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  1. Today
  2. Update: Surgery scheduled for July 14. Unless the COVID thing gets even worse and they have to reschedule. Electives were on hold last week but they called yesterday to get me on the calendar. I am a bit concerned about the safety of being in the hospital during this "surge" and there's supposedly a coding system for who they save or not if things get bad and they run out of space or resources. I don't know how much of that would be relevant to my surgery/hospitalization but with this being "a hotspot" and all the talk on the news, I'm nervous! Trying to stay busy and not dwell but it's challenging! One minute I'm fine and the next I'm shaking. Meanwhile it's 6 weeks since the biopsy/chest tube and I still have pain in my back. It's not "I have to take something for it" pain, but enough discomfort that it affects my sleep and some movements during the day. I don't know if this is normal, but everything I've read says recovery is a couple weeks, not 6 plus, and I'm not sure if I should call someone and if so who. Also if someone could direct me to some good resources on how to prepare for the surgery, that would be most welcome. Thank you all!
  3. Thank you Michelle. That's a great tip and an excellent link you shared. I might have even found someone nearby me. And Jack. Whatever I find that works I'd be more than happy to share with you. Fingers crossed.
  4. I got a surprise phone call today from my onc nurse today. The results from yesterdays CT is NED. I was NED during my year of Durva. It managed to keep my cancer away ... good news for all patients. What do you call seagulls that live near the bay? Bagels.
  5. Hi Sashjo I have experienced lichen planus off and on for years. Long before I got cancer. It started with me after I was put on metoprolol succinate for high blood pressure. I have not had it diagnosed officially but I saw the wickhams striae streaks and it comes and goes. Inside my cheeks. I have used oral rinses and it never gets unbearable. So far, the Keytruda (third dose last week, hasn't made it any worse. Please let me know if you find a remedy. Jack
  6. Hi Gary, I’m sorry that you’re in this situation, believe me when I say we understand what you are going through. A word about the EGFR test, hopefully the oncologist is doing what is referred to as a full panel biomarker, also known as next generation sequencing/ comprehensive biomarker test. (All means the same thing). Why is this important? It helps determine how to best match your treatment. I had the EGFR and PDL-1 panel too. I was negative for EGFR and had zero PDL-1. I started the treatment that has been recommended to you also known as the triplet while we waited for the comprehensive panel to come in. Turned out I had the ALK Positive mutation (common with zero PDL-1). I was switched to targeted therapy (pills). Stage 3b is actually pretty rare as most lung cancers are diagnosed at Stage IV. As a result there is little consensus on how best to proceed I would recommend obtaining a second opinion to ensure all your options, including cutting edge clinical trials have been evaluated The triplet is now the standard of care for “garden variety” adenocarcinoma. Many people here have had that regime and did quite well. I’m sure you’ll hear from them soon. Glad to have you here! Michelle
  7. Yesterday
  8. Dear CLM Welcome to a group no one wants to join, but one that can provide you with a wealth of support and information! I am now in my 5th year "living" with Stage IV NSCLC and I'm an active member of LUNGevity, but I primary post in the LUNGevity FB Groups and have only recently started to post of the forums to meet new members and also try to support you. I still remember how totally overwhelmed I was when I first learned I had a brain tumor back on 3/27/15, after a very sudden onset of what I thought was Vertigo. I was just four week out of hip replacement surgery and all my pre-ops including a chest xray done before that surgery had all been fine? Once they found my brain tumor, I had more sudden neuro changes and was immediatley admitted to a Neuro Unit. A week later and many more tests, I learned that I had Stage IV LC that had spread to my brain. I also had a Pulmonary Embolism, despite have no chest symptoms, no breathing problems, no cough, not pain, nothing --- just two days of some dizziness and a feeling that something in my "head" was off? Thank goodness my PCP sent me in for the urgent Head CT Scan and that's how it all begin. Finding out I had Stage IV cancer while still recovering from the hip surgery was such a shock? How could all my labs nd chest xray have been fine? That's always been a question that no one can answer? I have given up now on trying to figure it all out and prefer now to focus on getting through this. I am very happy to now be OFF all treatment, "Stable" and doing well. My next scans will be coming up in August, and I have now been lfor almost 4 full years. I've had Stereotactic Radiation for the brain tumor which is fully resolved and has never returned and also then started on Chemo for the Lung tumor (nodes), followed by radiation and then Immunotherpay (Opdivo) which I feel was my life saver. Please let us know how you are doing and how your appointment went with the Oncologist. I wish you the very best - take care Lisa
  9. Dear Jan, We have all been where you are today and we all know how overwhelming and frightening a Lung Cancer Diagnosis can be. Please also know that there have been many advances in Lung Cancer treatments in the past few years and they are more and more LC patient's living long lives. I am now in my 5th year and started in March 2015 with a pretty grim diagnosis. I had a sudden onset of what I thought was Vertigo, but it ended being a brain tumor, and ultimately it was a "met" from Stage IV Non Small Cell Lung Cancer. It was 56 years old and had just had hip surgery 4 weeks prior and had "passed" all my pre-ops (including a chest xray) without any problems. Needless to say it was a shocking diagnosis and I had not signs of symptoms of LC and still do not to this day. I've never had any cough, shortness of breath, chest pain or discomfort. I've needed been on or need oxygen. All I had was that sudden feeling of vertigo and went in for a Head CT Scan and they found a 4 cm brain tumor. Within hours, I lost my speech and the ability of us my right arm or hand. I was transferred to a neuro Unit at a larger sister hospital and when through a week of tests where they then learned I had a Lung Tumor, Lymph node involvement and also a Pulmonary Embolism - all a totally shock and all without any symptoms. Fast forward to today and I'm not over 5 years in, I'm 'Stable" off ALL treatment and have been on for almost four full years. I still see my Oncology eveyr 3 months for a visit and labs, have my port flushed every 8 weeks and have CT Scans every six months. I'll be under care forever, but that's okay as long as I continue to be able to Live Life! I wish you the very best and want you to know there are many others like me, who even with Stage IV are doing well ! LUNGevity is an amazing group and can provide you with a wealth of support and information! Please free free to ask us questions and we'll try and help you as best we can, based on our own experiences. I also agree with Michelle (do not use "Dr. Google" to find information. Much is outdated and it may make you feel even more overwhelmed. Stick with the large Lung Cancer groups like LUNGevity. if you are also on FB, we have several groups on FB and I post there on a regular basis. Let us how what you've done so far and what's going on and we'll be happy to support you.... Take care, Lisa
  10. GaryG

    Newly diagnosed

    I am glad I found this site. Sad to say it: Déjà Vu. In 2005 I lost my first wife of 30 years to colon cancer. We spend two and half years battling the beast day in and day out when we were given only 6 months. I am 74 year old male just diagnosed with Adenocarcinoma stage 3 B. Unfortunately my PD-L1 level is zero so Immunotherapy as only treatment is not an option. My cancer is quite large so radiation therapy is also not an option for now. The doctor wants to start me on carboplatin/keytruda/alimta. He mentioned that the PD-L1 level is not a true indicator of success/failure and that he saw many positive numbers not respond to immunotherapy while some negative number responded well to carboplatin/keytruda/alimta. My question is: Did anybody have any luck shrinking the cancer with that regimen and if not are there any other options. The EGFR test result is not ready yet so the we don't know if target therapy is an option. Thank you for your help.
