Babs

Woo Hoo for NED! Love it..... 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 bett

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

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

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

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 wou

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

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

James, Wondering how you are feeling? I hope this finds you well? Babs

Oh no friend! So sorry to hear this. I will be praying and thinking of you. Keep us posted. 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 cu

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 f

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

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

Tom, Thanks so much for the info! I will definitely ask about the time release method. So if I am understanding you correctly, the bone pain from Nuelasta was a day or 2 at the most? Thanks - Babs