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  2. I look forward to seeing you there, Tom! Thanks for sharing your experience!
  3. Not sure what you mean by final chemo? This is his 2nd or 3rd line treatment? May I ask what treatment(s) he had before? If so, how long between progression? Why wouldn't you ask his oncologist to do a more refined search for you? If not, if there is a certain site you are looking at I do believe you can call or write and they would be able to assist you in matching him up with one he would qualify for. It does look like a daunting task for an ordinary citizen with no medical back round.
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  5. In February 2004 when diagnosed with lung cancer, I went from being a happy and engaged participant in a satisfying life to a frightened observer of live with little control and no hope. I remember feeling alone, ashamed and afraid. Alone and ashamed because those in local cancer support forums treated me like I didn't belong---"I gave the disease to myself." Afraid because my survival probability was worse than bleak. Some survivors like to say I'm a Jurassic Era survivor; my diagnosis proceeded new and effective treatment methods, the establishment of the LUNGevity Foundation, and the Hope Summit. Now well after the Jurassic Era, we have this special place where lung cancer survivors and caregivers can gather and receive massive infusions of hope: The International Lung Cancer Survivorship Conference (Hope Summit). The conference is informative and interesting, but the power of the conference is The Gathering. It is an assembly that celebrates life. It proves no one is alone, casts out shame, and replaces fear with information and hope. Get back to a satisfying life. Join us in Bethesda in April. Here's the link. Stay the course. Tom
  6. Hi! LUNGevity has a free clinical trial finder that you can learn more about here: https://lungevity.org/for-patients-caregivers/lung-cancer-101/treatment-options/clinical-trials We also can match you with a Clinical Trial Navigator who is someone that has been through the clinical trial process themselves. https://app.emergingmed.com/lcctal/home If you need any additional information, please let me know!
  7. I don't have any information on clinical trials, but I did try to qualify for one when I was diagnosed that took your cancer cells and made a vaccine that would be administered after my initial 4 chemo treatments. There was something in my cells that disqualified me from the study..I have been on maintenance of Keytruda and Atlimta since April 2019 and it has been keeping my cancer pretty much at bay so far. My lung cancer had metastasized to some lymph nodes and 3 bone areas before I was even aware I had it. My last PET scan showed a slight increase in the lung tumor and I just completed SBRT radiation on that tumor last week. We won't know how well those treatments worked for at least 3 months. In the meantime, I will remain on maintenance until there is any change on my scans.
  8. Hi, my husband is on his 4th and final chemo (this time with Keytruda) treatment for small cell lung cancer. I think he would be a great candidate for a clinical trial, but I cannot navigate the maze of clinical trials to figure out which one may help him. He is not sick or frail, and is still active and working a full-time job. We've just run out of treatment options when Keytruda stops working (if it works at all).
  9. Thanks Mally. Not the best of nights last night but should be better tonight.
  10. I understand how you feel Tom as I had the same thing happen to me but looking back and getting told it's a dormant nodule made me feel relieved and the idea of getting it out didnt cross my mind then roll on a few years and it's gone and hopefully for good and I wish you all the best too ...
  11. Hi Fadi, I want to make sure I know what kind of cancer your mom has - I am assuming NSCA means non-small cell adenocarcinoma???? I try to stay up on all types of lung cancer, but some get past me and just want to make sure I know what I am speaking to. If it is adenocarcinoma, that is what my mom had, originally staged 3a and has had 1 recurrence since original diagnosis 4 years ago. She was on immunotherapy (Keytruda) and chemo (alimta = carbo) for 6 sessions and proceeded to immunotherapy only for about 1 year afterward. While my mom saw shrinkage within 3 months, many do not see results as quickly. In fact, many folks (my mom included) see "growth" early in immunotherapy treatment. Ultimately the cancer becomes inflamed and swells due to being attacked by the immune system and looks like it is growing. My mom had this happen after her initial tumor shrank, but other areas of her lung "grew". Ultimately, immunotherapy is not a quick fix, nor is it a quick treatment plan. People usually take it as long as their body can tolerate it or if docs see it isn't working. While chemo + immunotherapy is a standard of care for some types of lung cancer, it is not standard for all types. Has your mom had biomarker testing/gene mutation testing of her cancer? These tests tell docs if there are any markers within the cancer cells that make it more or less affected by certain treatments. These tests are becoming standard here in the US, but some people still need to ask for them. Be sure your mom requests these tests if she has not had them. While it is easy to lose hope when a first line of treatment does not give you the results you are looking for, that doesn't mean the fight is over. Many lung cancer survivors have had to go through several different types of treatment to keep the cancer at bay. Today, lung cancer is being treated as a long term, chronic condition rather than a death sentence. There are so many different types of treatment and mixes of treatment modalities that it's hopeful that docs can find a "cocktail" that helps keep the cancer controlled or shrink away. The road is not easy, but many people on these forums are triumphant in their journey. So, there is hope. Finally, I am not familiar with alternative treatments and will not try to speak to it. I can tell you that my mom takes a CBD tincture twice daily for chronic pain (not cancer related). She did not begin taking it until well after her lung cancer treatment ended. She spoke to all of her docs before starting it and they agreed that if she wanted to try it, she should. But if she needed to go back onto immunotherapy or do a clinical trial for her lung cancer, she would need to stop using it as they don't know if/how it can interact with cancer drugs. Hope this helps a bit, Take Care, Steff
  12. Hi Curt, Thank you for your kind words. Please see attached file for her current treatment. I will get you the information requested shortly.
