Tag Archives: DS-1062a

Coping mechanisms

Somehow, someway. Kind of my go to motto these days. Slowly but surely I am figuring this shit out.

With the mouth sores under control (hallelujah), depression remained my biggest problem. I had a virtual meeting with a psychiatrist and we discussed the possibility of trauma therapy. I have yet to receive a referral (it was a year wait for the trauma therapists at MGH), but in the meantime she added an antidepressant to the prozac I take daily. It’s called mirtazapine and I am on 15 mg in addition to 40 mg of the fluoxetine. It seems to be working, as my mood and energy level are both elevated.

Stable cancer, manageable mucositis and mood. A week from tomorrow I am scheduled for yet another infusion of DS-1062a.

Yesterday morning I began my book FOR REAL. I am nudging myself into a schedule—art studio in the a.m. (while it’s still cool) and writing the rest of the day, with some walking, exercise, and meal preparation in the mix.

There is a freight elevator in the old mill where my studio is located, but I choose instead to walk up the four flights of stairs daily. I am working on becoming stronger, and those steps are an opportunity.

I am also starting to be out and about more–even going to some thrift stores. Of course I wear my mask and am careful about hand cleaning, but I refuse to remain a hermit for the next year or two. I need to be social, if only in a limited fashion. In fact, this weekend I shall be meeting two of my kids in the Boston Common for dinner—the first time we’ve been together in months. It took some convincing on my part (that it was ok) but again, one has to weigh the benefits against the risk.

Two months ago I didn’t think I’d be feeling as hopeful as I am right now–I came awfully close to saying uncle. The trick was finding the correct antidote to the side effects of treatment. A workable balance between the quality and the quantity.

Up and up

Big day yesterday with labs, eye exam and scans. And the good news is, stability abounds.

However, my mouth sores are back albeit in a milder version of themselves. However, the fact that they are there at all means that we will be pushing back infusion by two weeks again.

Woohoo! I feel like I just won a trip to Tahiti! Well, almost. How to celebrate? Go back to bed? Stay up and get shit done? Have an early morning cocktail?

All equally appealing but I’m gonna go with door number two. The day is long and there is always time yet for one and three. In fact, almost guaranteed that I shall pay them a visit.

Living large in the time of pandemic.

xoxoxo

Down and up date

My mood is a wobble.

The good news–thanks to a miracle product suggested by a nurse who works with head and neck cancers, my mucositis is finally under control. Yet there, but a tiny little brush fire. I ordered this stuff from Amazon and it’s not cheap but it is worth every penny.

I have scans again next Tuesday—because of the time off treatment they came up fast. Infusion is scheduled again two days later but I am hoping that Jess and Alice will read my scans first and we can discuss.

My ongoing issue is depression. Given that I had an infusion reaction right out of the gate, I am wondering if this could be related to cytokine release–which my smart friend Janet suggested as a possibility. I have been dealing with GI symptoms–both diarrhea and vomiting, as well as occasional chills; all of which could be attributed to cytokines. Those are manageable side effects, but being sad is not.

I continue to prepare meals, walk my dog, go to the studio. And–with social distancing observed–I am gradually becoming more social. On Saturday my friend Jim picked me up and we drove up the coast–with masks on and windows open–stopping at a restaurant on the marsh just south of Portsmouth for fried clams and a lobster roll. It was so much fun. I’ve had three other picnics in the past two weeks now; that and hiking seem to be the best sort of outing for the moment. My friends have all been super respectful when it comes to wearing masks, for which I am most grateful.

So that’s the scoop (one daily, mixed in water, for the Healios).

xo

In every crisis there is opportunity

Without a doubt part of what gets me through is a solid belief that nothing is wasted. Even the shittiest of circumstances can be the basis for good compost and thence a thriving garden.

After a four week break I had yet another infusion last Wednesday. Happily, it took a week for the mucositis to rear its ugly head and thus far it is manageable.

The day after infusion I felt a distinct lack of motivation. However it would take another several days for depression to kick in.

To return to the metaphor of agriculture, this is no garden variety depression. Rather, it is something I can only describe as despair.

So very unfamiliar to me, who has cycled quickly in and out of depression my entire life. This is something different–something heavy that sits upon the center of my chest and refuses to budge. Without raising red flags (I’ve got this) it is the sort of boundless sadness that includes suicidal ideation.

Yes, that bad. And yet—I understand implicitly that this is chemical. Previously I wondered how much had to do with being uncomfortable–the mouth sores–but this time it is clearly independent.

For whatever reason this drug fucks with my head–big time. It is difficult to collaborate when you are the only person reporting such a side effect and unlike lorlatinib, this is not a small molecule designed to cross the blood brain barrier.

