Nov 232018

Since my last blog post, I’ve made yet another trip to the hospital for Samsca. This was my fourth hospital visit since late July. Otsuka is making the process of getting the drug more and more difficult, so this time I was in for an entire week.

It turns out Otsuka now has an online application, so the print form on their website (which we initially sent in) was no good. My case manager was off the Friday I was in, and nobody followed up with Otsuka after our application had been faxed, so I was stuck there over the weekend. Sadly, I missed a chance to meet up with my cousins in Flagler Beach and the Kansas City Chiefs game. Needless to say, I wasn’t real happy.

Anyway, the online application requires me, the case manager, and the nephrologist’s office to sign up for some sort of Otsuka portal, after which we can all go in and complete our portions of the application (still only when I’m hospitalized). Since I can’t envision a world in which my nephrologist would bother to do any of that (but he may have a staff member who would), we were lucky to get a paper version of the current form to fax over. She gave me a blank copy to use next time around.

In the meantime, my Samsca dose had to be raised to 45 mg/day. So that’s what the nephrologist ordered. I got the approval on Monday and was able to go home, but was told since I’d already been given six doses while in the hospital, I would only be receiving 24 in the mail. Lucky for me, the specialty pharmacy didn’t know they were only supposed to only send 24 doses, so they sent me enough for 30 more days.

While I was in the hospital, I found out the appeal I filed with the insurance company had been successful, and they’d agreed to pay $5,400 per month for the drug. The Walgreens specialty pharmacy had told me if we could get my insurance company to cover their portion, they had some sort of coupon that would allow me to get refills every month for $10. So, yay!, right?

Not so fast…When the billing person from Walgreen’s called me this time, she said even after the coupon, I’d still have to pay around $1,800. That’s just a bit more than the $10 copay they’d promised me. It turns out the retail price for 30 (30mg) Samsca pills is $16,000. And I need 45 milligrams a day. Ridiculous. So I told the case manager to make a note in my chart to stop calling Walgreen’s for help.

My next oncology appointment and treatment were on Wednesday. I asked for the results of my abdominal CT. I still have the lymph node tumor in my stomach. When I asked if it had grown since my last scan, the oncologist sort of glossed over the subject and reminded me we needed to be looking at the sodium more so than the scans. I couldn’t find the results of my last PET scan in the chaos I call my desk so I could compare the two. But I’m getting a new CT scan next week, so I’ll find out what’s happening then.

I have an appointment to see the oncologist next Friday to talk about the new scan and whether he thinks it’s time to look at clinical trials. In the meantime, I called Moffitt, which is about 2 1/2 hours away, and asked about clinical trials there.

A few days later, I received a call back, and the guy I talked to e-mailed me a list of clinical trials for which I am qualified on paper. Only one is specific to small cell lung cancer, and it may or may not include chemotherapy. Which means my blood counts would drop, thereby zapping all my energy, and I’d lose my hair again (easy come, easy go). The other trials just say they’re for advanced metastatic solid tumors so they’re not specific to my type of cancer, but they may have fewer side effects. I’ll have to see what my oncologist has to say.

Since leaving the hospital, my sodium’s been running 124-125. My nephrologist doesn’t seem to be worried about it as long as I’m not having symptoms. I guess my body had become accustomed to the low sodium, so I may just have to learn to deal with it.

The last time I saw the nephrologist, I had a few questions that had been weighing on my mind lately. First, I asked him if the Tecentriq fails and we run out of acceptable treatment options, if he thought the sodium problem would take me before the cancer. He said he didn’t think so since my body seemed to be used to functioning well on low sodium. He thought the cancer would get me first. I’m not really sure yet if that’s the answer I was hoping for. On the one hand, I don’t like the idea of the seizures from the low sodium, but the coma part doesn’t sound like a bad way to go. On the other hand, I hear the cancer pain is horrendous, and toward the end, the cancer takes over your brain. So neither option sounds very appealing.

My second question was if I get to a point where I’m ready for hospice, will I still be able to take the Samsca for the sodium? My thinking here is if I decide to go on hospice, I’d like to enjoy the time I have left for as long as I’m able. To do that, I need to control both the sodium and the pain as much as possible. The nephrologist said since the Samsca’s not considered a cancer treatment, I should be able to stay on it. That was the answer I wanted.

That’s where things stand for now. Thank you for sharing my journey.


  9 Responses to “Scan results and some tough questions”

  1. I am going to start with I love you, I think you are one of the bravest person I know as I don’t think I could of handled half of what you have already been through.
    I am sorry you did not get to see your cousins especially for the reason you did. I think that would make anyone mad.
    I am still hoping and praying for a miracle and maybe a new trail drug will be that miracle.

  2. Wishing you all the best, Julie. You have a lot on your mind right now. May all the bureocratic problems take care of themselves, so you have a chance to enjoy your life. You are a very brave woman.
    With love,

    Mireya Novo

    PS I couldn’t erase the previous comment.

  3. Julie,
    All words seem inadequate based on your most recent posting. Your strength continues to amaze me. Prayers that you will find peace and small pleasures in this difficult
    We missed seeing you at the Flagler gathering.
    Take care,

  4. I dont know what to say jules but you are more stronger than I would be. I agree with what Gina said and I hope for a miracle as well for you.
    Love you lots

  5. Can you try Keytruda again? Do they still consider this small cell lung cancer or metastatic now? Might make a difference in the treatment. Is there another uncancer related remotely possible cause for the low sodium. Could those numbers be your normal? Love you and hate that you are going through this! I hope you are still feeling up to having company! My church and other friends and family are still praying for you.

    • I don’t think there’s any point in trying Keytruda again. Not now anyway. I have metastatic small cell lung cancer. That’s been my diagnosis for two years now. The cancer is definitely what’s causing the low sodium. And low 120s is probably where I’ll stay until we find something to stop the cancer again. I’m very excited to see you all at Christmas. I have no idea what kind of shape I’ll be in by then, but as long as I’m still here, we’re all going to celebrate. Love you, too. And tell your friends I appreciate the prayers.

  6. You are so brave in this terrible battle. I pray for you constantly.

    Love, Aunt Betty

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