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Everything posted by Babs

  1. Hi Emma, I’m sorry to hear about your Dad. I too had swelling in my face and neck which is what prompted me to go to the Dr. Turned out I had a large mass in my mediastinum that was inoperable. That was exactly 2 years ago and I’m not planning on going anywhere anytime soon. I went through chemo and radiation, then immunotherapy and am now doing a clinical trial. They have come a long long way in treating lung cancer in the last few years. The waiting is the hardest. Once you meet with the Oncologist and have a treatment plan, you’ll all feel better. Please keep us updated and know that we’re here for you and your Dad. Babs
  2. Babs


    Hi Rick, Welcome! Sorry you have to be here. There are many who will share their journeys. What kind of lung cancer do you have. I have squamous Non small cell. I was diagnosed July 2019. I went through radiation and chemo. Have been on Immunotherapy and just started a clinical trial a week ago for a new chemo drug. Any and all info you can share will help others help you along the way. Did they send a sample from your biopsy in for bio marker testing? Glad you are on a treatment plan and again, welcome. Others will chime in soon. Babs
  3. I hope you get some relief and the next treatments go better! If it works, it will be but a distant memory. Babs
  4. @Jennedy How many treatments have you had? Do they know what the abdomen pain is? This duo sounds pretty nasty. I hope you find some relief. Babs
  5. So, I heard back from my Doctor here and her office is sending over my records to the U of Mn today for a referral for the trial. I also left messages for the 2 folks listed on the trial info. I think I’ve done what I can to get the ball rolling and feel better something is being done. Wish me luck! Babs
  6. Kristin, I did actually reach out to LUNGevity and was matched with a couple others. I am waiting to see what happens with this one first as it seems like a better fit right now. Thanks for your help. Babs
  7. Yes, I have a couple of names that are published on the trial and I am going to call them now. I’ll let you know if I get anywhere. Thanks
  8. Hi all, Well looks like this is becoming more of a reality for me. The trial at the Mayo is still a possibility but I would only be eligible for part of it and one drug that would be included is Cisplatin which my Dr there isn’t all that keen on it because of its possible side effects, the most being hearing loss. The Go2foundation matched me with a trial at the U of Mn that my Mayo Doctor is enthusiastic about. In fact he was very familiar with the drug as his mentor in South Carolina was the Dr who was the head of the phase 1 back in 2017. It’s now Phase 2. I am now waiting for my Dr here to refer me in to see if I qualify. She’s not the quickest and is kind of a “hot mess” as she’s always running late. I do love her though. I hope to hear back today. I’ll keep you updated and sorry you’re feeling so lousy Sandy. I hope your scan shows much improvement. Babs
  9. @Jennedy Yes, I’ve heard the muscle soreness is bad! Are you also very weak? I hope you feel better soon! I’ll let yo7 know if I choose that route??
  10. Thanks for all your input. I do have a video visit with my Oncologist here in Minneapolis tomorrow. I will pick her brain. I will also try to check into some more trials through Lungevity. I’m still hoping someone who’s had this combo will jump in to this thread. I believe someone on here has had it recently, but I can’t recall who. I’ll keep you all posted as I get more info and decide. Thanks, Babs
  11. Hi folks, I haven’t posted in quite a while but have been following all of your journeys. (Lexie, yours is fascinating and I’m rooting for you!). I was on maintenance of Keytruda and have had a recurrence. I was just down at the Mayo Clinic and was given 3 choices to consider. SBRT, which carries a risk of forming a hole in my trachea due to the Tumor location. The radiation Onc suggests a different route if available. There is a clinical trial I could possibly qualify for, a new drug along with Keytruda and possibly Carboplatin. And last a combo of Taxotere and Cyramza (sp?). I have been on Taxol before and had some pretty severe side effects, bone pain mostly. I have read that Taxotere is pretty bad with side effects and also the possibility of permanent hair loss. Can anybody chime in with experience with this combo? I hope you’re all doing well and welcome to all the new friends, Babs
  12. Babs

    NED is NED.

