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  3. DeDe, I am glad you are able to get insurance and treatment. I am worry about running out of health insurance if/when my company may terminate my employment due to long term absence from work since April this year for heart surgery. Including this new lung cancer treatment, I might have to be off work for another 10 to 12 weeks. I don't think my employer is happy about me being off from work for so long. I am interested in what insurance company did you purchase your insurance from? And what is the cost for monthly premium, max coverage amount, deduction, max out-of-pocket cost, copay, and coinsurance, etc..? Are there any requirements such as age, preconditions, etc.. for this insurance? I may have to buy private insurance like you if my employer terminate my job. Also, if your doctors were unable to biopsy your lung nodule, how do they know it's lung cancer?
  4. I just learned from my Oncologist that they (her and a consulting Onc who has recently published a paper on MET Amplification) have determined that Crizotnib is more likely to be effective if the mutation has ten or more copies. Also, the side effects that Crizotnib has are usually less troublesome if it is used before immunotherapy rather than after it. This is what my understanding is anyway after hearing it third person.
  5. Yesterday
  6. I have heard Dr. Marmarelis speak and also viewed her Twitter feed. She is deserving of this award!
  7. Just got a reply from her thanking me for the note and the high-five. She said she was happy to hear I'd been able to participate in Lungevity's programs.
  8. Mona, I have not experienced a diagnosis of pulmonary fibrosis concurrent with lung cancer, but the post chemo drop in blood counts was typical after each of my infusions. Sometimes, I'd receive an injection of Neulasta or Procrit to address low white and red cell counts. Has your husband's doctor suggested these remedies? How long did my side effects last after chemo? They were generally over 14 days after infusion. My infusions were all on a 3-week cycle and the third week I felt almost normal before the mayhem started again. Here is more information about my infusions and side effects. Do encourage your husband to eat--anything! Chemo destroys cells (both normal and cancer) and calories are necessary to replace cells. I also experienced coughing during my first line treatment. Is his coughing worse that that experienced before his lung cancer diagnosis? Have a safe trip. Stay the course. Tom
  9. Sandy, Welcome here. To restate, have folks been diagnosed with lung cancer without noting a primary mass in the lungs? Yes. I'm not sure I understand the characterization of your mom's MRI result but small cell lung cancer is commonly found in the brain. UK's medical system differs from that in the US but normally, one receives a lung cancer diagnosis (of any type) as the result of a histology examination of tissue performed by a pathologist. This examination is the diagnosis means usually revealing the type of lung cancer, non small cell or small cell, and if the former the subtype: adenocarcinoma, squamous cell, or rarely large cell. Histology results are generally available hours after the biopsy. Then tissue samples are sent for further laboratory analysis to yield information about biomarkers. In the UK, perhaps histology determinations take longer. It is unusual to receive a diagnosis of lung cancer without noting a primary tumor. My tumor was noted immediately in the main stem bronchus of the right lung. Its size made it hard to miss. But unusual is not impossible. In the US, part of our diagnostic process is to administer a PET/CT after the initial CT and diagnosing biopsy. The PET is used to stage the disease. Staging is normally determined before a treatment plan is designed. Lung cancer is often diagnosed without symptom presentation. I've been linking citations from Lungevity's Lung Cancer 101. Give it a read and let us know if you have further questions. We do hope your mother's thrombosis is successfully treated. Stay the course. Tom
  10. I was wondering if anyone has experienced both of these conditions together. My husband was diagnosed with pulm fibrosis almost 2 years ago at the VA. At that time, his symptoms were not bad...cough, sometimes productive as well as some developing shortness of breath with walks. COVID hit, and his symptoms got worse, and ended up with hospitalization for pneumonia twice. Then new pulmonologist wanted to do a bronchoscopy to determine if his pulmonary fibrosis was IPF or Unspecified. That began the start of our cancer journey, when lung tissue came back positive for adenocarcinoma and 3 positive lymph nodes. So, pulmonary fibrosis, in itself, is a horrible diagnosis, with no cure and just palliative treatment. Now we have increasing lung tumors, more lymph spread, and six areas identified in bone. The fibrosis takes any radiation to the lungs off the table. He is not a surgical candidate, as mentioned in previous posts. So, he agreed to chemo with Alimta and carboplatin, which kicked his *ss in almost every way possible. I have seen many posts here about how there were a few bad days, but second week much better, and third week almost back to before chemo treatment. My husband is 11 days out and he is not feeling much better. Still poor appetite, lots of coughing , pain increased,... We have his pain getting under control, have seen pain doctor and started a new regime. We have labs again Monday to see where his numbers lie. His WBC dropped by half on day 7,and platelets by 70 percent by day 7. so, we will see what this week brings. Right now, we plan to get on auto train Wednesday to make a trip to his hometown to see his sisters and brothers, who we have not seen in 2 years due to COVID. We are taking lots of precautions, and have our own space with bathroom and sleeping quarters on the train so he does not need to be exposed to any folks for the travel part, and having our own car to pack up comfort items, etc will be good. He is approaching this as potentially his last trip home. I will take him wherever he desires, and this trip is all about him and getting to see the folks that are important to him. I hate that he is viewing this as a last trip, but who knows? One day at a time, and making the best of each day we wake up. would love to hear from anyone that has experience with both these diseases together.
