CIndy0121

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

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

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?

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

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

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

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

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

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

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

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

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

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

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.

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.

Brandon, This diagnosis will flip anyone's world upside down, but a 29 year old? I am sorry because I know how stunned you must be. Stage 3a means it is confined to that top lobe on your right, correct? Did they tell you why it is not operable? I cannot tell you what to expect from radiation because I was not a candidate for that either. I have stage IV NSCLC adenocarcinoma in both lungs, so I have only had chemotherapy, but I also had carboplatin and paclitaxel. Will you have both concurrently for seven weeks? How many times per week? It sounds like they are going after it very aggressively. My chemo treatments were three weeks apart, so perhaps someone with an experience closer to yours can tell you more about what to expect. I had a relatively mild experience. They do also administer pre-treatments like Benadryl and zofran to try to head off the nausea and other side effects. After an infusion, I was tired, sometimes a headache, some nausea, but not vomiting, did not lose my appetite, but definitely craved some foods and couldn't even look at others. My hair started falling out two weeks after the first treatment, so first we just cut it really short, then just shaved it. I guess you have learned that smoking is not the only reason people get lung cancer. You are so young. Did you talk with the oncologist about whether it might be helpful to know if exposure to something in your environment was a factor? Were you in the service or do you know if radon gas has been detected in an area where you lived for a long time? I'm sure you will receive more helpful responses, but do keep us posted. Wishing you the best possible treatment experience and outcome. Cindy

Are you sure it isn't 9mm or .9cm? Neither the CT nor the PET will confirm if the nodule is cancerous or benign. It may show "activity" in another part of the body that might heighten their suspicion. Depending where it is located, they may do a needle biopsy. If the PET reads clear, they might also suggest a resection of one lobe that would remove the single nodule. Or they may ask you to wait and scan again in 3 months to see if there are any changes before deciding what, if anything, to do. You should be hopeful that if everything else is clear, even if they are correct in their suspicion, you might be diagnosed at stage I which is curable by the method(s) you decide together. Until then, that's what it is..."suspicious". Let us know what else you learn. Cindy

Sydney, I am sorry for the reason for your Google search, but I am glad you found us. Your story has remarkable similarities to mine in terms of the consolidation, being asymptomatic, treatment for infection, repeat imaging, bronchoscopies, pulmonologist, thoracic surgeon and biopsies ending with a diagnosis of stage IV NSCLC adenocarcinoma. The difference is that was almost three years ago when I was almost 30 years older than you. You sound like you have "accepted" the medical situation and have already donned your "determined" patient hat. I had to laugh at my first meeting with my oncologist when he said that one of the things I had going for me was that I am in excellent health! It really does help as does staying active and social. I am glad you have a mutation that has a targeted therapy. That certainly eliminates trying to make sitting in an infusion suite all day part of your new normal. Does Howard's teaching hospital have a cancer center? You also referred to your oncologist positively which is crucial. You will have the support and resources of already being affiliated with the hospital, but that one key relationship is crucial; you're putting your life in her hands and you should feel that you can trust her implicitly. Which medication will you take? Tarceva? When will you be starting it? Please keep us posted here on how you are doing. Something tells me you're someone who is never going to give up. Always have hope. Cindy Sent from my iPad using Tapatalk

Tom, as always, has given you a lot of good information to help bring some structure to your steps forward. We are all able to empathize, and there's always agreement that the initial diagnosis and staging and getting your treatment plan in place just adds to how overwhelming the thoughts and emotions are when you're probably still in some degree of disbelief about the whole situation. What additional information did your PET results provide that you didn't have in January. I too was diagnosed at stage IV and chemotherapy was my only option. We all have loved ones who are always first and foremost in our minds...both for them to understand, but also to protect them. But you used the word "fight" and ultimately it is your fight. Women, wives, moms, grandmas, etc. aren't accustomed to putting themselves first. It's okay to be more assertive and insist on your needs being met with your medical team. Relationships and communication will settle down somewhat, but you need to know that there is hope, that many people have been successfully treated and are still living their lives with cancer and you can too! Please stay connected with us here. I know you will find it very supportive.

I agree that your PCP is your health care advocate and should be able to expedite your diagnosis with the appropriate specialists. This is just my experience and my observations from posts by many other patients. I would go as directly as possible to the needle biopsy by an interventional radiologist. Of course, bronchoscope and needle biopsy do both depend to some extent on the location of the tissue to be sampled. I cannot tell you how many times I have read that someone's bronchoscopy reported either "inconclusive" or "no malignant cells". Mine was Sept. 30, but my final diagnosis by needle biopsies of both lungs wasn't made until Jan. and Feb. (stage IV). It will ease your mind if it is negative, but if it is positive, you will still need to get to a medical/lung oncologist and complete the staging process. The scheduling and appointments is overwhelming on top of the devastating emotions and thoughts about the possibilities. We admit that it is difficult; we can say that because we have been there. We all hope and pray for the best possible outcome for you. The best advice you will get (and you will get it repeatedly) is that you have to be a proactive self-advocate. Please let us know if you make any progress next week. cindy

