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Lin wilki

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Lin wilki last won the day on June 28 2020

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    Palos Heights
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    Lung cancer patient/survivor
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  1. Lin wilki


    Thanks. I will post for awhile. My PA said lacking treatment I may feel better in a few weeks. Hope that’s the case
  2. Lin wilki


    I’ll be at home and of course the plan is comfort!! I’ve been so miserable pretty much through this whole thing Nonody wants their time so short but I sure did try
  3. Lin wilki


    So this site has been very helpful and all you you guys are great saw my oncologist today. Besides my cancer I have severe interstitial lung disease. After my PET they see the cancer has moved into these breathing spaces. The last month has been very difficult and oxygen isn’t really helping. So it was decided to end treatment. I believe it is the right thing to do since I really couldn’t handle more treatment I may still creep on here and see how everyone is doing
  4. Mam. How’s Gemzar. I refused docetaxol so doc said Gemzar less toxic? Would you say it was any easier? Just that alone no immunotherapy cuz it doesn’t work for me Couple of weeks- decision time. My chemo nurse said if they give you an option - take it
  5. Tom. No my lungs are now so damaged. Severe interstitial disease , pulmonary fibrosis. Scar tissue from SBRT. And a very rare mutation. I don’t think my body can handle more treatment. Big decisions ahead
  6. Well I wish you luck. If your pet looks good why wouldn’t they continue it?
  7. ObGxGigi Not going to go back to the what if’s. Been there. Since you are HER2 I would dig a little deeper. I was so new to all this and too numb when told no immunotherapy will work and no more radiation since they did so much at the start Was not aware of differences in HER2. A FB page for HER2 has talked about other drug possibilities. Enhurtu and Pozi I will ask my oncologist about them - wish we had talked about possibilities before Kadcyla stopped working. My oncologist was not encouraging about options. A trial (which she said is a crap shoot) or Gemzar. She said we’ll talk more after PET and biopsy Keep posting. Good people here and good info
  8. Yes. Started with immunotherapy and radiation trial. Much progression at 6 months. That’s when I was told I have HER2 amplification Now also I asked about Exon 20. Nope. I found out HER2 is not just one kind! I did Carboplatin Alimta 4 months. Still growth. Then Kadcyla 6 months/here we are more growth. Not that this will be you- depends on what kind of HER2. I know someone on a HER2 FB that has been on Kadcyla for over 2 years with no problems. I asked about Enhurtu- I think you need Exon 20. Basically I’m very low on options. I wish you luck!! Dig in and fight!
  9. Gemzar was the chemo suggested to me. I have a few weeks before a new treatment plan is decided. Keep us informed how the side effects are Good luck with your leg pain
  10. My oncologist decided PET first cuz she’s not sure which tumor would be best to target. Based on that she’ll set up biopsy I always liked this group best since there is a lot of positive results and good info. Long time survivors. However I have such a rare driver I always knew my prognosis wasn’t good. I read “the devastating diagnosis” of HER2 amplification had a poor prognosis I think I have one more option then it’s the end of the line. Since there is really no “light at the end of tunnel” I’m making peace with it. I have been living for 18 months with treatment but have NEVER felt good. Just want to be able to see my family!
  11. After all my tests my oncologist will decide next steps. There is a trial that focuses on HER2 but if biopsy shows less expression of HER2 now after targeted treatment then I would not be a candidate. I am in a holding pattern until all results are in Maybe??? they will find something else to target. Wait and see.
  12. Update. My targetKadcyla has stopped working after 6 months I am breathless coughing tired achy. So another biopsy to see if something has changed. Pulmonologist to check me out. Pet scan soon All the good stuff! So not a lot of options for me. I refuse Doxetaxol cuz it will make me miserable and there is no end to treatment. So maybe a trial? or a different chemo. Depends on biopsy How are you doing? I hope better than me! My goal is to make it to summer and the other side of covid so I can see friends and family Only so much misery I can take! Pretty unfunctional now
  13. It’s hard but wait for the facts. Sounds very early! Once you see doctors and get a plan you will be able to say strongly “I got this” No one wants this prognosis but now you do. So you attack it!
  14. Word to the wise— don’t wait till the nausea hits- take the Zofran on schedule. I tried once taking less and once it hit- zofran did not help! NOTE: It will make you very constipated so that is always something to stay on top of. I now take Miralax every day The weight gain does seem to be something to call the doc about Good luck! Remember to keep a diary of side effects so you can know what to expect with future infusions
  15. Hi Heather. I also was a group ex and personal trainer. I realized I lost a lot of stamina the last couple of years and blamed it on knee replacement surgery. Was diagnosed with Stage 4 adenocarcinoma in May of 2019. I then gave up my classes and just did a little personal training I also have a rare mutation HER 2 and have finally been put on my target chemo which is killing tumors It would be a good idea for you to have more info on your cancer type and mutation. You may find others here that would be able to advise you Follow up here- you will find lots of support
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