My May

It occurs to me that some time has passed since I’ve provided a good, old-fashioned cancer update. Here’s the latest:

I’ve been taking a 300mg dose of LDK378 for 7 weeks (2+ cycles). This dose is below the trial minimum but was approved by Novartis. I had a CT scan on May 13. Compared to the last scan, my cancer is stable. Yay!

Granted, this is the first time, since starting the trial, where improvement wasn’t noted. It’s not surprising or alarming, though. In addition to a very low dose, I have taken days off, as needed, to control my side effects. (This post explains that process.)

I’m nearing what’s been documented as the mean duration of response for this drug. In other words, the average patient stops seeing improvement or stability at 7.5 months. I am VERY happy to have stability right now on LDK378.

My side effects also remain the same. Taking a lower dose allows me to skip fewer days before I feel human again. But the side effects on 300mg are pretty much the same as 450mg.

I’ve found a new way to manage some of the side effects, though. Getting high helps – a lot. I’ve tried ingesting THC via baked goods, and it improved my very bad episodes by 90-95%. The pain doesn’t go away. But I can’t focus on it; my brain can’t even think about it for more than a second. So I will feel the muscle contractions involved with the cramping, but the pain only registers for a split second. It’s unbelievable.

Hearing my revelation, my NP prescribed Marinol for me to try. While the baked goods are magical, I’m at others’ mercy for them. So if synthetic THC worked, it would be a perfect solution.

I’ve tried it three times and only when I’ve had mild pain. It takes a very long time to kick-in (not so good for my sneak attack episodes), and to date, it hasn’t distracted me from the pain and discomfort. I get a teeny tiny bit high, but the pain is still there. I’m going to try some different doses before I give up on the stuff.

I was a proponent of legalizing medical marijuana long before I became ill. I really didn’t understand how it helped – or how much – but it seemed silly to keep people from something that could help them.

I was skeptical that it would help me. Other pain relievers didn’t even touch this type of pain. How could THC help more than opioids? Silly me. Now I feel like I’ve uncovered something nearly as miraculous as a cure for cancer itself. When I start feeling that tell-tale pain, I eat a baked good with THC. I usually feel so good I hang out on the sofa after needing to be in bed all day! On a few occasions, the analgesic effect has continued into the next day. Because of this, I was able to tolerate an extra-long stint of LDK.

I was on the drug for nine days straight. But even though I was managing through my bad episodes, the LDK toxicity continued to build. After just a day or two on the drug, I was back in bed 24/7 – except when I was high.

By day nine, I was very sick. I laid in bed, too miserable to do anything but quietly cry. Seth and I weighed the pros and cons of a trip to the hospital. I wasn’t dehydrated, and despite feeling like I had a fever of 103 F, the thermometer read normal. The hospital could do nothing to help me. Only time would eliminate LDK378 from my system.

I had improved quite a bit when I saw my NP two days later. She agreed there was probably nothing the hospital could have done to help me. At least I made the right choice – my own bed and bunny was far better than exposing myself to a lot of sick people.

That brings us to this week. I resumed LDK doses during the week and took off Friday, Satirday, and Sunday. I’m going to try a 5/2 (5 days on, 2 days off) schedule where I take off every Friday and Saturday with the hope of salvaging most of the weekend.

I know I’m still going to feel sick most of the time I’m on this drug. But if it’s not awful – AND I can get relief from the worst episodes AND I can have a few symptom free days each week – I’ll stay the course. It’s not like I have a good alternative, anyway.

That’s all for now. I have eight or more posts drafted in my iPhone notes folder; but they are just that, drafts. My words aren’t flowing as I expect them to as of late. Perhaps it’s just a writer’s funk I’m in.

I apologize to my friends who haven’t heard from me lately, too. I’ve been really caught up in this whole sick-from-LDK-and-cancer thing. But I do think of you all, fondly and quite often.

4 responses to “My May

  • Craig

    I’m sorry LDK378 is so difficult for you, but glad it is controlling the cancer. BTW, I think that even with steady full doses it is normal to have the shrinkage stabilize after a while without further measurable change.

    Best hopes,



    Wanted to thank you for your postings. Not sure if your aware, but Linnea Duff, who posts also, was on LDK for a long time. I keep you in my prayers.

    Sent from my iPhone

  • stage5cancerblog

    It is good to hear from you. I hear you saying that even though life is challenging right now, it is still worthwhile. This is my hope for us all.

  • Colleen

    Hang in there. I agree with you. Why should someone be kept away from something that is going to make their quality of life better. I am not saying hand it out to the masses, but if you are sick and it helps you should be able to get it.

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