Patrick, Where you go from here depends a lot on the results of the rest of the diagnostic tests and staging. The biopsy will confirm cancerous (or not) and what kind (Adenocarcinoma, non-small cell, small cell, squamous, non-squamous). I don't mean to throw too much new, overwhelming terminology at you. In fact, my belief is that you try to take it one step at a time and not rush into anything like "packing your bags". They will run a genetic profile of the biopsied tissue because there are some treatments that are better than others if she shows specific mutations that have a targeted therapy available. They should also test for PD-L1 in case she is eligible for Keytruda immunotherapy as a first line infusion treatment (vs. chemotherapy). While that is being done, they may also get a PET scan, brain MRI and bone scan to make sure that lung mass is the primary site and the cancer has not spread to any of the other places in the body that lung cancer most frequently metastasizes. Your treatment decision begins when your oncologist can explain all the results and all the options to you. I have stage IV non-small cell adenocarcinoma which spread to my other lung which made me an "automatic" stage IV and therefore not a candidate for any surgery or radiation. Just because you describe it as large and near lymph nodes, doesn't necessarily mean that it is inoperable, or couldn't be shrunk with some radiation, so try not to panic. Also, we all know you want the very best care for your mom, but when you get to weighing her first treatment, the cancer center nearest you and where she would be most comfortable, you may decide it's unnecessary to travel right away. I am still being treated 20 minutes from home and am confident that any second or third opinions would have concurred with the treatment decisions we have made so far. I cannot speak to radiation and surgery; she will be fortunate to be given a surgical intervention, but there are other members here who are experienced with dealing with surgeons and/or radiation oncologists. You may also want to check out the Inspire forum on the American Cancer Society website. Best wishes to you and your family. Many of us here know exactly how much is being thrown at you right now and that can cause additional anxiety and urgency. You can look up the standards of care and recommended chemo drugs for her stage of cancer. I am doing what I cautioned you not to do. Don't get (too far) ahead of the information you have available. Insist that the pulmonary or medical oncologist explain each step and answer every question that comes up. Have another set of ears at her appointments to take notes both initially and during side effect conversations. Welcome to a group that nobody wants to have to join, but we're sure glad it's here! Cindy Sent from my iPad using Tapatalk

Deirdre, I have had two needle biopsies, one in each lung. For the first one they gave me some Versid(?), or whatever they call that "twilight" drug. It wasn't nearly enough. MIne were both CT scan guided. They are aiming for something really small and because your lungs move when you breathe, you have to be completely still. I didn't like the interventional radiologist's "bedside manner" and it did hurt a little, but not too too much and the procedure doesn't take an unbearable length of time. When I went in for the second one, I really liked the guy a lot and I was more relaxed, but I told him flat out that I'd done this once before and I want more drugs. They put it in your IV, but if I made the slightest sound while he was working, it felt like he also was able to release some kind of numbing medication so not only was I completely relaxed, I couldn't feel the needle at all. PLUS, I motioned for more in my IV so he told the nurse to go ahead, which she did. It didn't hurt at all. So, I'd tell them you know it can be done painlessly. My two were like night and day, and the second one was trickier because it was small and behind breaat tissue and a rib. Cindy Sent from my iPad using Tapatalk

I feel great this week, but I have a treatment tomorrow. It was my "middle week" that was so painful. I'm having a chest only scan on Oct. 9 to see if the little spots that look like infection that we treated with antibiotics are gone, the same or larger. If they are not gone because they are not, in fact, infection, my onc said that even though they don't meet the criteria of progression, it would indicate that Alimta/pemetrexed isn't helping me so we'd be seeking approval for immunotherapy from my insurance company. I'm kind of hoping it was infection so I can "ride" Alimta maintenance as stable a while longer and keep Nivolumab "on the shelf". The weepy, emotional stuff didn't last long, either, Thanks for asking. I think a lot of it had to do with my questions about the new nodules as described on my scan report. That "heading" turned out to be typographical error! One that made a huge difference to the patient, but apparently didn't alarm anyone else. My husband is calling me for dinner. What a guy! Cindy Sent from my iPad using Tapatalk

I can't figure out the different places for "Introduce Yourself" and "My Lung Cancer Story". I have written both, but someone read my introduction and asked about my cancer story. How do you navigate this site? Anyway, Sherie , I will update you on my treatment and how I am doing. I finished my first line treatment of carbo/taxol/avastin on May 21. My first 6-week scan showed improvement and my 12-week scan was "stable". So I continued on to pemetrexed(Alimta) maintenance and have had 5 infusions. My most recent scan showed "numerous new bilateral pulmonary nodules". Read the radiologist's report when I got home and am totally confused (until I see my onc on Monday). The scan report is worded "new nodules include: " and then describes the features from my previous scan report practically verbatim...location, size, etc. So, I'm not sure what's going on in there and it's frustrating! The doc said these reported nodules aren't large enough to be considered "progression", but we did speak briefly about the possibility of going to nivolumab after 1 or 2 more treatments and another scan. The report said the "new nodules" look like infection, so I did a zpak. My side effects have been a lot of hip, pelvis, thigh, knee, leg pain for the entire middle week; otherwise none. I want this whole new nodules question clarified first! How about you? Sent from my iPad using Tapatalk

Did your mom have a cisplatin or carboplatin combo as her very first line of treatment? Avastin isn't a chemotherapy drug and pemetrexed or avastin is usually given in combination with a "platin" chemotherapy. My experience was actually that the avastin raised my blood pressure. I obviously don't know as much about her cancer as her oncologist does, so I would trust that he is choosing treatments appropriately if she is having a good response. Sent from my iPad using Tapatalk