Lin wilki Posted October 13, 2020 Share Posted October 13, 2020 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! Link to comment Share on other sites More sharing options...
SamGirl50 Posted October 13, 2020 Share Posted October 13, 2020 Hang in there! Stay strong! Link to comment Share on other sites More sharing options...
GaryG Posted October 13, 2020 Share Posted October 13, 2020 Lin: How about a second opinion? Hang in there and I wish you the best. Link to comment Share on other sites More sharing options...
Lin wilki Posted October 13, 2020 Author Share Posted October 13, 2020 No second opinion. I have read lots on my HER2 amplification and there’s not many options. It’s very rare. See Roz’s posts. When you have a very rare driver they don’t have a lot of options Link to comment Share on other sites More sharing options...
LexieCat Posted October 13, 2020 Share Posted October 13, 2020 I'm sorry, Lin--that sucks. Maybe a new biopsy will reveal something else going on. Hang in there. Link to comment Share on other sites More sharing options...
Tom Galli Posted October 13, 2020 Share Posted October 13, 2020 Lin, I completely understand how and what you are feeling. Bad news scans just plain suck! I pray for something to work and feel better. Stay the course. Tom Link to comment Share on other sites More sharing options...
Rower Michelle Posted October 13, 2020 Share Posted October 13, 2020 Oh Linda, I’m so sorry to hear about this news. Totally sucky. I hope there’s a new cocktail in your future. Maybe a clinical trial can be available to you. My heart goes out to you. A big hug. Michelle Link to comment Share on other sites More sharing options...
LouT Posted October 14, 2020 Share Posted October 14, 2020 Lin Like everyone else I'm praying for another option to help you. Please keep us updated. You are on all of our minds. Lou Link to comment Share on other sites More sharing options...
GaryG Posted October 14, 2020 Share Posted October 14, 2020 Miracles happens when we least expect them. I am hopeful your luck turns around and you find a drug that can help. Best wishes. Link to comment Share on other sites More sharing options...
Sabacat Posted October 15, 2020 Share Posted October 15, 2020 Keep the faith! There are new trials every day. Link to comment Share on other sites More sharing options...
Tom Galli Posted October 15, 2020 Share Posted October 15, 2020 If one has faith, there is always hope! Stay the course. Tom Link to comment Share on other sites More sharing options...
LouT Posted October 15, 2020 Share Posted October 15, 2020 15 minutes ago, Tom Galli said: If one has faith, there is always hope! Stay the course. Tom Amen Tom...well-said Lou Link to comment Share on other sites More sharing options...
Lin wilki Posted October 15, 2020 Author Share Posted October 15, 2020 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! Link to comment Share on other sites More sharing options...
Jennedy Posted October 15, 2020 Share Posted October 15, 2020 @Lin wilki i hear you! I did a half marathon in March and now I struggle to walk the dog to the top of my street. They put me on oxygen 3 wks ago. Hoping and praying they find you a new trial or treatment of some kind. Link to comment Share on other sites More sharing options...
Susan Cornett Posted October 16, 2020 Share Posted October 16, 2020 Lin - Sorry it wasn't better news. I am crossing fingers and toes that there are good options - new med combos, clinical trials - whatever it takes. Link to comment Share on other sites More sharing options...
Lin wilki Posted October 16, 2020 Author Share Posted October 16, 2020 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. Link to comment Share on other sites More sharing options...
Lin wilki Posted October 17, 2020 Author Share Posted October 17, 2020 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 Link to comment Share on other sites More sharing options...
Lin wilki Posted October 17, 2020 Author Share Posted October 17, 2020 So Jennedy. When we’re you diagnosed and now how much oxygen do you need? Are you still working full time? That is quite a feat! Link to comment Share on other sites More sharing options...
Jennedy Posted October 17, 2020 Share Posted October 17, 2020 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 Link to comment Share on other sites More sharing options...
GaryG Posted October 17, 2020 Share Posted October 17, 2020 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? Link to comment Share on other sites More sharing options...
Lin wilki Posted October 17, 2020 Author Share Posted October 17, 2020 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 Link to comment Share on other sites More sharing options...
Jennedy Posted October 17, 2020 Share Posted October 17, 2020 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. Link to comment Share on other sites More sharing options...
LouT Posted October 19, 2020 Share Posted October 19, 2020 Lin, Jennedy, So sorry to hear about your difficulties. Please stay strong...Lin; I pray for another treatment for you and Jennedy; I hope this inflammation is short-lived and recovery is faster rather than slower. Lou Link to comment Share on other sites More sharing options...
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