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  2. Curt

    First time post.

    Hello @Robert. I’m sorry to hear about your wife. Please know that a mass is not always cancer. In fact the majority of them are not. The persistent cough does add to the concern but it’s not definitive. She is on the right path with seeing the pulmonologist and oncologist. If she’s been referred to an oncologist already there are likely some characteristics of the mass on the CT scan that were of greater concern for your doctor. Michele has done a good job of laying out what you can expect next. A PET scan will provide more definitive answers for you. This period of uncertainty between discovering a mass and an actual definitive diagnosis is very stressful and can take a while. We’ve all been through it here. Know that if it is cancer there are treatment options and lots of recent advancements. I’m sorry you are here but glad you found us. Hang in there.
  3. Thanks Kleo. I hate the itises 🤕
  4. Barb... I'm glad ya get a break anyway...the pain should ease up some now I hope! Dang pleuritis or pneumonitis... or bursitis.... or whatever it is!🥴
  5. Today
  6. So, we got the pathology results. Here's what we know so far in a nutshell: Tumor was 3.8 cm, squamous cell lung carcinoma; margins were negative (but it did sounds like there was a bit of a "but" in there); 4 of 17 lymph nodes tested positive; Stage is 2B; there will be follow up CT scans every 3 to 4 months for the first year, 4 to 6 months in the second year, and yearly after two years; chemo will likely be 4 cycles every three weeks (not sure exactly what that means yet); once the genetic test results come back the oncologist can supplement chemo with immunotherapy as appropriate. I'm putting together a list of questions for the oncologist visit on November 4. Obviously, we need a lot more details about what the chemo will entail, but also will want to know about any travel considerations for over the holidays. He continues to do great with recovery from the surgery.
  7. I was just diagnosed last month with small cell lung cancer stage 1. No where else in my body or brain. Doc reassures me that it is 80% curable. I am on my 2nd round of chemo this week and started radiation yesterday. I do plan on doing preventive radiation to the brain so it don't spread there in the future. Please keep me.posted on your journey and I will mine as well. Let's kick cancers *ss! God bless us all!
  8. Good post, especially the last line which I am still stuck on, I'm 8 months since finding the nasty beast was alive and lurking in my lung... I can't be afraid of living! But yet I find It still is the hardest thing to do on a daily basis without that danged committee that has decided to take up residence in my head again since my diagnosis! I love your blogs 😃
  9. Hi Michelle. You are so right. The pain does effect you emotionally and then the physical feels worse. I consider myself lucky, I got through 12 infusions without major problems. The PA in docs office said she has seen others who couldn’t tolerate the first infusion and that was the end. So a little break will do me just fine both physically and mentally. Hope you are doing well and enjoying your trips. 😎
  10. BridgetO

    First time post.

    Hi Robert, Michelle has given you great information and advice and I don't have much to add, except to say welcome here. Keep posting and let us know how we can support you. Bridget O
  11. Good to hear from you Charles! and thank you ! I did have a 2 week break from treatment and pretty much all of my pain went away, so yes it is from the Durva 😃 however, a lot of my chest pain is stress related as I am dealing with a lot of personal and financial issues along with this nasty cancer beast =( but I have a pill for that too haha! I just have to pick my battles with care these days. Actually, today I see my counselor and physically I really feel not bad 😃 so I'm hoping for a good day! I have heard some good things about the CBD oils, I'm a light weight, everything pretty much knocks me flat out hahaha! My Neurologist has told me NO! to both Medicinal Marijuana and CBD oil on my last visit in June. I have Petit Mal seizures sometimes lasting up to 5 minutes and he said he doesn't want me wandering around high as a kite in a fog looking for a cookie that isn't there lol! So for now I think I will try more meditation to help with the stress, keep close to the members of my family that are positive and relax and breathe 😃
  12. I was diagnosed with Small Cell Lung Cancer last month. It is stage 1 and not anywhere else in my body or brain. Is there any survivors of Small Cell on here? Doctor says its 80% curable and assured me I will live a long life. I'm already on my second round of chemo and started radiation yesterday. I am terrified, I will be only 48 on Halloween. Anyone please reassure me and tell me your survival stories from Smalm Cell Lung Cancer!!! Thank you all and God Bless! Michele
  13. Hi Barb- The Durva Road isn’t an easy one for sure. The treatment break will hopefully help relief some of the pain which can be debilitating physically and emotionally. You’ve got serious mo-jo so carry on- Jersey strong. Michelle
  14. Hi Robert! I'm glad you found your way here, this is a great place for support and learning from other's experiences. Here are some links for you to learn more about lung cancer, the process of diagnosing and the "what comes next".https://lungevity.org/for-patients-caregivers/lung-cancer-101 LUNGevity has many different resources that are available online, by phone/text and also in person. We are currently hosting a series of Lunch and Learns in partnership with various hospitals across the country. The list of upcoming events is here. Please reach out with any questions that you have. We are here to support you!
  15. Hello Robert, I’m sorry to hear about your wife’s diagnosis. I read in your other post that it was found after going to the doc for allergies. Thats how we found mine. Thankfully before it was any larger. I think the craziest time was the couple months before treatment started. I know I felt like no one had any urgency and I stressed out. Just try to remember that they’ll do a number of test and everything takes time. This forum saved me when I was thinking the worse. if you have questions just ask and also I read older post that help me know I wasn’t alone. Take Care Paula
  16. Robert

    First time post.

