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  2. Hello @Yvonne S. I have an EGFR exon 19 mutation. I did not have the T790M mutation. I was told I had no genetic markers indicating a family genetic connection to lung cancer. I found that impossible given the fact that my paternal grandmother, my father and six of his nine siblings had it and now I do. My paternal Great grandmother died of breast cancer that some think was probably lung cancer. The doctor explained that some families are just predisposed to cancer. He used the example that some families are predisposed to baldness. There is no genetic mutation that causes that, just a genetic predisposition to it. There are more advances on this front happening as we speak. I found this article interesting. https://www.sciencemag.org/news/2020/02/massive-cancer-genome-study-reveals-how-dna-errors-drive-tumor-growth
  3. Today
  4. Hi Curt, I participated in this study. My tumor, and then germline testing was positive for EGFR T790M mutation. My grandmother, mother and sister died from lung cancer. I can’t direct you to the results but know a little about the study. I met with Dr Oxnard at Dana Farber. He helped get my brother and niece tested, both negative. You are the first person I’ve seen mention T790M so I’m curious if you have encountered it.
  5. Yep, sometimes hair falls out. When I was in treatment for a non-lung cancer, mine fell out. I actually wasn't as concerned about it as I was about all the other side effect I was having, sike neuropathy, vomiting and so forth. I thought the hair loss was "interesting" It also gave me a chance to indulge myself by buying some cute hats and scarves. I bought a (cheap) wig, had it styled, and wore it a couple of times. It was sort of fun buying it- a friend went along with me and we were pretty entertained. But I felt more comfortable in the hats and scarves. When the weather was chilly, I slept in a soft cotton hat. When my chemo was over, I found an advantage to being hairless-- It was a lot easier to go swimming. And hair does grow back. Here's a true wig story to entertain you. A friend of mine lost her hair with chemo and always wore a really nice wig. One day while she was driving, a quite young driver ran into her car. Her wig flew off and landed on the gear shift lever. The young woman driver was in a panic- for a moment she thought my friends HEAD had come off. Everyone recovered quickly, even the wig.
  6. Tomm

    new here

    Hi C. Jean.. this is something I took and take ... it may help Multi-Nutrients 5 by Vital Nutrients Multi-Nutrients 5 caps by Vital Nutrients is a high quality and high potency multivitamin supplement which is designed to potentially help provide a nutritional source of vitamins, minerals and trace elements for improving overall health and well-being. Multi-Nutrients 5 by Vital Nutrients comes in a citrate form and is hypoallergenic and gentle on the stomach for most sensitive people. Multi-Nutrients 5 by Vital Nutrients is specifically designed with no boron, copper, or iron for general nutrition and immune support. Multi-Nutrients 5 by Vital Nutrients was formulated by Cancer Treatment Centers of America.
  7. Hi C Jean, I have to say you’re an amazing sister, willing to step in and help. In terms of pre-chemo, you’re correct in that it’s nutrition, nutrition and nutrition. Dr Andrew Weil recommends an anti inflammatory diet. My Mom has a similar fast food type of diet, she was very motivated and made some unbelievable changes to her diet pre- chemo. Not everyone can do that though. At a minimum, removing fried foods and sugar would be a good start, then the “white” foods. One of the hardest things to do as an caregiver at a distance is to respect choices. I was internally horrified when I went home this summer to discover my parents eating pancakes from Burger King. We kept our traps shut. At 76 it’s her call even though I take a totally different approach to fighting my cancer ultimately it’s those flea markets that make her happy which is the most important thing. After chemo starts sometimes the diet gets tossed out the window in favor of mashed potatoes and ice cream just to mitigate the weight loss. Keep us posted as you can. Hugs, Michelle
  8. Yesterday
  9. There is not much on staging for SCLC except "limited" or "extensive"; however, I did find statements that the TNM staging could be used. It would be nice if Googling for SCLC staging would include the TNM method. I wanted to confirm what I was hearing from our cancer center for my wife. The most recent info indicated stage IIIB with notes T4-3, N2, MX with the primary cancer > 5cm and around the pulmonary artery. I found the 8th addition TNM staging for NSCLC which indicated that T3 is for primary cancer > 5cm. However, the pulmonary artery made it T4. The N2 tells which regional nodes are affected. The listed nodes appear to be in the center of her chest. The MX makes no sense but maybe should have been MO for no distant metastases which is what we were told. Note that I found elsewhere that an NX meant nodes not tested. Since my wife only recently had a PET scan, I wonder if her "initial" staging could change if the scan found mets elsewhere?
  10. @Blossomsmom you are an amazing caregiver for your mom. I remember being very frustrated during my fathers treatment with the lack of information available on what we should be concerned with and what we shouldn’t be. The uncertainty is difficult. Hang in there.
  11. Curt

