Tag Archives: DS-1062a


I am a champion withstander. Without a doubt, my lung cancer was already established almost 20 years ago when I first became symptomatic. It would take almost four more years to receive a diagnosis.

Within two weeks, I’d had a lower left lobectomy, followed by four rounds of cisplatin and taxotere. I was a hale and hearty 45, but I was knocked on my butt.

Since then, my treatment regimen has been tarceva (before we knew I was ALK+), crizotinib, ceritinib, carboplatin and pemetrexed, more crizotinib, lorlatinib, lorlatinib plus carbolplatin and pemetrexed, and my current trial, DS-1062 a.

There have been some good years–with crizotinib and lorlatinib allowing me to live almost normally–and some tough ones. I’m coming off a tough one now.

Day four post infusion and I still feel as if a big wave dashed me to the bottom of the ocean floor. It is a physical sensation but also emotional. However, in the little chats I’ve been having with myself, I continue to reaffirm that this shall pass.

I now have at least a month in which to recover and to become stronger. Of course, my cancer will have a similar agenda. That’s the tricky part.

However, in the absence of chemotherapy coursing through my veins, I plan to do my darnedest to boost me, myself and I. I for immune, I for eyes on the prize, I for I shall not only withstand, I shall prevail.

In the meantime, if any of you have any recipes for immune boosting meals and/or magic elixirs, please do share. And come January, I’m going to try to kick this cancer to the curb.

And the goddess concurs

Alice called me today and we went over my scan report as well as my visit with Jessica Lin yesterday.

She is on board with a repeat scan in five weeks and then, almost certainly, a switch in treatment. Binimetinib plus lorlatinib is finishing up phase I so I would be entering at either phase IB or II. Most importantly, it will not preclude me from entrance into the SHP2 plus lorlatinib trial when that begins enrolling.

Her final assessment is that DS-1062a likely slowed down the pace of my cancer. However, given both the difficult side effects and the modest response, she agreed that it makes sense to give something else a go.

Not gonna lie, it’s always a bit scary moving from one treatment to another. And even though I am more than ready, progression is never a good thing.

Today I am totally wiped out but have also been wrapping my head around what is next. Back into the unknown. However, from this moment forward, I am focusing on recovering from yesterday’s infusion. Which is a postive.

Kumo is with his goddess, Susan. She spoiled him with long walks and a roasted turkey breast for dinner. I have been in my pajamas all day long–a rare but much appreciated luxury. My friend Diane came by briefly after her own scans the day before yesterday, and she dropped off a salmon filet which I finished this evening.

Thank the universe for good friends, stellar oncologists, and options.


Game plan

My sense of where I am at and my scans are in agreement. And although I can continue to entertain the notion of free choice, Dr. Lin said today we were coming to that place where a switch in treatment is likely indicated.

First, the radiology report:


Lungs and Airways: There has been a prior LEFT lower lobectomy. Again noted are multiple peripheral nodules in the LEFT upper lobe the largest of which measures 1.5 x 1.3 cm on image 157 series, 4 unchanged from 9/15/2020, but increased from 8/3/2020 when it measured 1 cm. Other LEFT upper lobe nodules are stable in size and number. There is some persistent patchy enhancing 3 x 5.1 cm masslike opacification in the LEFT upper lobe image 245 series 4 that is also stable compared to the prior exam but slightly larger compared to 8/3/2020 when it measured 1.7 x 4.8 cm. While this may represent increased atelectasis, progression in consolidative tumor also possible.

There are multiple stable peripheral nodules in the RIGHT upper lobe and along the minor fissure. The nodule along the minor fissure measures 8 mm image 160 series 4. No right-sided new nodules are noted. No new nodules are noted. Airways are patent.

Pleura: There is a persistent loculated pleural effusion with increased loculation superiorly and posteriorly.

Of greatest concern is the (currently stable) spread to my right lung, the increased loculation of the pleural effusion, either greater consolidation of my largest (3 x 5.1 cm) mass or increased atelectasis, and the fact that one of the nodules in my upper left lobe has increased in size to 1.5 x1.3 cm from 1 cm when I was scanned on 8/3/20. Not rapid growth but also not slow.

The plan is to infuse DS-1062a one more time today. Scan in five weeks and revisit a decision then. The assumption is that I would start on a trial of binimetinib (a MEK inhibitor) and lorlatinib (ClinicalTrials.gov NCT04292119), but once the SHP2 plus lorlatinib trial becomes available, make a switch. Tell you what, I’m going to get a belt dedicated to trial participation, and start making notches on it.

So there you have it. No angst about throwing away a realistic option as my continuing progression concurs with my personal assessment. I asked about the side effect profiles of both binimetinib and SHP2 and am encouraged. First, they are oral medications (no more chemo!) and, as petty and paltry as this might sound, there is no hair loss. Goodbye buzz cut, hello curls, eyebrows, and eyelashes. Adios mouth sores. Hello my old friends diarrhea and constipation (manageable).

Of course, a new trial means more biopsies and initially more frequent visits. I’m down with that too.

Looking forward to a fresh start. I’ve got places to go and people to do! Kidding. I mean yes, once upon a time. But pandemic et al, you do you and I’ll do me 😉

But once I start feeling better (a forgone conclusion) and I’ve got my blond locks back, I’ll be back in the game.


The psych you out psychology of continuous chemo

Also known as a mind fuck.

The first time I had chemo was a little over fifteen years ago. Cisplatin and taxoetere. Four rounds, each more brutal than the the previous one. After number four, I was coughing up blood that looked like coffee grounds.

