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  2. Anyone have experience dealing with stage 4 non small cell lung cancer, KRAS mutation and low PDL-1 expressor? My husband had surgery just over a year ago where a tumour was removed in lower and middle right lung. He now has 10+ micro nodules in his left lung. I realize this is a long shot. I’m new to this forum. thanks.
  3. Today
  4. Hi Courtney and Welcome.... Good idea not to google too much! I did at first and scared myself silly. I had a pretty large tumor as well. About 5- 6cm. Mine had spread to nearby lymphnodes. I was initially staged at 3B. I also could not do surgery due to the lymphnode activity. I did chemo and radiation, and have now begun 1 year of immunotherapy. Once they get the biopsy results, they'll be better equipped to give dad a good treatment plan. I know it's so scary at first. 😫 We have new immunotherapies out now that are working really well too. Try to keep us posted!
  5. Courtney

    Coping with my dad having cancer

    Thank you for your response. I’ve been trying not to google anything because I feel like that would drive me even more crazy. I just hate how everything is a waiting game, I wish they could magically tell me all the answers.
  6. BridgetO

    Coping with my dad having cancer

    Hi Courtney, I'm sorry to hear about your dad's cancer. This is a frightening situation for you and your reaction is normal. 7 centimeters is a fairly big tumor. There are a lot of treatments for lung cancer, many of them new in the last couple of years, and new ones are being tested and approved often. You'll probably hear from people who have been in similar situations, who were diagnosed after some sudden alarming symptoms. If you want to learn more about lung cancer, a good place to start is Lung Cancer 101 on the Lungevity main site. if you haven't been there yet, the link is https://lungevity.org/for-patients-caregivers/lung-cancer-101. When looking for online information about cancer, be careful about your sources, since not all of them are reliable. Also, don't get hung up on survival statistices. Most of them are based on 5 year survival. With all the new treatments, the stats on lung cancer are out of date by the time they're published. These forums are a good place to find information, hope and support. Let us know what questions you have and how we can support you. That's what we're here for. Bridget O
  7. BridgetO

    Hallwang clinic

    Hi Ana, i'm sorry to hear about your boyfriend's mom's cancer. I haven't heard of this clinic and as Tom said, we can't revommend particular doctors or clinics. Two things I'd suggest, though, First, be very careful to check anything out thoroughly, especially if it is unusual and expensive. Sounds like you're doing this. Second, She might want to look for a second opinion from a lung cancer specialist, perhaps one in a major cancer center. Beist wishes to all of you. Bridget O
  8. I’m new here and hoping for some answers. I’m confused and hurt and honestly I’m a bit numb. I’m not sure how to handle this. Almost a week ago, my dad woke up and his face was swollen so badly he couldn’t even open his eyes. He had chest discomfort too and they thought he was probably having an allergic reaction to something. My mom took him to the E.R and the doctor decided to give him a chest X-ray. Then, after seeing the results decided to give him a catscan. Suddenly, he was transferred to another hospital to their ICU department. We were informed that he had a large mass that was pushing into his superior vena cava and because of this it was collapsing. The next day, they put a stent in the vein and did a biopsy of the tumor. Then, they did a brain scan, a bone scan and some other tests. Yesterday my parents sat me down and told me that my dad was diagnosed with non small cell lung cancer. My entire world came crashing down. I swear the walls in the room started closing in and I felt like I literally could not breathe. I asked them what stage he had and they said they wouldn’t know until the biopsy of his lymph nodes came back. Apparently those are all swollen and the doctors believe the cancer has spread. They said If that’s the case, he is stage 4. Stage 4?! The tumor in his lungs is 7cm, that seems quite large to me? The doctors say they can’t even remove it because it’s around too many important organs and arteries. My dad said they are going to try chemotherapy. Has anyone been in a similar situation to this? I barely know anything about cancer and my mind is racing with questions.
  9. Tom Galli

