The ZumZum Room

Hello Everyone,

In the last update I reported that we had postponed the radio-embolization until April 17^th.  It turned out that there was a miscommunication with our oncologist concerning the second attempt with chemo (FOLFOX) and doing the radiation treatment, injecting spheres of Yttrium-90 directly into Amy’s liver.  By the way, this procedure is known as SIRT, or Selective Internal Radiation Therapy.  While SIRT has been shown to be effective for primary liver cancer (hepatocellular carcinoma) and is even FDA approved for colon cancer, it is not considered effective and experimental by my health insurance for bile duct cancer.  While Amy definitely has cancer in the liver, it isn’t primary, or didn’t originate on the liver.

Since both the initial request for coverage and the first level appeal were both denied, the oncologist decided to start Amy on the FOLFOX treatment while continuing to represent us in the appeal process.  He also wanted Amy to complete four full treatments, do a CT scan and determine if the chemo was effective and reducing the size of the tumor in her liver.  The focus continues to be on her liver as the tumors in her abdomen do not appear to be growing as rapidly.  So, in lieu of seeing Amy through at least four chemo treatments, the oncologist, Thomas Kenney, wanted to wait until even later before ordering the SIRT again.  The fourth treatment would not be until April 25^th and the CT scan would be another 7 – 10 days later, and then it would be decided if the embolization were needed.

I didn’t know this was the plan, but knowing that only radiation had been effective so far, I had the SIRT procedure rescheduled for the 17^th.  When I found out last week what was Kenney’s plan, the SIRT procedure scheduled for the 17^th was once again postponed, but with no new date as of yet.

I also found out that my health insurance denied the second level appeal involving the Sirtex Medical company.  Sirtex makes the radioactive beads and was called in to present the merits and details of the procedure.  Furthermore, my health insurance company said no more appeals would be considered.  I read the denial letters and found that while an “Independent Radiology Oncologist” reviewed Amy’s case, it was a family physician, in the first appeal, and a pediatrician in the second, who made the final review decisions in terms of relating the oncologist’s opinion with the health insurance policy.  Interesting.  I have requested and received the documentation from my health insurance company that was used to determine the denials.  This may be used should legal proceeding become the only recourse.

I was contacted by Sirtex and told that the appeal process was not necessarily over.  There was something known as an individual reconsideration that can be requested through my Human Resources.  I am pursuing this angle right now, but getting confusing messages and am not sure if I’m making any progress.  I was told by Sirtex that my health insurance has actually covered the SIRT procedure before and for a patient diagnosed with cholangiocarcinoma.  So, there’s a precedent that the health insurance company either knows or doesn’t know about.

In the meantime, and I hope to don’t make things confusing here, Amy had her third FOLFOX treatment this past Wednesday.  She had been having more pain on her right side and Dr. Kenney agreed that was indicative of the tumor growing and the chemo not being effective. He told us that if the pain continues to increase then let him know this coming Monday morning.  This morning, I took Amy to the ER.  She was awake all night with excruciating pain on her side.  The oxycodone was no longer working it seemed.  She has been admitted to the hospital while they’re trying to get her pain under control.  Her mom is staying with her while I take care of our daughter.  They may do a CT scan tomorrow or Monday but the pain is the priority now.

What will likely happen next is that she will have the CT scan in the next couple of days, it will show that her tumor has continued to grow, even with the FOLFOX treatment.  The embolization will be rescheduled (perhaps the 17^th is still open) and we’ll proceed with the internal irradiation of her liver, which she really needs now.  We will have this procedure even if the insurance company never gives in.  Amy and I saved money in case one of us ever lost our job and we have support from her parents as well.

Tomorrow I hope to meet with a lawyer from our church to discuss this case with him.  Based on preliminary discussions we may have a good case against the insurance company to either get them to pay for the procedure, if there’s time, or get them to reimburse us later.  Our case could be based on the fact that the insurance company used a family care physician and a pediatrician in the appeal review process as well as establishing a precedence for coverage.  Perhaps it could be enough for the lawyer to write them a letter, threatening a lawsuit.  We’ll see.

I guess that’s it for now.  I appreciate your prayers and well-wishes for Amy to get through this stage of pain, get the embolization procedure rescheduled ASAP, and hopefully get our insurance company to come around.

