Tag Archives: CT scans

Scan skinny

Posted on March 31, 2020 | 6 comments

I had my scan a week ago and Dr. Lin called me the following day with her impression–Alice followed up on Saturday.

One of the most difficult aspects of being an oncologist is trying to keep both body and hope alive for patients. Jess (Dr. Lin) and Alice both felt the the subpleural opacity in my left upper lobe was possibly less dense than previous scans–‘more aerosolized’ is the way Alice put it. Maybe whatever the heck that is (never definitely labeled cancer) is partially resolving, and therefore accounting for the improvement in my breathing. It would be nice to think so.

I did not receive the official read of the scan until today and I must say, it is lackluster; said with all due euphemism.

Keeping body and soul together is getting to be more difficult for me as well. Neither of the last two treatments would appear to be a panacea. And social isolation is sapping me of my usual reserve of joy. These times were not made for extroverts.

Now my job is to just hold it all together in what sometimes feels like impossible circumstances—if I can avoid getting COVID-19 and keep this cancer from moving from a brush fire to burn the whole goddamn house down, well then I might be around when another treatment becomes available.

My general MO is to overcome and forge ahead—if you told me I had to walk 100 miles today I would be game to try. Laying low is an entirely different animal and I’m not gonna lie, one heck of a reach for me. But I am going to do my darnedest to hang in.

 TECHNIQUE: Diagnostic CT CHEST WITH CONTRAST COMPARISON: Chest CT dating back to 1/18/2019
FINDINGS:Lines/tubes: None. Lungs and Airways: Status post left lower lobectomy. The central airways are patent. There are new groundglass and tree-in-bud nodules in the anterior right upper lobe for example on images 49-51. There are also multiple enlarging subsolid nodules in the right upper lobe for example image 49 nodule measures up to 8 mm compared to 5 mm prior. Multiple nodules in the left upper lobe has also increased in size and attenuation compared to recent prior, for example spiculated nodule in the right upper lobe on image 53, measuring up to 10 mm compared to 9 mm prior, image 44 nodule now measuring 4 mm compared to 2 mm prior, and subpleural nodule on image 43 measuring up to 8 mm compared to 7 mm prior.  The dominant subpleural consolidative opacity along the lateral left upper lobe is essentially unchanged compared to recent prior now measuring 17 x 29 mm (image 64). The confluent consolidative opacity at the left lung base is without significant change in size compared to recent prior, measuring 77 x 20 mm (image 80). Pleura: Stable small loculated left pleural effusion with associated pleural and interlobular septal thickening. There is unchanged biapical pleural-parenchymal thickening/scarring, left greater than right. Heart and mediastinum: The thyroid gland is normal. Stable mediastinal and hilar lymph nodes measuring up to 6 mm in short axis, for example low pretracheal node on series 302 image 42 and AP node on image 46. The cardiac chambers are normal in size. There is no pericardial effusion.  Soft tissues: There is no significant subpectoral or axillary lymphadenopathy. Abdomen: Please see separate CT abdomen and pelvis report of same day.  Bones: There is moderate spinal degenerative changes. No suspicious lytic or blastic lesions. 
IMPRESSION: Lung cancer surveillance status post left lower lobectomy: Subpleural consolidative masslike opacity along the lateral left upper lobe is unchanged compared to most recent prior but remains suspicious for primary lung malignancy. Stable small loculated pleural effusion with interlobular septal thickening consistent with lymphangitic carcinomatosis. Enlarging pulmonary nodules bilaterally since at least 7/5/2019 suspicious for progression of metastatic disease. New groundglass and tree-in-bud nodules in the anterior right upper lobe may represent inflammatory or infectious process. Attention on follow up is advised.

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The down, the dirty, the skinny, the scat.

Posted on August 29, 2018 | 9 comments

Gadolinium: heavy on my mind

You have no idea what’s going on in my head. Really. And, nor do they–the authorities.

That’s an MRI of my brain, demonstrating gadolinium deposition secondary to injected contrast. It is the rather faint, white, symmetrical ‘stain’ (it is actually referred to as a brain stain). Rorschach like. It’s been there since at least December of 2016, when it first showed up in my radiology report: There is nonspecific intrinsic T1 hyperintensity involving the globus pallidus and dentate nuclei bilaterally likely secondary to gadolinium deposition of uncertain clinical significance.

I had been aware of the possibility of gadolinium retention for at least a year prior to this finding and because of my concerns, had once again become non-compliant—in this case, refusing contrast.

