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Hey Friends,

I can't recall where I left off, so here's a quick rundown: after treatment concluded late last year, I discovered an enlarged supraclavicular lymph node (late January). It was scanned, biopsied, and tested positive for NSCLC. They sent it for genetic testing, and two results included ALK+ and a TMB level Intermediate. The lymph node was surgically removed; however, something about the lymph node in the pathology report indicated cancer may still be present. The Tumor Board did not feel that radiation therapy would be of benefit at this time, and at the moment I'm taking Xalkori, which is a TKI approved for ALK+ NSCLC. 

Like the previous chemo, I meet with the oncologist twice per month to review side effects of Xalkori and check blood counts and liver health. He has bumped up my scans to full PET/CTs, and they will be every 3-4 months, instead of every 6 months. My PET is next Wed, and we meet next Fri to discuss results. I also meet with the Thoracic Surgeon the following Monday, as he's requested to be involved with scan reviews from here on out. 

The oncologist had referred me to a neurologist months ago, because my migraines had severely worsened post-cancer treatment and head MRIs indicated nothing was going on upstairs (heh). Stroke of luck, they called and bumped up my appointment by more than a month, and I was able to get in this week. I really like him and his staff. He has some new tricks to handle migraines I've not used before, and he'd already reviewed information about my NSCLC, such as my brain scans, which I really appreciated. He said the doctor who read them was really talented and my scans looked really good. He also said (I asked), that if the cancer does spread to my brain, he would not be the specific neurologist who treats me (it's not his specialty), but if I have any issues that worry me, I can call or come in and they can evaluate me and get me a scan ASAP. 

One last thing: people whose NSCLC is ALK+ are raving about certain oncologists who are also lead researchers in the ALK realm. One is Dr. Alice Shaw, in Mass. It looks like she does a lot of 2nd opinion work, and will review things in such a way where your home team is still the treating team, but she's more of an expert consultant, I guess? Anyway, I approached my oncologist and asked whether he would be interested in her input, if I can arrange a 2nd opinion. He said if we can swing the cost (we have Tri-Care Prime, so going to see how much, if any, they will pay), he'd be very interested in hearing input. 

That's what I have for now. Sorry for the long post!

<3

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Meloni,

You've certainly been busy but it sounds like you have a top-notch medical team.  I especially love the part about relief for your migraines.  I went through a period where I had them almost weekly and then they just stopped.  I know the pain and am sure you will welcome the relief.  That's the last thing you need with everything else going on.

All in all, your post sounds very positive and I like that your oncologist will be aggressive with the scans.  I've been on the 90 day protocol since I was diagnosed last year.  

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  • 2 months later...
  • 1 month later...

Hello Friends,

I had a head MRI last Wednesday, and Thursday evening the oncologist called to inform me there is a spot in my Thalamus that was not present on my Feb 2017 scan. A biopsy would be required to confirm, but they believe it likely represents metastasis of the lung cancer. 

I'm waiting (always the waiting game), for the neurosurgeon referral to be approved by insurance. My insurance has never given me troubles, I just hate the lag time between discovering new issues and getting those new issues treated.

My oncologist indicated the lesion is small (10 mm) and treatable. Just waiting to hear from the neurosurgeon so I know what to expect in terms of treatment, follow-up and monitoring. Want to know about side effects and risks, too, of course.  Apparently the thalamus is a pretty important little unit in the brain. 

Meloni 

 

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