Today’s score: Unknown 1, CF 0

The anger train continues to roll after Saturday’s journey down memory lane of my major medical blunders. And, as that steam engine doesn’t want to return to the station, I thought I’d try to reverse its course with a positive story.

During my last hospitalization five months ago, my CF team told me that I had to quit Cayston because my bacteria were showing intermediate resistance to it. Argh. Cayston? NOOOOOO. The study drug made a giant, positive difference in my life over the past few years. But the team told me to stop it, so I did. They also informed me that I needed two clean samples without any resistance to the drug before restarting it.

I could have sat back and let those tests come naturally in the course of exacerbations, but I didn’t. I requested new samples when I had opportunities, like the  hospitalization for my heart troubles when I argued with the hospital doc who didn’t see the need to collect one, as I wasn’t in for an exacerbation, and another appointment when I wasn’t due for a sputum sample.

I pressed for the tests and with luck got the results I wanted sooner rather than later, which allowed me to restart Cayston.

Now here’s why it paid off for me.

A month ago, I was showing classic signs of an exacerbation with increased coughing and mucus. So,  I restarted Cayston. It was touch and go for the first 10 days with some streaking and not feeling well, but I  turned the corner. And after four weeks, my lung pollution is almost where it is after a hospitalization. Amazing luck. Cayston worked almost as well as IVs and saved me from a trip to hell.

And though this is a simple example, it demonstrates that proactive steps can keep CF at bay – sometimes. Had I sat back and accepted my circumstances and not suggested medical tests when chances presented themselves, I wouldn’t be writing this post – I’d be in the hospital. That’s not to say that CF won’t put me in the hospital tomorrow or next week. As we all know, it can. Still, it’s nice once in a while to escape its clutches by making the right decisions.

Though a small victory in a long war, it still feels good – fleeting – but good.

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20 thoughts on “Today’s score: Unknown 1, CF 0

  1. Awesome story! I have had a similar experience with Cayston. It is the only inhaled drug that works the same as a course of IVs. Miracle!! I am glad that you got the sputum culture results that you wanted and were able to continue having great experiences with Cayston. 🙂

    • Wow. That comment came quickly. 🙂 I accidentally hit “publish.” It must have been my subconscious telling me I’d spent too much time editing.

      Thanks for the nice words. I love Cayston. I’m glad to be back on it. I may use it less often now and pull it out only when a big gun is needed.

      Saw your tweets today. Glad you’re feeling better.

  2. i think it is interesting to see how CF is treated differently across the world. When the girls have a clinic they always take a sputum sample, even when the nurse used to come to the house to flush Lauren’s port, I guess the NHS doesn’t have the same constraints that you do in the US using insurance companies. I think that the Cayston is the same drug that Lauren trialed last year, it’s brand name here was Azli, anyway she has only just got her lung function on an upward direction after using it, it really didn’t agree with her and she stopped using it after the 2nd month.
    I think you did right in insisting on having the sputum test’s done, after all you know your body best and have the knowledge of how to respond to be able to keep well for long periods. I hope that the Cayston works for you for a long while to come.

    • Perhaps it is a cost issue or they feel that not that much has changed from the last visit. They never take a sample when the home health nurse comes to the house.

      Sometimes it’s a worth a second try with drugs. Other factors may have influenced her first experience. It will be interesting to see if your docs ever suggest a second try. Yes, Azli is Cayston.

  3. Congrats for fighting for what you think is best with their approval and your timetable. It takes a seasoned CF veteran to know when to do that. You da man.

  4. Very awesome news UC!!! I have an issue with the docs putting that much faith in a sputum culture…but maybe that’s just me.

    Ronnie

      • It’s been shown that sputum cultures, with sensitivity read outs, aren’t a great way determine what antibiotics we should be on. Sure, they should be considered, but it should be far from the only criteria.

      • Interesting comment, Ronnie. I’ll ask the CF team about what you said. It seems like they called it correctly this time. I know that when I’ve been in the hospital, they’ve always used sensitivities from previous cultures to determine starting antibiotics. What other criteria does your team use?

