Tag Archives: binimetinib

Part of the machine

Posted on February 23, 2021 | 10 comments

Although I am exceedingly grateful that I have had an actual response to this duo of drugs (binimetinib and lorlatinib), the side effect profile remains complicated.

Two drugs, neither easy, combined.

At the moment, the pustular acne is under control (and I have to say, I think pustular acne might be a stopping point for many). If I don’t go to the studio (not an option) my fingers are less likely to split. However I am struggling with some pretty severe insomnia and peripheral neuropathy–both the painful kind and numbing of my extremities. I am starting to stumble because of the lack of feeling in my feet and the other day it ran through my mind that perhaps it was time to get off this hamster wheel. For a spell. But as soon as I thought it, I also had this intense feeling that I would be letting people down.

How ridiculous, that. Firstly, this is my sixth phase I trial. Secondly, my first obligation is to self. You know, like on the airplane, where you are to put your oxygen mask on prior to assisting other passengers. And I am a cancer patient, not some sort of hero.

Per side effects, I haven’t even mentioned the high cholesterol, low iron, slowed speech and other cognitive changes that are secondary to treatment. And whereas the assumption is that TKI’s must be taken daily, do we really know if that’s true? We do not.

So let’s just say I’m mulling. Doing a bit of intensive risk/benefit analysis. Going for the long game but also not willing to suffer a whole heck of a lot more collateral damage in the meantime.

It’s a lot to ponder.

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Another spin around the block

Posted on February 16, 2021 | 1 comment

I am in some sort of semi agitated/unsettled state. It seems I can’t keep my eyes open. But I also cannot sleep. Last week I tried Ritalin and although day one was great (focus! oh rapture!) I also vomited. As binimetinib can make me nauseous I attributed it to that but day two of Ritalin I was intensely sick to my stomach again. And, oddly, sleepy. I took a three hour nap–in the morning. Day three, sleepy, vomiting and there was no day four. Over the weekend I held my binimetinib, in case that was the cause of my droopy eyes.

After emailing Jess about this effect yesterday, I heard back from my scheduler today, asking if I would come in for blood work and possibly a transfusion. The latter because I have also been trending more and more anemic.

In I went, but wouldn’t you know it, my hematocrit had gone up a point and a half. Mystery not solved. The plan for the moment is to continue to hold the binimetinib and I am starting on some prescription iron tabs as well. We shall see.

In the meantime I went to bed tonight around 9:30. My brain was ready but my body was not. First I tried the shaky leg thing, but when that did nothing (sometimes it’s soothing) I found myself making shadow animals on the ceiling. Turns out I’m still pretty adept at rabbit, llama and giraffe.

I was making myself mad though as continuing to lie in bed when you cannot sleep is very quickly fucking annoying. So I got up and made a cup of tea. And now I’m writing a blog. In a couple of minutes I’m going to wheel that bike over to the garage and give sleep another go. Hopefully body and brain will be in accord.

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Action plan

Posted on November 14, 2019 | 18 comments

I had an oncology appointment in Boston today and met one of the new members of my team. Alice will remain my oncologist, but her role will necessarily be more limited than before. I told this new doctor that I felt my cancer was now in my right lung as well–I can both feel and hear it (wheezing/crackling). She took a listen with the stethoscope and confirmed.

So those horses are not only out of the barn–they are moving to another pasture.

Obviously that’s not a good thing. It’s a damn shame that lungs are an essential organ, but it is what it is. And what it is, is that it’s getting harder to breathe.

Time to spring into action. Given the fact that I have some upcoming big plans (a panel at Takeda, my TED talk, birthday, Thanksgiving) we are holding off until December. Scans on the 2nd, first infusion on the 5th.

Originally the plan was to add carboplatin and avastin to lorlatinib. However I have already had four rounds of carbo as well as four rounds of cisplatin. A lot of platinum for one girl. My peripheral neuropathy is rather severe, particularly in my feet. On various occasions I have walked around unaware that I had cardboard liners, stones, or wet socks in my shoes. The bottom of my feet are almost totally numb, and although I have adapted to this unsettling scenario (only an occasional stumble) we certainly don’t want it to get worse.

So Alice felt carbo was not the best bet, and that perhaps we should go with pemetrexed instead. We were going to add avastin, in the hope of hitting the cancer with a bigger hammer. However, I have been coughing up some blood and also have had small abrasions become larger wounds that were loathe to heal–both indicators that I might be at greater risk for bleeding in my lungs secondary to avastin.

There is a distinct possibility (and a big, big hope) that chemotherapy will have a synergistic effect with both lorlatinib and binimetinib–the drug I would receive in conjunction with lorlatinib in the next clinical trial I shall enroll in. Given that, I want to make certain our approach is not tepid. As avastin has been ruled out, I asked that carbo be added back in–but at a lower dose. If I tolerate the first round, we will continue. If not, then it will simply be pemetrexed.

I had a vitamin B12 shot today and will begin taking folic acid in preparation for infusion. I am ready but also understandably leery. This will be the first time that I have undergone chemo while living alone. That in itself should be a bit of an adventure. However, I think I know what to expect.

And I am ready to launch an attack.

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Branching out

Posted on October 5, 2019 | 13 comments

So. The goddess came through.

First we reviewed my scans and discussed the findings:

Sub-solid mass like opacities in the left upper lobe have increased in size and attenuation since the prior study as described.

Persistent and slightly increased groundglass and interlobular septal thickening in the basilar left lung, suggestive of lymphangitic carcinomatosis. 

Additional sub solid nodules in the left lung are stable or slightly increased in size compared with the prior exam. 

Slightly increased small loculated left pleural effusion.

No surprises there and I am grateful that the word slightly predominates. It is clear where this trend is going but it would also seem that we have time to figure out what the best approach shall be.

First, I am to start nebulizing in an attempt to address my bronchorrhea–the source of the persistent crackle in my left lung. And should it get worse, there is the option of combining pemetrexed with lorlatinib–which would mean leaving the trial and getting lorlatinib by prescription. Avastin could be added to the mix for possibly greater efficacy. Alice is going to start the ball rolling in that direction so that I can apply for financial assistance to help pay for the deductible on lorlatinib–just in case. However pemetrexed kicked my butt energy wise when I was on it seven years ago, so this course will only be as needed.

Most exciting is the news that Alice is going to be opening her own trial at MGH in a couple of months–combining lorlatinib with a MEK inhibitor–binimetinib. She feels this is something that could be effective in my case, so it is my first choice.

Also encouraging is what has been going on behind the scenes in Alice’s lab. My last biopsy identified three secondary acquired mutations. One, G1202R, I had previously and lorlatinib is likely at least somewhat effective against that yet. The other two are newly acquired: S1206F and G1269A. S1206F is rare; Alice has not seen it in any of her other patients. However G1269A is becoming a more common mechanism of resistance to ALK inhibition, along with G1202R.

Alice then shared with me that they have been attempting to make models of all the possible combinations of my three mutations, so as to test drug against them.


I tell you what. This is not the Cadillac of health care, it is the Bugatti La Voiture Noire. It is incredibly humbling to understand the astounding degree of highly personalized effort being expended in the interest of saving my ass. So I damn well better show up.

Yes. That branch just got a little bit thicker–it might even be sprouting some new growth. Alice’s parting words to me were ‘If anyone can do this, you can Linnea.’ To which I responded, ‘If anyone can do this, we can, Alice.’

xo

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