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Rower Michelle

Cardiac Results

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Hi All

My cardiac studies are in, so far everything is within normal limits which is good news.  I tracked down the actual CT report where mild pulmonary edema is noted, likely due to fluid overload. 
I’ve started the Lasix/Potassium so far no changes in my weight yet.  I wonder if they will increase the dose when I see the oncologist on 11-8. 

I met with my pharmacist yesterday to obtain guidance on fluid intake required- all good there too. 

We’re heading to Iowa City on Monday to see the Integrative Team in search of other strategies.  
 

It’s been a year since my last hiccup on the inhibitor so that’s not so bad.  Hopefully this is just a short term curve ball.  Off to Tai Chi this afternoon.

Michelle

 

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Michelle,

I've  been off for a while.  Looking forward to hearing more as you continue or complete your testing.

Lou

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Hi Michelle,

Still waiting for the trial to get to Boston. They don't seem to know why it is taking so long.

I've been having CT scans every two months which show continued increase in the multiple nodules which they are now calling semi-solid.. Waiting it out has been tough, but I'm hopeful the trial will arrive soon. Thanks for asking and hoping things continue to go smoothly for you!

Best,

Ro

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Hey Lou!

I was thinking about you & @Curt yesterday. My doubles partner & I went for a nice walk along the lake trails.  Beautiful weekend in KC.  Today I tested out a new personal trainer that specializes in cancer rehab.  Can’t say it was a lot of fun since it was sort of cross fit-lite.  I wasn’t a big fan of those type of work outs BC.  I will keep at it.  I want to be able to row more often next spring without feeling wiped out the next day.  I have every reason this inhibitor is going to continue to be effective so I am making 2020 plans!  All my cardiac labs & scans were normal.  I’m taking Lasix for the edema while trying hard to ignore the big number on the scale.  Next set of scans are due late January.  Then we’re off to Amelia Island.  Thanks for checking in on me.  I hope you are well!!! 
 

Ro-

I’ve been thinking about you as well with the news of Dr S moving into industry.  I’m so sorry about those scans, it must take nerves of steel waiting for the clinical trial to commence.  I pray they get underway soon.  Some of these Phase I trials are going well because there’s a greater understanding of the science. Doesn’t sound like they are throwing spaghetti on the wall. I really admire your strength.  Please keep us posted.  I think we all appreciate your willingness to go the trial route.  Not an easy road for sure.  We’re here for you!  
 

Hugs to you guys!

Michelle

 

 

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Michelle, 

Keep us updated on your progress with the fitness and rowing and I love reading your posts.  You have so much to share that I learn an awful lot just reading them.  Stay well, my friend...

Lou

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Thanks! Yes, Having Dr. S leave is hard. But, its wonderful she will devote most of her time to cancer research!

She recommended another doc at MGH..so, I'll see her starting in Dec. 

Appreciate all the responses and kindness from everyone!

 

Best,

Ro

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Hi Ro!

I hope this new doctor works out well for you. Let us know how the appointment goes. I think of MGH as the best Mutant Land Hospital in the country. You’ve access to the best and brightest.  Happy Thanksgiving to you!

Michelle

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Hi there, just read your posts. Gosh you're an amazing fighter. 

Thank you for all the info and the inspiration.

I hope they kick off your trial really soon and it helps you. 

Take care and please keep your posts coming, you help people more than ya know :-)

 

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Michelle & Ro,

Keep us posted on how things are going. I know that many in the ALK+ community were concerned when Dr. S announced her plans to leave MGH. I believe I have watched every single YouTube video that she was on and hopes she continues to do so. An extremely intelligent person she is but I have also heard good things about her replacement. 

-Ron

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Thanks Ron!  I had another round of labs yesterday so results on Monday. Looks like Lasix will be part of the mix going forward.  I saw your Durva Club post and hope your scans go well next week.  

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