The ongoing battle with sodium

After my last Tecentriq treatment, I went to the hospital again to get more Samsca. I’d had my sodium checked that morning at my nephrologist’s lab, and it was 123.

Once admitted, I told my story to my new case manager. And (of course) she didn’t believe me. She was actually a little snooty with me, and said I should have followed up with the Otsuka Patient Assistance Foundation after my last hospitalization to extend the grant for the Samsca. And if I’d done so, I would have then been able to keep getting the Samsca every month as an outpatient. I got the feeling in her mind, I was just too stupid to follow directions. So I handed her the paperwork and the most recent Samsca rejection letter from my insurance company, and let her go try to work her magic.

The case manager came back a few hours later shaking her head. She told me she’d spent an hour on the phone with the Otsuka people, and was told I could only get a new supply of meds every 30 days, and I had to be hospitalized with low sodium each time to get them. Big surprise. So she was waiting for the nephrologist to come by and write an order so she could fax that and my application to Otsuka and get the ball rolling.

While I was in the hospital, my oncologist ordered CT scans of my neck and chest. The next morning, I asked him for the results. He said my neck and chest were clear, but the radiologist had seen something in my stomach. So he wanted me to go back for a CT of the abdomen so he could get a better look.

I was out of the hospital before I saw the oncologist again, so I don’t have the results of the abdominal scan yet. I already knew there was something in my stomach from my last pet scan, so I didn’t see any real point in calling to get the scan results when I can just get them at my next appointment. And if I got the results before the oncologist had a few minutes to talk to me and they’re not good, I’ll just worry until my next appointment when it may not yet be time to panic.

Which brings me back to the Samsca/sodium issue. When I left the hospital (on Friday), the case manager told me my 30 Samsca pills would arrive on Saturday. Instead, I got a phone call from a specialty pharmacy asking where I wanted them shipped. So I gave the woman who called my address, and she said the pills would be delivered on Wednesday. It’s a good thing I always go back to the hospital when I still have some pills tucked away at home. Otherwise, I’d have had to go right back in.

On Wednesday, the pills were delivered as promised. There were 30 this time, but they were all 15 mg. They were supposed to be 30 mg. So instead of a month’s supply, I only had enough for about two weeks. So I called the Otsuka Patient Foundation to see what was going on. The man on the phone was very nice. He said the order he had from my most recent hospitalization was for 30 mg pills. So it wasn’t my doctor’s fault (or the hospital’s). So far, so good.

While he had me on the phone, the man from Otsuka called the specialty pharmacy and got someone on the phone with us. She said the only prescription she had was dated July 11, and it was for 15 mg pills. He said he’d send her the new prescription, and she promised to get me the rest of my pills by Friday.

After the woman from the pharmacy hung up, I asked the guy from Otsuka if there was any way to get around the hospitalization rule since I’d been on the Samsca for three years and had been hospitalized three times since July. He said it was unfortunate, but there was no way around it. So I’ve done everything I can from my end to try to fix this situation.

On Friday, I got another package from the specialty pharmacy. This time, they’d sent 30 mg pills. Enough for an entire month. So I ended up with an extra 30 pills; they’re only 15 mg, but I’ll take whatever I can get.

When I left the hospital, my sodium was 133. It’s been slowly dropping since then, and is now at 124. The nephrologist said I should now alternate my Samsca doses and take 60 mg one day, and 30 mg the next. I asked if I could try doing 45/30, and he said that was fine. Today was the first day I took 45. So far, it doesn’t seem to be working (still retaining water), so I may have to go up to 60 mg after all. This will mean another hospital visit in the next few weeks.

Tomorrow, I’ll see the oncologist, get the results of my abdominal scan, and see if he thinks we should continue with the Tecentriq or try something else. It took about six treatments for the Keytruda to start working (tomorrow is number five of Tecentriq), so I’m hopeful he’ll still think it’s going to work for me.

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

Julie