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ColleenRae

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ColleenRae last won the day on March 15 2023

ColleenRae had the most liked content!

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Profile Information

  • City
    Bellingham
  • US State (if applicable)
    WASHINGTON
  • Country
    USA
  • Status
    Lung cancer patient/survivor

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  1. This was just lovely, Tom. I loved seeing her enlarged photo as well! Teri was very helpful in sharing her experience with VATS Lobectomy prior to my own in October 2018. She was amazing in all that she contributed here on this forum. I am not on the forum often (I'd like to be more), so I was not on top of her condition and learned later that she had been dx'd again. It really hurts to lose someone like her. Amazing gifts she gave during her lifetime. I know I will never be able to respond as fast, rattle info off so quickly or deal with cancer as gracefully as she did, but she is really a beacon to follow. Thank you for posting this, Tom.❤️
  2. ColleenRae

    Covid and me

    Thank you for sharing your story, Lisa...
  3. Shelkay, I'm glad to hear you've made contact with someone helpful who can be of benefit to you. I worked with a lung nurse navigator locally and she was fantastic. I ended up going outside of my community for surgery but she still keeps in touch with me and is working with my pulmonologist. She has been a great 'hand holder" in guiding me towards information and resources and just made me feel like I wasn't completely alone. I know you've been steered in different directions, so hope this will help you! My surgeon did not do any biomarker or genetic testing, so no use with the BRAF V600E mutation info you need - I hope you'll get responses from others here. I'm sure that would help to have others to discuss it with. You hang in there... thinking of you and hope these new connections can steer you in the right directions.
  4. Hello Larry... Looks like you were the OP. I'm sorry I don't know much at this point about BRAF, but I hope you'll get some info here from others. Shelkay - Very sorry to hear what you're dealing with and the need to dive into more research. You've got this down; you've proven that! I hope your oncologist will work diligently with you on this. Thinking of you! Thank you, Michelle, for the YouTube Addario Foundation link... It's post like yours that offer so much info to all of us out here. I've bookmarked that site and will view it as I'm interested in all of this treatment / research info. Thank you!
  5. Your story is amazing!  How are you & your son doing at this point in time?  I'm optimistic all is well but would be pleased to hear from you.  I'm awaiting biopsy results & then likely will need some type of surgery.

    All best, Irka

    1. ColleenRae

      ColleenRae

      Hi Irka,

      I'm sorry for the late reply.  For some reason I'm not getting notifications from this site when I get messages (I used to!). I will need to investigate this!

      I also need to see what "your story" is here with Lungevity... I'm not sure if my story is amazing, but it's been helpful to have this site and to share questions, fears, experiences with others in this journey.  Thank you for your message and reaching out... and asking about my son and I.  We are doing fairly well. I think this whole cancer experience has really changed our way of thinking and experiencing life though.  My son is returning to college in a couple of weeks and I am going to try and see if I can either resume an online business I had or look for at least part-time work. I recently saw my surgeon (lobectomy last October) and he does not think I need another scan for 12 months. I'm nervous about waiting that long, so seeking a second opinion. I don't know how to regain what seemed like a "normal" life before all of this. It takes work, I think. It takes support from others (my son is very loving and supportive, but he's young and idealistic too!).

      I will try to see if I can find your posts and see what you are going through.  I'm sorry you are dealing with lung cancer, too, but glad you've found this site. There are some really great people here! Do you know when you will receive your biopsy results? This is good if you can get a biopsy... I was not able to due to the size and location of my tumor, so I took a gamble and had the lobectomy so they could biopsy the tumor. It was the best choice since it did turn out to be cancer.  I have another nodule in the left lung but my surgeon does not seem worried about it (but the radiologist is), so not sure how to handle that but ignoring it for now...ha!  Hope to read your story and comment after I have time to read your posts... Thank you for your message.

      Colleen

  6. Loved seeing this Susan... Sorry for being late in congratulating you. I admire you and want you to know that it does inspire others, like me...
  7. Tom, Thank you for this link (you provided in a reply to my post yesterday). Very well-written and beneficial - encompassing so much more than what clinic or med school the practitioner has attended. Thank you for reminding me to keep that perspective as well in this journey. Your surgeon sounds wonderful. I can't imagine the mutual bond you both must have as a result of your experiences and history, and the help he provided for your daughter as well. That was uplifting to read. Really enjoying your posts, information and willingness to help others on this path. Thank you.
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