  13. Hi Georgia, Sorry to read that your husband had such a bad case of esophagitis and later lung inflammation and infection, but that only reinforces how sensitive he was to the radiation treatments. Did his skin remain intact during his treatments? I only ask because I have seen some pretty bad cases of radiation burns and in my mind, if that's what happens to your skin on the outside, I can only imagine what happens internally. I can't speak directly about Gabapentin but I'm sure someone will chime in regarding their usage and dosage. I do know if it's being prescribed for neuralgia, titration of dosage takes a while to find that perfect match of pain relief and maintaining alertness. I noticed that all of his discomfort and pain are on the right side. I also had 30 radiation treatments at 60gy for a right lower lobe tumor and subcarinal lymph node. I completed my radiation in December of 2018 and I still have much discomfort in my right chest, right ribs and right back area. My back muscles on the right side aches all the time and standing at the kitchen sink doing dishes really irritates my right chest and back muscles, sometimes to the point where I have to wash dishes in increments. I just chalked up my pains to my radiation treatments and use Tylenol 1000mg and/or Motrin 800mg for relief. I might have mentioned this continuous pain to my oncologist a few times and I always got the same answer, use my analgesics and if I don't get any relief, he would recommend alternatives. I never sought anything else. I do find a warm heating pad/compress comforting for my chest/back aches and pains. There are other pain relievers that others have used and their experiences should be forthcoming. Take care, keep asking the questions, DFK
  14. NEED HELP RE SIDE EFFECTS OF DURVALUMAB Hello, I last posted info in August last year about my husband Foster (70 yrs) who has stage IIIB lung cancer in the right side upper lobe diagnosed in April, 2019. He began radiation and chemotherapy on June 17, 2019 and had 30 sessions of radiation and 6 of chemo. He was not able to start Durvalumab immuno until Sept 17 (had severe esophagitis and lost about 35 lbs, had no strength or stamina). He has had 9 infusions (every 2 weeks) so far (one was cancelled in Nov. after CT scan showed lung inflammation & infection). Current side effects are: right front rib cage - skin is tender almost like it's bruised but nothing visible; right nipple is extremely tender; what feels like bee stings on the base of his shoulder blade on the back right side and occasionally under the right arm pit, again there are no visible signs. Front chest area over ribcage on right feels uncomfortable and tender, wearing a shirt aggravates the uncomfortable feeling, it feels like chafing against raw skin, again nothing visible. This is a consistent, daily uncomfortable feeling. Extra strength Excedrin (or equiv.) seems to help. At his last appt on Jan 22nd with an ARNP, he described these side effects and was prescribed Gabapentin which he was told can be used for nerve pain. He took it only at bedtime for 4 nights and decided to discontinue it. After taking med, during the day he felt like a zombie and not fully awake. The side effects seem to be worse now. Would love to hear from anyone who has had similar side effects and find out what helped you. Have been reading through the Durvalumab forum and find a lot of useful info. Always look forward to sharing what helps and what does not. Thanks much. Georgia
  15. Congrats Roseann on finishing #11 and you are so correct, Durvalumab and it's pesky little side effects has a way of playing hop scotch with our calendar. I too gave up charting it out to #26. And very good that you dodged another "itis" on your eyes. Drops and wipes are very doable. I had a friend who had collagen plugs inserted into her tear ducts because of the hassle of using eye drops. She chose Collagen as it's a temporary measure and will dissolve on it's own in a couple of months, she can then chose to have a more permanent plug if it works for her. I'm in your camp, give me the drops and wipes. I know Tomm mentioned in previous posts that he was receiving IV Vit C prior to Durvalumab but was told to stop VIT C infusions until Durvalumab treatment is over. I have a Medical Marijuana Card but find the availability of products limiting and expensive, so I have yet to utilize it. Opal, Barb and Michelle Unfortunately, I don't have access to a LiveStrong program but I'm hoping being off the Durvalumab and continuing with my biking will get some extra pounds off. Thirty pounds is a lot of extra weight to put on in a short period of time....it does stress the body. I've been a practitioner of Tai Chi (Chuan Style) and Yoga for the past 20 years. I find that Tai Chi is like an internal massage where as my Yoga ensures my core strength. Thanks for the information on Low Dose Naltrexone.....more questions for my doc. Carrying on......DFK
  16. Barb and Opal, I know two ladies here in KC on maintenance Keytruda, they both gained 30lbs. The weight gain seemed to level off at 30lbs. They’re beside themselves because the treating physicians told them weight loss plans at Stage IV is not permitted. Doesn’t make sense to me but these were two different docs in competing health systems. Oh well.
