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.
…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.
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.’
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.
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.
The last few days have been tough. I’ve now got ulcers all throughout my mouth and down my esophagus. My sinuses and ear canals hurt as well and it is my guess that anywhere I have a mucous membrane has been affected.
This has impacted both my appetite and my ability to eat. Basically I am getting down whatever I am able to and a case of powdered ensure arrived on my doorstep yesterday.
I had been told that hair loss was a possibility and three days ago it started coming out in handfuls. I’m rocking the plucked chicken look now and my follicles are all hyper sensitive. This afternoon Diane is taking me to a friend of hers for a buzz cut—somehow more dignified than heading to Super Cuts.
My usual joie de vivre and can do spirit has taken a (temporary) hit as well. I’ve spent a lot of time on the couch doing nothing, just literally riding this wave until it’s over; the wave being depression.
Even warriors have their down days–this shit gets old. On Thursday I will have my second infusion and have to hope that by pre-dosing with steroids and Benadryl we are able to avoid an infusion reaction. My team will be on high alert with epipens at the ready.
In the meantime I am trying both to be gentle with myself but also to push forward. Nobody said this would be easy. I just didn’t think it would be this hard.
But…(because I do like to end on a positive note) my breathing really is better. That is a wonderful thing and (if I believe my own pep talks) worth wading through. I can do this.
I’m not gonna lie. Mucositis might be the most unpleasant side effect I have dealt with yet. Currently I have an ulcer on the side of my tongue, on both inner cheeks, and covering the back of my throat and trailing down my esophagus. Excess mucous that causes me to gag and choke is part of this not so pretty picture.
Sucks and certainly has a negative impact on quality of life. However, and this is a big however, my breathing has improved. Markedly.
I can’t live if I can’t breathe. These side effects blow but there aren’t going to kill me.
So there you go. The things we do to stay alive. And I have already noted that I am willing to do just about anything to stay at this party.
Even the stuff that’s hard to swallow. Pun intended.
I had a chance to speak to Alice today about my reaction on Tuesday and one of my questions was how common IR’s or infusions reactions, are. Not rare, but in the single digits as far as percentage.
So far I’m not doing a very good job of being unremarkable.
The good news is that we have the go ahead to try again. Plan of action is to stick with the pre-dosing of Allegra and steroids, but to also dose again just as we are beginning infusion. And to infuse at 1/2 the rate with Bendadryl administered intravenously simultaneously.
I’m going to be coming and going and am definitely not looking forward to a repeat of the Benadryl crawlies. My friend Gina sent me a weighted blanket and I will bring that with me on the day of infusion to see if it makes a positive difference.
In the meantime I’m feeling OK. Profoundly tired yesterday but I have to wonder if some of that was just coming off all the steroids. My fatigue is more low key today.
Onward. I hope this shit works. Particularly as this is mutation agnostic, and therefore potentially a viable treatment option for a large number of people.
So oh boy. Infusion began around 12:40 pm with little drama. However, just about an hour in, my throat began to suddenly hurt. I was looking for the call button but my nurse was peeping through the glass doors. When she came in I explained that not only was my throat painful, it felt as if it was swelling shut.
She immediately turned off the infusion and then things got a little bit more exciting. My neck and back developed a rash and hives and the strange feeling in my throat moved to my palate. It was getting harder to breathe and an oxygen mask was put on and I was given intravenous benadryl as well as more steroids. Lots of people in the room assessing the situation as this was a classic infusion reaction/hypersensitivity–despite pre-dosing with antihistamine and steroids.
Damn. I was hoping I could will myself to not react. But no. Saline was administered next and a repeat of steroids as my throat wasn’t feeling any better and I was starting to cough as well. And then restless leg syndrome kicked in crazy bad as a result of the Benadryl.
An hour passed before the symptoms of hypersensitivity subsided (but not the restless legs) and we gave it another go at a titrated speed. Forty five minutes later, my throat was suddenly very painful and swallowing difficult. The back of my neck started to itch and rash out as well and so the infusion was stopped. I was given more steroids and an executive decision was made not to finish dosing.
We clearly have a complication going forward. I really don’t want to drop down on dose if I don’t have to. Dr. Lin is going to have a discussion with the trial team and sponsor to see if they can come up with some strategies to get me through an infusion.
So here I am four more EKGs (I was mistaken as to how many were required today) and a whole lot of blood draws later. One more EKG at 7:30 and two more vials of blood and then I am released. Long, long, slightly disappointing day.
Hopefully my cancer is currently as uncomfortable as I am.
Milk thistle and dandelion tea plus a hella lot of water and I got those enzymes down more than forty points. So my biopsy was a go yesterday.
Happy to report that it all went smoothly and to my delight (the perks of a progressing cancer) the surgeon was able to go in from the side of my chest rather than straight through my left boob (no fun). This meant that A. I could watch the biopsy on a screen–not everyone’s cup of tea but I thought it was wicked cool–and B. my time in recovery was spent on my side rather than flat on my stomach; so much more comfortable.
