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Roz

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Roz last won the day on June 22 2020

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About Roz

  • Rank
    Over 100 Posts!

Profile Information

  • City
    Wayland
  • US State (if applicable)
    MASSACHUSETTS
  • Country
    USA
  • Gender
    Female
  • Status
    Lung cancer patient/survivor

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  1. Roz

    The Roscopal Effect

    Thanks so much Bridget! I'm so hopeful that this will help others!! Best, Ro
  2. Roz

    The Roscopal Effect

    Hi LexieCat and Tom and BridgetO, Thank you for your responses to my blog. LexieCat-deciding on a clinical trial is a really tough process. I carefully looked into the research and then went with what my medical oncologist believed was the best option. For my second trial, I also had a second opinion from a different medical oncologist and both agreed it was worth trying I wouldn't go into a trial unless you were physically ready for it. The side effects can be quite nasty, depending on the drugs involved. Luckily, once you are off the trial, the side effects eventually go away.
  3. I’m telling this story so that others who find themselves in a similar situation, ask this question, “What about the “Roscopal effect?” When diagnosed with NSCLC-mucinous adenocarcinoma, in the summer of 2017, I believed that my medical team had all the answers when it came to my treatment. However, after a lower left lobe lobectomy in September 2017 (with an 8.3 cm mass), I started to ask more questions and gather more information. My thoracic surgeon and I decided together that the next course of action should be removal of my upper right lobe which was done in October, 2017 via
  4. I’m telling this story so that others who find themselves in a similar situation, ask this question, “What about the “Roscopal effect?” When diagnosed with NSCLC-mucinous adenocarcinoma, in the summer of 2017, I believed that my medical team had all the answers when it came to my treatment. However, after a lower left lobe lobectomy in September 2017 (with an 8.3 cm mass), I started to ask more questions and gather more information. My thoracic surgeon and I decided together that the next course of action should be removal of my upper right lobe which was done in October, 2017 via
  5. Roz

    5 Years!

    Congratulations on your 5 year Cancerversary Susan!!! Wonderful news!! Ro
  6. Roz

    Phase I Clinical Trial

    Thank you to everyone who replied to me! I'll update as I navigate my options! Best to all! Ro
  7. So, on December 1, I started a Phase I clinical trial (RMC 4630 + Cobimetinib) in the hopes of stabilizing or slowing the growth of my Stage IV NSCLC KRAS G12D mutation. However, after 8 weeks, the CT showed accelerated growth of the cancer in both lungs so I'm now off the trial. There don't seem to be viable options for KRAS G12D.. The onc is suggesting Taxotere. Anyone know of anything that is working with KRAS G12D? Thanks, Ro
  8. Great news Jack!! Best, Ro
  9. Actually, how do I get into the patient zoom meet-up that's tomorrow (Friday, July 31st)? thanks, Ro
  10. No problem!! Thanks for explaining it LexieCat! Ro
  11. How do I get into the Zoom meeting? thanks, Ro
  12. 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,
  13. Roz

    CT Scan Results

    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
  14. 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
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