Michael

Hello Everyone,

I will keep this pretty short as there isn’t a whole lot to tell you.  Amy’s date for the radio-embolization has been postponed until April 17^th with the delay being caused by my health insurance denying coverage.  Since coverage has still not been approved, the new date is tentative.  The appeal process has at least two stages, and we have still been denied after the first stage.  This stage has involved both a peer-to-peer review between the oncologist, Thomas Kenney, and the surgeon performing the operation, Domenic Yee, and the insurance-appointed physician.  After that didn’t work, the company involved in making the radioactive spheres and the procedure itself, got involved, but to no avail.  Now onto the second stage in the appeal process in which a lot more information will be provided by the hospital and the oncology group.  One of my contacts there called me yesterday morning to give me the new date and let me know that my health insurance has always been the most stubborn in approving these kinds of procedures, but they do eventually give in.

If the next level of the appeal process fails then my human resources department will be asked to step in.  After that, we have a good lawyer at church, with a lot of experience dealing with insurance companies and has involved the Federal Government’s insurance commission, or regulating body over insurance companies.  If that all fails, Amy and I have saved a bit of money in the event either of us might lose our jobs and we’ll just tap into that.  No matter what, this potentially life-saving procedure will take place.  It’s really just a matter of when.

So, in the meantime, Amy continues her bi-weekly chemo treatment of FOLFOX.  As she will have at least 3 treatments before the embolization, we will hopefully be able to find out if it has been effective or not over that timeframe.  That is, she will have a CT scan, most likely just before the embolization to see if the chemo has worked at all.

Thank you again for all your support and I expect to have more news for you soon.  

Michael

Hi Amy. Just a quick note to let you know I was thinking of you. In Michael’s last post, he mentioned a liver transplant specialist. Let me know if this is an option you’re pursuing. I’m with UCSF’s Immune Tolerance Network now, in their transplant therapeutic area. I running the clinical operations for a couple liver-transplant studies and am happy to share information and answer questions. You and your family continue to be in my prayers. Best regards. -Carol

P.S. I love the picture of you and Finley! She’s such a cutie.

Hello Folks,

Sorry it’s been a long time since the last update, and you may recall from #10 that the doctors were trying to decide among three options. My father-in-law did quite a bit of research on the radio-embolization and felt that would be the most promising treatment at this time, especially given the critical nature of the situation with Amy’s liver.  While the abdominal tumors didn’t seem to be doing much (shrinkage or growth), the tumor in her liver was definitely spreading and her oncologist, Thomas Kenney, felt the radio-embolization would need to be done now and consider more chemo later.

I sent an email to Dr. Lieu at UC Denver about our concern with the aggressive nature of the tumor in the liver and that we should do radio-embolization now.  He immediately responded in agreement and the next thing I knew we were being scheduled for an angiogram at Porter Adventist to explore blood flow in and out of the liver as well as shut off some of the blood vessels that were feeding the tumors.  Since tumors can create new blood vessels, the angiogram was also used to determine if such were present and would need to be closed as well.  That procedure was carried out on Thursday, Feb 23^rd, and everything went very well.  They now have Amy’s liver well mapped, have shut down a few unnecessary blood vessels, and have figured out where the radioactive spheres need to be deposited when the radio-embolization is scheduled.

That’s what we’re currently waiting to find out about.  We were told that it would be about two weeks which places it sometime next week, hopefully.  This cancer is aggressive.  Chemo hasn’t worked; only radiation so far.  We need to get moving as soon as possible. 

I also spoke with Dr. Heffron, the liver transplant specialist, who told me he was watching this situation very closely and would be helping to decide when would be a good time to resect.  Why we haven’t been able to cut out the infected part of the liver yet is because that part of the liver is pretty critical to its ability to function.  Amy’s front right lobe, and now the front left as well, have critical blood vessels that can’t be removed with the tumor.  So, as Heffron says, with the radio-embolization, if we can destroy and shrink enough of the tumor to cut it out, that will greatly increase her chances of survival.

I found a link on radio-embolization as it pertains to the liver that you might find interesting.     

http://www.radiologytoday.net/archive/rt051809p29.shtml

Eventual surgical resection is really the only way to beat the tumor in the liver.  There’s also some discussion about the colon-cancer treatment that Amy may eventually be on (FOLFOX), whether or not the radio-embolization is successful.  We know the early radiation was successful in reducing the tumor by some 35 – 40% and that was done by passing the radiation through her body using external means.  With the radio-embolization I expect the results to be even more successful because the radioactivity will be introduced directly into her liver.

I then expect her to have surgery to remove the infected part of her liver and then the next chemo treatment to go after those tumors in her abdominal cavity. I suppose that if the radio-embolization is not successful, they will start in the chemo treatment anyway, but we’re pretty sure that will not help with the liver.

The main side effect of the radio-embolization is fatigue and she will probably have flu-like symptoms a couple of days after the procedure.  It will take about two weeks before we know if the treatment has been successful.  I will let you know when she has the procedure.  In the meantime, please keep the positive thoughts and prayers going.

