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CIndy0121

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CIndy0121 last won the day on September 23 2015

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About CIndy0121

  • Birthday 01/21/1952

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  • City
    South Hadley
  • US State (if applicable)
    MASSACHUSETTS
  • Country
    USA
  • Status
    Lung cancer patient/survivor
  • Interests
    Lung cancer, immunotherapy

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  1. Welcome. Hopefully you won't be needing much support for yourself. You had only radiation 14 months ago and no treatment since? How often have you had scans and is your status NED? Cured? Stable? You must be anxious about changes on your scan Monday. Let us know your results after your appointment Wednesday. I hope you get a good report. Cindy
  2. Welcome, Shoo2! This is the place for getting your feet wet, because you already know and are prepared to do, there's no alternative to diving in to the testing and waiting and appointments. I gather your husband had an inconclusive biopsy. Was it by needle or bronchoscopy? I don't want to get ahead of what you already know for sure, but I did want to affirm that you have dipped your toe in the right place, so "come on in; the water's fine". (Seriously, I don't always post in complete cliches.) I'll be watching for you post when you get your PET results next week. Cindy
  3. I am really struggling with my eosinophil white blood cells going up every two weeks and are now at 3.2 (absolute). That's awfully high to be ragweed! My oncologist put me on a treatment break. BMS said there was no"data in clinical trials" about eosinophils. Can anyone help?
  4. Perhaps because she tested EGFR positive, they didn't need to look to other mutations to determine the best treatment. Someone please correct me if I am wrong (I am EGFR negative and I have no idea what L858R means), but that's the mutation that has the most targeted, effective treatments. Stage IV eliminated surgery and radiation options for me; my metastasis is to the other lung. Hope someone will chime in if they think some radiation or surgery or ablation might also be appropriate to try to get rid of or shrink some of those bone, brain, liver mets. Sorry I can't be more helpful; my (limited) understanding based on my personal situation is that metastatic cancer can only be treated with a systemic treatment. Sent from my iPad using Tapatalk
  5. CJ, I imagine the unsuccessful attempts to repair the tear and whatever damage those procedures left behind is a major factor in the decision of how to proceed. It sounds like a "tumor board" or at least most of your entire treatment team met today. I hope their collective input about the cancer, radiation possibilities, lung function and surgical possibilities arrives at a recommendation that makes sense to you and answers all of your questions. You have the right to each of their expertise with the understanding that, as you know, they are no guarantees. But they're the experts and you're the patient, and you need to be able to make a well-informed decision. Will both lobes need removal or just the one affected by the damaged artery? Is it the same lobe that your cancer/tumor is in? Is a biopsy of the lymph node being considered, or is the size of it the reason they want to wait a few months and see if it's inflammation that subsides or a possible metastasis? I can't imagine what it must be like to be so young and anxious to plan your future, but have to wait for so many answers. It's encouraging that the meeting was today and not planned to wait until another look at the lymph nodes in a few months. Where are you being treated? You could get a second opinion, especially if they do recommend surgery. With the complications you already have, you want someone experienced enough for you and that surgeon to be confident in his or her ability. We know what a difficult time you're going through and we've all been there. Please keep us posted, but also don't hesitate to reach out if you're feeling the need for more support. Best wishes to you, CJ. cindy
  6. I'll "weigh in". Pearl, Your doctor may have a medical situation in her family, but that should not put your medical situation on hold. Another doctor or nurse practitioner should order the needle biopsy at the hospital they are associated with. It's an outpatient procedure done by an interventional radiologist. Or they should schedule you for a PET scan at the facility they work with for those, but only a biopsy can confirm cancer. If they refer you to a thoracic surgeon, they can order the biopsy. If it is cancer and operable, that's who would do it. This is when you need to advocate for yourself and tell them what you need. If it is positive, you wouldn't be going back to a pulmonologist anyway. You would work with the surgeon or radiational or medical oncologist depending what treatment is decided upon. I know it's awful to be stuck in the unknown and scared and confused...and it's a holiday weekend. My center is open tomorrow even though they're closed Tuesday, but calling tomorrow is worth a try. Definitely Wednesday. Then let us know where things stand. You need to know that something else is scheduled sooner than another office visit at the no of the month. We'll be thinking of you. Cindy
  7. Julie, Tom has provided a wealth of resources and support regarding the EGFR mutation. I tested negative for it, so my limited knowledge of it is limited. I have encountered many other patients who have been on Tarceva for a very long time, and I'm hearing about other targeted therapies in development and trials. What I CAN empathize with is being diagnosed with stage IV NSCLC adenocarcinoma. It is so overwhelming, even being seven months into the process. I totally understand the anxiety you must be feeling this evening about your scan tomorrow. When will you get results? Now that all your diagnostic tests and procedures are complete and you have a treatment plan, hopefully you will continue to live your life the way you always have without having to devote much time, attention of discomfort from side effects to your cancer. It will be natural for you to anticipate the periodic scans with anxiety because that's the one moment, the results of which, so much depend. So, I'll be thinking of you and looking forward to your sharing your news in the coming days. Thank you for sharing your story with us. Cindy
