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JC63

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  • City
    St. Paul
  • US State (if applicable)
    MINNESOTA
  • Country
    USA
  • Gender
    Female
  • Status
    Lung cancer patient/survivor

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  1. Hello Hillham, I received Cisplatin and Gemcitabine for my treatment of Squamous Cell. I didn't lose all my hair, but it did thin out quite a bit. Another thing to be aware of is tinnitus and possibly high-pitched hearing loss with the Cisplatin, as it is a platinum-based drug. I was never warned of this and my doctor denied it was a side effect, but sure enough, I have tinnitus and high-pitched hearing loss. I had to stop treatment after the second round out of four because of this. I would get a hearing exam before treatment and after in order to have a baseline. Good Luck! JC
  2. I had a PET scan of my lungs to rule out lung cancer. My thyroid showed up on my PET scan and was lit up, so I assume your throat would as well. A tumor in my right lower lobe lit up as well. It turned out I had lung cancer and thyroid cancer, unrelated. I would try to do surgery before March, as sometimes these tumors can grow quickly, like mine did. What did he think about your throat discomfort? Good Luck! JC63
  3. JC63

    KRAS G12A

    Thank you Tom and LexiCat....That does clear up a lot! I wasn't sure the difference between immunotherapy and targeted therapy. My oncologist made it sound like chemo was my only option, and that really scared me after the awful side effects last time around.
  4. JC63

    KRAS G12A

    Hello Everyone, I was diagnosed with squamous cell lung cancer in the summer of 2019, which I had surgery for. I recently discovered they did testing and I have the KRAS G12A (biomarker/gene/mutation, not sure what it is considered). From what I've read, there isn't really any immunotherapy for this, just chemo. I haven't had a recurrence yet, but didn't do well with the chemo after surgery. I only made it through two rounds of cisplatin and gemcitabine before I became toxic...(hearing loss/tinnitus mostly). I was wondering if anyone else has this mutation, if so, what options were you given? Thanks much, JC63
  5. JC63

    Two separate cancers

    Thanks, Susan! I'm going to start looking for a new primary doctor. I just didn't expect it to be so difficult to manage. I'm glad it's been working well for you and gives me hope! JC
  6. JC63

    Two separate cancers

    Thank you so much!
  7. JC63

    Two separate cancers

    Hi Susan, My Free T4 was 1.01, which I guess is good? He did a total T3, which was 114, range is 58 to 159. I asked for a free T3, but he refuses stating it is not accurate. My TSH was 2.14, but the goal is 0.1 to 0.5 to reduce cancer recurrence. My preop TSH ran between 0.92 and 0.36 and free T4 preop was 0.92. Since he refuses to do the free T3, I'm not sure what that is. I feel that is important for energy level. My T3 preop was 3.1. I'm trying to aim as close to my preop numbers as possible, so I feel as normal as possible. The endo increased my levothyroxine from 100 to 112, but I felt like it peaked around 1p-2p and I started having symptoms of anxiety, everything seemed bright, brain fog, etc. I took that for two days and restarted the 100 today. I'll call him on Monday, as I feel this dose is too high too soon. Otherwise, I still have the same symptoms as before, nothing has really changed. I'm getting concerned because they say these symptoms are not normal of thyroidectomy; however, they didn't start until after the surgery. I'm going to start looking for a new endocrinologist tomorrow, as I feel he is dismissive of my symptoms and doesn't care. I'm wondering if I should try a different thyroid medication such as the natural thyroid or wait and see what happens. I'm pretty depressed, so not sure how long I can wait. I really need to get back to work, but feel like that's never going to happen, at this rate. Any suggestions you have are welcome. Thanks much, JC
  8. JC63

    Two separate cancers

    Hi Susan, I had my labs drawn today, but no results yet. I'm still experiencing panic, anxiety, shortness of breath, and a cough, which makes me nervous. I'm hoping they are able to help me, as I haven't been able to do much feeling this way. I'm still regretting the surgery, but it is what it is. I'll let you know what they say. Thanks much, JC
  9. JC63