    Thank You Michelle
  17. Hi Robert, Welcome. You’re not alone. The lingering cough with an initial allergy diagnosis is my story too. The primary care community is not prepared to appropriately assess for lung cancer. The first step is a biopsy for a pathologist to determine what type of cancer your wife has. A PET scan and brain MRI are next to determine what the Stage is. After the pathology report there will be biomarker testing to determine if there are any genetic mutations (non-hereditary) that could be causing the cancer. Not everyone gets the biomarker testing so be sure to push for it as a critical part of the diagnostic process. All of this is very technical, overwhelming and necessary to develop a personalized treatment plan. It can take up to 3-4 weeks to get through the diagnostic process which seems like forever. The key is to take this one day, one test at a time. Once all of the diagnostics have been completed you may at that time seek a second opinion if your wife is not a a major cancer center (called an NCI). The first visit with the oncologist can be really tough emotionally, this is normal. Take a look around the Lungevity site and write down your questions for the first appointment. Give yourself time to adjust because a lot seems to happen all at once followed by waiting for results. Most importantly- stay away from Dr Google and general internet research as it’s very dated. Any reference more than six months old is already out of date since the science is moving fast. You might check out the GO2 Foundation Lung Cancer Living Room on YouTube, the sessions are two hours and very informative. There have been more advances in lung cancer treatment in the last five years than in the last 50, so there’s a lot to be hopeful about. There are many long term survivors here that had have all types of experiences so ask us whatever you need. We’re all here to support each other. Michelle
  18. Point taken. I’m stopping it. I’m having a flair of fibromyalgia and I thought it would help. It didn’t thanks for feedback
  19. Robert

    First time post.

    Hello group, We recently (Monday) found out my wife has a mass in her upper right lobe. My wife had had a small cough for a few months which she thought might be allergies, not a constant but occasional cough. We went to our primary Doctor who ordered an x-ray then followed up with a CT scan which found the mass. Monday our primary set us up to see a Pulmonologist on Thursday and an Oncologist on Monday. I'm hoping someone can share a similar story and what to expect in the upcoming weeks. Thanks Robert.
  20. Hello, my name is Robert. In the last week a mass has been detected by x-ray and CT scan that revealed my wife has a mass on her upper right lobe. I came here to read as much information as I can and to hear similar stories. Thanks.
  21. Hey Charles. Seems this pain is common. Onc is calling it Pneumonitis and not pleuritis and sending me to the pulmonologist to make sure we get it gone. I’m missing one dose and then back on schedule. At first I was miffed that she’s making me go see the pulmonologist and not just giving me the roids so I can stay on schedule. Her thought was to get it right so it doesn’t get worse and get the pulmonary function tests too. Nervous to take a break but better than more lung damage.
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  23. Sillycat, I had the same pains around the same time you are and the pain did not go away until I was put on cortico's at 20 mg per day for several days, I believe 3 days and the pain was gone and I stopped taking the roids on my own before 4 days so I didn't have to taper down and still continued treatments. 5mg of cortico's wouldn't have been enough to stop the pain in my side (underarm) or 10 mg for that matter. Chest pains are potentially dangerous side effects to this drug and they should be taking you a little more seriously when you tell them these things other than saying "could be this" or "could be that" or "we don't know". It is THEIR job to find out if it is the Durva that is causing your pain by applying corticosteroids to see if the pain stops. Sounds like you are in a precarious situation with over the counter pain medications since Tylenol and Ibuprophen really helped a lot for me on pain and inflammation. I am surprised your onc didnt delay your treatments for at least a week until they knew more about your pains or at least prescribe a higher dosage of corticos. So sorry you are in pain, I have just recently jumped on the cbd oil wagon, I read it can help with pain too but it can be expensive....
  24. Lin, I had a very good friend and high school alumni who was diagnosed with very treatable lung cancer. He got hooked by a “snake oil” salesman and very expensive but worthless “treatment”. Sadly, he passed, quickly. By the time he embraced science-based medicine, it was too late. I don’t know if marijuana is a lung cancer remedy. There have been no trials, no scientific research, and consequently no data. The import of science-based treatment is that results are repeatable. Immunotherapy is new. I wouldn’t do anything that might affect its treatment impact. It has dramatically moved the survival needle. Don’t introduce something that may compromise your best chance at survival. Stay the course. Tom
  25. Silly-thanks. That’s exactly where all my pain is except my lung hurts when I breathe and when I sneeze it hurts like is going to explode. I said today it’s the same spot on my back where the radiation scar was. Haven’t had any since February so Cant say it’s related. I’m happy for the break and the doc isn’t too worried about any negative impact on the treatment. I just want a week without pain when I need to use my arm
  26. Yesterday
  27. Hi all! I had my 5th Durvalumab infusion yesterday. Straight up 😃 Blood work first, all ok. Seen APRN this visit, Oncololgist next visit. Still have Oxycodone 5g for pain if needed, I take one tablet before bedtime, I'm also still taking one 5mg prednisone daily for my muscle and joint pain. I still have the middle back pain along with the shoulder chest and underarm pain. I asked again why? APRN and Oncologist both do not know why, they feel it could still be from radiation Good grief man! Does it ever go away I asked, she said it takes a long time, last zapping was 7/1/19. I am allergic to Tylenol and dr doesn't want me taking NSAIDS, because of my epilepsy medicines that take a toll on my kidneys and liver, bleah! Funny thing is the steroid helps with the pain better than the pain med lol! Otherwise I have no new side effects to report from my last infusion til now Yay! Barb: I'm glad you are getting a break, hoping it will help resolve some of your issues, you are always in my thoughts and prayers 😃 Take care all my Durva pals have a great evening 😃
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