To be clear, I have more latitude here than someone with either active or a history of brain mets. I’ve never had mets to my brain, which is part of the reason I have pushed back on scans that were mandated by protocol but not clinically indicated. Part of the rub when one is a clinical trial participant rather than a patient.

The day I found out about the gadolinium I was pissed. Really, really pissed.

As a requirement of the trial we took a cognitive test at each visit and part of that test was to write a simple sentence. I had a monkey in the cage/rage moment; threw a little scat at the keeper, if you will. My sentence that day read ‘Fuck you (sponsor of the trial), I have heavy metal on my brain.’

The jury is still out as to whether or not there already have been or will be side effects associated with gadolinium retention. Although everyone can certainly agree that it’s probably better not to have gadolinium in one’s brain.

And before anyone panics, know that it is still extraordinarily uncommon (and no, I did not want to be the poster child for this one). I believe I am Dr. Shaw’s only patient to date with this finding. And in discussion with her about this issue, she is adamant that a CT scan of the brain without contrast is basically useless.

My frustration was with the fact that I didn’t need the bloody MRI’s in the first place and I have had–at MGH alone–42 of them. That, my friends, is why I no longer hesitate to be noncompliant.

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Posted in Clinical Trials

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Update

Posted on April 29, 2014 | 16 comments

I had my CT scan and appointment with Dr. Shaw yesterday. As anticipated, the news is not particularly good. The radiology report reads: ‘A mixed attenuation lesion in the left lower lung zone now measures 8.4 cm, previously 6.9 cm. There are also increased small ground glass nodules adjacent to the lesion. The central solid portion of the lesion now measures 6.2 cm, previously 4.4 cm. A mixed attenuation lesion in the anterior right upper lobe now measures 1.4 cm, previously 1.4 cm. Another right upper lobe lesion now measures 7 mm, previously 4 mm. Inferior right upper lobe mixed attenuation nodule measures 1.5 cm, previously 1.2 cm—Interval increase in size of dominant mixed attenuation lesion in the left lower lung zone and some of the right upper lobe nodules consistent with worsening lung cancer.‘

Still, were I not symptomatic, Dr. Shaw would consider leaving me on Xalkori for a little longer. However, upon examination she noted how very wheezy I am and we both agreed that it is time to try something else.

Two weeks ago I realized (with no small degree of horror) that I had gotten mixed up on my medication and had been taking my Xalkori only once a day. At most I made this mistake for two or possibly three weeks but I was absolutely mortified when I reported my discovery to Alice (Dr. Shaw). Hopefully it had no major impact upon my response, as my symptoms had never abated. However, it is a potent reminder that I have been terribly distracted. As Alice remarked, I have a lot on my plate.

I am to start the new trial on the 13th of May. We have a scheduled mediation for our impending divorce on the 16th and my first impulse was to push back the trial date. Last night I did a lot of soul searching and realized that I need to get my priorities straight (the mediation can wait if necessary).

In addition to my own worries, Pete is experiencing some challenges (kid can’t get up in the morning) and I’ve been back and forth to Exeter a number of times. Desperate times call for desperate measures, and I am setting my alarm for 7:20 every morning so that I can place a rise and shine call to my sleepy son. Yesterday I had to call repeatedly; today he picked up on the fourth ring.

I confess to feeling somewhat overwhelmed. However, my internal dialogue moves quickly from wallow to wonder; I am still here.

Live, love, life.

 

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Posted in ALK mutations

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Downs and ups

Posted on February 11, 2014 | 22 comments

I’m going to begin with another blanket apology. Not only have I been a poor communicator when it comes to blogging, I’ve also not been very consistent about returning personal emails, texts and phone messages. Somehow I lost my date book (in a snow drift somewhere, I betcha) and chances are excellent that if I’ve not done so already, I will miss some appointments.

This galls me because I don’t like being a no-show. In a world rife with promises and proposals, showing up is the only real currency, and I’m afraid I’ve fallen behind in my accounts.

There. Now I’ve at least acknowledged my shortcomings and offered an apology (perhaps preemptively in the case of upcoming appointments).

On the home front, I’ve been back in my apartment for a week and a half now. Servpro did a wonderful job and once again my landlords are to be commended for their quick attention to the mold situation. My eyes are no longer red each morning and my rash has disappeared as well. The only thing that has lingered is my cough, and that, unfortunately, is due to the progression of my cancer.

