Monthly Archives: February 2020

What can be lived with and what cannot

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.


Gains and losses

I am currently dealing with a whole new set of treatment side effects. Fatigue, persistent nausea, mucositis, and weight loss.

Weight gain is a side effect of lorlatinib, and over the past few months my degree of activity had slowed down significantly. As a result, I was heavier than I ever have been aside from when I was pregnant. That extra heft around my belly is proving to be a good thing, as I dropped five pounds the first week of treatment with DS-1062a. Nice to know I have a little buffer.

Washing out of lorlatinib may be part of the reason I am so fatigued. However, there have been some good changes as well. The cadence of my speech has sped up noticeably–even Alice commented that I am talking faster now (adios John Wayne).

I had been on lorlatinib since May of 2014—likely longer than almost anyone else. Two years ago I began to experience what I referred to as long term side effects. Small blemishes would quickly become gaping holes which simply would not heal. Crusting is a known side effect of lorlatinib and that was the primary issue, as those crusts seemed to burrow into my epidermis. My oldest son, who I visited over Christmas, later shared with me that my skin looked like that of a drug addict–that it appeared I was rubbing my flesh away.

My nails were also an issue, particularly on my feet. Nine out of ten toenails became ingrown and even surgery would not make them straighten out.

Anyway, a week after my last dose of lorlatinib both my skin and my nails began to heal. I shall be left with some scars but my self esteem is improving as well–it’s no fun walking around with open wounds on your face.

Best of all is the impact on my cognition. Suddenly my thoughts are more dense. The best analogy would be thread count–I have gone from 200 to 500 in two weeks.

So life goes on, one set of side effects traded for another. However I am reveling in the joy of clear thinking, clear skin and the potential of an extended horizon.


Billing: research versus stand of care

I was billed for my recent biopsy but evidently that was in error and charges will be reversed. On Tuesday I sat down with my research coordinator and we went through the procedures one by one to break down what was billed to insurance, and what was covered by the sponsor.

So here goes. Considered standard of care (and therefore billable) are these items:


Skin exam

Blood work that is CBC (complete blood count) with DIFF or differential

Blood work that is comprehensive metabolic

CT scans that fall within SOC schedule (every twelve weeks)

And these are the procedures that are considered research only and which are expenses picked up by the sponsor of the trial:

Eye exams



Pharmacokinetics or PKs (all other labwork)


CT scans done more frequently than every twelve weeks

RECIST measurements

Tumor biopsy


And so it is not as bad as I imagined per expenses expected to be covered by me, the participant. However, the language in the consent form is exceedingly vague (Standard of care versus research) and I would urge anyone participating in a clinical trial to have it spelled out ahead of time.

I would also point out that my travel, lodging (back to back late evenings with early morning appointments the next day sometimes make this necessary), meals and parking are still picked up by me. This is no small potatoes in a trial that had me at the hospital four out of seven days last week. In addition, should I suffer a side effect related to trial, any subsequent treatment shall be billed to insurance: ‘The treating hospital will offer you the care needed to treat injuries directly resulting from taking part in this research. These treatments will be billed to your insurance company. You will be responsible for deductibles and co-payments. There are no plans to pay you or give you compensation for your injury.’

It is good to know that the biopsy was not correctly billed to me which would have been insult to injury. However I am still angry that I am required to effectively donate tissue from an exceedingly invasive procedure (not once, but twice–and they had asked for a voluntary third biopsy). Evidently a small core sample was obtained for MGH and it was sent to pathology confirming cancer cells were present (duh). However, there is not enough tissue to, say, make mouse models. Or to run genetic sequencing with tissue to spare should it be needed later. Both of those things would be helpful in a complicated case like mine–three known secondary acquired mutations conferring resistance. The sponsor got the bulk of the tissue–any effort to acquire more would have been considered risky to me.

In the consent form I signed it is acknowledged that performing a biopsy comes with associated risks including this little nugget “There is risk of regional spread of cancer cells when the needle is removed from your tumor. Although very rare, there is a risk of serious complications (such as pneumothorax)…and death.”

Yeah, death does sound serious. But so does regional spread of cancer cells. Essentially the sponsor is paying for a piece of me, not an optional piece, but a required piece. I am glad that there is not associated financial burden but the physical burden is still huge. And if someone is going to be harvesting my tissue, well then by all means they should share that bounty with me, so that I too can benefit from my sacrifice.

Bottom line, ask questions, lots of questions. Of course it is difficult to ask what you don’t know, and even though this is my fourth trial, I am still learning. I would also suggest that consent forms could be much better at spelling things out–as they stand now, there are just too many vagaries.

Ultimately, I want some of my tissue. And a net zero balance per my expenses related to participation. I do not feel this is too much to ask. In an ideal world I would also be compensated for my time.

Just as astronauts are. πŸ™‚


Getting it right about research

Medical Research (capital M, capital R) is often the star when cancer patients talk about their continuing survival.

I’ve sung the praises of research again and again. Without it, I’d be dead.