It was a long, long day and big credit to my friend Diane who ferried me to and from. I am so very grateful for my incredible cadre of friends.
I have now been at the Termeer Center for Targeted Therapies for almost five hours. In that time I have been weighed, had two vials of blood drawn, and the first of three EKG’s taken. I have also peed twice, napped, and met with Dr. Lin, my new oncologist now that I am on trial. Drug was finally released an hour ago but it is frozen and takes three hours to defrost, so infusion will not begin until one. Lots of hurry up and wait.
Last night I was pre-dosed with five 4 mg tabs of dexamethasone as well 360 mg of fexofenadine, both of which will be repeated just prior to infusion. There have been lots of reactions to this experimental therapeutic but fortunately I am entering trial after MTD has been established and they are getting a better handle on how to handle side effects. Also anticipated are some pretty gnarly sounding mouth sores (dime size, painful plaques) which could put a crimp in my dating schedule 😉 I am to prophylactically swish with a steroid mouthwash and have a paste for when they emerge. I have been advised that I shall likely lose weight (those sores) and may lose my hair as well. And there have been some eye issues, so I have been using lubricating drops. Aside from that, fatigue and mild nausea. There is always a price to pay.
On a positive note, some of the side effects of lorlatinib have noticeably receded. My skin—a mess of crusty sores as of late, has begun to clear up and heal (hallelujah). I had to go off of statins because of my elevated liver enzymes and my cholesterol was through the roof last time (high 300’s) but hopefully that shall start to come down as well. The cadence of my speech is speeding up (‘So you’re not going to sound like John Wayne anymore?’ asked one of my friends) and I am already feeling more like me: Linnea pre lorlatinib. Less rage-y, more clearheaded. I like it.
So consider this installment one. More to come post infusion.
A long, long day. But in the parlance of my kind (the terminally ill), a long day beats a short day all to heck.
First, my life is blessed with a plethora of goddesses. Childhood friends, my daughter, sisters, my many new friends, nurses, phlebotomists, counselors, medical doctors. Men are great and I love a heap of them as well but this group of women has been my consistent go to for the tough stuff.
One goddess was in tow yesterday, my friend Sally: pals since the fifth grade. I am beginning to realize how beneficial it is to have company at these visits, after years and years of going it alone.
I had an appointment with the goddess who takes care of me from the neck up (as I like to say), Mary Susan Convery, my thoracic social worker. She keeps my head on straight.
A quick trip down Charles St for a hug from my daughter (Sally is her actual godmother) and a delicious lamb sandwich at Tatte. And then a long wait in those spaces appropriately called waiting rooms.
Oh, the irony. Those of us to whom time is so precious spend far too much of it waiting.
Anyway, the action got started around four with a visit from the head goddess, Alice. Chit chat about how I am feeling (great for the moment, on that artificial steroid high, my dyspnea temporarily under control.) But I was eager to cut to the chase—how about those scans? She had read them herself and her assessment was that they were mildly worse than the ones in December. Now remember this is while getting chemo so bummer. Of concern is the lymphangitic spread as well as the fact that the slight amount of fluid in the bottom of my left upper lobe is also increasing.
Alice puts more store in symptoms though and mine are not encouraging. Definite downward trend. So we agreed that I’d go ahead and get chemo one more time (and possibly two, depending on timing and tolerance) in the hope that it is at least slowing down progression.
There was a bright spot though and that was in the form of options. I figured we were down to one–lorlatinib plus a mek inhibitor. But Alice described yet another possibility. That after all these years on TKI-s it might be good to take a break. Maybe let my cancer forget some of what it has learned. To try a novel therapeutic, one my cancer is completely naive to.
While getting infused I signed the consent forms for a phase I clinical trial for a drug called DS-1062a; an antibody drug conjugate which targets a protein called trophoblast cell-surface antigen2 (TROP2), which is found in copious quantities on the surface of cancer cells.
This sounds exciting to me–a fresh possibility. But it is going to be intense. First there are the necessary hoops to jump through in order to qualify, including a lung biopsy, heart scan, ECHO, and eye exam. And all that blood, blood, blood (30 teaspoons for the first three cycles).
Every three week infusions but the first week, at least two additional visits. And then for the subsequent nine weeks, I return to the hospital once a week, with a second lung biopsy at week two. It is going to be consuming–that is, assuming I qualify.
But it also has given me fresh hope (I love the luxury of choices).
Good thing. Chemo may not be kicking cancer’s ass, but it is kicking mine. My liver is a tad inflamed–Alice asked me if alcohol might be involved. Truth? Yes. Goodbye to that for the time being. Sally filled me with healthy fluids last night and this morning she made me oatmeal, hot lemon water, and a vegetable chicken soup. I am in good and loving hands.
So yes. Stability or response would have been the preferred report but this feels if not a door, at least a window. And that’s what I need. Fresh air and a bit of a vista to contemplate.