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Scan results


Lin wilki

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So not a great scan today. Slight growth. I knew something was up with how bad I’ve been feeling. Oncologist wants a biopsy and pet scan. Go from there. Not a lot of options. Maybe a trial??  or different chemo

Also getting portable oxygen “as needed” since I’m getting breathless with walking especially 

At some point I wish something would work and make me feel better!

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So today pulmonary function test. Very upsetting to see what cancer and treatment has done to me!!!  I was a fitness instructor for over 20 years.  Great blood pressure. Resting HR under 70. Lately nurses not getting the PulsOx to read well. Falling into low 90’s when it recently was 98/100. I said after I walk I am so breathless!  So 6 minute walk in hall. PulsOx down to 70 and HR 130. Crap!  See pulmonologist tomorrow. Suppose I will now be on oxygen. I feel old and sick now for sure!

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Thanks. My oncologist did not seem very encouraging. Not that she doesn’t want to find something but she admitted very few options for my mutation   I have a few weeks to finish up tests and biopsy results. But I’m getting tired of feeling so shi##y and still always lousy results. 

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Pulmonologist did another walk test. Oxygen needed all the time!  2 liters when at rest - 4 when up and about. They brought it last night. Big concentrator on all the time. Depressing to me!  My dad was on oxygen for years with severe COPD so I’m familiar with the fact that it’s a pain in the neck - dragging that cord around!  Seems my lungs are pretty damaged and I’ve reached a “tipping point”. Don’t feel like my body can take much more treatment!  Maybe the biopsy will give us some info but I know this is definitely my last chance

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I was diagnosed 6/19/2020. I was working full time until this pneumonitis hit. I've been off for 4 wks. I have another wk approved of short term disability and probably will take 2 more. I am in IT and work from home since Covid hit. 

I get 2 liters of oxygen. The steroids seem to be helping

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Jennedy: Going from half marathon to needing Oxygen in such a short time is disappointing to say the least. Is the pneumonia completely gone? I ask because my cancer was discovered as the result of pneumonia and it took quite some time for my lung to regain full function. Do you have COPD and if so are you on an inhaler? 

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Sorry jennedy for the quick occurrence of pneumoitis. I was afraid the pulmonologist would suggest steroids. I’ve had steroids with chemo and for ground glass opacities. I already have osteoporosis so now much worse. I have fractured a few ribs from coughing. Hope you don’t have to deal with it!  If you have a cough support your ribs.  Good luck

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35 minutes ago, GaryG said:

Jennedy: Going from half marathon to needing Oxygen in such a short time is disappointing to say the least. Is the pneumonia completely gone? I ask because my cancer was discovered as the result of pneumonia and it took quite some time for my lung to regain full function. Do you have COPD and if so are you on an inhaler? 

@GaryG i have radiation pneumonitis. Basically inflammation in the lungs caused by the radiation I had in July. I am taking oral Prednisone. They also gave me an inhaler... Albuteral. I don't use it much. It makes my cough worse. My lungs are improving (not crackling anymore). I get another CT scan on 10/29. 

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