However, the part of the story that often gets glossed over is that medical research requires human subjects. And that particularly in phase I trials (designed to assess safety not efficacy), these human subjects are taking on quite a lot.

MTD, or maximum tolerable dose, is determined in phase I trials. You know how? Someone experiences side effects that are not tolerable. Tolerable is a word with a lot of latitude. As I begin my fourth phase I clinical trial, I can tell you that it takes both courage and an ability to navigate uncertainty and discomfort that frankly, many don’t possess.

Clinical trial participants are the unpaid labor force that moves experimental therapeutics to market. We take on enormous risk as well as additional expense. Our skin in the game is the real deal, from blood draws (thirty teaspoons at cycle one this time) and biopsies, we provide the necessary specimens. We agree to take drugs that no humans have taken before. In exchange, if we are lucky, our lives might be extended—maybe even long enough to enter yet another trial.

Because frankly, if trials are not a one and done, then they become a literal way of life. I have now spent a decade, or one sixth of my life, as a clinical trial participant. That’s a lot of heavy duty community service.

However, it wasn’t altruism but rather a desire to stay alive that led me to my participation. That in no way lessens the contribution though. Veterans of combat are honored for their service, not their motivations.

If we want to have clinical trial participants recognized as partners rather than merely participants, we need to change the way we talk about trials. Don’t just thank medical research, acknowledge as well the contribution of those individuals who ‘volunteer’ their time, tissue and finances. Recognize that medical research simply could not happen without these sacrifices.

Next time you express your gratitude to medical research, try saying this instead: “I would like to thank medical research and all those brave individuals who participated in the clinical trials that brought this drug to market.” It’s a mouthful. But frankly, it’s the least we can all do. Remind the world that without trial participants, research isn’t going any further than the lab. And I’m not just talking tissue, this is all about teamwork.

Honor that.

Piece of me

You’d think after all these years of clinical trial participation I would have this thing completely figured out. But no.

When I spoke to Alice yesterday I asked her if we would get some results from the lung biopsy on Monday. Post procedure it was explained to me that enough tissue had been successfully removed for the trial requirements, but that they weren’t able to get any extra. At the time (still groggy from the sedative) I wasn’t even sure what this meant.

If you recall, I had a biopsy on lorlatinib where there was an attempt to get extra tissue so that Alice could determine my mechanisms of resistance. Our sample came up empty and she asked the sponsor of the trial if they would be willing to share some of their (my) tissue with us. It cracked me up at the time (and infuriated me) that we had to even ask for my tissue. MY TISSUE. But I also didn’t understand how endemic this was.

Anyway, the answer to my question was that we were unlikely to get any results back from my biopsy (the first of two that are required). And this is when I finally understood that there is a big difference between a biopsy that is for research purposes and one that is for the clinical benefit of the patient.

What is the same is this. It is my tissue, my time, my insurance that is billed for the procedure. My risk, considered high with an intrathoracic procedure.

In other words, this (a biopsy) is something I am doing just for the good of science. Willingly, as I signed the protocol. However, it would not be difficult to argue that I feel coerced by both my imminent demise and the lack of potential treatment options.

For those of you who wonder how I can be grateful for the opportunity to participate in trials (beats the alternative) but also angry, well, here you have it.

Tell me what is fair about requiring me to undergo an invasive procedure, pay for it (billed to insurance), undertake extra risk and potential expense–I have often had a pneumothorax following a biospy, which meant a night in the big house), and to do so simply in a spirit of altruism.

Fucking A. If biopsies are required, then there should be some quid pro quo here. Results should be shared with me and better yet, there should be an emphasis on finding clinically relevant information. If this is not the height of bullshittery in clinical trials, I don’t know what is.

And as it turns out, ASCO agrees with me. Somewhat tepidly, but for their viewpoint on research biopsies, click here.


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.

I shall keep you posted πŸ™‚


Infusion confusion

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.

Gatekeeper to my veins

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.


And so it begins

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.

This morning a friend of Diane’s kindly picked me up at 5:30 am for the first day of the DS-1062a trial (‘DS1062aΒ is a trophoblast cell-surface antigen 2 (TROP2)-targeting antibody drug conjugate’).

Room without a view

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 πŸ˜‰ 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.


Washout: the reality

Getting into a clinical trial is multi step process. First you have to identify an appropriate trial, but I am fortunate to have an oncologist like Alice Shaw, who does that work for me.

After signing the consent form, the real pins and needles part starts, as I now must qualify for the trial.

I’m a match on paper for phase I of DS-1062 but before being formally accepted in the trial there are numerous hoops I must jump through.

On Tuesday of this past week I had an EKG, labs, CT scan of head, chest and abdomen, and an echocardiogram. All in one day. All billed to my insurance. My brother John and sister Bink were flying in from Colorado for a quick visit and they met me at the hospital. As I had another exam the following morning (eyes), we decided to spend the night in Boston. Peter joined us for dinner and one heck of a festive evening.