[followup email below]:

I am sorry to have forgotten couple of things in my previous email [the above]

First of all, I need to tell you that although Amy’s is pretty tired and tires easily, she is doing well.  An occasional pain from time to time, but it seems controllable through the oxycontin (slow-release oxycodone) and regular oxycodone for breakthrough pain relief.  She has had very little nausea overall although she did have a significant flare-up just before the angiogram.  I also took her into the hospital ER a couple of days after the angiogram as she was having a bad side effect of what turned out to be too much Compazine, an anti-nausea medication that she should have been taking as-needed, rather than according to a schedule.  The side-effect she suffered was Dystonia, or restlessness, which kept her up the whole night.  The ER doctor had her go off all of her anti-nausea meds and only take as needed.  Right now, the only anti-nausea she takes regularly is Ativan, or the benzodiazepine known as Lorazepam.  This tends to make her sleepy, but it helps keep her from having anxiety .   

The second thing I forgot to mention was a blog her brother, Alex, started just recently and I have attached his email for reference.  Please feel free to access the blog and see his comments form more information.  As her email address is no longer working, you can send her a message directly at amy.m.zumwalt@gmail.com

Michael

Hey Folks,

After four chemo-only treatments, Amy had her CT scan yesterday and we got the results today.  Not good news.  Although one of the tumors in her abdominal cavity appears to have shrunk, the other two have not changed.  However, more importantly, the cancer in her liver has actually spread significantly and she is in danger of eventual liver failure.  Her liver is working very well right now, but as her oncologist, Thomas Kenney, told us today, because of the danger he is considering an embolism that will target the liver specifically.  Either a chemo or radiation embolism, we don’t know.  There is a very good liver radiologist at the hospital, a Dr. Yi, who will be brought in to advise.  He is also the one who would perform the embolism if that should be the direction we go.

Dr. Liu, of UC Denver, has advised that Amy be treated with the standard chemo drug mix used for treating colon cancer, or FOLFOX, which is a cocktail of the following three drugs:

5-Fluorouracil (she was on a low dose of this during her radiation treatment)

Leucovorin

Oxaliplatin

Because Amy is stage 4 and the tumors are in both her liver and abdominal cavity, Dr Liu feels it is better to stick with a chemo treatment and see if all the tumors will respond.  A concern that Dr. Kenney has is that our insurance may deny coverage because Oxaliplatin is very expensive.  But Kenney is also concerned about the liver specifically.

So, there’s the possibility of another drug therapy, there’s the chemo, or radiation embolism, and then a third possibility is a clinical trial.

A current trial at UC Denver combines the FLOFOX cocktail with the PI3 kinase inhibitor, however they are not accepting any more patients at this time.  This one is apparently targeted at patients diagnosed with cholangiocarcinoma, like Amy.  There are two other clinical trials in progress that are investigating the combination of the chemo drug Irinotecan with experimental drugs.  Both trial are for patients with advanced forms of cancer.

Well, I don’t see this a setback, but another opportunity to see what it will take to rid Amy’s body of this uninvited guest.  So much has happened over the past four-and a-half months that it seems like we have been going through this a lot longer.  However, it can take a long time to fight cancer and win, so we have to keep that in mind, be patient, and certainly keep plugging away.

You have all been so supportive that I was looking forward to giving you good  news in this update.  Still, you’re continued support is very much appreciated as we go on to the next step in beating this thing.  I will let you know once a course of action is decided upon.

Thank you.    

Michael

Hello Everyone,

We trust you had a great holiday season with family and are refreshed.  Several of you have been asking for an update, and I now realize it has been over a month since I sent out Part 8.  My apologies for getting behind, but as Agilent as MLK Day off, I can take some time to put thoughts to paper.  I did want to wait until we saw Christopher Lieu at UC Denver, which wasn’t until last week.  We were referred to him by Amy’s oncologist, Thomas Kenney, and we were going to see him around Christmas, but decided to postpone as we didn’t want anything to ruin our holidays.

As it turned out, our visit with Dr. Lieu went really well.  He even spent time with just Amy’s father and myself, answering our questions after Amy and her mother excused themselves.  Amy has trouble sitting up for extended periods of time and really didn’t want to hear details like what we would do if the chemo wasn’t working, etc.  So, back to Lieu in a little bit.

What’s been happening since Part 8?  After the chemo/radiation ended, shortly before Thanksgiving, Amy got a whole month off before starting the chemo-only regimen.  I told you about her continued nausea and even having to go back into the hospital a second time for excruciating pain on her right side.  The only good news about that return visit was that she had a CT scan in the ER and that was used for a baseline before beginning her chemo-only treatment.  That is, Dr. Kenney wanted to get a size estimate on the tumors in her liver and abdomen before starting the chemo, and didn’t have to schedule another CT Scan for her since she had already had one.  

