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  3. For those of you attending the International Lung Cancer Survivorship Conference in Washington, DC, April 26-28, be sure to attend the Survivor Expo on Friday, April 26, from 12:00-4:00PM. The Expo will be an informal, open session for participants to explore booths, vendors, and activities, all with information on how to live well with lung cancer. Booths will feature information on integrative medicine, taking care of yourself, healing, work and legal, family, and research/therapeutics. Participants are also invited to complete conference check-in during this time. Come to check out the booths, have professional headshots taken, watch cooking demonstrations, and try out pulmonary rehabilitation exercises. View the full list of exciting vendors and demonstrations: Demonstration Schedule.pdf Vendor Tables Info.pdf
  4. Hi Eugenia- I responded in the other post. Be strong. M.
  5. Hi Eugenia- I’m an ALKie mutant taking Alectinib. In mutant land the EGFR is one of the best studied so I would have complete confidence in the doc’s recommendation for Tarceva. “Back in the day” (like last year) Tarceva was a first line EGFR therapy. It works well for most people over a long term. In ALK there’s a concept of when there is disease progression on Alectinib to try an older inhibitor as a second line. Not the same as side effects though but you get the idea. “Older” inhibitors do work well. One long term EGFR survivor is Diana Lindsay. She wrote the book “ Something More Than Hope”. It could easily be retitled to “The Mutant Survivors Guide”. In the book she speaks about her ride on Tarceva quite a bit. I’m also wondering if after Tarceva the Tagrisso might be tried again in the future. You might want to ask about that. You might want to contact the Bonnie J Addario Foundation for some advice. There are a number of EGFR survivors in the YouTube Living Room. Facebook also has a large EGFR community too. A second opinion might also be considered as well. Part of me wonders if the pneumonitis was really the Tagrisso or maybe the Keytruda?? I only had one hit of the triple combo. After about a week, the coughing fits were even worse (I also had pneumonitis) to the point I briefly considered no treatment. We thought the Keytruda was the culprit. Hold onto your hope- there’s about 900 clinical trials for EGFR with the innovative emerging quickly. Who knows at this rate in the next year Tagrisso can become “so last season” as there will soon be a next generation of inhibitors that will likely leapfrog it. How are your parents coping? Attitude is so critical in managing this disease. I really understand the stress your Dad is under- my hubby nearly collapsed when I was diagnosed. He didn’t really know how to cook anything other than pasta & scrambled eggs. He’s my sous chef now having taking a love to the instapot. As I felt better- so did he- even though he grumbles about doing the food shopping & cleaning bathrooms. 😋 Keep us posted - my prayers for your family. Hugs! Michelle
  6. Hey Steff- Will take whatever good news we can get & NED is our best friend! Thanks for sharing! Any concerts planned this summer? Happy Trails! Michelle
  7. Good luck Barb and Tomm!
  8. Alternative medicine is more accepted nowadays due to its promising results unlike pharmaceutical medicine, alternative medicine doesn’t give a negative effect such as kidney and liver problems when it comes to long term use. As for my alternative medicine usage, I use medical marijuana. The different strain has a variety of uses and effects depending on your needs. Like this marijuana strain (edited).This strain has a very potent effect on chronic pains like back pain and joint pain and a lot more. The benefits of marijuana, specifically the CBD cannabinoid, are undeniable. Let's take a look at all of the ways CBD is helping patients every day.
  9. Barb & Tomm- could be a new set of “Durva twins”! Best to both of you trailblazers... Hope Bob and Cleo are doing well!
  10. You are not awake when the intubate you. You are awake when they remove the tube but few people remember that. You are still an anesthetic haze. I have no memory of it.
