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Update & Question


hillham

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Hello all! I have just returned from a two week vacation and am preparing to start back at work in three days. I finished four rounds of cisplatin/pemetrexed on July 25th and 30 days of radiation on July 8th. I had scans on August 6th that showed good results, (the doctor said NED!) Two days ago I started taking the TKI entrectinib in the hopes of avoiding recurrence. I feel good overall, but one issue has been developing over the last couple of weeks. I have a dry cough, and it hurts when I take a deep breath. Also, I was out running my usual 4 miles and/or doing a lot of hiking on vacation and excercisingn began getting harder and harder - almost like my heart would start racing for a minute and I'd have to stop to calm things down. I was hoping to get stronger and stronger, but it seems like the opposite is happening. The doctor says to wait a week or so and then we'd scan to see if anything else is going on. Is he looking for a pleural effusion? Pneumonitis? Something else? I'm not sure if this is common after radiation, and I don't want to get carried away with Dr. Google! Any advice or input would be appreciated!

KH

 

 

 

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So glad you had a great vacation!  All of what you’re saying sounds very familiar to me—- and yes stay off of Dr Google.  

With chemo/rad/TKI your body has been through a pretty big trauma and running or any other intensive cardiac activity will result in that terrifying racing heart.  What the doctors don’t tell you is finding a post cancer baseline is challenging, requiring persistence and patience. 
 

Prior to my diagnosis I was a competitive athlete.  While I didn’t have chemo/rad, I’ve been on a TKI for 35 months.  I’m going to be straight with you in saying I was never able to regain my pre-cancer activity.  The TKI caused a lot of lung scarring (which on scans looks like I had radiation even though I didn’t). 
 

Here’s a few ideas about what might be going on:

*TKIs can cause pneumonitis or pulmonary edema.  Either condition is easily treated.  I had pulmonary edema, it resolved with Lasix after a few weeks. 
* Lungs take time to heal post radiation and there might be some scarring

Although anything can happen at any time if your doctor was really worried you would already have had an off cycle CT scan. 
 

Even though this is going to be difficult, you might want to consider dialing the activity back for a couple of weeks and see how you feel.  Instead of running 4 miles, try walking at a brisk pace or ride a bike. You get the gist. 
 

Post cancer diagnosis exercise takes trial and error to find a new baseline.  Talk to your doctor about this, ask about pulmonary rehab and physical therapy. I wish I would have done this rather than struggling on my own.  
 

For me it was a mind shift from what I used to be able to do — to what can I do today without injury.  

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Michelle,

That is very helpful. Thanks so much for your response. I didn't know that TKIs could cause lung scarring! Ugh, yet another thing. However, whatever I'm experiencing now began before the TKI since I've only taken it for two days and I've had these symptoms - which seem to be getting worse, not better, since mid August. I'm guessing it's from the radiation. I will take your advice and scale back the type of exercise I am doing. I think that's my only choice anyway! I'll also ask about pulmonary rehab/physical therapy. I would never have thought about that as an option. I hope this doesn't blow up into a major problem for me. 

It seems like you've found what works for you. Hope I can get there too.

KH

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I’ve spent the summer in PT twice a week, not exactly what I had planned.  I’ve graduated to once a week and I’ve got to say I kept wondering-why didn’t I ask for it sooner??? Of course the pandemic set everyone back…. 
The pulmonary edema I experienced was after one year of therapy… I’m three years into this now and what I’ve learned is there’s always something that requires adjusting to…. 
 

If you haven’t tried this yet- take a look at YouTube- Andrew Weil MD’s 4-7-8 breathing exercise.  It’s good for lung recovery.  There’s some Qi Gong stuff out there called fire breathing that I also tried.  
 

You’re doing really great, rather than worrying, you’re letting your doctor know- and letting them determine the course of action.   That’s really huge.
 

I totally understand some days it feels like you are going backwards however, once this gets worked out you can find a steady state.   

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