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Lin wilki

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Everything posted by Lin wilki

  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
  16. In my situation at a NCI hospital I first got my oncologist. You only see them every few weeks. In the interim a PA does your appointment. A nurse coordinates appointments. When side effects of treatment become a problem oncologist sets up consult with a Palliative care nurse. Because I’m at the main teaching hospital all these services are available to me. I could also request a consult with psychiatrist, nutritionist and if needed a pulmonologist Once you start treatment these things fall in place Good Luck
  17. Hi Sheila! I haven’t heard of that mutation. I have HER2 amplification and have not found anyone with that mutation So I understand having a rare mutation but there is plenty of support on these forums Go ahead and post away!
  18. My scans are never posted until After I’ve met with my onc for results. A good thing for sure! I’m sure there will be another plan if needed. At least you will learn if there are reasons for concern and putting in a new plan My first PET scan after 6 months on immunotherapy trial showed much progression. I did not know that until my appointment and the new (chemo) plan was already in place for that day. Hit me like a ton of bricks but glad things already decided for me! My last post says how upsetting the scan reports are — so better not to read them! Just listen to your doc Good luck and follow up
  19. I don’t ask what other med is an option for me. Mainly because I know they are harder to tolerate. Since Kadcyla is working I’ve been told to “ride the wave” and not worry. My doc always has something else to try Good luck with radiation
  20. So glad they took you off docetaxel. It will be good to have those side effects gone i still have many tumors left and Kadcyla is effecting my heart - severe artery calcification. Have echo before next appointment so will find out what they do about that sounds like your making headway in your cancer fight. You will be left with side effects from radiation but it is usually quite effective Keep plugging away!
  21. Mam. Ct scan good. Tumors are dying. So I asked my oncologist why am I the only person on all these forums with HER2 amplification? She just said I’m a unicorn! Anyway she said Kadcyla is working for me so be happy. I’m trying not to think about what’s next - cuz I know it will stop working at some point My side effects are fatigue , muscle aches and mostly dry mouth. It changed the taste of everything I eat or drink. I find it difficult to live with. Oh well at least I am LIVING! Right?
  22. My my you do 𝐏𝐫𝐨𝐣𝐞𝐜𝐭 a lot. It is extremely difficult to live in the present and not keep thinking the worst! I’m sure we all do it! However that is the lesson of cancer. Enjoy the fact that right now the news is good and don’t think so much about the future. The doctors will deal with a recurrence if/when it happens. Trust them
  23. Lin wilki

    Tens unit

    I have a couple of fractured ribs so the muscles surrounding them are very tight. My chiropractor used the tens machine always. I go every other week I never heard you can’t use that if i you ou have cancer
  24. Fear of the unknown creates great anxiety. Once you get your diagnosis and a treatment plan everything settles down. You just get going on the business of dealing with treatment and LIVING! Good luck to you and know there’s lots of folks here who have been where you are and are here to support you
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