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Scans, done, still NED


Rower Michelle

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Hi Gang, 

I had my scans on Thursday afternoon with the doc appointment on Friday morning.  I've got to say I was far more anxious going into this round for a couple of reasons.    My new PCP (who is like 12 years old) unintentially hit my panic button three weeks ago during my routine check up when she said she thought she heard a "pleural rub" when listening to my lungs.  Of course this hit the scanxiety meter charts until our Friday night Lungevity Zoomers assured me that a young PCP is not a reliable source.  I called the oncology clinic and my nurse and doc weren't worried but scanxiety as you guys know is powerful so it was lurking around in the back of my mind.  

Then I got the COVID Booster and flu shot on the same day, 14 hours later I felt like a freight train hit me.  This time around was much worse than the second covid shot which was no picnic.   About a week later I was sitting quietly when a dry involuntary cough came out of nowhere.  It stopped me in my tracks.   Over the next two weeks, I noticed had had no gas in the tank, my energy levels were just terrible. Once again it was the Lungevity Zoomers to the rescue, one of my Friday night friends was still dragging two weeks post vaccine. 

 I did the best I could to get ready for these scans.   I did what any sensible person would do.  I scheduled a hair appointment and pedi.  Now with our local covid rates very low, I went totally adventurous and booked a myofacial release message, my first one in 18 months. 

When I got home from the scan I stared at my phone, like a watching a pot of water boiling for the MyChart alert.   I was relieved to see the report was unremarkable from the July scans and very surprised to see that over time the radiology report was very brief.  It was the shortest report I've ever seen.    My labs however, tell a different story.  It does look like I was recovering from "something big".   In six weeks we're going to do an expanded lab panel to see if we can get to the bottom of this persistent fatigue. 

The actual visit with my oncologist had almost nothing to do with my scans... another oddity. We focused on my fatigue and what we can do.  I asked about a consult from palliative care too to see if they have any brilliant ideas.   I'm so lucky and grateful to continue on the same targeted therapy for 36 months.  We hope to keep going.   

In the meanwhile my oncologist suggested giving American Ginseng Root a try, evidently there are two evidenced based studies out of Mayo to help improve cancer related fatigue. 

As an aside, my oncologist "joked" with me about my "perfect cholesterol"- go out and celebrate with a big cheeseburger which might help the anemia too!  So at the the booster was good for something because I've never had a great cholesterol panel! 

Next set of scans in three months, at least I won't have to see the PCP for another year! 

Carry on, 

Michelle 

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Michelle,

That is wonderful news!  NED is such a great word to hear.   Vaccines can be tough on some people and you got two on one day.  Is your oncologist saying that Ginseng Root will help you with this fatigue?  Did he feel it was related to the treatment or the vaccines?  Either way I'm sure the root and a big, juicy burger will be helpful.  

Lou

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Congratulations, Michelle! It's great that others were able to talk you down off the ledge. 

Let us know how the ginseng works. I think some others in the EGFR forum are trying that for unrelenting fatigue. I think you getting the 2 shots together was more than your system could handle. Definitely don't combine the Shingrix shot with anything else. 

My cholesterol was never good but is normal now too, lol. I actually had an In N Out double-double with cheese the day before my scan for carb avoidance. 

Good luck with your labs. Hope everything calms down by then. 

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Woo Hoo, yay for you and NED!  I'm sorry to hear that the COVID shot (or whatever it was) gave you such a hard time. I'd bet money that by the time the labs are redone, they'll be normal or close to. You're one tough bird, Michelle.

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Thanks for the heads up on the EGFR community and Ginseng.  I've been reporting ongoing fatigue from the targeted therapy,  the longer I'm on therapy, the less energy I seem to have.  Doc says he's prescribed stimulants like Ritalin before but it doesn't seem to help.  So this is worth a shot.  He also said all but one of his patients went down for the count on round three of this vaccine.  He thinks I'll be dragging for another couple of (get this) weeks before I return to my "normal" baseline.   I just have to be careful about how to prioritize what energy I do have which for now is two major construction projects: a MBR/bathroom total renovation and a restoration from a water leak in the basement (faulty construction).     Carry on right?

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Doing well here Michelle. I also had my scans last Friday morning. The standard 3-month chest CT/labs/ONC Appointment as well as my annual Brain MRI & my annual Abdomen/Pelvic CT. Everything done in one day so by the end of the day I was worn out, plus the Ativan I took before the MRI, made me even more sleepy. The MRI/CT's and Labs were all read by Friday afternoon's appointment so thankfully I didn't have to wait and worry all weekend.  Everything was basically "unremarkable" which is as you know is good news. Nothing new popping up except a few items they attributed to likely being due my age. I guess my only complaints is the fatigue and weight gain that comes with the Alectinib. Two years on it and hoping for many more. Take care - Ron

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So excited to hear this Michelle and Ron!
 

Michelle, I bet the combo of flu and Covid booster was more than your immune system could handle! which zoom(s) are you attending? 
 

I had a six week scan yesterday, the first since starting Tagrisso, and definitely clearer! Appointment with Oncologist was today, We can even see lung tissue and air!! 
To many more clear scans! 

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Thanks Cordelia! That’s great news for you as well. I think of these meds as a Pac Man, slowly chipping away at the tumor.  It took about six months of treatment for me but with each scan there was steady reduction.  
 

Lungevity offers face to face Zoom groups a couple of times a week.  You can register:

https://www.lungevity.org/for-patients-caregivers/support-services/virtual-meetups    
 

It’s a nice group of people.  

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