Looks like another non-existent Christmas season

It’s 5 days since my first infusion of MK-3475, Merck’s anti-PD1 immunotherapy drug, in clinical trials for non-small cell lung cancer and melanoma.  It’s been fast-tracked by the FDA for melanoma, so if the data is smashing, it could be approved very quickly (for melanoma). While I think it’s a good thing that three large pharma companies are racing to be first to market with their anti-PD1 or PDL-1 drug, I hope safety and thoroughness aren’t being sacrificed.  We all know that many long-term side effects can’t be discovered until way down the road, but I wonder if there aren’t markers early on to point to possible problems.

I’m vigilant as regards pneumonitis. I’m already short of breath, and it has not improved, which worries me.  Of course I have a couple of pulmonary embolisms… I really just wish I could know sooner rather than later if this is going to work.  No such luck, I’m told.  One just can’t know if it’s working or not, at least not right away.

I’m exhausted.  Seriously, like run over by a Mack truck and beat with a baseball bat.  I can sleep standing up, it’s that bad.  The night after infusion I had severe chills and my already off-the-scale pain escalated into the stratosphere.  Today is the first day I’ve had any relief – I’ve increased my morphine dose by half and am now taking percocet simultaneously (there is no such thing as breakthrough pain – I’m already there, all the time).  Worse pain? Apparently things could get worse before they improve – inflammatory response and all that.  I’ve heard others are also experiencing increased pain… and itching.  Yeah, more itching all over.  So I can’t get comfortable, as sleeping on any part of my body for over 4 hours produces excruciating pain in that area – heating pad, pain patches, cushions, etc. notwithstanding.  I haven’t had an unbroken night’s sleep yet.  I sound like a mental case.

Thankfully, cannabinoids are allowed.  Hurray, cannabis isn’t illicit!  I just have to muster the energy to make something. Am working on that tonight.  Topical application of cannabis-infused olive oil works fairly well, but is very temporary and I don’t have much of it.  I’ll have to source it in larger quantities to be able to use it as a massage oil. Also helps the itching. So that’s immunotherapy so far.

Meanwhile, the Christmas season, like sand, is sifting through my fingers.  Time just laughs at me.  Energy laughs harder.  They conspire to keep my eyes from being open long enough to accomplish anything as seasonal as sending cards or shopping for gifts or even making food.  Resistance is futile, I should just give in.

So, edibles recipes.  I’m thinking shortbread.




4 thoughts on “Looks like another non-existent Christmas season

    • Hi Mark, there’s definitely increased pain, which I’ll have to ask about. Pneumonitis is a side effect of the anti-PD1 agents, but not the anti-PDL1 (hence my preference for the Roche/Genentech trial). All I can do is try to determine if symptoms are increasing, besides SOB. I’m thinking wheeziness, crackly noises, more coughing? They say pneumonitis occurrence is ~3%. My liver counts are already on the high side so we’ll be watching those, as inflamed liver is another side effect. I get 3 EKG’s before and after infusion. The itching is def a SE, and GI issues of course. Problem is, all the painkillers already mess with my stomach so I don’t see how I’ll be able to distinguish. I’ve been randomized to q 2 weeks. Other folks on the trial say they didn’t get side effects until 5 – 10 days post infusion, at which time they had fevers every day, diarrhea, fatigue, itching. Mostly I’m hoping pain levels eventually drop because I have to say, I’m no wimp and things are pretty excruciating! REally hoping the pot gingerbread will help –

      Merry Christmas to you, by the way 🙂

  1. Here’s hoping you get some relief and some tasty recipe suggestions as well. I’m in CO for the holidays with my older son who has a medical marijuana scrip. I’ve never been a fan of cannabinoids, but I have a close friend with lung cancer who attributes the fact that he is doing so well (and he was in really bad shape for a time) to hemp oil, THC removed. I’m tempted…and certainly would have access here. Will let you know if I give it a try…Merry Christmas (as best you can)


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