    Hallwang clinic

    Ana, We are not permitted to recommend doctors or treatment clinics. We support those with lung cancer but where one gets treated is an individual decision. Where is she currently receiving treatment? Stay the course. Tom
  10. Steff

    alectinib and pneumonia

    Yes, once it is cleared up. Immunotherapy is working well, so we all have decided to continue treatment. Should the side effects become worse or pneumonitis continually persists, we will then consider another type of treatment.
  11. Yesterday
  12. Roz

    decision time

    Carole, Your decision to undergo surgery will be based on what your thoracic surgeon tells you. I have had both surgeries (VATS for my first mass (Removed lower left lobe and the mass which was 8+cm) and then the second mass had to be done by the more invasive thoracotomy (which removed a 9+cm mass and upper right lobe). The surgeon, in both cases, said she would attempt VATS but if it wasn't possible would have to do the other surgery. So, there is no guarantee. Recovery is not easy and even though my second surgery was Oct 24, 2017, I still get tired after working all day, feel discomfort around my rib cage constantly. I had chemo afterwards. It's a difficult decision, but you have to weigh the pros and cons and make the best decision for yourself!. I was 61 at the time of my diagnosis and surgeries. Any other questions, feel free to ask. Ro
  13. Robert Macaulay

    Durvalumab

    Thanks Eagle13 I have no illusions and very glad to be receiving this treatment and if it is not working I am sure they will find something for me to try. lol
  14. Guest

    Hallwang clinic

    Hi everyone, I am writing on behalf of my boyfriends mum. Unfortunately she has stage 4 lung cancer which has now spread to her gallbladder and bones. She has just finished her first round of chemo. I need to also point out at this point that his mum is also a twice breast cancer survivor. This new lung cancer is primary and not connected to the previous 2 breast cancers. Before she started her chemo the hospital tried 'immunotherapy' on her as an alternative kind of treatment. Unfortunately, the immunotherapy was not woking quickly enough as the cancer was spreading so after only having one immunotherapy session they took her off it and switched her onto chemo asap. The chemo has paused the cancer in terms of its maintained and it has not grown to other places. However, once the chemo wears off we have been warned that she will decline quickly. At the moment there is no further plan for more chemo. The doctors want to scan her in a month to see if there are any changes. Essentially they basically have told us that survival rate is up to 2 years and it feels a bit like they are saying there is nothing else we can do so go and enjoy the next few years of your life as those will sadly be your last. We have been reading and hearing a-lot about The Hallwang clinic in Germany where they have their own bespoke immunotherapy treatment. It has been in the media a-lot due to the ex Emmerdale actress 'Leah Bracknell' having apparently gone there for pioneering treatment to help fight her cancer diagnosis. Online there are a so many mixed reviews on whether this place is genuine or a scam. They require 80% of the £80,000 fee it will cost upfront and then to pay the remaining 20% upon arrival. That to me seems odd and it definitely has rung a few alarm bells. They want to start her on their own immunotherapy drug and a bespoke personalised immunotherapy drug that is created using a persons own DNA. Has anyone had any experience with The Hallwang clinic in Germany or know of anybody that has been there for treatment? Any advice or recommendations would be greatly appreciated. Thanks. Ana
  15. Eagle13

    Durvalumab

    Robert- I pray that you get good results from your CT. I wanted the Durvalumab to work for me. Based on the technical data it works well for a lot of people.
  16. najma

    alectinib and pneumonia

    Ok but her oncologist would like to continue immunotherapy even with pneuminitis ?
  17. BridgetO

    decision time

    Hi PIP, I also have degenerative disk disease as well as arthritis in my spine. Mine is nowhere near as severe as yours. But I have pain and stiffness in the morning which have made it painful to get out of bed -- once I'm up and about, I'm generally OK. I saw a physical therapist who taught me a better way to get out of bed, which helps a lot. Have you seen a PT? HI Whoknew and welcome! If you feel comfortable telling us more about yourself and your treatment, I suggest you start a thread under Introduce Youself. I'd love to hear more about your clinical trial. Bridget O
  18. Robert Macaulay

    Durvalumab

    Yes I go for my first Ct on the 29th of this month since starting the drug and my Oncologist stated prior to starting they will make a decision then to stop or continue. I meet with her on November-9 for that outcome.
  19. Eagle13

