Tag Archives: stage IV lung cancer

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.

Little update

I had CT scans and an echocardiogram at MGH yesterday. This time everyone was wearing masks. I had brought an N95 with the little plastic respirator, and while I was in the waiting room (alone), a nurse came out and explained to me that although my mask would protect me, if I had coronavirus it would not protect the health care workers (air flow in and out). So she brought me out two surgical masks and asked me to put them on instead. However two made me a little panicky, as it was difficult to breathe, so I removed one of them.

Evidently I made it out of MGH just in time, as shortly after my departure five explosions rocked the street—not a dumpster fire (!) but rather manholes that were on fire. If it’s not one thing, it’s two. Or five.

Tomorrow I have another infusion scheduled. Unfortunately my mouth sores have not healed–a less than ideal scenario. However we will be going down in dose and unless the CT scan indicates otherwise, it is my sense that my cancer is responding to treatment. I would like to get the mucositis/mouth sores under control, but even if I can’t, I feel it is best to get a few more doses under my belt.

I’ll let you know what those scans say…

xo

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

With and without

It is easy to focus on what we need. Rather, what we think we need. It is the sort of mentality that leads people to clear the shelves of goods like toilet paper, now considered an essential. However, I assure you that for most of our time on earth, our species made do without the luxury of little quilted pieces of paper with which to wipe our ass.

I have had the benefit of being poor. Under the federal poverty level sort of poor. Food stamps and then welfare, while trying to raise two small children alone.

It sucked, but I also learned a lot. Including what we could do without.

I got into the vintage clothing business because I couldn’t afford to shop anywhere but thrift stores. Now when my kids look at photos of themselves from their youth, they think they look pretty damn hip in their second hand clothes.

After marrying for the second time I enjoyed a period of relative prosperity. Not gonna lie, it was nice–not having to worry about money all of the time. However, when I made the decision to leave the marriage, my economic situation changed once again. Not quite as dire but given my medical expenses, nonetheless challenging.

However several things have gotten me through. One, my amazing friends, who magically fill in the at times gaping gaps. Creativity and the ability to make a killer meal from rice, an onion, coconut milk and some peanut butter. And if finances allow, I add chicken plus some cilantro or basil. Maybe a few peanuts. Cheap, filling and delicious.

Most importantly, understanding what I can do without. Less really can be more.

Scaling back one’s needs is incredibly freeing. It reduces consumption and anxiety.

This is a tough time—for all of us. But if we stay calm and look out for each other, we are going to get through this in better shape than if we do not. Remember what is truly important. Love.

And unlike toilet paper, it’s not about how much you take but rather how much you give away.

xo

More of me

Mother Linnea…striking a pose

I had another biopsy on Wednesday. And y’all are going to be proud of how it went down..

When they wheeled me into the procedure room and introduced me to the operating surgeon, I gave her my spiel. How I’d been participating in clinical trials for more than ten years now but had only just learned that there is a significant difference between a biopsy for research and one for clinical assessment. I said that I considered an intrathoracic biopsy to be a big, big ask and that I believed it only fair that my tissue be shared with me. I understood the sponsor was paying for the biopsy, but that didn’t make it any better. I still felt like a cow being sent off for branding. And that there should be some implicit quid pro quo but as I had signed a contract I was now bound to donate a piece of me. I explained that some extra tissue for MGH labs might yield information that could be extremely helpful to my case, and that if at all possible, I wanted her to go for it. And lastly, that the language in the consent form was unnecessarily vague and that this endeavor was bullshit.

Well that surgeon listened to me. Better yet, she heard. This time, instead of one small plug, MGH got two.

The resistance starts here–with each and everyone of us. We don’t have to accept the status quo and this was a lesson in the importance of talking not just to the policy makers (sponsors) but to the doers—other members of the team. I mean, it’s difficult to ignore a bald lady in a johnnie when she’s sitting right in front of you talking about the plunder of her own tissue.

So, as I used to say to my children in certain situations that involved small victories–yea for our side. And what’s mine is once again–mine.

As it should be.

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.

Taking a breather from being brave

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 can. And I will.

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.

xo

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.

xo

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:

Physicals

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

Echocardiogram

EKG

Pharmacokinetics or PKs (all other labwork)

Urinalysis

CT scans done more frequently than every twelve weeks

RECIST measurements

Tumor biopsy

Drug

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. 🙂

xo