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Deb W

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Posts posted by Deb W


  1. 17 hours ago, Tom Galli said:

    Deb,

    I wouldn't think there is a problem with attaching the trial document to your next post. It might be helpful to educate those of us who've not encountered a trial.

    I had but one trial opportunity when my first surgical consultation resulted in a no surgery decision. The trial was to have conventional chemotherapy or conventional chemotherapy administered while in a hyperbolic oxygen environment. We didn't have much time to make the decision and it became irrelevant anyway because my GP twisted my surgeon's arm so much that surgery was back on the table. I can't therefore offer much practical advice on your trial drugs or method. Anyone else have thoughts?

    Stay the course.

    Tom

    clinical trial (1).docx


  2. Hi everyone,

    I will be starting treatment May 18.  It's been an overwhelming 10 days. I feel I'm researched out!  I have been asked if I would like to participate in a clinical trial.  Basically they are using the drugs that my Oncologist plans on using but the sequencing would be different. The trial would be testing the timing of immunotherapy alone or with chemotherapy as first line treatment and maintenance in non-small cell lung cancer.   I am wondering if anyone  who has been in a trial and if you think it's beneficial.  The only risk I see is that if I'm in the group that only gets immunotherapy alone first - it seems that getting to the cancer would be  slower that way rather than starting out with a combo of chemo and immuno.  I sort of feel like I need some kind of course to keep up with all this stuff.  I'd really appreciate any thoughts you might have on this.  Is it o.k. to attache the trial document here?


  3. Just wanted to take a moment to say thanks to all for your thoughtful comments.  It turns out that the surgeon feels the video scope is too risky - so I believe him.  There is now another option - Endoscopy, but still no guarantees that he will be able to get tissue.  I am going to go ahead with that option, but now waiting for his office to call to schedule.  At this point, I'm not comfortable getting treatment without at least attempting to learn  exactly what we're dealing with.  If it doesn't work, I'll start whatever the treatment plan will be which I think is targeted therapy - I haven't started reading about that because, honestly, my brain is exhausted. I'm scheduled for a brain MRI Sunday morning....I absolutely hate those - even with Xanax I feel anxious.

    MBinOregon - I am wishing you a good result...so nerve wracking.

    I think I have clarity on the biomarker test.  The tumor tissue was stored somewhere.  He said he ordered the  testing the day he saw my CT - which leads me to the conclusion he suspected a recurrence at that time.  He doesn't have  the results just yet, but should have them in a few days.

    Tom how scary that must have been...3 recurrent tumors and only one lung...can't imagine handling that.

    Thanks again for your insights and comments.

     

    Deb


  4. Hi friends,

    It's been a while since I've written.  A little back story.  I was diagnosed with Adenocarcinoma and had surgery in March 2019 Stage 1B, no chemo or radiation.  Last week I had  my 1 year follow-up CT scan. Two of my lymph nodes were inflamed and there was another small nodule.  I went for a PET scan Monday and my oncologist called me with the results a couple of hours ago.  I'm still in a bit of shock.  It is his opinion that there is a recurrence because the lymph nodes are on the same side where I had the surgery and there might also be pleura involvement.  The issue at hand is whether or not they can get the tissue.  A CT guided biopsy might not get it because it is small and could be missed.  He said another option would be a video scope of the lining of the lung, but it might not be possible because of scar tissue from the surgery and the surgeon (the same surgeon that did my lobectomy and resection)  might not be able to get through it - also, it's a 2 day hospital stay and it's another surgery.  He said a CT guided biopsy might produce a false negative if they don't get it exactly on the right spot because it it so small.  A bronchoscopy would probably not be authorized due to COVID and it wouldn't give information on the pleura.  He is getting the genetic profile (I think that means biomarker testing) from my tumor from the past.  So, the cancer is staged at 3 for now, but if there is pleura involvement it will be stage IV.

    Here's the thing...I just had an annual check-up and was feeling fine.  I did notice some shortness of breath while playing tennis in early March, but I attributed  that to humidity. I also notice  that I wasn't able to run as fast or far as before.  But, I did have wheezing that I hadn't had in the past.

    I can't even think about treatment options at this point.  All I'm thinking about is how they'll get the tissue sample.    I'm wondering if I should put myself through all this testing or just have them treat the cancer since the oncologist and tumor board believes it is a recurrence.  

    So thankful for this site and all of you.

     

    Deb

     


  5. Dear friends,

    One year ago today I was diagnosed with Stage 1B Adenocarcinoma lung cancer. After my diagnosis, I had an upper left lobectomy on March 22, 2019.  I didn’t have chemo or radiation because as far as they could tell, they were able to get it all out with surgery. Thank you for being such a wonderful support system during this chaotic time in my life.  Lung cancer is not any easy topic to talk about.   This group has been so helpful to me.

    As I began to educate myself on lung cancer, I realized that I was lucky to have been diagnosed at Stage 1b – it was an incidental finding – I had no symptoms.   I’ve had two post surgery CT’s and one looked iffy and I had to go through another PET…but ultimately I was told that at this time there is no evidence of disease – and I am grateful. Like many of you, I wait with anxiety at each 6- month scan.  I’m due for one again in April.

    I’m  contributing to research by participating in studies related to identifying a gene that may have contributed to getting lung cancer.  I had a brother and a sister who passed away from lung cancer at ages 54 and 59 and lost another brother at 52 with a different type of cancer.

     Since my diagnosis I’ve become deeply aware of the fact that life is precious, and I’m becoming really good at doing things now rather than waiting as if I have forever to do what I want to do. It's a good way to live even if you haven't had a cancer diagnosis!  I’ve learned some things too…the importance of recognizing the people who were there for me and telling them how much I appreciate them… and then there were those who disappeared which was painful but still an important lesson.

    Thanks for your wisdom and support.


  6. Hi Lou,

    I had Stage 1B and was scheduled with my surgeon to follow up 6 months later.  In the meantime, I had some new symptoms around the 4th month post surgery.  I didn't feel comfortable with calling my surgeon with these symptoms because he seems so busy.   So, I wrote about it here and asked if everyone had a oncologist - I didn't and it seemed to me I should have one.     Many suggested that I see an Oncologist.  I did just that and was sent for a MRI with and without contrast which showed inflammation.  It turned out that the inflammation  may have been caused by the original surgery.  I am now back on the regular  6 month schedule and will have another scan in April.  While at the Oncologists office - my surgeon popped in and wanted me to know he was tracking my case.  So, it was good to know the Oncology team at the hospital talks to each other.   I believe after the scan in April if everything goes well it will be a year for the next one.  It sounds like the second opinion is the way to go.

    Deb


  7. Hi Amy,

    Welcome.  I was also diagnosed with 1B (upper left lobe), and it was found accidentally when my PCP ordered a chest X-ray for back pain I was experiencing on my right side.  I had a lobectomy in March of last year.  I didn't have chemo and so far so good on post surgery scans.  Glad you have the warrior attitude...it will serve you well!  Wishing you all the best with chemo...we're here for you.

    Deb

     


  8. Hi everyone,

    Scanziety...yet again! There was  pleural thickening or nodularity seen on my last CT with contrast.  It's been about 5-6 weeks since the last CT.  I don't think I'll ever get used to these scans - especially the MRI.  I am hoping that the inflammation is due to the lobectomy and resection I had in March.  If all goes well I can go a full 6 months without scanning!  Wish me luck.

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