    Woo Hoo for NED! Love it..... Babs
  13. Babs


    Hi Nikki, I have stage IV NSCLC and Superior Vena Cava Syndrome. I swelled terribly in my face and neck. That is how I found I had cancer. I went in and the chest X-ray showed a mass. They hospitalized me. The swelling was due to the Superior Vena Cava being occluded and the blood had nowhere to go. It resolved on its own and the blood rerouted through the veins in my chest. I am doing fine 2 years later. The vein is still blocked and the blood flow in my chest is still stable. How long has he been swollen? If they could get the blood rerouted I’m sure he would feel so much better. I don’t have any experience with small cell so I can’t answer to that. I pray for the best for you and your brother, Babs
  14. Hi Matt, Ditto on what Gary said. It sounds like you are very close with your Mom. I am 62 and have stage IV Non small cell lung cancer. My youngest daughter who is 37 is my rock and I don’t know what I’d do without her! She’s more help to me than my husband. I forget though how hard it is on her to be that rock! Just like my daughter, being strong for your Mom means more than you know and is vital to her fighting this. How old is your Mom? I am with Gary on the fact that they seem to be waiting so long. I couldn’t have surgery and if your Mom is a good candidate for it, I would certainly think the sooner the better. The fact that she can have surgery is very encouraging. There are many on here who have had surgery and they can better answer your questions about how to help her prepare. Welcome and ask as many questions as you want. Keep us posted and don’t forget to take care of yourself, Babs
  15. Hi Tom, Thanks for your reply. So a couple of questions. What did they do to correct and/or take care of the fistula? Surgery and how long after you started the SBRT did the fistula appear? Also, was the SBRT done with a curative intent and was it successful? Obviously. Any info would be helpful. I am taking the safe route and playing it scan to scan, but part of me wants to go for it!! Thanks so much, Babs
  16. Gary and Lexie, Thanks for the reply. It does help tremendously to hear others agree with your decision to hold off on the radiation for now. It’s a HUGE decision and honestly makes me sick to think about it! It also is a little disconcerting that my 2 Doctors at the Mayo Clinic aren’t exactly on the same page. But for now, going to enjoy my time for the next 6 weeks until my next scan and hope for great results. Good luck to everybody and hoping for an early spring! Babs
  17. Hi folks, I haven’t posted in a while, but have certainly been staying up to date on you all. I had a CT, PET and MRI last week. It has been 6 weeks since my last 6 week treatment of Keytruda. The scans showed no progression anywhere and in the original mass it showed it had decreased a little from the last scan. I was at the Mayo Clinic for the scans and saw both my medical oncologist and my radiation oncologist. They both are in agreement that it is VERY uncommon for my cancer to progress in only the original place and nowhere else. In fact they both said that at the Mayo they wouldn’t see this on a weekly basis, more like every few months. They said if I went forward with SBRT I could stand a 20% chance of curing this thing, but on the other hand because of its location, I could stand a 10-15% chance of developing a fistula in the trachea and that would be fatal. My medical Onc recommended that I make that decision now and start it int the next couple weeks and stop the Keytruda treatments. My radiation Onc disagreed and felt if we waited and did a scan again in 6 weeks if there was no progression to keep on the same treatment only going forward with the SBRT if we saw progression. I went with his recommendation after talking with my medical Onc here and she agreed with the radiation guy too. Has anybody here had the SBRT and/or any kind of proton precision radiation and how did it go? Thanks in advance, Babs
  18. Hi Robert, I too was diagnosed with stage 3b lung cancer, squamous NSCLC. I had a local recurrence and am now stage IV. I was a 40 plus year smoker and finally quit. I would not have been able to without the help of BOTH Chantix and the nicotine patch. My husband also quit this way. I never thought I would be able to quit even with the diagnosis of lung cancer I still smoked for a few months. You have to do this for yourself, nobody can make you! I believe you can do it. If I could, you can!! Good luck!! Babs
  19. Kbellx2, Hi, I have the same cancer that you do. Non small squamous. I was on Carbo/taxol and radiation. I then went on immunotherapy of Durvalumab. I had a recurrence and then went on Carbo/taxol and Keytruda. I am also on the Keytruda every 6 weeks for maintenance. I am seeing a radiation oncologist from the Mayo Clinic in a week to discuss precision radiation. I could not have surgery due to the location of the tumor. It is now just scar tissue, but they want to see the possibility of doing the precision radiation to kill any cancer cells that may still be lurking in the scar tissue. Did you have surgery or was that not an option? Don’t give up hope as there are new drugs and treatments being approved all the time. There are others on here that have positive and successful stories. Try to stay positive, Babs
  20. James, Wondering how you are feeling? I hope this finds you well? Babs
  21. Oh no friend! So sorry to hear this. I will be praying and thinking of you. Keep us posted. Babs
  22. Babs


    Well, I applied for Social Security Disability Insurance and was fully prepared to be denied and I was approved!! I can’t believe it. I have heard horror stories of people having to appeal multiple times and obtain an Attorney. I applied about 1 month ago and just received my email this morning. It says I became disabled in July 2019 which is when I was diagnosed originally. Sounds like I will get a check next month and if I’m reading it correctly back pay to January 2020? I’m just excited I will get almost the same as my monthly amount would be if I we’re at full retirement age. I’m currently 62. This will certainly help ease my mind of withdrawing so much each month from savings. I highly recommend that everyone apply if you are currently diagnosed with advanced Lung Cancer. I was originally diagnosed stage III and am now stage IV due to a local recurrence. Thanks to all for your stories regarding this. It helped to encourage me to apply. Babs
  23. Hi Shane, I am nearing the end of my chemo/Keytruda treatments and will then go on just Keytruda for maintenance. I didn’t really have any problems with Shortness of breath, but I do have leg/joint/bone pain. At times after treatment it’s debilitating. I do alternating ibuprofen and acetaminophen and when it’s unbearable a prescription pain med. One thing I’ve been told repeatedly and have tried it and it helps is Claritin. They don’t know why it works, but I take 1 non drowsy per day, the 24 hour kind. Try it, can’t hurt. I hope you find him the relief he needs and hooray for the cancer being stable! Babs
  24. Born and raised in Minneapolis, still here except for a 3 year stint in Los Angeles in the early 80’s for work. I would like to go someplace warmer but I don’t see leaving the kids and grandkids. I do also love the change of seasons. Don’t like the winter much anymore, but you can’t beat Minnesota in the summer! Babs
  25. Babs


    Thanks everybody for your replies. That’s one of the wonderful things about this forum/family. There is someone that has the answer and is willing to share. We’ll see what happens on Monday. Hopefully I can have the treatment. Babs
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