However, knowing that there were four and only four infusions provided me with a goal. Yeah, it sucked but I could reference an endpoint.

Later, I would go on a maintenance dose of pemetrexed and carboplatin and at the end of last year, I revisited that doublet with lorlatinib added into the mix.

On February 11 of 2020 I had my first dose of DS-1062a–a trophoblast cell-surface antigen 2 (TROP2)-targeting antibody drug conjugate. Quite the mouthful, but essentially, another version of chemo. And it’s been kicking my ass ever since.

More sublimely nasty than cisplatin and taxotere, but for my money, more difficult to tolerate than pemetrexed and carboplatin. At least with that combo I would feel pretty damn good again by week three.

This drug has been hard. Fatigue, mucositis, and eyes that always water. The hair on my head is scant and I’ve got no eyelashes whatsoever and only the faintest semblance of eyebrows. Last week I went to the dentist for the first time since the pandemic started and learned that I have a cavity under my crown and three more teeth that they are watching–I can add dental caries to my side effect list.

I feel suboptimal and, to my ongoing displeasure, look sick as well. As open as I am about my cancer I have very much enjoyed passing for healthy. And, for the moment, those days are gone.

Yesterday I had a scan, an echo this morning, and infusion on Thursday. Along with scan review I want to have discussion per risk benefit analysis with my oncologist(s) per ongoing infusions. Of course, if I have any significant progression, my hand may be forced. But if not, a decision must be made.

Do I continue a difficult treatment that has afforded a modicum of benefit? In my world should I even pose that question?

Well, yes. I am not obligated to undergo treatment. Which is not the same as saying I am giving up. Rather that the idea of a break sounds mighty appealing right now. After all, I have spent most of the past fifteen and one half years in treatment. And although I am mighty grateful that I have had continuing options, it is a lifestyle that does not always feel sustainable.

I’ll get back to you after my consult on Thursday.


One two

I had my infusion yesterday. Because the monoclonal antibody inhibitor must come frozen, it is always a ridiculously long day. Blood draw (never less than two pokes, sigh), wait for labs, thaw. And finally a titrated three hour infusion to mitigate reaction. Nine hours in the hospital, all told. I also got a flu shot yesterday, and by midnight yesterday I felt as if I had been sucker punched.

Today I moved from bed to couch to bed and back. The surreal thing is that 48 hours ago I spent five hours in my studio painting.

Although I am highly optimistic that I can get back there tomorrow, I may be dreaming. This part of cancer really sucks. The cycle of malaise that is treatment related.

I’ve got at least one more cycle to go but then I am going to pose a question, what is the likely worse case scenario if I were to take a break?

Psychologically it wears one down. I also had to sign a new protocol yesterday, as new side effects of DS-1062a have been added. As a reminder that Phase I trials are potentially no walk in the park, here is the list of adverse events which have been identified in at least 10% of subjects:



Alopecia (hair loss)

Mucosal inflammation (inflammation of the lining of the mouth/digestive tract)

Infusion related-reactions, a response that may occur after the infusion of study drug. Symptoms may include fever, chills, nausea, vomiting, headache, cough, shortness of breath, severe reductions in blood pressure, dizziness and/or rash, usually of mild to moderate severity. You may show shortness of breath and severe reductions in blood pressure

Anemia, a low number of red blood cells that can cause tiredness and shortness of breath


Decreased appetite

Stomatitis (inflammation of lining of the mouth)



The following serious side effect has been reported with the use of DS-1062a: Lung problem (interstitial lung disease), which can be life-threatening. Signs of lung problems may include trouble breathing, cough, tiredness, fever and fluid in the lungs

Based on the experience in people who received the individual components of DS-1062a and other products of the same class of this drug, several of the following have been observed:


Nausea and Vomiting

Stomatitis/mucosal inflammation

Ileus (blockage in the bowels) and intestinal perforation

Infection of the large intestine with a drop in your white blood cell count (Neutropenic colitis and Neutropenic sepsis)

Disseminate intravascular coagulopathy (DIC) or a condition in which blood clots form throughout the body’s small blood vessels

A decrease in neutrophil counts

Decrease in platelet count

A decrease of red blood cells or or hemoglobin in the blood

Inflammation of the lung

Elevation of live enzymes

Decrease in renal (kidney) function as manifested by an increase in your creatinine levels

Hypersensitivity or severe allergic reactions, which can be life threatening

Chest pain, difficult of breathing that may suggest a heart problem or blockage of oxygen supplied to your heart

Blood clots

Acute cholinergic syndrome that may be manifested by diarrhea, vomiting and sweating

In addition:

Eye problems (damage in the cornea) which may include dry eyes and keratitis

Skin problems: you may develop some skin pigmentation

Allergic Reactions/Hypersensitivity

Thus far I have experienced a variety of side effects from this exhaustive list. The mundane: diarrhea, alopecia, nausea and vomiting, fatigue. NOt on the list, a significant increase in peripheral neuropathy. At times the mucositis has been over the top, dry eyes are an irritating and ongoing sensation and I experienced infusion reactions and hypersensitivity right out of the gate, with two milder episodes since. Not the worst but also not the best side effect profile. And, it would all be easier if I was having an amazing response.

But I’m not. And so at some point I have to make the QOL call. This isn’t awful but it is, at times, unquestionably unpleasant. Of course it is easier to even consider stopping knowing that something else is coming down the pike. What can’t be known is either how tolerable or efficacious any next treatments shall prove to be. And/or actual time frames.

It’s all a bit dicey. And at times also exceedingly dull.

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.


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).


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.