  11. Hi, Trying to see if there are similar experiences. My mum had a deep-vein thrombosis a month ago. As it can be a cancer sign, she went for a CT scan and found 1) 1 lymphnode of 3cm in left lung and few other limphnodes of 1cm in left lung. 2) 0.9cm mass in cerebellum No cancer mass seen though. During the brain MRI, they said that the cerebellum mass "does not behave like a typical methatstasys", so might be an atypical methastasis. Then last monday my mum had a biopsy of the larger lymphnode and the immediate analysis revealed "carcinoma", but more days are needed to know what type and of what organ. Due to the other signs, SCLC is suspected. My question: has it happened to anyone to have a SCLC (possibly with met already) but without seeing the primary mass in the lungs? Does this experience resonate with some common facors experienced? No clinical symptoms aside from the thrombosis.
  12. Minh - You have really been through the medical wringer for sure! Yes, I've had all my treatment and exams at Community North on 82nd except my initial arm surgery (my lung cancer was discovered by a broken arm/pathological fracture to the humerus). I travelled to St. Francis Mooresville for that surgery because my oncologist wanted me to be seen by an orthopedic oncologist so he could get tissue samples before he put the rod in my arm. My situation was a little different because when the break happened, I did not have any insurance. My kids did a GoFundMe and got insurance but it wasn't effective until the next coming month so from 4/9 until 5/1 I had no other medical treatment, (and lived with my broken arm), other than a visit to an orthopedist who confirmed this is most likely cancer (of some sort) that caused the fracture and an MRI. But, by 5/1, it was all systems go and I've had visit after visit after visit. I had bronchoscopy to sample the nodes (they couldn't get to the actual cancer and it was tiny at only 1.2 cm). Got my PowerPort for chemo. Had my arm fixed finally on 5/18 and radiation shortly after that. Started chemo in June. Seemed like things moved pretty quickly once the insurance was in place. My experience has been that things move pretty quickly at the cancer center - maybe not so much elsewhere in the system - but pretty quick there. You might give them a call or have your primary physician or doctor from MD Anderson make that call. I was once seen same day I called when they discovered the blood clots in my lungs, which is practically unheard of in a specialist's office. So far, I couldn't be happier with the treatment at Comm North for sure. I pray all of us well as well!
  13. Thank-you for sharing this.....I had no idea there were over 70 different mutations. Susan
  14. Last week
  15. Hi DeDe, Thank you for you info! I really would like to get local treatment if I could get it in a reasonable timely manner. My experience is that I am don't have much luck with getting medical appointments reasonably expectation time. May be it's because of the Covid-19 pandemic. In March this year, my cardiologist nurse called and told me my heart is critically failing and I need a heart surgeon to get an open heart surgery ASAP. I called a surgeon (was recommended to me) in the same medical group (it's not the same medical group you mentioned) and was put on wait list for 4 weeks just to see him and consult. I would have to be on a wait list for another 6 to 8 weeks to get into surgery because they are too busy. I then called Cleveland Clinic and they got me in right away for surgery in 2 weeks. After the surgery, I had a left pleural effusion and had to waited for about 6 weeks to get local treatment and it was only half way treated and not fully therapeutic, while it took 3 days in MD Anderson to diagnose and treat. Without treatment in MD Anderson, my lung could have been permanently and fully damaged and I would not have known why. Even I have been a long time patient in this medical group, they only allow me to see my cardiologist once every 6 months because they are too busy. My brother who died last year of lung cancer also had to go out of state (he went to Dana-Farber) for treatment because he had difficult times scheduling with his local oncologist. I am sure Community has excellent doctors but when I got notice from Cleveland Clinic that I may have lung cancer, I called all the lung cancer centers that was recommended to me and MD Anderson was able to take me in the fastest. I have been very scared, nervous, and anxious, so I tend to make quick decision based on choices I had at the time! How is your treatment at Community? Are you getting any surgery, chemo and/or radiation in the same hospital building on 82nd street? I pray for all of us to get well! Thank you, Minh
  16. Someone just posted this on FB and it is so interesting. I didn't know there were 70 different EGFR mutations. This must be why some people do so well on current targeted therapies and others don't. https://www.mdanderson.org/newsroom/classifying-egfr-mutations-by-structure-and-function.h00-159464001.html
  17. I think this makes three of my doctors who have received Lungevity funding for their research! Dr. Marmarelis is one of two researchers getting funding for a new category, Health Equity and Inclusiveness Junior Investigator Awards. She will be studying disparities in NSCLC molecular testing, while the other researcher who received an award in this category is studying how incidental nodule findings are managed in underserved communities. This is an important area of focus--we know healthcare isn't provided equally to all patients. https://www.lungevity.org/news/media-releases/lungevity-awards-inaugural-health-equity-and-inclusiveness-lung-cancer-0
  18. Hi Citrine, thanks for your reply. I did have genetic testing. It showed an STK 11 mutattion which they said was a variant of uncertain significance. Then I read (on the infamous Dr Google) that an STK 11 mutation did increase the risk of a bunch of cancers, including the ones that I had. I called up the genetic counselor and she said that the one that caused risk was a different STK 11 mutation. The other, risk increasing mutation, is said to be the one that causes Peutz-Jehger Syndrome, which I don't have. (PJS involves some unusual skin pigmentation and a unique form of intestinal polyps) I'm suspicious though, because STK 11 is a tumor supressor gene, so it seems like "something wrong with it" might stop tumors from being supressed. I also think there's some connection between STK 11 and TP53 mutations but I'm not sure what-- it's been a while since I read this stuff. My lung cancer had a KRAS mutation, nothing about KRAS subtype, which I think wasn't unusual for a biomarker test done almost 5 years ago. My gynecologic cancer was about 10 years ago and was stage 3. One pathologist diagnosed it as cervival spread to the endometrium and the second said endometrial spread to the cervix. In any event it was clear cell and I seem to remember it had some serous component also. I'll be interested to hear the results of your genetic test and anything you learn about this stuff. And let us know, too, about how you're doing and the results of your PET. We're interested in your wellbeing as well as your genetics!