    CoVid 19

    I’m not getting any treatment. I still. wore a mask and completely disinfected my seat on the flights I took yesterday. Can’t hurt to be diligent.
  12. Another resource is the GO2FOUNDATION, they might have some ideas on how to develop a hybrid healthcare approach too.
  13. Yesterday my wife's hair started falling out. That's 15 days after her 1st round of chemo started on Jan 31st. Maybe the PET scan on Friday pushed the hair over the edge ... just kidding ... him maybe not. I think I reacted more to her hair falling out than she did. Her sister said head bands and covers are in order so she would see about them. We go see the radiation doctor for the first time tomorrow. I guess she will get the cancer area marked up on her chest. The sores in her mouth are gone and she is feeling much better. I guess that means 1 week to enjoy this until her 2nd round of chemo starts Tuesday week. Her 1st radiation treatment starts next week also.
  14. also sounds like figuring out how how to supplement the Canadian treatment (chemo/radiation/surgery) with other treatment (targeted/immunotherapy) in the US would make the economics much less burdensome. Hopefully I can find someone who has experience taking such a path.
  15. Replying to a pretty old post....but as I scan all the topics going back in the past this is the first to mention Large Cell....which is what I have. By chance did you happen to find any references. Appears I must always have rather rare health issues....I may be the only case? Its non small cell that acts like and is treated like small cell is my conclusion at this point. Not to mention that having the VAT thoracotomy makes me even more "special" Thanks in advance for any help.
  16. Thank you all very much with providing your generous thoughts and care, and openly sharing your own experiences. I can't thank you enough and will follow up on every suggestion you all have made. Sincerely, thank you. Shane
  17. Rower Michelle

    CoVid 19

    No Tom, you are not crazy. I ordered a dress from Amazon for my LungForce event, saw the “Made in China” label then literally thought twice about trying it on. You’re concerns are totally valid. Before starting chemo I saw the Integrative Oncologist who recommended a number of immune boosting supplements: 4 grams of Curcumin, 4 grams of Omega 3, 4 grams of Turkey Tail, Reishi and Stamets 7 (mushrooms). My counts got knocked down a day or two following chemo but were better and recovered faster than expected. The advice I got was hydrate, rest when tired, try and walk a mile a day, live your life, stay away from children, church and Walmart, wash your hands frequently, use hand sanitizer. Nutrition, nutrition & nutrition. You might want to check out The Cancer Fighting Cookbook by Rebecca Katz which is an excellent chemo resource. My Mom did seven rounds of chemo and basically said to heck with that advice, she gallivanted all over Jersey, not missing a single good flea market or church. The medical team will watch your counts like a hawk, let them do the worrying. Learn to love broccoli, start loading up the Netflix account. Michelle
  18. Its an old post Susan but it is so spot on it should be either pinned or reshared often. Glad I found it and glad you shared it Tom
  19. Last week
  20. TJM

