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huj123

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  1. Hi All, sorry for the late reply. @jenwo - apologies - just seeing this. Sorry to hear about your diagnosis. How's your chemo treatment? Just an update for all: my mom just finished her 4 first chemo treatments with the triplet cocktail. She just received her first set of scans today and based on the scans, her bone mets seems to be getting worse/continuing to spread to other areas on her spine (she has "worsening sclerotic osseous metastases"). She meets with her doctor next week to discuss, but had a few questions: - Would we have expected chemo to have worked by now? Surprised that it had no effect to be honest. She's been receiving treatment every 3 weeks as a reference. - What should next steps be? If Chemo isn't working, what is next? Do we give it more time or try radiation? Switch to new drugs? She has the HER2+ mutation - is it worth going for the clinical trial? Would appreciate any insights and feedback.
  2. Thank you @Tom Galli - we met with 2 oncologists and they recommended the same treatment plan so feel pretty good right now. @LexieCatThank you for sharing! Did you ever use targeted radiation for those areas with lesions? Doctors seemed to indicate that it would only be for pain management only and for actually treating the disease. Is it possible to just zap different parts of the body that have the lesions? Also wishing you well with your treatment plan!
  3. @LexieCatThanks for the reply! How long have you been on that drug regimen? And how're you handling the side effects from chemo?
  4. Hi All, Apologies for the very delayed reply! It's been a hectic last few months...I hope you all are staying safe and well! Thank you for all the insightful tips - they have really helped me become much more knowledgeable about this disease. And I appreciate the personal stories, giving me hope. I have a few updates to share and would really appreciate your thoughts: Pulmonologist and Thoracic Surgeon recommended lobectomy because they thought the cancer was localized, even though the PET Scan indicated the cancer may have spread. We asked if we could speak to an oncologist and were told that the thoracic surgeon regularly speaks to oncologists. Thus, mom had surgery in February to remove the tumor We met with an oncologist in March, who took one look at the PET Scan and said it's obvious that this has spread to her hips and spine. We were enraged, because we then didn't understand the need for surgery - why would they recommend it, and no one told us about the cancer spreading to the hips...we absolutely would not have done surgery had we known this. We did a bone biopsy of her spine shortly thereafter, and it came back positive My mom has a rare mutation: ERBB2-Exon 20; she would have been eligible for clinical trials, but she only has metastases in her bones, so the lesions aren't considered "measurable". If she didn't have the lobectomy, she would've qualified (another frustrating element in all of this!) Mom also tested for PDL1, but just 3% only. Oncologist recommends a combination of two chemo drugs (Carboplatin and pemetrexed) and an immunotherapy (Keytruda). She said we would need all 3 through IV (or least the chemo drugs...not sure if this corresponds to Keytruda as well), every 3 weeks for the next two years. Surprised they would recommend chemo for that long/consistently...is that in line with what you all would expect? Thank you for all the support and appreciate all the guidance!
  5. Thank you @Tom Galli! I met with her last weekend and walked through the steps together! We are both trying to maintain a very positive attitude! Thank you @GaryG - really appreciate the kindness - I actually may need your advice (update below): Update: Mom had an MRI of her brain, which did not find cancer. She just took a PET Scan on Thursday. Seems like there was hypermetabolic activity in my mom's lymph nodes (SUV Max 9.5), and in her lungs (SUV Max 9.8). The organs were fortunately clear. However, in the bones, the PET Scan recorded metabolic activity in the spine (different areas had SUV Max of 4.5 and 5.7 respectively) and humerus (SUV Max of 5.0). The tricky thing is that my mom has arthritis in these areas (so perhaps that's why the PET Scan lighted up), but she mentioned that the shoulder pain has gotten worse over the course of the last year, which I thought was originally because of the spread of cancer. The doctors came back (after the PET Scan) and said that it doesn't seem like the cancer has spread to the bones (even though the PET Scan seems to indicate there's some activity there), and they would like to be aggressive and would like to perform a surgery to remove the lung tumor (mom will have a lymph node biopsy before to see if lymph nodes can be removed as well). We asked about the metabolic activity shown in her spine on the PET Scan, and they said that they could not definitively state it wasn't cancer (so it could actually be cancer), but that they would still like to proceed with surgery first because it presents an opportunity for a cure. They said they most likely won't know until they open my mom up during surgery, whether the spine indeed has bone mets, and so they would end up treating her bone mets after surgery with targeted therapies if necessary. We asked if we could do a spine biopsy before the surgery and they said it could delay the surgery (I feel like surgery won't happen for another minimum 3-4 weeks, so I feel like there's time?) Does this seem right to you all? It feels backwards? I feel like the doctors should be checking to make sure the cancer hasn't spread first before recommending surgery? Otherwise surgery feels like an unnecessary risk...I'm surprised they're moving towards the more invasive procedure without knowing if there's bone metastases because I would think you would want to stop the spread first. Unless their logic is that they think there's still a shot that this hasn't spread yet, and would like to do surgery ASAP. I also don't believe they've tested for biomarkers yet even though initially they said they would (although this is still unclear, perhaps they have and they have not communicated results). Planning to get a second opinion but would love everyone else's thoughts.