  19. Steph, It might be a good time to get a second opinion. If you are waiting four months anyways, it won't hurt to have everything reviewed by another doc. Best, Ro
  20. I don't think you can draw any conclusion from how long the scan takes. My latest scan (and I'm dealing with somewhat ambiguous results) was super fast. I've had some that seemed longer than others. Might just be a variation on which machine is used or who the tech is. But two weeks is a ridiculously long time to wait for results of your scan. Is there any way you could contact your oncologist and ask them to phone with the results sooner? On the off chance that there is something significant to discuss, that could wait till your appointment, but if there's nothing of any great significance, it would spare you a ton of stress to find out sooner. Welcome--glad you found us. You might want to introduce yourself in the newcomers' forum. As you can see, there isn't much action on this thread--the last post was two years ago.
  21. Hey all.....new here Yesterday was year 7 of having my upper right lobe removed for a stage 1B. I understood I qualified as "B" because my tumor was .5 centimeter larger than 1A would dictate. But because it was only a 1/2 centimeter I chose not to have chemotherapy. Fingers crossed! The reason I'm here is because I just had my follow-up scan and the way they did it this time caused me my little freak out now......in the last 3 or 4 CT scans it was in and out....the machine whirs up and I breath in, hold and breath out a couple times then I'm done.. This time they did the usual couple times and then a 3rd time they went incrementally moving a little bit each time and having me breath in and out each time. They've never done that before. It makes me fear the cancer has returned. I can only find solace in that if there IS cancer again it's caught early......but I can't shake my fear. I can't talk to anyone about it because everyone would jump in this worry bucket with me. I have to wait until I hear from my Oncologist because they found something or until my appointment with her on Oct. 1st to get the results......the old adage "no news is good news" works here for me.......sigh.....but I hate this. I hate the reminder, the fear and anxiety that goes with this. And just so you know: I smoked for 27 years.....I quit the day my Dad told me he had lung cancer and then he died 3 1/2 weeks later. I lost a first cousin when she was 48 to lung cancer and then my mother died from lung cancer so there's a history that makes my oncologist nervous to stop seeing me after the 5 year mark......so here I am having just past that 7th year. I know there's really nothing I can do but this cancer monkey mind gets me every time I get this scan. Thanks for letting me share........ ❤️
  22. Thank you LexiCat and Judy. I won't be giving any supplements except what Onc recommends and right now it's Folic Acid and B12 Rx and Vit D and Fish Oil, I will confirm Vit D dosage and confirm Fish Oil because I know bleeding is a concern so I was surprised he was ok with Fish Oil. I'm not sure about regular CT scans, I know they said they'll be monitoring bloodwork. I'm sure we'll be finding out more as the chemo day approaches. I've got lots of prayer support. The Onc was very clear that immunotherapy would be dependent upon response to and after chemo and radiation which will be 30x. I'm dealing with insurance company and hopefully DH's company HR, he really dislikes admin... Thanks again for the support.
  23. I had a really mild case of covid. It was a whole lot better than my last battle with the flu. Problem is that I am one of those long haulers. The residual effects have been worse for me. I have no stamina anymore and since then my doctors have been treating me as if I had COPD or Emphysema. Some of the symptoms have gone away but there are still things hanging around.
  24. Looking back I am so glad we did it. Neither one of us show any kinds of symptoms that would make someone think cancer. Had I not had covid I probably wouldn't have had the CT done in the first place. The clinic where we had it done called me to discuss the results and recommend I get a follow up scan with contrast to further determine what it was that was seen. They didn't call my wife at all and just mailed a copy of the report to her. She followed up with her doctor since her side of the family has a history of thyroid problems, but no cancer. She got the call that told her it was cancer 2 hours into our vacation. Our local hospital offers free scans for high risk people. I couldn't get one done there because I didn't meet their age threshold (55, I'm 49)but it is free. The place that did mine was a place called Advanced Body Scan in Oklahoma City.
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