitor the situation and hopefully prevent any long-term effects related to your adjuvant chemotherapy regimen.

Porter, sorry to hear about the response you recieved from Mayo Phoenix. It is totally unacceptable for them to not provide more details. You deserve an explanation. I have no idea why they did not believe that you would benefit from a consultation; however, it in no way means that you are a “lost cause” as you put it. My guess is that the experts reviewed your images and reports and agreed with the current treatment plan — meaning that they have nothing additional to offer at this time.

I like your attitude of fighting on despite this setback. I am sure you will succeed in getting a second opinion. Perhaps you could seek out a visit to another cancer center on your week off from chemotherapy in between cycles.

Again, please let me know if I an help in any way.

Kind Regards,

Matt