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Everything posted by Roz

  1. Roz

    5 Years!

    Congratulations on your 5 year Cancerversary Susan!!! Wonderful news!! Ro
  2. 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
  3. 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
  4. Great news Jack!! Best, Ro
  5. Actually, how do I get into the patient zoom meet-up that's tomorrow (Friday, July 31st)? thanks, Ro
  6. No problem!! Thanks for explaining it LexieCat! Ro
  7. How do I get into the Zoom meeting? thanks, Ro
  8. 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,
  9. 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
  10. 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
  11. 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 w
  12. CLM, Thinking of you! Hope you get some encouraging treatment plans from your doc! Best, Ro
  13. Jan J, I totally understand your feelings of being scared and having your life turned upside down. I was also perfectly fine one day, and then diagnosed with NSCLC stage IV the summer of 2017. What helped me the most was educating myself as much as possible about all the terminology. It's an entirely new language and it will help you with your doc visits if you know some of the lingo. Also, request that you record the visits so that you can listen to it later. It's amazing how much you miss when you are in the room with the docs, and when you listen to it afterwa
  14. Hi ChiMama, My dogs thank you for your kind compliment! Based on what my surgeon told me, everyone heals and recovers differently. That being said, it's really hard to know in advance how your body will respond. I had the VATS surgery (removal of lower left lobe) in Sept 2017, and then at the end of October 2017, I had the open thoracotomy (removal of upper right lobe). The recovery from VATS was fast and relatively painless. The recovery from the thoracotomy was harder. Even now, I still have daily issues/discomfort that are a result of the surgery. In my case, to get out the mass (
  15. I've been thinking of all of you!! It's not easy to have the "lifting" of the precautions in the air and various phases for Covid. I have been to the beach but with at least 6-8 feet between me and anyone else. But people are now onto outdoor dining with the 6 foot distance in place. I decided I should just email my Oncologist to find out what she thinks. So far, just staying in the house, or my car to go to the beach.... Be well everyone!! Best, Ro
  16. ChiMamma, I've had both surgeries and I'm happy to answer any questions. I think you are smart to get a second opinion!! Best, Ro
  17. Deb W, If you are in treatment I'm guessing your oncologist will suggest you continue to isolate. It's better to be too cautious! Hoping your chemo treatment works for you! Best, Ro
  18. Michelle, I agree with everything you said. I will also take a very cautious approach. I plan to try out the beach this summer and go from there. This is tough on so many levels, but knowing there's others out there really helps. I'm still waiting for a trial. It has been a long wait. I'm so glad your treatment is working!! Keep it up!! Best, Ro
  19. Tom, Thanks for your suggestions. My oncologist said to continue to isolate. I am not in treatment but I'm waiting for a trial due to continued progression. Makes sense to keep at least 6 feet away and keep a mask on outside. I think we will know better as the world opens back up and where the virus levels go up. I'm hoping to get some beach time in and plan to be as far as I can from others while there. Outdoor dining doesn't seem "safe enough" yet to me. I appreciate your help. Be well, Ro
  20. Thanks for this article! I appreciate it! Ro
  21. Susan, Let me know what super doc and super pulmonologist say. I feel like we are in unchartered waters now. I'm not sure the answers are out there. Be well, Ro
  22. I have been thinking about this nonstop. In my state, Massachusetts, they will begin to open up some retail stores, and restaurants with outdoor seating. Supposedly, people will be social distancing and wearing cloth/paper masks. How do we know what is okay to do, vs. not okay? For example, if you go to the beach and stay at least 6 feet apart from others, you are okay? But if you need to use the restroom, are you okay to do that? What about if you sit out on someone's back deck (let's say elderly parents), and wear a cloth mask. Is that okay? Again, what if you have
  23. Roz

    First Time Out

    Did I already miss the lung cancer summit?? Ro
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