  11. Sheryl, Most of us have all been where you are today and we all understand the fear of the uncertainty and the unknown. I also remember how overwhelming that feeling can be. Please know it sounds like you are in good hands and they are trying to move this process along. The Diagnostic process is never nearly as "fast" as we would like and the wait for "results" can be hard and cause a lot of upset and anxiety. First, try to think "positive" and know that lung nodules can often be benign. I know they may suspect cancer, but for now and until you have that nodule biopsied, you just do not know. Secondly, if worst care scenario it may be cancerous it's quite small and that's also a positive thing because it may indicate it was found early and early detection is always the best thing in any type of cancer. It's also good new to know that your Pet Scan did not show any other suspicious areas. You've also come to a wonderful group where you'll find lots of support for many of us who are living with Lung Cancer. I'm now five years in with Stage IV (Non Small Cell Lung Cancer) an and I'm living life with stable cancer. a The entire LUNGevity team is amazing and they will be there to help guide you as you go through this. I WISH I had been as resourceful as you are know and had found LUNGevity early on in my cancer journey, for me it came later, but I'm been very thankful and grateful to have found such a wonderful group -- they offer so much and have so many other resources, you can reach out too if needed. Tom shared some wonderful links and I hope in reading those it will give you some more knowledge and possible some peace of mind. We will be thinking of you and hope you'll know more when you meet with the Pulmonary MD. In the meantime, try not to take "one moment at a time" and feel free to pop in with more questions or just to "chat"! Take care, Lisa
  12. iHi Sheryl and welcome here. Terrified is a completely normal reaction to being told you may have cancer. Now you're in waiting mode, which can be very hard. Tom and Michelle have given you some really good information. I only want to add that I was in a similar situation with a nodule discovered during a scan for something else. It was about the same size as yours. Long story short, It turned out to be a non-small-cell lung cancer, stage 1a. I had my lower right lobe removed by VATs (video assisted thoracic surgery) and I didn't need further treatment. Now, over three years later, I still have no evidence of disease (NED). I consider myself one of the "lucky" ones--if there is such a thing as lucky ones among people with lung cancer. Most lung cancers don't have symptoms until they are advanced and more challenging to treat. These early small ones are often sucessfully treated more easily. Hang in there. I hope your nodule turns out to be benign. If not, I hope it's as easy to fix as mine was. Let us know what questions you may have and how we can support you. Bridget O
  13. Thank you so much for replying. Since it was the cardiologist that called, he didn't give me a lot of detail. He just seemed very happy that the scan was "clean" other than the one nodule.
  14. Please take this survey to help Bio collect important information about non-COVID related clinical trial participation during COVID: https://www.surveymonkey.com/r/CSG5R6G Feel free to reach out if you have any questions. Thanks in advance!
  15. Hi Josh When conventional medicine gets stumped it’s time to seek out the Integrated Medicine Doctor, an MD who is board certified in this specialty. You can use the zip code finder here/ https://integrativemedicine.arizona.edu/alumni.html Most are taking insurance now with the same copay as the PCP. My doctor has worked wonders for managing the odd ball side effects that are just annoying enough to impact our quality of life. No need for any of us to suffer! Michelle
  16. Sheryl, We are glad you found us. "Very suspicious for cancer" is a serious descriptor and looking suspicious after a PET is no better. As for terrified, we understand! We've all been there. So, here is how I would proceed. I'd pray the 10mm nodule is indeed nothing to be concerned about. Here is my go to resource that explains pulmonary nodules and why they form. As you can see, they come in many types and sizes and most are not cancer. As for the PET, if you had more specific information about your PET, I might be able to explain "suspicious". Here is a blog I wrote some time ago that helps folks understand what a PET scan is, what is measured, and what standard uptake values (SUV) are of concern. It is a good idea to get actual copies of all scan and laboratory reports and keep them on file. You might use the time before your 15 July consultation to read into lung cancer and here is the best resource around. I would also recommend asking a family member or a close friend to attend your consultation and even ask the doctor if you could record the session. The vocabulary of our disease is daunting and it is helpful to have a second set of ears or a resource to answer the inevitable what was said question that seems to occur on the car ride home. Know also that a biopsy is the only way a lung cancer diagnosis can be confirmed and that is unlikely to occur at your forthcoming pulmonology consultation. I do pray your pulmonology consultation results in a finding of no evidence of disease (NED). Stay the course. Tom
  17. Hi Sheryl, You are not alone, we have seen your experience quite often and understand how terrifying the situation is. I recently found a good resource on lung nodule management that I think you might find useful in advance of the pulmonology appointment. It's about an hour, there are some sound issues in the beginning but they improve. Facts over fear, knowledge is power.
  18. I've been on Keytruda off and on for two years now. I've been so fortunate that it has kept my cancer pretty consistently dormant. One of Keytruda's known side effects is a skin condition called Lichus Planus. I have a terribly resistant ulcer on my lower lip. My oncologist and dermatologist have me gargling two times a day with Tacrolimus, which is an immunosuppressive drug. I also use a strong steroidal cream called Fluocinonide. Both are powerful drugs but my lip seems very resistant to them and isn't healing. My doctors seem stumped butd I trust them implicitly. Sometimes it's a hit or miss things treating immune system reactions. Has anyone else experienced this problem and/or had success with other types of treatments. Any suggestions or advice would be greatly appreciated. Thanks so very much. Be well everyone. Peace and gratitude - Josh
  19. Hi, I went in for a pre-op and had a CT of my heart done for heart ablation surgery. The surgeon called me the morning of my surgery and said my heart was beautiful but they found a nodule on my lung 10 mm that looked very suspicious for cancer. He then sent me for a PET scan, called me the day after and said the PET scan shows the nodule still looking suspicious but my scan was clean otherwise. I now have an appointment for pulmonolgy on July 15th. I am so terrified, and so grateful for you all on here.
