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Roz

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Posts posted by Roz

  1. Tom,

    I also did an NED dance for you!

    I wanted you to know that I took your advice and will see a radiation oncologist on Thursday on zoom for a consult.

    I'll let you know if there's anything he suggests!!

    I most likely won't be on the Friday night zoom this week because my son is coming in for the weekend. But I'll fill everyone in at the one after that.

    Best,

    Ro

  2. I met with my oncologist (virtually) and the scans show that the cancer has continued to grow in both lungs.

    It's also becoming more solid and the size of the multiple nodules is of concern.

    We are waiting until the end of September to see if I get a slot in the just activated clinical trial that I have been waiting for.

    However, she told me that she has no way of knowing who would get the slots. Apparently only 3 slots will open? She also thinks a Clinical trial is risky, without data on humans, and thinks I should consider different chemo drugs than I had in 2018. Since I have KRAS G12 D which to my knowledge hasn't been overly responsive to chemo, I'm extremely hesitant. 
    So, that's where things stand at this point.

    Take care everyone,

     

    Ro

  3. Hi Teri,

    If there's one thing to be sure of, there is nothing about lung cancer to be sure of. It seems like there are so many exceptions to what typically happens.

    Sounds like you have a great oncologist given the approval of your surgeon! As the options for treatment are presented, I know you will make the best decision for you and your particular cancer. It's so scary and the fact that 6 months ago everything looked okay is even more frightening. 

    I'm thinking of you and hoping there's a treatment plan put together soon!

     

    Best,

    Ro

  4. Hi Martha,

    I had my lower left lobe removed with VATS surgery in Sept 2017 and my upper right lobe was removed October 2017 by Thoracotomy because the mass was 9.7cm big and the surgeon couldn't do it with VATS. Sometimes when they get in there, they have to be ready to switch from VATS to thoracotomy. So, I have 3 lobes now. Recovery was definitely harder with the thoracotomy but there really wasn't a choice as it was decided during the surgery. I did fly the end of Dec. 2017 to the Bahamas prior to beginning chemo. I don't remember there being an issue with flying!

    Best of luck,

     

    Ro

  5. DebM,

    Did you have biomarker testing done after the surgery?

    I had the same chemo regimen as you and my cancer recurred. Initially, they said it was "spots" and they weren't sure. But after about 8 months they said it was recurrence on both sides.

    Once you know the results of the biomarker testing, you will know what options you have for treatment. Hang it there!!

    Thinking of you!

     

    Ro

  6. Hi Mam12198,

    I don't think it's necessarily a benefit to have the lung lobes removed. Everyone's case is unique. I had my lower left lobe removed in 9/2017 and my upper right lobe removed 10/2017. They got all the cancer and the masses were 8+ and 9+ cm in size. I had chemo and then the cancer recurred. They tried a phase I clinical trial with the personal cancer vaccine plus Tecentriq in May-June 2019 but it was stopped because I had 35% progression in the cancer. So, basically I have been waiting for a slot in a Phase I trial for a long time. There is no treatment for my kind of cancer (NSCLC-mucinous adenocarcinoma KRAS G12D)...So, waiting is all part of this process. My cancer has continued to grow and is in both sides of my lungs but it's considered a more gradual growth and I'm asymptomatic. Let me know if you have any questions and best of luck to you!

     

    Take care,


    Ro

  7. Braxton,

    I was perfectly healthy with no symptoms except that out of the blue I coughed up a small amount of blood. My PCP sent me to an ENT first.

    The ENT sent me for a chest XRAY because her exam didn't show anything. The chest XRAY was cloudy so they put me on antibiotics thinking I might have walking pneumonia and told me to return for a repeat chest XRAY in one month. Since the repeat XRAy looked the same..I was sent to a pulmonologist. Following a bronchoscopy, there still was no certainty of what was going on. 

    To make a long story short, with no predisposing factors, I was eventually diagnosed with Stage IV NSCLC mutinous adenocarcinoma.

     

    My advice-do not wait...get this checked out immediately!

     

    Best,

    Ro

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