Babs

Hi Pam from another Minnesotan! I live in Maple Grove and happen to be doing a clinical trial through the University of Minnesota. I was seeing an oncologist with Park Nicollet and the Mayo in Rochester and had my Dr with Park Nicollet refer me to the U. They matched me with a clinical trial and here we are. I had a scan 2 weeks ago and it shows some slight improvement. Does your Mother receive care at the U? I really like the staff and my Doctor there. Let me know if I can answer any questions . Babs

Hi Lou, I also got the Moderna vaccine. Is there a difference in the recommendations between the Pfizer and the Moderna when it comes to the booster? Any info is appreciated. Thanks, Babs

Hi Teresa, It’s nice to meet you too. Let me start by saying I absolutely love your city! My husband and I have been there a few times and will definitely be back. I am 63 yrs old and was diagnosed with stage 3 squamous nsclc 2 years ago. I am currently doing a clinical trial for a new chemo drug. I will have another scan in about 6 weeks to see if it is doing anything. My tumor is in my mediastinum and inoperable so I did chemo/ radiation and a couple of immunotherapy drugs. I keep having progression and here we are. Man, sounds like you have been through quite a bit over the last few years. I do believe it all makes you stronger. There are many on here that have success stories and have been living with this for many years. Did you have surgery or any radiation? Welcome and keep us posted on your journey. Babs

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

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

I hope you get some relief and the next treatments go better! If it works, it will be but a distant memory. Babs

@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

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

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

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

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

@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??

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

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

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