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Roz

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Roz last won the day on June 22 2020

Roz had the most liked content!

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

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  1. I think it really depends on the results of your biomarker testing as Judy suggested. Having chemo after surgery doesn't prevent recurrence. As LexieCat said, her docs can't say whether it would have prevented her recurrence. In my case, I did it because even though I knew statistically it may not prevent recurrence, I didn't want to think that there was something I didn't do that was offered and therefore blame myself if it came back. So, I did do chemo after two surgeries (lower left lobe removed and then upper right lobe removed). The cancer recurred 8 months after that. What I learned from that is that chemo most likely wouldn't work with the kind of cancer that I have (KRAS G12D.) Had I not done the chemo I would have thought, well, if you had only done the chemo this wouldn't have happened. If your lobectomy is done using VATS, your recovery will be easier. Let me know if you have any questions! Best, Ro
  2. Steph, It might be a good time to get a second opinion. If you are waiting four months anyways, it won't hurt to have everything reviewed by another doc. Best, Ro
  3. Tom,

    Thanks for sharing the article from the Atlantic! This is interesting and I wish more people would be made aware of it's contents!

     

    Best,

    Ro

  4. Hi Iris, Unfortunately, it seems like recurrence often occurs with lung cancer. I'm hoping you get some treatment options that work! Best, Ro
  5. Roz