    Two separate cancers

    Thank you, Colleen!
  10. JC63

    Two separate cancers

    Hello Susan, When it rains, it pours! I was in to see the endocrinologist today and he said I should not have been started on levothyroxine so soon, as it takes about three weeks for your body to deplete your natural hormone. Basically, I was being overdosed on hormones, thus the anxiety, depression, weight loss, panic attacks, etc. He will check blood levels in one week and go from there as far as dosing. He said I will need to keep my TSH suppressed to reduce cancer recurrence. He also mentioned RAI after the coronavirus calms down, but not sure I want to go through that. After having a bilobectomy, chemo, and thyroid out, not sure I can mentally handle radiation yet. He seems to think all I need is a TSH, but I insisted on a T3 and T4, as some people have trouble converting from T4 to T3 and then have no energy. I've thought of the natural pig thyroid, but he said it was too hard to keep numbers correct since the dosing is different in every pill. Have you been okay since your numbers have been under control? Are you on the synthetic or the natural hormone? It sounds like it took a few months to normalize. I hope it happens soon for me too. Thanks, JC
  11. JC63

    Two separate cancers

    Thank you, Colleen! I was in to see the endocrinologist today and it turns out the surgeon wasn't supposed to start me on thyroid medication for two to three weeks, as that is how long it takes for my natural hormones to deplete. So, he told me I had too much in my system, thus the overwhelming emotional issues. I still feel anxious and depressed, but have been prescribed klonopin, which is for anxiety and helps alot. As soon as I feel it coming on, I take one, and then I feel pretty much normal. I'll have bloodwork in one week and hope things will start to even out.
  12. JC63

    Two separate cancers

    Thank you, so much!
  13. Hello Everyone, Last summer, I was diagnosed with NSCLC, had surgery/chemo, and am doing okay so far. At the same time, I was also diagnosed with follicular/papillary thyroid cancer that they initially thought spread to my lung, but turned out to be two different cancers. Two weeks ago, I had my thyroid removed and am not doing so well emotionally. I was wondering if anyone else has been diagnosed with two cancers and how you are dealing with it all. I'm just feeling really overwhelmed. Thanks, JC
  14. Hello Schoolie2, I had stage 2b lung cancer, with no spreading, and a bilobectomy of right lower and middle lobes. The surgeon told me all the cancer was removed and suggested adjunct therapy, just in case. My treatment was to be four rounds of Cisplatin and Gemcitabine, but I only made it through two. I started to have tinnitus and hearing loss during the first treatment due to the Cisplatin. The dose was lowered for the next round, but the tinnitus worsened, so I stopped. The treatment only gave me 5% extra chance of the cancer not recurring and now 2.5% chance, so I wish I had opted out. I recently had a hearing test and have moderate to severe loss with high pitched sounds, but general conversation is normal. I'm sure if I had finished the treatments, it would have become much worse. The Cisplatin is a very strong chemo and I think I had almost every side effect, but the lasting ones were tinnitus and hearing loss. You will also need to drink plenty of fluids due to the possibility of kidney damage. It looks like you caught the cancer early. If you decide to proceed, I would get a baseline hearing test and ask about your risk of recurrence with and without treatment, if you haven't already done so. Not everyone gets tinnitus or hearing loss, but you may want to research it. I wish I had before agreeing to do it. Best of luck, JC
  15. Hi Jaycee, I had my appointment today and decided to stop chemo. I was offered the carboplatin along with gemcitapine, but the doctor stated that carboplatin has not been proven to reduce recurrence and it also has the loss of hearing chance. He agreed that since I was having tinnitus and hearing loss that it would be best to stop since this was adjunct therapy. I finished two rounds, so only had a 2.5% chance less of it not recurring. It was a hard decision to make. I'll have my first follow-up CT scan in January. I hope the Carbo+Alimta is successful for you, it sounds like a much better combination. I wasn't offered the Alimta, not sure why. Keep in touch and let me know how it goes! JC
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