No matter. My empirical evidence rests on my own account–the very reason humans are used in phase I trials. Although this molecule may be having some modest benefit against my cancer, the cost to my psyche is untenable.

Surviving is a tricky business. The first requirement is consent–another way of saying a strong desire to live. This drug diminishes that instinct in me–to a notable degree. Had I not so much self control and the ability to step back and be unemotional, I would say to a dangerous degree.

As someone who has (and continues to) dally with recreational drugs I understand that this is chemical and therefore not without end. When I take an edible (THC) and get too high, I know that within perhaps a five hour window, I will come back down. This is going to take longer—possibly weeks. However, I am reassured that although it is me feeling this way (despair) it is not without provocation. There is a light at the end of the tunnel–my will to survive and its attendant joie de vivre will return. I just have to hang on.

I have the ability to remove myself from certain situations–not take it so personally. This sucks but it is also the fodder for great learning. As a cup half full individual I don’t believe I have ever fully appreciated the challenges of mental illness and depression. I now understand that mental health is even more fundamental than physical health. I am currently not suffering physically but my mental state is precarious. That is instructional and humbling both.

In two weeks I will have to decide if it is worth having yet another infusion. Today I would say no. Adamantly. As important as my lungs are, it is my brain and my mental state that actually commands this ship. And these high seas are not to my liking.

Crazy, crazy world

Tomorrow I shall drive to Dover NH for my second COVID-19 swab. Not because I am symptomatic but rather because I am now scheduled for an endoscopy on Monday and this is a requirement.

The endoscopy is indicated by the fact that my throat/esophagus is yet painful, almost five and 1/2 weeks out from my last infusion. Not the usual course of events. So the plan is to see if something else–perhaps a secondary infection–is responsible for my discomfort.

I am on board because part of being a participant in a phase I clinical trial is parsing out the safety profile/side effects of drug. Although I am the only person to (thus far) report mucositis effects of such sustained extant, it does not mean I am an anomaly. I might simply be the first.

This is the responsibility of being in a clinical trial that is often under appreciated. Phase I is not to test for efficacy but rather for safety. My primary responsibility is to not only take drug, but also to report back side effects.

It is empowering but also can cause one to doubt oneself. In phase I you are often the first (and sometimes only) person to report a particular side effect. However, I take this seriously. Like an astronaut, I am traveling to places uncharted and it is my obligation to note and record what I see and experience.

Duty noted.

The anxiety

It’s Tuesday. Although my mucositis is much improved I still have sores in my mouth and esophagus–almost five weeks after my last infusion.

I am scheduled for my fifth infusion on Thursday. However Dr. Lin called me this morning and it pushing it back another week–fortunately the trial allows for up to a four week delay.

Do I go for one more? Maybe even two? Wait until my next scan to decide?

Damn this is difficult.

My mood is so very improved and I suspect there is a direct relationship between positivity/motivation and feeling better. I am decidedly anxious that if I get another infusion, it will not only be my mouth that starts hurting again.

So I don’t know. My higher morale has also been correlative with a greater desire to survive. And the difficulty with clinical trials as they currently exist is that as a participant I am given very little latitude. Should I drop out there is no returning.

Chances are I’m going with infusion, simply because it places me in a position of greater options. But psychologically, this is a tough one.

I’m so very relieved that I have another week to think and hopefully heal.

Well damn.

I was certain this scan was going to show improvement. Yeah, based on my symptoms (no cough, only a teensy little wheeze) that I was responding.

Sigh. Dr. Lin called today after reviewing the scans and she feels that overall there may be some stability. But that there are some small spots that actually seem to be larger.

Not the news I wanted considering the side effects of treatment. My mucositis refuses to stand down even with the addition of morphine (not a mouthwash as I had originally thought, but an elixir). At the moment I have one very large sore under the right side of my tongue and four smaller ones on the left. Eating is a formidable challenge and I have lost about ten pounds since starting the trial. So we are going to delay infusion by a week.

Of course I asked about other options, given the lackluster response. We could return to the previous plan, lorlatinib plus a MEK inhibitor. That trial has yet to open but rumor has it it still will and soon.

So I guess DS-1062a might not be the drug for me. Again, damn.

In the meantime all I can do is keep trudging forward while trying to keep it all together. Physically, emotionally, spiritually.

This is tough–really tough.

Care as we know it…

…is changing in this rapidly evolving world of COVID-19.