    The Roscopal Effect

    Thanks so much Bridget! I'm so hopeful that this will help others!! Best, Ro
  6. 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. Tom, I look forward to sharing the results of my future scans and am always hopeful for NED!! Best, Ro
  7. 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 open thoracotomy (with a 9.7 cm mass). Both surgeries had clear margins and did not have lymph node involvement. Biomarker testing revealed that both masses were basically identical, KRAS G12D. Surgery was followed by chemotherapy in Jan and Feb 2018, “to be sure any microscopic cancerous cells were killed.” I was NED (No Evidence of Disease) until about October 2018. Follow-up CT’s started to show gradually increasing “spots” in both sides of my lungs. Since there is not a targeted treatment for KRAS G12D, I went into a clinical trial in May 2019. This was for a personal cancer vaccine with immunotherapy (Tecentriq). Follow-up CT after 8 weeks on the trial showed accelerated growth of the cancer in both sides of my lungs so the trial was ended. After reviewing upcoming trial research, it seemed that the best course would be to wait for a trial to activate that included SHP-2 and MEK inhibitors. However, as more and more time crept by, the trial was not available. The Covid pandemic most likely contributed to this. At this time, I contacted a radiation oncologist to see if there might be a potential treatment for me with radiation. The day my radiation mapping was complete for standard radiation, the email about an available slot for the trial appeared and I needed to make a decision. So, in December, 2020, I started the Phase I clinical trial that involved taking oral medications (RMC 4630 and Cobimetinib). Follow-up CT after 8 weeks on the trial showed accelerated growth of the cancer on both sides. The mass in the lower right lobe was now about 9 cm in size. My oncologist suggested the next line chemotherapy (Taxotere/Taxol and Ramucirumab), but I remained skeptical about my odds of doing well with that approach. Here is where the story gets more interesting. Since my diagnosis I had been connecting with the online Lungevity forums. I found the supportive community helped me tremendously and I was also offering my own experiences to others. In the summer of 2020, I started attending the Friday night Lungevity zooms. Soon, I was participating, as often as possible, on Friday nights. One of my friends in the group, a 17 year lung cancer survivor, Tom Galli, suggested that I contact my radiation oncologist again, and ask about a form of SBRT or what Tom likes to call “precision radiation.” Tom explained to me about the abscopal effect, and somehow I knew that I had to give it a try. What did I have to lose? The Wikipedia definition states, “The abscopal effect is a hypothesis in the treatment of metastatic cancer whereby shrinkage of untreated tumors occurs concurrently with shrinkage of tumors within the scope of the localized treatment.” I reached out to my radiation oncologist and his initial response was that the abscopal effect rarely works, so what’s the point in doing it? I suggested that since I didn’t have any other viable options, it would be worth trying, because I really believed that the “Roscopal effect” would work. After consulting with my medical oncologist, he called me back and agreed to try 7 sessions of VMAT, (Volumetric modulated arc therapy), aimed at the largest tumor in the lower right lobe, however, he further stated that most likely it would not be successful. From February 18-26, 2021, I underwent 7 VMAT sessions. Then, I had my follow-up CT on March 20th. The results were available on the portal on Sunday March 21st. My instincts were correct. The CT showed reduction not only in the area targeted by the treatment (lower right lobe mass), but also in all cancerous areas in my right lung. In addition, the cancerous areas in my left lung also showed reduced size. When my doctors connected with me on Monday, they were amazed and surprised by the results. I was the only one who completely expected the “Roscopal effect” to occur. My radiation oncologist continues to be cautiously optimistic and is eagerly awaiting results of my next CT scan at the end of May to see if there is stability or further reduction. I want everyone out in the lung cancer community to know that it’s definitely worth the shot. Even if my joy in having my first CT that showed reduced size in the cancer might prove to be short-lived, it has been worth every moment. This needs to be studied and hopefully clinical trials will occur to find out which patients would benefit from this form of treatment. I believe that if it wasn’t for my Lungevity connections and Tom Galli specifically, this would not have happened. Everyone needs to be their own advocate and push for the treatment that feels right. I did that and the effect-”Roscopal.”
  8. 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 open thoracotomy (with a 9.7 cm mass). Both surgeries had clear margins and did not have lymph node involvement. Biomarker testing revealed that both masses were basically identical, KRAS G12D. Surgery was followed by chemotherapy in Jan and Feb 2018, “to be sure any microscopic cancerous cells were killed.” I was NED (No Evidence of Disease) until about October 2018. Follow-up CT’s started to show gradually increasing “spots” in both sides of my lungs. Since there is not a targeted treatment for KRAS G12D, I went into a clinical trial in May 2019. This was for a personal cancer vaccine with immunotherapy (Tecentriq). Follow-up CT after 8 weeks on the trial showed accelerated growth of the cancer in both sides of my lungs so the trial was ended. After reviewing upcoming trial research, it seemed that the best course would be to wait for a trial to activate that included SHP-2 and MEK inhibitors. However, as more and more time crept by, the trial was not available. The Covid pandemic most likely contributed to this. At this time, I contacted a radiation oncologist to see if there might be a potential treatment for me with radiation. The day my radiation mapping was complete for standard radiation, the email about an available slot for the trial appeared and I needed to make a decision. So, in December, 2020, I started the Phase I clinical trial that involved taking oral medications (RMC 4630 and Cobimetinib). Follow-up CT after 8 weeks on the trial showed accelerated growth of the cancer on both sides. The mass in the lower right lobe was now about 9 cm in size. My oncologist suggested the next line chemotherapy (Taxotere/Taxol and Ramucirumab), but I remained skeptical about my odds of doing well with that approach. Here is where the story gets more interesting. Since my diagnosis I had been connecting with the online Lungevity forums. I found the supportive community helped me tremendously and I was also offering my own experiences to others. In the summer of 2020, I started attending the Friday night Lungevity zooms. Soon, I was participating, as often as possible, on Friday nights. One of my friends in the group, a 17 year lung cancer survivor, Tom Galli, suggested that I contact my radiation oncologist again, and ask about a form of SBRT or what Tom likes to call “precision radiation.” Tom explained to me about the abscopal effect, and somehow I knew that I had to give it a try. What did I have to lose? The Wikipedia definition states, “The abscopal effect is a hypothesis in the treatment of metastatic cancer whereby shrinkage of untreated tumors occurs concurrently with shrinkage of tumors within the scope of the localized treatment.” I reached out to my radiation oncologist and his initial response was that the abscopal effect rarely works, so what’s the point in doing it? I suggested that since I didn’t have any other viable options, it would be worth trying, because I really believed that the “Roscopal effect” would work. After consulting with my medical oncologist, he called me back and agreed to try 7 sessions of VMAT, (Volumetric modulated arc therapy), aimed at the largest tumor in the lower right lobe, however, he further stated that most likely it would not be successful. From February 18-26, 2021, I underwent 7 VMAT sessions. Then, I had my follow-up CT on March 20th. The results were available on the portal on Sunday March 21st. My instincts were correct. The CT showed reduction not only in the area targeted by the treatment (lower right lobe mass), but also in all cancerous areas in my right lung. In addition, the cancerous areas in my left lung also showed reduced size. When my doctors connected with me on Monday, they were amazed and surprised by the results. I was the only one who completely expected the “Roscopal effect” to occur. My radiation oncologist continues to be cautiously optimistic and is eagerly awaiting results of my next CT scan at the end of May to see if there is stability or further reduction. I want everyone out in the lung cancer community to know that it’s definitely worth the shot. Even if my joy in having my first CT that showed reduced size in the cancer might prove to be short-lived, it has been worth every moment. This needs to be studied and hopefully clinical trials will occur to find out which patients would benefit from this form of treatment. I believe that if it wasn’t for my Lungevity connections and Tom Galli specifically, this would not have happened. Everyone needs to be their own advocate and push for the treatment that feels right. I did that and the effect-”Roscopal.”
  9. Roz

    5 Years!

    Congratulations on your 5 year Cancerversary Susan!!! Wonderful news!! Ro
  10. 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
  11. 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
  12. Great news Jack!! Best, Ro
  13. Actually, how do I get into the patient zoom meet-up that's tomorrow (Friday, July 31st)? thanks, Ro
  14. No problem!! Thanks for explaining it LexieCat! Ro
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