Oct 012018

Bucket list cruise to Alaska. August, 2018.

There are two types of lung cancer: 1) small cell lung cancer; and 2) non-small cell lung cancer. And within those two types are many different subtypes. I have small cell neuroendocrine carcinoma. Neuroendocrine tumors can be very tricky because they secrete excess hormones. In my case, the tumors secrete excess anti-diuretic hormone, which causes me to retain water, which causes my sodium level to plummet – a condition known as Syndrome of Inappropriate Antidiuretic Hormone (SIADH).

Those who have been following my blog from the beginning know that my sodium level is the best indication of whether or not my cancer is under control. When tumors start growing, my sodium level drops.

My sodium has been steadily dropping since May. The only thing that will bring it back up is a drug called Samsca. The Samsca is crazy expensive. The drug manufacturer (Otsuka) has a grant that’ll get me a 30-day supply for free, but I have to be in the hospital in order to get it. And what constitutes a 30-day supply depends on whether or not I have tumors growing.

When I found out I had a cancerous lymph  node in my stomach back in May of this year, I began taking 15 mg of Samsca around twice a week. My dose has been steadily increasing since then. When I was up to 15 mg a day, I went back to the hospital and got 30 more 15 mg pills. That was in July. A few weeks ago, my nephrologist told me to increase my dose to 30 mg a day. I knew my supply wasn’t going to last very long at that rate, so I decided to go ahead and make a trip to the hospital. This was on a Tuesday.

I asked my nephrologist to call ahead and get me a hospital bed, but he told his staff to tell me to just go to the ER. I tried calling my oncologist to have me admitted, but he wasn’t in that day. So I spent six hours in the ER before I was taken to my room. And by that time, it was too late for anything to be done that day, so a huge chunk of my day had been completely wasted.

The next morning, I gave the case worker the grant paperwork that had been filled out last time I’d been in the hospital, so all she had to do was fill out a new form, get an order from my nephrologist for the pills, and fax it to Otsuka. Otsuka has to do an insurance pre-authorization, and once the insurance company denies the claim, they’ll agree to send me the drugs. Sounds simple enough.

So the next day (Thursday), my nurse told me my medication had been approved, my sodium was back up, and I’d be going home that day. Since they’d had to call my primary care physician (PCP) to admit me, he was the only one who could release me. And he wouldn’t let me go until after he’d made his rounds after office hours. So I was stuck for the day.

While I was waiting to be sprung, the Walgreen’s specialty pharmacy called me and said there was a problem with my order due to an insurance issue. I was confused because my pills should have been coming from Otsuka, not Walgreen’s, so I asked what was going on. The billing person at Walgreen’s said my nephrologist’s office was going to appeal the insurance denial so I could stop coming to the hospital every month or so to get my pills. In the meantime, they were going to send me nine pills to “hold me over.” I told her even if my insurance did cover their portion of the Samsca, there was no way I could afford mine. She said, “We have a coupon that will help.”

I was furious because I knew if I went home with only nine pills, there was no way my nephrologist’s office was going to file an appeal and get a response in nine days. My nephrologist couldn’t even be bothered to make a phone call to get me admitted to the hospital. So I called my nurse and asked her to send in the case manager.

I tend to cry when I get really angry, so by the time the case manager got to my room, I was in tears. I told her I couldn’t leave with only nine pills because I’d just end up coming back the following week. She told me the woman at Wallgreen’s was “like a little bulldog,” and she’d be on my nephrologist’s office to file that appeal. And with the Walgreen’s coupon, my share of the pills would only be $10. She said she was doing all this to stop the cycle once and for all so I could quit coming to the hospital for my meds.

Fat chance. I’ve been going through this for three years, and I knew this was going to mean another trip to the hospital in about nine days. But she wasn’t giving me a choice, so I was released from the hospital and the nine pills came via Fedex on Friday.

On Monday, I called my nephrologist’s office and asked for the office manager to see what was happening so far. He said he had just faxed my lab results and progress reports for the past few months to SAV-RX. That’s the drug company for my insurance plan; they do prescription prior authorizations and denials. Now we were just waiting for a response.

