Category Archives: Biopsy

Bits of me: an update

Posted on January 9, 2019 | 9 comments

I got a call from Alice (Dr. Shaw) last week with some news per my molecular testing. As luck would have it, I was trying out a new edible (delicious, weed flavored lollie) and was starting to feel the effects. I probably should have left my phone untouched but when Alice calls, you pick up.

So I did. And…I was pretty flipping stoned so trying to make sense of what she was telling me (while also doing my darnedest to maintain decorum) took a lot of effort. Going over the conversation in my mind the next day, I wasn’t quite sure I’d understood correctly and so I emailed her, fessing up as to my state of mind at that time and asking for clarification.

I didn’t hear back from her until Monday. In the meantime I had requested that she prescribe an antibiotic as my left lung has been really boggy and my energy level exceptionally low. Obviously it could be my cancer but I was hoping that my symptoms might represent a concurrent infection. So Alice called to discuss and this also provided that opportunity for clarification.

I heard what I thought I heard, which is basically this. Evidently my biopsy was contracted and paid for by the sponsor of my trial, which meant that they also ‘owned’ one of the core samples. Another went to MGH, another to research, another was used to attempt a mouse model of my cancer.

As my tumor is highly lepidic (lace like in its spread) it is difficult to biopsy. And, as it turned out, the samples that Alice had access to actually had no viable cancer cells for molecular testing. So she asked the sponsor if she could have some of me back and they–graciously–said yes.

The hope is that this last sample will hold the holy grail and will provide some information useful to guiding my next treatment option.

If it doesn’t, we might have to consider another biopsy. That is, unless my friend the mouse (sorry little guy, I had no idea) grows my tumor, in which case the mouse will be biopsied.

In the meantime we must rely on how I am feeling in combination with a scan two weeks hence in order to assess the speed at which my cancer seems to be progressing. Given the change in histology, there is the distinct possibility that it will now be more aggressive. I hoped there might be a silver lining here, as more aggressive cancers are typically more responsive to chemotherapy, but Alice did not feel that would be true in my case 😦 Always trying to look on the bright side, I am.

Oh–and at the end of our conversation on Monday Alice asked, on behalf of one of her other patients, about the steps required to apply for a medical marijuana card. Discussing this all later with my nurse practitioner (who found the entire episode highly amusing) I told her that given the fact I was able to help Alice, we could consider my personal research as community service. 😉

And, on another bright note, I am feeling significantly better–I believe the antibiotic was exactly what I needed.

xo

ps: check out this great Health Stories Project article about my friend and fierce fellow advocate Andrea Borondy Kitts. I get to play a small cameo 🙂

9 Comments

Posted in ALK+, progression, Biopsy

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Miss March

Posted on March 1, 2016 | 4 comments

IMG_2864

Don’t let the title fool you—mine was merely a supporting role.

The MGH Fund puts together an annual calendar, and I was asked to pose with a slide of my tumor (!) and March’s featured star, Dr. John Iafrate. John is a pathologist at MGH and also someone who knows me rather intimately–that is, on a cellular level. Those of you who are ALK+ are probably familiar with the Break Apart Fish Probe Kit–used to identify ALK+ cancers–well, that was developed in Dr. Iafrate’s lab. My continuing survival has been based on so much luck (a lot of it of the right place/right time variety). Had Dr. Iafrate not developed that diagnostic test when he did, well, I really would be history. As it was, my ALK+ status turned three to five months left to live into eleven and counting, come April (it was ten when we took this photo last year).

Pathologists are sort of the unsung heroes when it comes to the treatment of cancer despite the crucial role they play. When I was initially diagnosed with NSCLC in 2005, I wrote a thank you note to the pathologist. My general practitioner couldn’t see the forest for the trees, and had attributed more than two years of symptoms highly suggestive of lung cancer (cough, shortness of breath, clubbing of fingers, and even hemoptysis) to adult onset asthma. Even though my diagnosis was devastating I was also relieved to finally have a plausible explanation for my symptoms and that gratitude was directed toward the pathologist.

So anyway, here’s to Mr. March and pathologists everywhere. You know us better than we do, and we couldn’t make this journey without your guidance.

 

4 Comments

Posted in ALK mutations, Biopsy, Uncategorized

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As it turns out, not quite enough (of me)

Posted on October 14, 2013 | 40 comments

The word from the lab looking for the PD-1 protein in my biopsy is that there weren’t enough cells (cancerous or otherwise) for a thorough analysis. If it is determined that enough tissue was ‘banked’ after the biopsy, a sample will be resubmitted. Dr. Shaw is not particularly optimistic.