    Durvalumab

    Yes, every treatment I saw the PA or the oncologist. I told them both about the continued issue with shortness of breath at each meeting. They wanted to give the treatment time to work and were waiting for the time when the next CT was allowed by insurance. The CT is what they go by to see how things are working or not. A chest xray will show the Pleural effusion. I got a CT after the chest xray in the ER.
  20. Robert Macaulay

    Durvalumab

    Eagle13 Did you not see a doctor in between your Durvalumab infusions, I do. Going Monday afternoon and she will give me checkup and asks for any concerns prior to my next infusion.
  21. Eagle13

    Durvalumab

    I found that coffee was a problem for me until I started the Tagrisso. It gave me dry mouth and irritated my throat. I believe my issue was the radiation treatement that focused on my lymph nodes next to my trachea. I was a major robust coffee drinker before the chemo and radiation. It seems like I am finally healing from the radiation and can drink my favorite coffees again. I had 7 treatments of Durvalumab(Imfinzy) before I had to stop. It is no fun to have to do the infusion every two weeks and the blood work that goes with it. For me, I noticed shortness of breath getting worse as the treatment progressed. Stairs were particularly a problem. It got so bad I had to start using the elevator to go up 1 floor. Finally during my 7th treatment visit I asked what I could do for relief. Inhaler, oxygen concentrator etc.... that is when I was told the onc would have to defer to the pulmonologists if I wanted those things. I went to the pulmonologist, he told me I had ~gallon of fluid and sent me to the ER for a Thoracentisis. That started to road to Tagrisso.
  22. Robert Macaulay

    Durvalumab

    No the coffee does not count in the water intake in this scenario.
  23. Kleo

    Durvalumab

    I'm drinking water! Ok and coffee too but that is just flavored water in my book. LOL I've only had the one infusion so I guess there hasn't been time enough yet for side effects to show up. Hopefully none will! 🤞
  24. Eagle13

    Durvalumab

    Kleo- drink a lot of water to counter the side effects. I found that drinking plenty of water every day made a big difference in side effects. It worked for the Platinum based chemo and the Durvalumab. In my cased the side effects of the Durvalumab were a cough, fatigue and the unfortunate build up of fluid. (Pleural effusion). Hopefully, you won’t experience the Pleural Effusion.
  25. michellepowell

    Concerned Daughter

    Not to speak out of turn but calm down if you are this upset think about how your mom is feeling consider her feeling and focus on that I'm telling you as a mom who's daughters take care of my treatment
  26. Whoknew

    decision time

    I am new here today. Yours is the first blog i have read. I am 69 and agree with you. Hope all goes well. I never knew we would be such warriors. I had an oncologist who was proactive on related pain. She was with the VA. We had gone thru all FDA approved treatments and suggested i try clinical trial. So monthly i make a 1500 mile trip for an infusion. Wow. I feel like leftover laundry hanging on a line.
  27. Eagle13

    Durvalumab

    Robert- My original diagnosis was Metastatic Adenocarcinoma lung primary and I was Stage 3b at the time. I was told that the staging is based on where all the cancer is found. I had a spot on my lung detected from a CT at a physical. When a biopsy was scheduled via navigational bronchoscopy one of my lymph nodes on the opposite side was found to have issues and was biopsied. Tumor is stage 1, stage 2 is detection nearby but still contained on the same side in the same organ. Stage 3 was outside that organ but within close proximity like a lymph node. 3b since the lymph node was on the opposite side. I became stage 4 when the cancer had spread to the fluid in the pleural effusion. At least that is how I remember the staging being explained to me. I was also told that staging is the way the physician determines the approach for treatment. From what I have read my initial treatment was textbook for my diagnosis. Chemo and radiation. Once complete it was typical to go to immunoyherapy for “maintenance” or prevention treatment. Unforunately, the immunotherapy did not work as expected for me. You are correct, not every drug works for every individual. That is why it is critical to seek as much expert advise as you can get. Looking back, knowing what I know now, I would demand biomarker testing before any initial treatment. Of course hind sight is always 20/20. Who knows what would have happened since Tagrisso wasn’t approved by the FDA until I had already had a couple of months of treatment.
  28. Robert Macaulay

    Durvalumab

    My thought is metatastic would put a individual at stage 4?
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