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Susan Cornett

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Posts posted by Susan Cornett

  1. Welcome to our little corner of the world. The beginning is so difficult - so much information and so many tests and hurrying up and waiting. You'll think of 100 things before you get to the doctors' appointments. My recommendation is to write them down as you think of them so you won't forget anything. Michele and Tom have both given you a lot of great information.

    Keep us posted and let us know how we can support you and your husband.

  2. Hi, Robert. I did not have Keytruda during my treatment; my cancer didn't have any genetic mutations. I had four rounds of Cisplatin/Alimta (pemetrexed) in 2016 after my lobectomy. In 2017, I had 8 rounds of carboplatin/taxol and 30 radiation treatments. In 2018, I had SBRT and (knocking furiously on wood) hope that's it. How is your wife reacting to her treatments?

  3. Lin,

    I promise it gets better. I was diagnosed almost 4 years ago and have since had two recurrences. It was about a year after that last recurrence that I finally felt like my old self. I didn't get all my stamina back but that's due more to my weight gain during treatment than anything else. You just have to hang in there. Vent when you need to. We all understand.

  4. Hi, Lisa. I'm about to celebrate my four year cancerversary. I was diagnosed with stage IV adenocarcinoma in February 2016, and have since had two recurrences. I've had chemo, radiation, and SBRT. So - there is hope. Here are my tips to help you: don't read statistics - they are crap. You can live your life in fear of cancer or in spite. I chose spite! 😉

    In all seriousness, we're here to help you so please ask us anything and let us know how we can support you.

  5. Hi and welcome! My feet/ankles have been swollen for the better part of the last 3 years - I was diagnosed 4 years ago. Both my primary doc and my oncologist (aka Super Doc) are aware of it. They keep an eye on labs to make sure my organs are behaving (kidney, heart, etc). Neither can figure out why I swell and it's not affecting anything - no impact on circulation, etc. Just make sure at least one of your husband's doctors keeps an eye on it. 

  6. Hey Tom - so impressed with your quick release! When I had my lobectomy, I was there for 6 days. I did have an interesting med combo so I really didn't care where I was. I will tell you that - almost 4 years later - I have permanent nerve damage. Hoped it would improve over time but no such luck. I've not seen many others mention this but I had terrible spasms. They weren't muscle spasms - something different - that were painful and would take my breath away. They lasted for about 3 months and then just stopped. 

    Keep working the spirometer and keep up your great attitude. Enjoy the good tunes as you recover.

  7. Hi, Robin. I'm so glad you found this forum. We have so many great contributors here. You will learn very quickly that everything is hurry up and wait. I also had to adapt quickly to the loss of control of my schedule! Great news is we've had lots of advances in treatments. We've got people living with this as a chronic disease. Doesn't sound fun but it sure beats the alternative. I'm a stage IV about to hit my 4 year cancerversary. It can be done.

    Please let us know how we can support you.

  8. Glenn,

    I can't give you medical advice but my experience with SBRT was quite good. It was painless, quick, and no side effects. I've been NED since I completed that treatment. 

    You also sound like so many of us with multiple "ologists" looking after us. I had the thoracic surgeon, two different oncologists, a pulmonologist, an ENT (due to mets to the thyroid AND thyroid cancer) and my primary. I am currently down to my medical onc, my primary, and my pulmonologist. My pulmo defers to the oncologist for the big decisions. We all treat him as the quarterback and he has been fantastic at keeping all of the docs in the loop.

    The balancing act is just another part of this journey.

  9. Amy,

    Sorry about your diagnosis but I'm glad you found us. Were you able to have the VATS surgery or did you have to go traditional surgery? Any idea what your chemo drugs will be? I highly recommend this site for information on chemo drugs and side effects. It was very helpful to me.

    Do you know if your tumor was tested for markers/genetic mutations? 

    Please keep us posted and let us know how we can support you.

  10. Hi Rose. I had SBRT in September 2018 for a tumor in my lower left lung. I've been NED since so I am definitely a fan of the treatment. I had already had my upper lobe removed and my doc didn't think I was a good candidate for surgery. By the time mine was found, it was in my lymph nodes and thyroid. 

    Please keep us posted on your progress and let us know if there is anything we can do for you.

  11. I understand your frustration, although I was only balancing two oncologists (medical and radiation). My medical onc is my favorite - I call him Super Doc. I liked the radiation onc but I didn't understand why I had to see them both, on the same day, to discuss the same results. Not to mention stepping on the scales twice, two sets of vitals, etc. When I was about 6 months post-SBRT, I finally told Super Doc that I needed one lead doc and I wanted it to be him. Radiation doc released me the next round and now I'm back to one. 

  12. Hello - 

    Not sure how I missed this string because I definitely understand. I had cisplatin in 2016 and noticed ringing in my ears by the second dose. Super Doc offered to lower the dosage but I opted to leave it as is. As I sit here, nearly four years later, I have tinnitus and hearing loss. I used to really enjoy music but now it all sounds like there is cotton stuffed in my ears. I knew this was a risk but didn't feel like I had a choice as my cancer was advanced. Super Doc also said that going to an ENT would likely not yield any beneficial results. 

  13. Bagley,

    I had chemo as my first line treatment, and chemo/radiation for my first recurrence. What are your chemo drugs? I highly recommend this site for information about the drugs and potential side effects. Chemo was not fun, but it is light years better than it was 10 years ago. Your medical team should also be able to manage your side effects.


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