  17. Hi Opal. My doc says no. The nutritionist agrees that it does cause weight gain as everyone in the practice on it is complaining about gaining weight. Que sera sera
  18. Hi Rosann Ask your Naturopathic Doc about the LDN Naltrexone, it’s by prescription at a compounding pharmacy (mail order at Belmar Pharmacy in Colorado). There is a LDN Naltrexone website that talks about the cancer benefits. In addition there is a small published study on LDN and lung cancer in PubMed. Naltrexone is traditionally used to detox from opiates at much higher doses (50mg). It was discovered in sub clinical doses up to 4.5mg there are reportedly unexpected benefits to reduce cancer pain, fibromyalgia pain, improve sleep and increase endorphins (which is theoretically hard for cancer cells to metastasize). I got a second opinion from another Integrated MD at the University of Iowa which confirmed the LDN recommendation. Then I consulted with my pharmacist who surprised me when he said that other Kansas University patients with stage IV brain and pancreatic cancers receive LDN post chemo. Go figure. My oncologist who didn’t buy into any of the “hippie protocol” was noncommittal, only after my out of whack liver enzymes significantly reduced (way faster than anticipated) did he get curious. My Integrated MD said LDN reduces inflammation. I’ve been taking LDN for 15 months. Is it working, I don’t know but it isn’t interfering and I have no pain despite a history of bone Mets which no one can explain. LDN is starting to make its way into mainstream however since the drug is really old the patent is long over so the pharma company has zero incentive to run any clinical trials. Carry on! Michelle
  19. Kind of seems like only us ladies are putting on the pounds. No where on Durva adverse effects did I see weight gain mentioned.
  20. Hello @Fadi. I’m very sorry to hear about your mom’s diagnosis. What alternative treatment plan has your mom tried? Has your mom been tested for any genetic mutations or biomarkers? Having that done can help identify more specific treatments.
  21. Hi Barb, Yes that is one of the tricks the nurses have me do in addition to the pumping, it's amazing what they have up their sleeves isn't it! I know know you certainly are doing the count down now for sure, I have my calendar marked with the infusion number I'm on so I can keep track of them. But dang it, I keep having to cross them off and change them, so now, I will just go with the flow until I get close. Like around week 18 maybe LOL! As for gaining weight, I'm right there with you, I've gained 30lbs! but I did need about 20 of them! But now it has to stop. I got my T&A back Yay! I will certainly enjoy the Y 😁 Hi Michelle, I am so looking forward to Tai Chi, my balance is so off kilter. Can't do a tree pose in Yoga any more. I will ask my Neurologist about the Naltrexone, is it a prescription medicine, or over the counter? Glad to hear how the Live Strong Program improved your Lung function that's awesome, I could use some of that, my oxygen levels are are anywhere from 96-98 when my levels are checked I would love to be at 100% Wishing everyone a great night, Roseann
  22. Yesterday
  23. Hi all, I'm all over the internet search in desperation trying to find anything or something to help my mom. I stumbled upon this forum and I'm hoping someone can provide me with glimpse of hope so I can help my mom. My mom was diagnosed with stage 4 NSCA in her left lung. She did 5 courses of chemo with immunotherapy which helped slow down the growth but it wasn't shrinking. The doctor suggested to increase the dosage but gave my mom 10% of shrinkage. As a result, my mom wanted to give alternative treatment a go and so far she did 4 sessions and we don't know yet whether it's working or not. I keep reading online that there clinical trials that offer immunotherapy and many people say it works, anyone has more information about this? Others say CBD oil would also work, anyone tried it? How/where to administer? Please provide your input. My mom is the first family member diagnosed with Cancer and I don't know what else to do. My mom appreciates your time and help. Any further information you need from me I would happily provide. Thank you.
  24. Hi Robin, Welcome to the Forum. I’m very sorry you’ve had to find us. I was 51 at the time of my diagnosis sixteen months ago. What I have since learned is that women in their 50’s are at high risk for lung cancer. Who knew?! Certainly not the PCP community as there is no real screening measure in place like there is for mammograms. Dana Farber is probably the best place in your neck of the woods to get a second opinion, they’ve seen a lot as a result can design unconventional treatment plans when the standard of care isn’t responding as expected. The biomarker is of critical importance to personalize the treatment plan. There’s also some really interesting clinical trials at Mass General too. Hold onto hope as best you can. Let us know how we can support you. Michelle
  25. Just a reminder - don't forget to apply for the travel grant! It is possible all of the grants will be given before the deadline.
  26. Welcome, Robin. This group is full of wonderful, supportive people. Did you have biomarker testing done? Please keep us updated on your appointment.
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