      • My team will also look at my past sensitivities, but for example, I’m on Meropenum and I’m shown not to have much of a sensitivity to it, BUT I respond well every time I’m in the hospital. To run those sensitivities they give a number as to what it would take to kill our bugs if they were in the blood stream…that’s fine, except our bugs aren’t in our blood stream. They’re in our lungs, in our mucus and in our biofilm. That’s why we see such a movement to inhaled antibiotics, they’re actually getting to the problem.

        A couple of years ago at a big CF doctor conference it was said, “You can pick what antibiotics to give based on sensitivities or based on throwing a dart against a board and most likely have the same patient outcome”. Kind of makes you wonder huh?

      • With that said, I’m sure your docs are hedging their bets in order for you not to build a true resistance to the drug which can of course happen. But, if the time comes that you show resistant, but you feel better with it, you’ll know what to do 🙂

      • Thanks, Ronnie. Great comments that will give me something to talk to them about at clinic. I’d like to see if they agree with the comment about throwing darts against a board. Something tells me that they may not. It might throw their science out the window. We’ll see.

    • I agree with Ronnie. What we cough up with CF is only a small portion of what infections we have in our lungs. Each pocket of bacteria can have different resistances, and it is very likely that what comes up in the culture does not represent all or even most of what is in our lungs. So, the point is that even though you might culture resistant to something doesn’t mean that you shouldn’t be trying it or that it won’t work on an exacerbation. Now, a bronch lavage culture would give more broad results, but we don’t need to be that invasive.

      It IS important to do many cultures, and I’ve never had a problem getting them, it has nothing to do with being in the US ffs.

      • Thanks for the comment, CL. I understand the part about samples not pulling everything we’re growing. This may come down to the way teams work differently. Mine doesn’t do a culture every visit. And they don’t like broncs. So, they use the reports. They saw resistance and did not want to increase that resistance through the use of Cayston. They clearly did not want me trying it based on the results they had in front of them.

        As you already know, the reason it’s a different situation when it comes to IVs and using resistant drugs is because of the synergistic effect of the two drugs together. Cayston by itself wouldn’t have provided that.

        I really appreciate the discussion and your visit.

      • CL, one other thing I just thought of is that my clinic treats a lot of patients with state insurance, which I had at one point. I wonder if that limits samples or they just feel like we don’t need them that often. I am going to ask. UC

  5. I don’t have the same relationship with Cayston. But I do feel the same way when I do inhaled merropenum. (I take the IV vials and inhale them). On numerous occasions I have been in the middle of an exacerbation, I’ll start the merro and I’ll be better before my 2 weeks are up. (I also alternate inhaled meds every 2 weeks.) My most recent culture showed a resistance to merro, however, it also pulled me out of an exacerbation. So don’t hold those culture samples like they are the holy grail. They don’t always tell the whole story. I read your new entry today and I say if Cayston is helping you, then by all means, continue it!

    • If I remember from a few years ago, you were inhaling AZLI on your own, outside of the study?

      I agree 100 percent with you about if a drug works, use it. In this case, however, the team was correct. Cayston has lost its punch. Going off it helped make it effective again.

      You are a genius when it comes to 2 weeks on and two off. I’ve often thought to do that. I’ve noticed over the years that I usually get two good weeks of an antibiotic, maybe three and the last week I don’t improve. I’ve often wondered if it might work better at two weeks on and off. It’s cool that you did it.

      Thanks for the comment and visit.

      • Yes, I was inhaling Aztreonam IV vials from 2004-2008. My doc put me on Aztreonam in 2004 when I was pregnant with the twins. It was either try that, or go on IVs. With pregnancy obviously inhaled is better, less effects on the babies. And it worked!

        I had really good luck with it for years. But they just don’t make the vials accessible since Cayston came out, which is a shame for me since it worked so well and Cayston does squat. 😦 I was taking 1gram Aztreonam twice a day. Cayston is 75mg three times a day. I know it packs a big punch b/c it’s from the eflow, but it’s still not enough bang for my lungs.

        I asked my doc if I could rotate every 2 weeks about 3 years ago. It works so well for me. Like you, I start seeing a plateau, even a decline in the 3rd and 4th week. I have to switch it up and never go off abx. I never get an “off” month. (or week) *sigh*

      • I think one of the things I should do it switch off when I feel the decline. I might go two weeks and I might go three weeks. This the time the Cayston worked for four weeks. I wonder if you used the Cayston after a series of IVs if it would work for you? That’s a bummer about the large doses not being available.

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