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Roz

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Everything posted by Roz

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

    The Roscopal Effect

    Thanks so much Bridget! I'm so hopeful that this will help others!! Best, Ro
  3. 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
  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 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.”
  5. 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.”
  6. Roz

    5 Years!

    Congratulations on your 5 year Cancerversary Susan!!! Wonderful news!! Ro
  7. 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
  8. 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
  9. Great news Jack!! Best, Ro
  10. Actually, how do I get into the patient zoom meet-up that's tomorrow (Friday, July 31st)? thanks, Ro
  11. No problem!! Thanks for explaining it LexieCat! Ro
  12. How do I get into the Zoom meeting? thanks, Ro
  13. 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
  14. 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
  15. 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
  16. 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
  17. CLM, Thinking of you! Hope you get some encouraging treatment plans from your doc! Best, Ro
  18. 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 afterwards, it really helps. Bring people with you to the appointment that can help with taking notes and asking questions. Ask any questions you have!!! Thinking of you, Ro
  19. 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 (9.5+cm big), she had to pull apart the ribs and then once out I believe 2 ribs were basically tied together.. She told me that some people have very little residual pain/discomfort a year down the road, and then there's a full spectrum of discomfort due to the nerves that are involved from cutting through the fascia..etc..She said there's nothing to be done for it at this point. My advice is to focus on what is best for you at this time. If the doc believes he/she can surgically remove the cancer through surgery, then listen to what is said about treatment after that. In my case, I had chemo and was NED for 7ish months. Then, the cancer returned on both sides gradually growing once again via multiple nodules on both sides...I'm currently waiting for a treatment/trial and continue to hope for something soon. Best of luck, and know that we are all here to help and to answer any questions or just to listen!! Take care, Ro
  20. 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
  21. 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
  22. 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
  23. 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
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