So, the plan for the moment is to watch and wait. We will rescan in November and as long as I don’t become significantly more symptomatic, my situation will be reassessed at that time. In lieu of a PD-1 antibody, I could potentially return to one of the ALK inhibitors which I previously benefitted from:  LDK378 or Crizotinib—although as the LDK is still in trial, I’m not sure how that would work. Chemo remains an option but given the slew of side effects, I would say it is the least attractive choice. What I’m really hoping is that I can hold out until the next ALK inhibitor comes to trial (rumored to be end of this year or beginning of next)—the timing could be just right for me.

In the meantime, my plate is plenty full. I’m looking for a place to live as well as a means of support. I realize that statement implies much and answers little; I’ve got a lot to process and when the time seems right, I will discuss this new chapter in my life.

40 Comments

Posted in ALK mutations, Biopsy, Clinical Trials, Relationships

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Piece of me

Posted on September 30, 2013 | 29 comments

Life can’t just be fun and games, and on Friday I had a needle core biopsy. Yes, my last CT scan showed some progression. Not a lot—characterized in the radiology report as “slight interval increase” but also not a little—“consolidation at the periphery of the remaining left lung has increased in size compared with 6/17/13, now measuring 4 × 1.9 cm in greatest axial dimension compared with 3 × 1.8 cm on 6/17/13.”

It was a great summer and my break from treatment was absolutely worth it. However, my lungs are getting a little noisy at night again and I’ve noticed more shortness of breath as well as a reduction in my level of energy. So…Dr. Shaw and I concluded that it was the right time to start looking into my next option. That may well be an anti-PD-1 human monoclonal antibody;  an experimental treatment which falls under the umbrella of immunotherapy. An explanation of PD-1 quoted from InforMEDical:  “The programmed death receptor 1 (PD1) and its ligands make up another physiologic immune checkpoint that is co-opted by some tumors leading to immune tolerance. Programmed death ligand 1 (PDL1) is expressed on several tumors, and can be induced by inflammation in the tumor microenvironment. On binding to PD1 on activated T cells, an inhibitory message is delivered to the T cell, resulting in T cell inactivation. Monoclonal antibodies to PD1 and PDL1 can block PD1 messaging, and allow T cells to proceed with a co-ordinated immune attack.”

Essentially, the hope is to kick-start or wake up a specific pathway of my own immune system. For a very accessible overview of PD-1/PDL-1, check out my friend Janet Daily-Freeman’s post on this subject. Janet is smart, funny, kind and a whiz at explaining and I highly recommend that you take a look at her wonderful blog; Gray Connections.

The experimental therapy which I am hoping to get a shot at is MK-3475  or lambrolizumab; this agent has shown impressive results in patients with advanced melanoma. However, before I can be admitted to the trial, a fresh biopsy was required. If PD-1 protein is isolated in my tumor sample, I’m a potential candidate.

So on Friday I had yet another needle core biopsy. The location of the greatest consolidation of my cancer remains problematic; against the pleura and adjacent to my heart. Last time the radiologist went in right through my left breast (!)—this time, the approach was from the side.

Prep involved fasting and although I was initially scheduled for early in the morning, my procedure was shoved back by several hours. The biopsy itself is a curious thing; you are given ‘twilight’ or light anesthesia so you remain awake but in a rather somnolent state (not prone to arguing). After my body was arranged on the table, I was strapped in and instructed to neither move, cough nor speak. I did none of the above and I’m pretty sure that when I was taken back to recovery, I was introduced as the best lung biopsy patient ever (I really though I heard that—may well have been a sweet dream induced by twilight!).

Then the hard part started, as you must lie on your stomach for three hours post-biopsy without moving or talking. Although it was a full house when I was wheeled into recovery, I was the last to leave. At one point two nurses started talking about cider donuts…it was torture. However, not being able to speak or even move a finger, I was unable to express my displeasure.

Room with a view

Room with a view

At hour one and three a portable x-ray machine was rolled in and the condition of my lungs checked. I developed a small pneumothorax and so earned myself a suite in the Swedish Hotel for the night—I mean Lunder Building. Not a bad place for a sleep-over.

Although the main objective of the biopsy was to attain tissue for the clinical trial, we had hoped that sufficient material would be recovered to start a cell line. Dr. Shaw called this morning with the news that once again, there were only enough cells to check for PD-1. Oh well–no cell line or mouse model this time. We also discussed a story on Yahoo News pertaining to Roche’s anti PD-1 antibody; specifically the fact that when the numbers were parsed, smokers showed a greater over-all response (26%) than non-smokers (10%). Although personally discouraging, in the bigger picture, it is great news. Smokers tend to have a more complicated mutation profile at diagnosis, and therefore have not responded as well as non-smokers to the inhibitors that target a specific mutation, and which have monopolized breakthrough status in the treatment of lung cancer in recent years.

I see Dr. Shaw in a week and at that time we should know whether or not my biopsy was positive for the PD-1 protein. If it is, I will likely go on trial and cross my fingers that I’m one of the 10% who respond. And if no PD-1 protein is found in my sample, well, that’s another discussion.

