Dec 212016

jule-christmasLast week, I was finally released from the hospital after another week-long stay. The drug I’m taking to keep the cancer under control (Keytruda) keeps making my sodium drop to critical levels. And the Samsca wasn’t working very well to bring it back up. They went from giving me 15 mg pills to 30 mg, and one day every 60 mg.

Today, I went to the oncologist for a follow-up appointment. He said I may be the only person with small cell lung cancer complicated by SIADH to ever take Keytruda, so there’s no literature on how to handle the drop in sodium that the Keytruda is triggering.

On the plus side, he and my Orlando oncologist both believe the drop in sodium is a good sign the Keytruda is killing the cancer cells. On the other hand, if they can’t figure out how to treat the sodium drop, they have to stop giving me the Keytruda. They’re going to give it one more shot.

My husband asked if they could switch me to the Opdivo if necessary. The doctor said the Keytruda and the Opdivo are the same class of drugs and he thinks the Keytruda is better, so it wouldn’t make sense to do that. I asked if there were other options and said, “Oh yeah. There are lots of other options. We were just trying to keep you off the chemo.” That tells me the options are chemo, and I don’t know  how much more of that I can handle.

The oncologist did say he was optimistic that the Keytruda is working, so I shouldn’t worry about other options for now (easier said than done). My next dose is scheduled for next Thursday morning. The doctor said we could reschedule for the week of Jan. 1 due to the holiday weekend, but right now we’re maxed on what we have to pay out-of-pocket for the year and each dose costs the insurance company $9,000 (which leaves us paying $900 every three weeks for our share). We went to see the practice’s financial adviser today and she’s working on getting the drug company to pay our share. Since small cell lung cancer is rare and a lot of people don’t survive initial treatments (and Keytruda is not yet approved for the treatment of small cell), I think there’s a good chance they will.

In the meantime, I have family coming in for Christmas. They’re due to arrive late tonight. The home health nurse is coming every other day to draw my blood. She takes the sample to the hospital now so all of my doctors can quickly and easily access the results. When I left the hospital, it was 118. My doctors decided that number was okay for me because my body is used to low sodium and I don’t have any symptoms.

On Monday, my sodium was 120. I was really excited about it going up. Today, my sodium was 118. A woman from my nephrologist’s office called and told me the doctor said to make sure I’m not drinking any water. I haven’t been. I’ve been drinking nothing but Gatorade with no ice. The only water I get is what I have to put in my feeding tube to flush my meds down. And I’m keeping that to a bare minimum. I told that to the woman in the office and she said that was fine. Keep doing what I’m doing. That didn’t leave me feeling very confident about being able to stay home for Christmas. But they won’t check my sodium again until Friday, so unless I get sick between now and then, at least I have a few more days at home.

Right now, I’m taking a 30 mg Samsca pill every day to try to keep my sodium up. I’m going to run out right after the first of the year, at which time I’ll have to wait until my sodium drops real low again, then go back to the hospital and pray the drug company will have mercy on me and send me more free pills.

For those of you who pray, please do. I need all the help I can get right now!

 Posted by at 7:57 pm

  14 Responses to “Another dilemma”

  1. How about the prayers pray for a sodium level of 124. And the non-prayers wish for a sodium level of 124. There is some scientific evidence that this can work. Shall we give it a try?

  2. Praying

  3. Jewels you have been in a lot of peoples prayers as some times that all I feel I can do to help and I am sure others feel the same. When I meditate my deep healing breaths are for you.
    I am sorry that my job is going to delay me getting there for New Years but I will get there soon. I don’t care if you are in the hospital (although I don’t want you to be there) I am coming to see you to spend some time with you.
    I hope that the Keytruda works and that soon you will be on the road to a healthy life, and hopefully you are already heading in that direction. Love you

  4. I am praying for you JUlie!!! Hope you get to enjoy your guests and have a wonderful Christmas!!

  5. Enjoy the positive times for the Holiday! We all have you in our prayers!

  6. Praying for all you need for healing & to be able to enjoy the holidays with your family. We’ve never met, but between Teresa & your blog you have continued to be in my heart & prayers. My holiday best for you, Julie.

  7. Praying. Nice to be with your family! Lots of XOXO

  8. I am praying for you, Julie!

  9. Prayers that God will always provide what you need, Julie.

  10. Hey Jules,

    I agree with everything that Gina says. I am glad she can make it to see you soon and spend time with you and enjoy the time with your family when they get down there. A lot of people are praying for you and we all have you in our thoughts. Big hugs to you. Love you lots!

  11. Everything Gina and Renee said. Hope the insurance company helps you guys out. Merry Xmas and hopes for a better new year!

  12. Julie, we think about you every day and pray that the perfect combination of things will click in any second!!! So proud of you. You’re amazing! Merry Christmas!

  13. My wife has small cell, was diagnosed as result of low sodium (117), is now taking Keytruda, and sodium levels are dropping. How are you doing in June 2017?

    • I’m doing pretty well. I have no visible cancer. My sodium levels were steady while I was taking the Samsca. Has your wife been taking that? I may need to start it again. How long has she been on the Keytruda?

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