    CoVid 19

    I have been hesitant to bring up this topic because I dont want to be considered a fear monger. On the other hand it is a genuine concern I have and I doubt I am the only one. I will be starting my first round of Chemo in about 3 weeks. I am not real concerned about catching something now because I am healing well from the surgery and my immune system should be fully functional. But once the Chemo starts that will all change. I have been thru this as a caregiver a little over 10 years ago. My oldest son was diagnosed with idiopathic aplastic Anemia...which basically means he had 100% loss of bone marrow function. His bone marrow was producing zero new blood cells for 10 weeks and even when his treatment started to work all of his blood work was low for over 6 months. He responded to the treatment to perfection and is fully cured (thank God). So I remember our drill during that time because the biggest fear was catching...well....anything. So before we brought him home we disinfected the house, went to one plate, one spoon, one knife and one glass for each of the 4 of us stayed away from fresh food (crazy...not) had strict controls on visitors, wore masks and had hand sanitizers in every room. I guess my real question is how much of this should I plan on doing to protect myself? I'm smart enough to know, at least right now, that I should be more concerned about the normal brew of various flu bugs that are going around...but I do think this new virus is more dangerous because, well, it's new so no one yet has immunity and I think it could spread fast. I have my flu shot and pneumonia vaccine up to date. Again. Not trying to spread fear here, but on the other hand I have about 3 weeks to come up with a plan. Anyone one given this any thought? BTW..went to the office yesterday.I was there about 3 hours and was not doing any real work. Just updating the owner on the plan and talking with co-workers. It was nice but it did tire me out more than I expected. I'm definitely not ready to work yet and expect the Chemo to keep me out one that starts. Peace Tom
  21. After her reoccurrence in November and being hospitalized in December from an adverse reaction to Taxotere, my Mom came home under the care of Hospice. She rallied and was able to be at my house on Christmas Eve with all her kids, grandkids, great grandkids and great great granddaughter. What an evening it was! Very emotional but such a joy to have everyone there (25 of us) sitting down to Christmas Eve dinner. And to think, none of us would’ve been there had it not been for my Mom. Since then, she has done pretty well. She’s back to her “normal” routine. Still drives and lives independently. Her hospice nurse visits once a week and is wonderful with my Mom. I actually think my Mom looks forward to seeing her every week and I feel good knowing hospice is in place and a phone call away if needed. The downside is when things do arise, such as dizziness she’s experienced this week, there’s no way to know for sure if it’s because the cancer has metastasized to her brain or if it’s caused from being dehydrated a little from her ongoing battle with diarrhea. I understand the concept of just treating the symptoms and making her comfortable but I guess I’m still not used to the idea of not knowing exactly where this is going and letting nature take its course. As her daughter it’s been my job to make sure she’s doing ok and getting what she needs in the way of medical treatment so it’s hard to now put that in someone else’s hands. It’s still hard to accept that this isn’t something that I can fix much less control. Especially when I look at her and she doesn’t look like there’s anything wrong with her. She has handled all of this with so much courage and grace. I wish I had half of her strength. I have the utmost respect for all of you who fight this beast on a daily basis. And I thank you for the strength and support you provide to others involved in the battle.
  22. Hi, we just received the PET scan results and it turns out my father potentially has stage III A or B lung cancer. Next is the biospy (EBUS) which is schedule a few weeks away. He is based in Canada and hence, subject to the universal healthcare system as well, which can cause long delays in appointments and treatments. I am his son and I live in New York City, and I am exploring options in the USA for expedited diagnosis and also treatment. I dont think in Canada we have the same access to dual or combination treatment and immunotherapy as is offered in the USA. I have put in a request for an appointment to Sloan Kettering to hopefully get an expedited biospy and also to discuss treatment options. I am reaching out for any thoughts from the forum in general, I am just trying to do everything I can to increase his chances. Also, does anyone have experience with paying for care out of pocket with this stage of cancer? I am just trying to understand is the potential costs $100k, $500k, $1m?? I really dont know and I am sure its wildly different case by case but trying to set mine and my family's expectations. Thanks for ANY additional thoughts. Thanks so much! Shane
  23. Hi there, I'm on the journey as a co-survivor with my sister who has been diagnosed with metastacized Ovarian Cancer (now in her lungs) via CT scan on 2/4/20. She's undergone 28 rounds of Radiation for the first cancer. Her local doc told her the cough/lung problem was a fungal infection and sent her to a pulmonary specialist (an hour away) the next day who gave her the "C" news. She was devastated, and alone. Her biopsy won't be 'till 2/19 (due to no open OR's at hospital) which seems like an eternity (one week) away right now. We all want to get the pathology and get on with treatment for her. I'm finding such inspiring messages here and value the wisdom those who went before us can offer. Thanks!
  24. Earlier
  25. My wife was diagnosed with limited stage (3) small cell lung cancer last week. She started chemo yesterday (Carboplatin and Etoposide). Today and tomorrow will just be Carboplatin then a week off. This will be repeated several times but with cisplatin every other time. Radiation will start at beginning of 2nd chemo treatment. I just wanted to get into the forum and begin to discuss the treatment. I have already read so much on line that it is overwhelming. This just sucks. Both me and my wife want to hit the cancer hard.
  26. Does anyone have any information on this study? Did anyone participate? It looks like it concluded in January. I’m very interested in the results. https://www.dana-farber.org/thoracic-lung-cancer-treatment-center/inherited-egfr-t790m-mutations/
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