29 Comments

Posted in Biopsy, Clinical Trials

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The biopsy went down well

Posted on December 14, 2012 | 23 comments

The surgeon/radiologist was Dr. Gilman, the Associate Director of Thoracic Imaging and Intervention at MGH and someone already familiar with my lungs, having performed at least one (and possibly two) of my previous biopsies. He is kind, calm and possesses the sort of delicate and fine boned hands that seem entirely apt for the precise operations he performs.

Prior to the procedure, a needle core biopsy, Dr. Gilman explained that there were two feasible locations within my lung from which to extract a sample. One of them, which could be accessed through the side of my chest, posed a greater risk as it was uncomfortably near to my heart. The better choice was a region of consolidation that hugged my pleural lining. In order to maximize the area from which the sample(s) would be taken, it was necessary to approach vertically rather than horizontally. And that meant that the needle would have to first pass through my left breast.

An IV with twilight or a lightly sedating dose of anesthesia was started, with a bit of Xanax thrown in to stave off any possible nausea. My left side was propped up until I was lying at a vertiginous tilt, and I was securely strapped in place.

As they prepped the skin around my breast, I began to feel the effects of the sedation. Usually, I’m easy when it comes to anesthesia, however, I managed to hover on the edge of awareness for much of the procedure. I knew I was moving in and out of the CT scanner and also recall seeing the CT image displayed on a screen; the outline of my breast pierced by a long needle reaching into my lung. Surprisingly, I was also occasionally cognizant of pain, and even flinched once–not something you want to do when undergoing a needle biopsy. After that, I focused on holding still, and, perhaps because I was rather emotionally detached, found it easy to do.

At some point the nurse asked if I’d like additional Xanax–I believe I mumbled yes and then immediately nodded off. I stayed asleep until it was time to take me for the first post procedure x-ray. The next couple of hours were less comfortable, as I was now wide awake and needed to lie on my stomach without speaking. The orderly who brought me back from radiology had forgotten to hook up my call button and I really, really had to pee. David popped his head in and I whispered my urgent need. A bed pan was brought; a less than optimal solution under any circumstances. This one proved to be of inadequate volume, and a change of bedding was required. Oh, the indignity.

After one more chest x-ray around 3pm (checking for pneumo-thorax) I was given the all clear. Dr. Shaw had come around earlier to say the procedure had gone well, but as I couldn’t ask questions, I didn’t get a lot of information. However, Dr. Gilman stopped by before I checked out and explained that he had in fact been able to get numerous core samples–each a sliver of tissue but hopefully laden with cancer cells. He also said it hadn’t been easy as my breast tissue was exceptionally dense, something that I am well familiar with and that has posed a challenge at my yearly mammograms.

So home I went, groggy and sore of boob. Dr. Shaw called that evening and said that it appeared there would be enough tissue for gene sequencing and a mouse model as well—actual cells from my cancer would be implanted in live mice. Ethically, this causes me some pause. However, if a successful mouse model is established, potential therapies could be tested for efficacy before actually being administered to me, and that is hard to quarrel with.

Now, we await the results.

23 Comments

Posted in Biopsy

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And this is where the road forks: 12/12/12

Posted on December 11, 2012 | 34 comments

L1020594Tonight I will take my final dose of LDK378. At 7 am sharp tomorrow morning, I will report to radiology/surgery to get prepped for a needle core biopsy. I am hoping that it is uneventful (no pneumothorax), and successful: that sufficient cancerous tissue can be harvested and that the mechanism of my resistance will ultimately be determined. Also on the table–possible gene sequencing.

It’s been a good run; about fifteen months on LDK. I am exceedingly grateful for this deposit in my time bank, but I look forward to the possibility of ramping up my quality of life again. As it stands now, I will be starting chemo (carboplatin/alimta) next week, so it’s a given that I am going to feel worse before I possibly feel better. I’m taking the long view though…

My instructions for tonight include NPO after midnight. I know this means I should refrain from eating or drinking, but I decided to find out what the letters actually stand for:  Nil Per Os. That’s latin, but I’ll take a wild guess that it does in fact mean nothing by mouth (or NBM in english!).

Tomorrow’s date is 12/12/12. There will be more than the average number of weddings, induced labors (who doesn’t want a lucky baby) and lottery tickets purchased as well. I like to think it is an auspicious date. But it seems I almost blew it; my go-to-biopsy outfit was to be some black yoga pants. However, according to numerologist Swetta Jumaani in an article from the NY Daily News, “Black is a very inauspicious color,”……. “Something bad always happens.”

Out with the black, in with something colorful and not unlucky.

34 Comments

Posted in Biopsy, genetic testing, LDK 378

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