Tag Archives: mucositis

Managing

Manageable. Another word j’adore because it doesn’t over promise.

To say that something is manageable doesn’t presume that there is no challenge, but clearly states that something can be accomplished without great difficulty.

My side effects of treatment are currently highly manageable. Flipping unbelievable given the fact that not so long ago I was ready to call it quits.

Instructional, this. One of the inherent difficulties of cancer is that the cure (aspirational) is often worse than the disease. And to think that I might have stopped a treatment that is essentially keeping me stable due to mucositis and over the top depression–both of which are currently manageable.

Damn. It’s spooky, particularly given the fact that I am now two years into progression, and that two years was the ball park survival stat we initially arrived at.

Too much of successfully addressing cancer is right place, right time. Had I not gone in for a COVID-19 test and encountered a nurse who had worked with head and neck cancers, I likely would not have discovered the product that is keeping my mucous membranes almost sore free (2-amino-4-carbamoylbutanoic acid disaccharide complex). And had I not been so emphatic per my degree of depression, an additional (and highly effective) anti-depressant would not have been added to my regimen.

So yes, chance. But also–and this is the part we do have control over–relentless self advocacy.

It still sucks to be going through a pandemic while also battling a terminal illness. But it sucks way less than it did a couple of months ago, when I was ready to throw in the towel.

I am back to that magical place where I say to myself “I can do this”. And that, my friends, is the essence of hope.

Simply doable.

xo

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

This crazy life of mine

So I had to skip my dinner with friends Sunday night (shrimp! lobster! pear frangipane pie!) and my date on Monday as my GI tract had other ideas. Given that diarrhea (yes, that kind of trouble) is now an established symptom of COVID19, my oncologist asked that I get a third test.

This one was a trip—drive to an urgent care clinic in Lawrence on Monday (last time I went to New Hampshire), park in a special spot and call to say I was there. Within minutes a nurse in a hazmat suit came out and the swab was inserted in my nasal passages through the window of my car. A few hours later, I had results (negative).

Yesterday I drove an hour to Waltham for my lab work. I got there early as I had a half an hour meeting first. I also had a zoom conference at noon with some other advocates but I was spent—so apologies were made and a nap ensued instead. Goddess Susan fetched Kumo at 5 pm.

I was up at 4 am today (I like an alarm clock as much as I like a leaf blower) to make sure I was at least somewhat organized. I will need to leave for Boston around 6:30 am for my next infusion. I am hoping that having my blood work yesterday will speed up this process as I serve on a panel for precision medicine at 2 pm (zoom) and another meeting (zoom) at 3:45. With any luck I’ll make it home first but it is highly likely that I shall be convening from the hospital and maybe even my infusion chair. It shall add a touch of authenticity 🙂 .

Kumo has his teeth cleaned (under anesthesia) tomorrow and Susan will drop him off but I will pick him up later in the day. There will be some convalescing chez Linnea on Thursday and Friday.

I am prepared for the onset of mucositis again—but hoping that depression stays away. However, from the empiric standpoint, if my mood suddenly goes south I think it’s safe to say it is a side effect of DS-1062a.

So–onward.

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.

Just can’t stay away

Pretending to sleep selfie 🙂

So today I had the opportunity to visit the Termeer Center in its current incarnation.

My throat hurts so much I got in touch with Dr. Lin yesterday. Although it is almost certainly related to the mucositis, it is odd that I am still in so much discomfort even having skipped my last infusion. The expectation is that by now the mouth sores would have cleared up.

Not. And given that a sore throat can also be related to COVID-19, Dr. Lin thought it might make sense to come in for labs, hydration and a swab.

What a process. I was instructed to make a placard for my car and to park in some designated spaces in a garage that is separate from the Yawkey building. Upon my arrival I called the front desk of the Termeer and two nurses came down to get me. We did not go to the main lobby but rather took a side entrance. Another nurse handed me a surgical mask and hand sanitizer.

When we got to the seventh floor we first stopped in 7B for my bracelet. All the comfy chairs in the waiting room have been replaced with folding chairs that are socially distanced and numbered and there is a big plexiglass facade surrounding the desk.

The Termeer Center had undergone a similar makeover, with plexiglass barriers around the front desk and nurse’s station. Aside from that, the individual rooms looked familiar. However, anyone who entered mine put on a protective gown and face shield first.

After one failed attempt at inserting an IV, the vein whisperer was called in–he once placed IV’s in infants and he nailed my puny vien on the first try. Some waiting around and then a nurse practitioner examined my throat, confirming that I yet had active mucositis. Nonetheless I got tested for COVID-19. Two long swabs, one for each nostril. It was over quickly and not nearly as uncomfortable as some have made it out to be. I should have results by tomorrow morning.

Upon leaving, I was given a barcoded card for FREE parking. Who knew there was such a thing.

Hydrated, I came home to strip off my hospital tainted clothes, shower and a nap. And then I ordered some Aloe Vera Juice and an amino acid supplement called Healios–both suggestions from today’s team.

My expectation is that my COVID results shall be negative–my hope is that I am going to get some relief soon. So very glad that I did not have an infusion last Thursday and that there will not be one this week either–I need some time to heal. And think.

xo

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.

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