The following morning I woke up at exactly the time I was supposed to begin my eye exam. Oy vey, someone (me) thought they were setting their alarm but did not. I made some quick phone calls, hopped in the shower, and ubered over. Crisis averted.

However I got a call from one of the research nurses as I was getting ready–my liver enzymes were still slightly elevated and unless they came down, I would not qualify for the trial.

Damn. I was advised to hydrate heavily and more labs were scheduled for this morning. Unfortunately, I am still above normal (likely as a side effect of the pemetrexed) and so on Monday morning I need to get to the hospital at 7 am for IV fluids. Labs will then be drawn again and if my ALT and AST are within range, I will go ahead with the lung biopsy and have my first infusion for the trial on Tuesday. If not, everything will be pushed back a week.

In the meantime I am washing out of lorlatinib. Lots going on chemically in my body right now.

The trial requires a lot of premedication–for nausea, mouth sores and dry eyes. Yesterday I went to pick up my scrips but initially left without them.

As of January one I no longer have a steady source of income as my alimony has ended. This means I qualify for Mass Health, which is a good thing as medical bills have been a huge financial burden. When I went through the drive through at the pharmacy, I was told I needed to come inside to update my insurance information. I did, and then had to stand in yet another line to pick up my meds. However, the cashier told me that it indicated that my scrips needed to be billed to something called Argus before they could go through Mass Health. If I wanted them then I would need to pay cash (five different scrips). I calmly explained to her that I could not afford to do that and that if I didn’t have my prep medications, I couldn’t start the trial on Tuesday. She told me there was nothing she could do and that I would need to call Mass Health.

My brother and sister were waiting outside in the car and I was in tears when I joined them. We drove to the grocery store and while they shopped I waited on hold for customer service at Mass Health. When I finally got through I was told I needed to go back to the pharmacy for a list of my meds and that if I called back in the morning, an investigation into why Mass Health wasn’t showing up as my primary carrier would open. An investigation that could take days.

Now I was really crying. We drove back to the pharmacy, my siblings went inside to get the list but they wouldn’t give it to them. My brother said ‘She’s crying in the car, do you want to go talk to her?’ I was so humiliated by this point but I went back in with my ID. And then we had to stand in another line, and my sister paid cash for my drugs. There is very little humanity in this process at times.

I dropped John and Bink off at the airport this morning. I have spent most of the day close to tears, between the financial stress and anxiety as to whether or not I will qualify for the trial.

This girl is freaking tough but yesterday was the straw that almost broke the camel’s back. I get so tired of complications. Having a limited income sucks. Having terminal cancer sucks. Having some support and assistance—my siblings—was phenomenal. My friend Diane is now across the street and will drive me to my biopsy on Monday. Melinda has leapt into action trying to straighten out the Mass Health mess.

I’m chugging water and willing my liver enzymes down, while wistfully thinking about warm beaches and cold drinks garnished with paper umbrellas.

Dream on.


I think it is important to put this out there. I am not afraid.

Nope. When I say death is my familiar it is not merely a throwaway statement. Seriously. Death has been my persistent companion for so very long now that it has lost the ability to intimidate.

I have thought about death a lot. Not because I’m morbid but rather because I am terminal. And I have come to the conclusion that it is nothing to be feared.

Not long ago I spent several hours with a close friend who was on their deathbed. And she was afraid, very afraid. This had to do in part with the fact that she was way too fucking young to be confronting the end of it all, and there is no way she could have been prepared.

However, I did my best to comfort her. Dying is not easy, I said, but death is. And then I told my friend that in my work on death I had come to the conclusion that it is a big giant release—and—contrary to what we are often led to believe—an ecstatic experience. The French refer to orgasm as ‘la petit mort’ or the little death. This is not, I think, a coincidence.

Death is a kindness. A place beyond pain and suffering. It is a letting go into that beautiful scrum of all that has lived before.

Dying is difficult because it is a separation from all we have known. In this respect, I am no different than most. Given a choice, I am not ready to die. In fact, a consummate late bloomer, I feel like I’m just getting the hang of this particular lifetime and I would prefer to have some more time to hone my craft.

I still have a lot of work to do when it comes to getting my physical affairs in order. I’d like to spend more time with friends and family, see more of the world, make more art and more love too πŸ™‚

However, spiritually, I am ready. I have done the hard work around my own mortality. And because my love for life is truly unconditional, I am not married to outcomes. It’s all good, no matter how this ends.

Because it will end. For all of us. This, our life on earth. After that? Who knows. As an atheist, I like to think my energy will just get stirred back into the whole of the universe. You may have another vision–equally comforting.

But know this. I don’t think we need to be afraid. Our death is harder for those left behind–the people who grieve. And even then, I have learned that when someone I love dies, they continue to live on in my heart and my head. I just can’t call them up to go to lunch. But I sure as hell can go on loving them.

That’s the thing. Our flesh is not eternal, but love, as an intangible, can be.

Live now. But leave with love.