Checking in-- the tumor board met

[Karen_L]

I had PET and MRI scans on 1/3/22. (Plus 6 hours in the ER on 1/2, but that's another story.) There's a teeny lesion in my brain, a cluster of tiny nodules in my lung, and, of most significance, one of the spots that was treated seems to be waving hello on the PET. (The SUV is 12 compared to 20 before the start of treatment, so at least there's that.) 

The tumor board met on the 10th. Consensus:

1. Brain thing is too small to worry about yet-- it might be a met or maybe just a weeny stroke. Action: repeat the MRI in 4-6 weeks (YAY! My favorite.) If it's a met, they'll just gamma knife it. 
2. Cluster of nodules: it could be considered as being close to the big areas of inflammation and crap in my lung (radiologist says my lung is "messy"-- that's a medical term), and might be BIG inflammation trying to dissolve itself. Action: repeat scan in 4-6 weeks.
3. The previously treated spot: is it recurrence, some new cancer, a fungal infection...? Action: Bronchoscopy, biopsy if possible. Depending on what it is, if it's close enough that they could go back in and treat from the bronchi-- I had no idea they could do this-- they will. Super freeze it or some such thing. 

Emergency room adventures came as a result of leg swelling. Since I've had a pulmonary embolism, leg swelling is bad. The oncologist on call said that swelling in both legs at once on a blood thinner was strange and he had no idea what was going on,  but given my history, I should go to the ER-- and be prepared to hear they didn't know either. All we cared about was getting a scan to rule out clots, which we did. Everything was OK, thank goodness.

But there was some questionable stuff about the urinalysis. That matters because leg swelling can be tied to kidney disease. I talked about it with my oncologist, who ordered a more in-depth study. Those more detailed results came into MyChart and I was not happy. Saw my primary care doc yesterday, who repeated the urinalysis, which came back weird, so she's getting it cultured and I may see a urologist next. My hunch: all the contrast from the studies has made my kidneys very unhappy. We shall see.

Somewhere in there was an echocardiogram because I asked about my increased pulse rate. The ER noted it was 30 BPM higher than my last ER visit (when I was hit by a car on my bike) so my oncologist sent me for the echo. She loves those tests. That came back normal. 

Thinking about my kjdneys just gives me something else to research instead of lung cancer.  🤣  Being faced with a little kidney thing makes the lung cancer feel familiar. Lung cancer's own territory-- the not-knowingness, the procedures, the medications, etc.-- almost feels comfortable.  What an irony!

My radiologist called the afternoon after the board met. The oncologist called the next day. Interesting, eh? The radiologist, I think, was the driving force behind the bronchoscopy first. Two of her superstar pulmonology colleagues were at the meeting and talked about how they might be able to use the bronchoscopy as a treatment vehicle. That makes sense to us-- I see Tagrisso in my future, but dealing with things directly first makes sense. Also, given that Tagrisso is one of the few (only?) direct treatments that targets both my mutations, and the possibility that sneaky lung cancer likes to develop resistances, I don't want to use it up yet. Does that make sense?

I'm totally fried. Not because I think what's going on is such a big deal compared to what others have gone or are going through, but the medical stuff has just been so constant.

The sun is out today here in the Pacific Northwest, so I'm looking forward to getting outside with it. And getting on with a bit of life. 

I'll check back in other other folks later. Hope y'all are doing OK. 

 

[Tom Galli]

Karen,

Talk about a mixed bag! There is a lot to unpack in your post. I think the lung cancer stuff is pretty straight forward. Agree completely with your 3-point consensus.

Kidney problems? I wouldn't know. I guess contrast can mess up the kidneys. I've not had the problem but know others in treatment that suddenly developed kidney problems. I think certain chemo formulations also cause kidney problems. So I think there is nephrologist in your future and it is likely a good idea to arrange a consultation.

I am in favor of direct approaches. Anytime you can get a "sure kill" against a lung cancer nodule, I think one should embrace the sure kill. I hope your pulmonology team figures that out. As for starting Tagrisso, I don't have an opinion. I think your medical oncologist has the key vote on that question.

As a Washington State resident for a number of years, I know how wonderful sun is in the bane of misty winter. Enjoy!

Stay the course.

To

[Susan Cornett]

Hi Karen - 

As Tom said, that is a lot to unpack! I had some issues with contrast after one scan but whatever it was resolved itself.  Hopefully that's something than can be addressed quickly without much fuss. Sometimes I think that the tests and treatments are harder than the cancer - but I know that's not the case. Just feels like it.

Keep us posted on next steps. Definitely enjoy January sun in PNW.