Her first chemo-only treatment was Thursday, Dec 29^th.  It took four hours to administer the Gemzar and Cisplatin.   She was hydrated during the Cisplatin and also given Emend, a powerful anti-nausea medication.  We were told that days 3, 4 and 5 would be the worst, which turned out to be very accurate.  That Saturday through Monday were awful.  Nothing we gave her, in terms of pain or nausea medication, helped.  Much of her new pain was in the area of her lower abdomen, which I took as a sign that those tumors in her abdominal cavity were responding to the chemo.  Yay!

She had her second chemo treatment the following Thursday, even though her white blood cell count was very low, and close to the cutoff.  If her WBC goes below the allowed limit, they will postpone the chemo treatment.  This time, she had a better response and days 3 – 5 went OK.  It was the following week, her week off, that things got bad again.  She could not keep anything down and has now lost about 25 lbs overall.

This week has been good so far.  Starting last Friday through today, she has felt pretty good, even sleeping well at night.  She’s been watching NFL playoffs and Univ Arizona basketball, although she isn’t always able to last through the whole game.  Most of the time, she has to return to her room and rest.  She has her third treatment this coming Thursday, assuming her WBC is good enough, which it should be after a week off.

What we have now gathered after talking more with Seth Reiner (radiology oncologist), Thomas Kenney, and Christopher Lieu, who’s currently in an advisory role, is that after Amy’s fourth treatment, and just before her fifth, or around February 8^th, she will get another CT scan to determine the efficacy of her treatments.  If the sizes of the tumors have not decreased, then Dr. Lieu says he would likely recommend the chemo drugs used to treat colon cancer.

This is not to say that Amy has colon cancer.  She is being treated as if she has bile duct cancer, but in actuality, her diagnosis is “Cancer of unknown primary” (CUP).  That is, they don’t really know where the cancer originated.  The biopsy from back in September came up negative for liver, colon, and many other possible cancers, and the PET scan did not show anything outside of the liver, except for the three nodules in the abdominal cavity.  It was decided that she must have cancer of the bile duct within her liver and that the tumors found in her abdominal cavity must have escaped out of the capsule surrounding her liver.

I took Amy’s pathology slides from her liver biopsy over to UC Denver for them to give us a second opinion.  While Dr. Lieu’s group focuses on gastrointestinal cancers, Porter Adventist Hospital has to consider everything and is not as specialized.  We hope that Dr Lieu’s findings will be more definitive, but even so, he does feel that Amy’s care is on the right track.   If she is not responding to the current treatment, then she will probably go on the treatment used for colon cancer, as I mentioned above.  Dr. Lieu can also get her into a clinical trial should that be necessary at some point later.

If she does respond, then we continue the treatments and hope the tumors will all eventually go away.  Dr Lieu told is that surgery is an option, not necessarily an eventuality.  The problem is that surgery can help with the tumor in her liver and the detected nodules in her abdominal cavity, but the fact that she has those nodules mans there are a lot more, just not detectable at this time.  Therefore, there are sources of cancer throughout her abdomen, and doing surgery would not take care of them.  In fact, those other tumors would be allowed to grow freely while Amy would be recovering from surgery and can’t get chemo treatments.

Surgery is an option if the tumors respond to the chemo to the point that we can feel pretty sure the ones not detectable at this time are actually eradicated.  Then, whatever remains of the three in her abdomen and the one in her liver could be cut out, leaving her with an excellent chance of being cancer-free.

Finley and I are doing well.  Finley loves visiting with my mom, and that has been a great help.   When I have to go out of town on business, I only go for one night, and Finley spends that with her Nana, who then takes her to preschool the next day. I’m home by the next evening to take of Finley myself.  This past Saturday, Finley spent the whole day with her aunt, uncle and cousin at the Western Stock Show here in Denver, seeing cows, horses, the rodeo, and horse jumping.  She had a great time and it was so nice for me to have a whole day getting caught up on things including cleaning.  I got to spend the whole day yesterday with Finley while Amy’s was taken care of by her parents.

Well, that’s all I have for now.  My next email will let you know the results of the upcoming CT scan.  We appreciate your thoughts and prayers for two more chemo treatments before Amy gets a CT scan, and that the results of the scan will show her tumors are definitely responding.   Your emails have been wonderful.  The outpouring of love has been humbling.

Thank you.

Michael

You are in my thoughts so frequently.  I miss you and hope to hear an update soon.  Much love my friend and wish we lived closer again.

Regina