  20. Just a reminder to sign up if you haven't yet and would like to join tomorrow!
  21. Kydindylou, Welcome here. Your husband has already been through the wringer in treatment and I'm sorry he is having adverse affects from immunotherapy. Your question--have we heard of pseudo progression with SCLC? First, consider pseudo progression is a term used to characterize growth of a tumor under immunotherapy assault. As it was explained to me, it is an inflammation of the tumor caused by cellular-level attack of the immune system against cancer cells. This attack causes swelling. It is a common occurrence with immunotherapy treatment. In truth, I've never heard about SCLC tumors displaying pseudo progression, but the mechanism of immunotherapy attack is the same for SCLC and NSCLC, so I venture the doctor's suggestion of pseudo progression as an explanation of small lesion swelling makes sense. I hope his adverse immunotherapy symptoms resolve from steroids and he can return to immunotherapy treatment soon. I also hope your scans 6-weeks hence show no evidence of disease or NED. More questions? This is the place. Stay the course. Tom
  22. I am new here, not even sure this is where I write this but here goes.  I have atrial fib and we recently moved to Florida from California.  I was so tired of dealing with a fib so I decided to do something about it.  I went to Mayo clinic and got all ready to have ablation surgery.  The day of my surgery, my surgeon called and said I have a 10mm nodule in my lung.  I was devastated, scared and felt so hopeless.  He set me up for a pet scan, had that and cried all the way through.  The cardiologist called me the next day and said the nodule looked suspicious still, but the rest of my scan was clean.  He is sending me to pulmo now.  I am still scared and not sure what is going on, but my appointment is on July 30th, (my birthday).  Thanks for listening everyone.  Your stories inspire me and scare me at the same time, but you guys are all great!!

  23. My husband had an original diagnosis of nsclc in March 2019,, then they realized there was an error and the biopsy needed to be sent to Mayo for a 2nd opinon, it came back both nsclc and sclc. Fast forward to after 4 different chemotherapies, progression to brain, so they did whole brain radiation and gamma knife on 6 lesions, it has remained stable, they put him on Imfinzi and he progressed to adrenal gland, which they removed, it was all small cell. He was then put on Opdivo/Yervoy for 4 cycles and made it fine until the 4th. His immunotherapy attacked his eyes and intestines and currently he is on 120 mg of prednisone to try and stop that. Just giving you a little history. My question is this, his scans from last week came back with several small lesions in his lung. The Dr said maybe pseudo progression? I understand what that means but have never heard of that with sclc at all. Have any of you? Just hoping for your thoughts on this. His brain and abdomen are still stable on these recent scans. The lung had remained stable until this go round of scans, they said they won't know for certain until they scan again in 6 weeks. He can't continue with the Opdivo infusions until his steroids are tapered down to 40 mg a day so for now here we are just wondering if anyone else with sclc has experienced pseudo progression.
  24. Hi Barb Yeah, I really think we know where you’re coming from, seeing is believing in this group. Sounds like you’re doing all the right things. If you have to go to the mattresses, call your State AG or Senator. That’s a headache the insurance company doesn’t want especially about a vendor. Keep making noise! Michelle
  25. Claudia


    I started on chemo and Keytruda in February 2019. I was taken off chemo in May 2017 and only Keytruda ever since My amazing Oncologist told me that I would be on Keytruda for a year after my first clean scan (NED). I'm not there yet bur I'm working on it. Peace, light and great scans to all, Claudia
  26. Last week
  27. Jan, It looks like you've got to meet some of our family here and they've given you good counsel. I'll also reiterate that you are not alone...when I was diagnosed I wrote myself off and 13 months after surgery I'm still NED (no evidence of disease). As you learn more you'll likely have many questions. This is a safe place to ask them and get answers based on first-hand experience. Lou
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