Yes, when progress is anything but. I saw Alice last week to review my latest scans. Compared to the previous CT scan (six weeks earlier) my cancer is picking up its pace. The largest area of tumor in my upper left lobe increased in size  from 4.0 cm x 1.9 cm to 4.2 cm x 2.5 cm. Noted on the radiology report (and quite obvious when viewing the earlier scan side by the side with the most recent one) is increased prominence of the ground glass opacity. And of course there are numerous little nodules in my right upper lobe as well.

The plan is to start back on Xalkori (crizotinib) asap. First, however, my insurance company has to approve the prescription. To that end I’ve received an automated phone call making certain I was me (social security number? mother’s maiden name?) but no other word and certainly no drug showing up in my mailbox. In the meantime, I’m continuing to enjoy grapefruit, which will soon be verboten.

How am I feeling? Overwhelmed. Sad and occasionally very frustrated. Tired and weaker; both of which I attribute to the progression of my cancer. Sore—I’ve screwed up my back something wicked. I was carrying my easel across the parking lot and slipped on some black ice and fell down hard. Unfortunately I think it was the last straw for my back. So, now I’m sporting a brace, sucking down advil and just hoping that time (and, finally, some respect!) will heal.

Of course, in addition to the trials and tribulations there is the wonder and not some small sense of pride at this fresh chapter. I’ve made fantastic new friends and gone to parties, potlucks and art openings galore. In a further sign of my commitment to the future (rsvp-ing, if you will), I have rented some additional studio space at the mill next door. It is where I shall paint but also set up shop—soon I hope to be offering for sale not only my photos and paintings, but a slew of vintage clothing.

Yes, in those months when I was getting chemo I was busy. Shopping. Hanging out at thrift stores and buying up a rather impressive array of clothes, shoes, hats, scarves, bags, ties and jewelry. In April the doors will open to The House of Redemption: Second Chance Clothing.

So you see, as I said to Alice, I’ve got plans. Big plans. And although cancer may mess with them a little, it’ll just be a temporary setback. All this stuff I’m hoping to do is a form of positive visualization; my rich fantasy life put to therapeutic use. And I am certain it can be realized. To wit: after my appointment with Alice last week I placed a phone call to a woman who was selling some inexpensive teak storage units on Craig’s List. I liked the sound of her voice and as I drove to her house I fantasized that she would be really great, we’d become fast friends, and she would invite me for dinner.

Well, when she opened her front door I was enveloped by the smell of curry. We began to chat about this and that. I agreed to purchase the shelving and went out to my car to get it ready for loading. When I came back inside, this very nice woman said that she had just spoken to her husband on the phone and if I waited twenty minutes, he would be able to assist me. And then she asked me if I would like to stay for dinner.

I laughed and told her that I was almost embarrassed as I had in fact imagined this particular scenario. I suppose some people might have been alarmed at this point, but as it turned out, we were two peas in a pod. Her husband came home, we (well, mostly he) loaded my purchases, and then the three of us sat down for a delicious meal. It was a magical experience and, I am certain, quite out of the ordinary for a Craig’s List transaction.

Moral of the story—go ahead and hope. You never know where your imagination may lead you.

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Posted in ALK mutations, Attitude, lung cancer, scans, Xalkori

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YES!

Posted on September 21, 2012 | 78 comments

This one’s a YES!

On Monday I went to Boston for my six week CT scan. My mom, Evalynn and stepfather, Jim were visiting from their home in Utah and they came along. After having my labs drawn, Dr. Shaw and Margeurite (all time favorite nurse) were kind enough to step into the waiting room for a brief introduction. It meant the world to my parents, and made the day a special one.

That evening Alice (Dr. Shaw) called after having viewed the CT scans along with two radiologists. The results were a bit astounding–there appeared to be no significant change. This news caught me  a bit off guard as I had been preparing myself for anything except stability. Now I had the option of staying on drug for six more weeks. It took a couple of seconds to adjust my mindset (cancer really teaches you to think on your feet) before deciding yes, this was the obvious choice. As we ended our conversation, Alice cautioned that she would receive confirmation once measurements were taken and the actual report was written.

Yesterday Alice called once again; my scans were really, truly, stable. So, here I am, on the edge, but holding. And I am fine, make that better than fine, with my current status. I’m on a journey, and this traveler plans to take her time. It’s going to be back roads, blue highways and the scenic route for me.

78 Comments

Posted in Coping, CT scans

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