  11. Are there any success stories about people that went from altima/carbo/keytruda (2 sessions) to Tagrisso (for 30 days) but then got a bad side effect - pneumonitis and then pneumonia - and had to switch to Tarceva? I read so many great stories about Tagrisso being a miracle drug and I'm devastated that my mom can't go back on it because it was definitely working until she got pneumonitis and then pneumonia after a month. Looking for some hope here! Here are more details: My mom is 72 yrs old, retired in North Carolina with my dad 15 yrs ago, was a cancer researcher for 40 years (her last project was working on drugs related to EGFR in fact!), and was diagnosed with Stage 4 lung cancer in late December 2018. (spread to her bones - mostly covering her spine top to bottom). She is being treated at Zimmer Cancer Center in Wilmington, NC (an hour from their house) and after 2 sessions of chemo/keytruda and lots of trips to the hospital for dehydration, weakness, pleural effusion (she now has a tube in her lungs to pump out fluid every couple days) - the oncologist found out she was eligible for Tagrisso but I don't know the specific mutation and have no idea why it took over 6 weeks to get results back for gene therapy. She took Tagrisso for 30 days, while living in a rehab center to get her strength back, and was doing so much better and meds were working per scans when discharged a few weeks ago but a week after being home was rushed back to the hospital due to Pneumonitis (3-5% complication from the Tagrisso) and stayed in the hospital 2 weeks to monitor her lung inflammation and get oxygen and immediately taken off Tagrisso. She was discharged a week ago from the hospital with oxygen and steroids, started taking Tarceva 2 days ago, and was in the hospital yesterday and again today to now be told she has pneumonia and needs to be monitored.
  12. Hi Michelle! Which drug do you take? Tagrisso was working so fast but after 30 days she had a bad side effect with it and isn't allowed to go back on it so they want to switch her to Tarceva?
  13. I should be joining you Durva’s a week from today. I’m hoping for no side effects because I feel really good right now. But-just got to go with it.
  14. Love to know what’s in it but I click on the link and it takes me to a page with her name and a family photo and NOTHING ELSE. Nice pic but what’s the News?
  15. Yesterday
  16. I just got my 1st Duva infusion with no issues or side effects. My doctor does not want me to take the 50 grams of Vit C in an IV..not enough know about interactions of these.
  17. what is the difference? then they put a trach down my throat they say will i be awake for that
  18. VATS stands for Video Assisted Thorascopic Surgery. It is a less invasive way to perform a lobectomy. They make three, sometimes four smaller incisions and remove the lung laparoscopically. A VATS surgery has a quicker recovery time and you should have less pain and discomfort. I had a VATS lobectomy. I would do it again without hesitation if I had to.
  19. Has anyone had the VATS Surgery it sounds so scary
  20. He said when they did they could do the surgery or i could go in and see about radiation something about they zap it and i am awake but he acted like it could come back and recommended the vats procedure but then he was telling me all the risks and i thought do i want to do this or not...I know they have to tell you all the risks but i have really high anxiety and it did not helo me at all
  21. Hi Lucilori, I agree with Curt's suggestion that you ask for an explanation for the recommendation for surgery when your biopsy and PET scan were both inconclusive. My single small nodule was discovered in a routine CT scan that was done to watch for possible metasteses from a prior non-lung cancer. They recommended a re-scan in 3 months and that scan showed slow growth. It did not "light up" on the PET scan. Due to its location, it couldn't be biopsied by needle or bronchoscope. Due to it's spiculated (spiky) appearance, it looked to the various specialists like a primary lung cancer (and not a metastasis from my otheer cancer). I had s VATS lobectomy and my recovery was fairly easy. It turned out to be cancer, adenocarcinoma stage 1a. I was 71 and in pretty good health at the time of my surgery. Now two and a half years later I have No Evidence of Disease (NED). I don't have any remaining effects from the surgery other than my breathing sounds a bit funny at times.. If your doctors aren't clear about why they think your nodule is likely to be cancer, or if you're not convinced, you could get a second opinion. If you have more questions, post them and somebody on these forums will probably have answers. Collectively, we've been through a lot! Bridget O
  22. Yes we have changed onco team as previous one was more or less interested in palliative care while his new onco team is going with curative intent..keep up the spirit you will be playing golf very soon. Hoping for speedy recovery for you also Hament
  23. Hello I went to the hospital because i had a bad cold found out it was pneumonia so they did CT scan and found a nodule on my right lung they said it was 2 centimeters so they did a biopsy and it came out inconclusive had a PET scan same thing so now the doctor wants me to have the VATS surgery and I was all for it till he told me all the risks and now he just scared the heck out of me and I am not sure I want it now...Has anyone had this procedure done before? I have bad anxiety so it is worse for me . Or they told me I could have Radiation and they would zap it and i would not need surgery but that it could come back well they said the VATS procedure it could come back later also so not sure whats the best option yet