This has been going on long enough for me to know what the response was going to be. So I called SAV-RX and asked what I needed to do to file a formal appeal. The woman I talked to said, “We don’t do appeals here.” My insurance company has been telling me all this time that SAV-RX makes all the decisions about medications. So I asked the woman at SAV-RX where I should go to file an appeal. She said, “I don’t know. Look at your insurance policy.” So no help there.

Even though I’d done this more than once before with no success, I called my contact at the insurance company. She’s always been very helpful when I’ve called, even though she hasn’t yet been able to fix this for me. She referred me to someone else, and she said either I or my doctor needed to write a letter to the “appeals committee,” and I should just send it to her with any background information that would help my case.

So I gathered my labs and my progress notes, wrote a letter (My nephrologist would never have done it.), and am sending it out via Fedex in the morning. But there’s really no rush since the appeals committee just met, and it will be a few more months before they meet again.

In the meantime, I’m about out of Samsca, so I’m hoping to go back to the hospital on Wednesday so I can get some more pills to help get me by. I normally try to go to the hospital on a Monday so I don’t get stuck in there over the weekend. But I have an appointment with the oncologist on Wednesday for my next Tecentriq treatment. He seems pretty confident that the Tecentriq will work for me for a while, so I don’t want to miss my treatment and doctor visit. After this visit, we’ll do CT scans to see what’s going on with the cancer.

My hope is to have my oncologist get me a hospital room sometime Wednesday afternoon. Which is tricky because I have to do a balancing act between keeping my sodium high enough to be safe, but low enough to get me admitted to the hospital. That’s going to be pretty tough because I haven’t had it checked since last Thursday. It was 130 then, but now, who knows?

So I figured my safest choice is to only take 15 mg of Samsca today and skip it all together tomorrow. I’ll get up early on Wednesday and have my blood drawn at my nephrologist’s lab because he’ll get the results much quicker if I do it there. Then I’ll go for my treatment and have my blood drawn again (The oncologist’s office doesn’t get their sodium results until the next day.). Early that afternoon, I’ll call the nephrologist’s office (if they haven’t already called me) and ask for my sodium results. Then I’ll call the oncologist’s office and have him get me a bed.

That’s the plan anyway.

On a somewhat lighter note, I had a Skype call with some people from the CDC last Tuesday. I’m being considered for one of their anti-smoking commercials (Who would have thought…?). It will probably take some time before I hear back (being that they’re a government agency). If they do choose me, they’ll fly me to New York, pay for my hotel, and pay me around $3,000 for doing the commercial. I like New York, so that could be fun.

That’s it for now. Thanks for sharing my journey with me.


  9 Responses to “Living with SIADH”

  1. First no wonder you are tired so much, that tired me out just thinking about it. Heck I think I might need a nap now.

    Second even though the circumstances are horrible I think a trip would be great. You and John going or should I schedule a plane ticket and meet you there?

    Love you.

    • Sounds good, but other than John going to KC at Christmas, we have no current travel plans. I’m not sure I’m stable enough to go anywhere right now.

      Love you, too.

    • I just realized you were talking about the New York trip (My brain is tired.) Would love to have you meet us if we go (or if John doesn’t want to go)!

  2. Like Gina said that made me tired just reading all that! I am ready to sleep also! If you go on your trip either with John or Gina, have a good time despite feeling bad.

    Love you Jules

  3. Well…all I can say is you must be a genius just to remember all of the details. It’s great that you can share your experiences. You may be helping people you don’t even know. The thing about the commercial is pretty interesting. It would be a lark and you woutdoor be helping even more people! I hope it happens and that you write about it! Good luck. As always, prayers.❤️

  4. Boy you have so much on your plate. I get the crying. Hope you get the commercial the money will help with meds Hope the insurance gets their shit together for your sake. Love ya.

  5. Keep staying strong grandma I love you.

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