  8. Laura, For your lives to change so drastically in such a short period of time must be overwhelming for you. All of us here are so sorry to read about your situation. I am glad you are satisfied with hospice services so far and I'm glad you have felt you could share here and be supported. I too had no lung cancer symptoms until it was found accidentally and had already advanced. THat is true for many lung cancer patients. If you have already been dealing with CF, why would you ever suspect lung cancer? We are thinking of you and sending prayers for comfort for your husband. Cindy
  9. Carol, Hi! I am also stage IV adenocarcinoma. I was on Alimta for about six months between my standard first line chemo and the immunotherapy I am on now. My creatinine levels were always normal on Alimta, but started fluctuating about a year after starting Nivolumab. What are his numbers? I took a treatment break at 1.8 and took prednisone for a short time to see if that would get it back under control. It has lowered a little and stabilized around 1.4, but they won't give me IV contrast with my scans unless it is <1.3 (?) I have a referral from my PCP to a nephrologist, but need to reschedule the appointment because I have a conflict. Make sure he dos drink the proper amount of water, don't use ibuprofen, get plenty of sleep, stay active and try eating things like: cauliflower, berries, cucumber, cherries, dried apricots and incorporate chamomile tea, cinnamon, lemon juice, cranberry juice and limit salt intake, dairy and other foods high in potassium and calcium. Maybe if I was more diligent about those things, mine would be lower too. I'll let you know if I get in to see a specialist soon. cindy
  10. I would think only tissue samples would tell if they are in fact two different primary cancers or if one is a metastasis of the other. just a thought, Cindy
  11. I was diagnosed at stage IV with nodules in both lungs. I was only eligible for chemo. Under what circumstances is radiation an option? Cindy
  12. Welcome, Laura, How was it confirmed to be malignant if you haven't had a biopsy yet? For now, I'm just saying we're here to support you. You are probably feeling quite overwhelmed and have a very busy week coming up. Please keep us updated as the results come in and as you decide on a treatment plan. Tom, How can I find out more about the possibility of the SBRT for lung nodules you mentioned? Thanks, Cindy
  13. Where was your "metastatic" tumor? How much did you have to go through for your doctor to decide that surgery was a viable option for you? Sent from my iPad using Tapatalk
  14. I had one half way through, but we're all different, so don't be worried about a different schedule with a different treatment on a different schedule. My first protocol was cargo/taxol/avastin every three weeks for four treatments.
  15. Taxmeless, We understand your fear because we've all been there. My best advice for you in your situation is to try not to get ahead of what you know to be happening. In other words, things that can only be confirmed by biopsy or scan, and not everything you read online. The unknown and waiting can be the most difficult time, so try not to let mere possibilities make it even harder. It is correct that smaller nodules are below the resolution of PET, but the good news is probably that there was not visible uptake in any other parts of your body that would indicate metastatic disease. I have not heard that elevated calcium or liver enzymes are indicators that cancer cells have already entered your bloodstream. In fact, I was diagnosed with stage IV (metastatic) NSCLC adenocarcinoma over two years ago, and my levels have always been within normal ranges. Your next procedure should probably be a chest CT scan with contrast that is able to detect whether there are more nodules, even as small as 2-3 mm, in the same lobe, any of your other lung lobes or in any lymph nodes. Always remember going forward that each of us is different, and our sharing our experiences does not mean you will have the same findings or diagnosis. I had two needle biopsies after the "standard" 90-day wait and see because my CT scan showed multiple solid nodules and ground glass opacities in both lungs and consolidation (that looked like infection). Both were positive. I am glad that the use of low dose CT scans for folks at risk for lung cancer are becoming more widely used and are both detecting cancers early and concluding some suspicious nodules to be benign. I am only guessing that your use of "wedge biopsy" means that someone has suggested that if indeed the 8 mm nodule turns out to be the only one you have and has increased in size to 9 mm, for example, that they take a small wedge of that lobe and then, of course, biopsy the nodule within it. Depending where it is located, a thoracic surgeon (interventional radiologist or oncologist) may be able to do a needle biopsy. My largest right lung nodule was also only 8mm but was behind a rib and breast tissue, but they were able to get enough to conclude the tissue was the same as the left lung biopsy which was clearly adenocarcinoma. I'm not personally a fan of the wait and see, but you must be about half way through the 90-days by now. So, I would have your PCP schedule, minimally, a consultation with either a pulmonologist (I'd have skipped that myself, but hindsight is 20/20) or thoracic surgeon and a chest CT with IV contrast and proceed from there. I never mean to overwhelm a "Newbie" who, by definition, is already sufficiently overwhelmed, but we do want to allay your fears and give you some hope. Always have hope. Please let us know how things are going.
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