  6. Hi All, Hope everyone is doing well. Just wanted to provide an update: mom completed the biopsy earlier this week, and doctor called back today saying that it is non-small cell adenocarcinoma. MRI and PET Scan are upcoming in the next two weeks to determine staging, so I will share more results then. Doctors mentioned that the results from the biomarker testing will be available later this week, so will share some more detail soon. Thank you all for the support!
  7. @GaryGThat's really good to know! The doctors mentioned they will be testing for biomarkers, and their goal is to extract a very large sample of the tissue. Hoping we don't have to do this a second time @LexieCat: that makes sense! That context really helps out. Agree with both you and @GaryG - at this point diagnosis is most important - shouldn't be concerned about the type of biopsy. I have relayed this to my mom. @JennedyThank you for sharing your story. I honestly wish there were some kind of diagnostic blood test that would be a part of an annual physical that would show whether the lungs are doing ok. How are you doing now? Have your post radiation symptoms improved? Just as an update for everyone: because of COVID, the doctors are requiring that patients take a COVID test 4 days prior to the scheduled biopsy appointment (really frustrated this wasn't communicated until today!). Unfortunately, due to availability of the doctors, this means the biopsy can't be performed until next Wednesday, with a PET scan to follow if biopsy returns positive for cancer...I guess I just have to try to be patient over the next 2 weeks....
  8. @GaryG @Donna G @BridgetO Thank you all for the extremely helpful responses, details, and stories! I am holding onto hope and will update everyone once I learn more. I will absolutely make sure doctors test for biomarkers - this seems very critical! One last question: is there any concern with the radiation of receiving the CT-guided needle biopsy? I would rather the pulmonologist perform a bronchoscopy or an ultrasound guided needle biopsy, but obviously, I think the most important thing here is choosing a procedure that removes enough tissue for accurate bio-marker testing. Curious what you all think about this? Thank you all and God bless!
  9. Hi All, After a CT Scan, the doctors found a mass that is about 5cm in the upper lobe of my mom's left lung. They mentioned that the cancer may have also spread to the shoulder joint (my mom has been experiencing some shoulder pain over the last few weeks so I guess this explains it). Doing some research, it seems this is what is known as a pancoast tumor in the lungs. It seems to be pretty rare, but was wondering if anyone has dealt with this before? There's a lot of outdated statistics online and I don't really see too many stories of how people handled treatment options (or perhaps it's similar to other non-small cell lung cancers). Would appreciate it if anyone has any information or tips to share. Also - if the tumor has spread to the shoulder, does that mean it's metastatic cancer? Or that the tumor has just gotten so large that it's putting pressure on the nerves/bones in that area? Mom is doing a biopsy along with other imaging work this week (stupid holidays really delayed us by a few days!). This totally caught us off-guard! My mom is 64, exercises regularly, eats very well, never smoked...really blown away by this. I also just want to say thank you to everybody who is willing to share their stories. I've learned so much about treatments offered and love the hope and optimism that everyone carries. Thank you all!
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