  24. Last week
  25. Hi, my father had been dx with SCLC in January and underwent the cycles of carboplatin+ etoposide + tecentriq (immunotherapy) with fairly good response. Now his onco team are planning to do radiation (IGRT) along with carbo+ etoposide. They are saying adding tecentriq to the regime will be too toxic. Has anyone undergone/going through chemo+immunotherapy+ radiation simultaneously ? Prompt response would be of great help
  26. Earlier
  27. Hi Fellow Warriors, Is anyone knowledgable about using Medical Marijuana to help with side effects? I live in Florida and it is legal for medical use. My oncologist is ok with it as long as I don't smoke it (duh). I am not only fighting lung cancer I am also in pain 24/7 from an arthritic shoulder. Thats how I found out about my condition. It showed up in my pre-op tests. Anyway as I am starting Chemo tomorrow I'm wondering if edible MM has helped anyone here with nausea and sleeping issues. Thanks in advance for any input. Claudia
  28. My mom was recently diagnosed with Stage 4 Lung Cancer that has spread to her bones. She has completed her second chemo/keytruda treatment and will start a new treatment in a week because she should be getting approved to take Tagrisso (gene drug) soon too. They first found the cancer because they thought she had a pneumonia due to fluid in her lungs, then found the mass after realizing that the antibiotics were not helping. That was about 2 months ago in early December and a month later they diagnosed it as NSCLC. Since her second chemo treatment, which was 2 weeks ago, she has been rushed to the ER (first for dehydration and then for trouble breathing) and both times they had to drain the fluid in her lungs. She is in the ER tonight and they plan to put a tube in to help keep it draining even after she goes home and they are also giving her antibiotics just in case she does have a pneumonia. She has been very tired since chemo treatment started, sleeps almost all day, refuses to get up and walk around, and when she does walk around she insists on using a walker so she is not getting stronger. Her motivation and confidence is very low. I'm at a loss and I live far away. Has any experienced this fluid build-up issue over and over again? The doctor said it is not ideal...
  29. Hi all, Since my other discussion thread was getting quite long and it's been 1 year since my mom started Keytruda, I decided to start a new thread here, where it might be better seen by those who are looking for information on immunotherapy. So, the 1 year update on my mom....she survived and lived to talk about it!!! She got her CT results yesterday and it was all good news....area around the cancer is stable and may look better (inflammation-wise). We have not been able to see the mass on the back of her trachea since October (2 months after beginning chemo + Keytruda). It still could be there, but it is not causing any problems. I don't know if the term NED will ever be used with her since we cannot get a perfect picture of where the mass was, so we are just using the term "stable". So, for us, "stable" is great news!!! There is a "shadow" that is showing up in her left lung that appeared out of nowhere. Her pulmonologist thinks it is most likely some inflammation or infection - he will keep an eye on it, but is not alarmed by it. Her shortness of breath still persists, she has 1 more heart test to do to see if that is the problem. If it is not, we are to the point where we will likely accept shortness of breath as a new normal for her. Luckily, her pulmonologist does not believe that Keytruda is the culprit, so we plan to stay on it as long as possible. Keytruda side effects: severe itchy skin - it drives her crazy especially at night. She currently takes Benedryl at night if itching is out of control and she has also found an Aveeno excema cream that relieves itching for a bit. Although the itching is bothersome for her, she would rather deal with it than cancer. Other side effect, but it is controlled by meds is her thyroid. She had a slow thyroid to begin with. It got slower, she just increased her meds and it is now controlled - no big deal. Docs keep an eye on it and increase/decrease thyroid med dose when needed. This time last year, I felt hopeless. My mom's lung cancer recurrence was a punch in the gut. I was heart broken when we were told that due to the location of the mass, it could not be surgically removed, nor was it recommended for the first treatment attempt to use radiation (some of the mass was in the original radiation field from her previous bout of lung cancer). So came the recommendation of Keytruda + Alimta/Carbo. I was unhappy and scared of this new "immunotherapy stuff". But this"immunotherapy stuff" is the best thing that has happened for my mom's lung cancer. If you are a newcomer to lung cancer and/or immunotherapy, do know there is hope. My mom has more hope now of surviving cancer than when she was originally diagnosed in 2015. And it is all due to continued lung cancer research and development of new treatment options. My main take away from this last year is: 1) My mom is tough as nails, 2) Even in the darkness of a lung cancer diagnosis, there is hope. Take care, Steff
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