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Babs last won the day on October 4 2020

Babs had the most liked content!

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  • City
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  • Country
    Unites States
  • Gender
  • Status
    Lung cancer patient/survivor
  • Interests
    Gardening, Sports and Fishing

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  1. I hope you get some relief and the next treatments go better! If it works, it will be but a distant memory. Babs
  2. @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
  3. 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
  4. 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
  5. 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
  6. 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
  7. @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??
  8. 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
  9. 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
  10. Babs

    NED is NED.

    Woo Hoo for NED! Love it..... Babs
  11. 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
  12. 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
  13. 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
  14. 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
  15. 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
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