Yesterday there was a twitter chat (amongst medical professionals) that posed the question whether late line chemo should, under the circumstances, be suspended. To my horror many of those chiming in were on board and amongst the comments (the first by the individual who made the original query) were these two gems: ‘…the resources will be needed elsewhere!‘ and’…tying up space and health care workers in chemo war that would be more useful in triage, ICU, ER, etc…’

For the sake of clarity, the post that got me going was this: ‘Oncology Twitter: uncomfortable question. Hospitals are suspending elective surgeries in prep for COVID. Should our field be suspending some chemo–late line, minimal evidence for benefit, etc? Or at least not starting new regimens?

The author is an MD, MPH in medical ethics and health policy.

My response:

Technically my official expiration date was twelve, not thirteen years ago but I was in a state as I posted my response. Livid, actually.

Have we come to this? Advanced cancer patients to the back of the bus/bottom of the food chain? Because my life is worth less than that of a previously healthy person?

Today I spoke to Dr. Lin, my other oncologist. On Thursday I am scheduled to go to MGH for pharmokinetics and a physical, but as these are nonessentials, that appointment would now be virtual. However, I am having a devil of a time with the mucositis. Jess wants me to come in on Thursday for some IV fluids–it is difficult to eat–and to pick up a hard copy scrip for a mouthwash with morphine in it. And we will definitely be going down in dose again.

I asked her if I needed to worry about the trial being scuttled and she responded that they are keeping a close eye on things. That is not yes or no but I understand that we are all making this up as we go along.

I also shared with her the gist of the conversation on twitter, telling her that such sentiment was a source of great anxiety in my community (as if we need more to worry about). She was incredibly sympathetic and supportive and after our conversation, sent me this message:

It was good to talk on the phone.  I just wanted to follow up on what you had shared with me earlier. You (our patients) are so important and special to us.  And so I am so sorry to hear of all of the anxiety and fear that this situation has been causing the community.  It is, of course, not surprising: This has – needless to say – been an incredibly challenging time, full of fast-paced change and uncertainties.  But one thing you can be certain of amidst these uncertainties, is that we will continue to be your physicians and advocates during this time.  We are doing this together, and we’ve got you.’

Which is exactly what I/we need to hear.

xo

Feeling…

Vulnerable. And not liking it one bit.

Kind of a perfect storm, this COVID-19 coming at the same time I’m getting infusions. Age 60, compromised lung and immune function, in treatment. Damn.

And I have been uncharacteristically depressed. Obviously some of it could be situational but I’ve been through many a storm and always managed to keep my head above water.

I’m super fatigued and those mouth sores are flaring up again, but hey, my breathing continues to improve. That alone should be cause for good cheer. So what gives?

I finally contacted Dr. Lin today to inquire if there was any possibility that mood dissonance could be a side effect of DS1062-a. Unlikely, as it is not known to impact cognition. However, she did have a thought. I have been pre-dosing with mega quantities of steroids. Maybe, just maybe, this black mood of mine is related to that roller coaster effect.

Next go around we will see if we can skip the mid infusion dose and after that, maybe back off on the steroids just prior to infusion as well.

I miss happy me. I need happy me to get through this challenging time.

Sadness, begone.

Two down

Infusion number two of DS-1062a went off yesterday with only a minor hitch. Due to the profusion of side effects post one (my hair starting falling out a few days ago as well) it was determined that going down in dose was probably a good choice. In addition, I took 40 mg of dexamethasone the evening before and morning of and 20 mg more just prior to infusion, plus 1080 MG of fexofenadine HCL. Infusion was slowed down to three hours and half way through I was given an infusion of Benadryl–50 mg.

My throat got a little bit sore but did not swell up and I had no rash. The only issue was the over the top restless leg/crawlies from the Benadryl–I thought it would drive me out of my mind. JesY Wittebort had sent me some nifty leg compressors to help with the restless leg, but they just moved the sensation up to my arms. Hopefully I will be able to forgo Benadryl entirely next time–I wonder if I am part of the population who experiences paradoxical excitation. Whatever it is, I don’t want to feel that way again.

However, given the lack of an infusion reaction the day was ruled a success. Now I am at home resting, both out of necessity and also out of avoidance. I was thinking of going to the movies tonight but Alice and I spoke by phone and she feels it prudent that I keep myself out of harm’s way (crowds) as much as possible over the coming weeks. Introversion is not my nature but I really do not want to be exposed to COVID-19, a potential devastation for someone with compromised lung and immune function. I have a tall stack of unread books and my sons are getting me hooked up with Netflix so that I have diversion. And Diane continues to reach out to make certain I don’t need anything–from the store or otherwise. So I am in good hands.

Spring, clearer breather, making of art—these are the things I am focusing on now. I did get to the studio the day prior to infusion and I made myself walk the five flights up rather than taking the freight elevator. Up, it’s only up from here.

xo