Babs Posted May 18, 2021 Share Posted May 18, 2021 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 Link to comment Share on other sites More sharing options...
Rower Michelle Posted May 18, 2021 Share Posted May 18, 2021 Hey Babs Good to hear from you! These are always very difficult choices. While I haven’t been on that therapy combo, I do understand it is high test chemo. I would certainly explore all the clinical trial options first by contacting both the Go2 Foundation & Lungevity Help Lines. I would also be asking your team if you do move forward with the chemo combo, what would be the next line of therapy and would you be disqualified from participating in future clinical trials. Keep us posted! Link to comment Share on other sites More sharing options...
LexieCat Posted May 18, 2021 Share Posted May 18, 2021 Hey, Babs, Trust me, I know how tough it can be to decide on courses of treatment. I was discouraged from opting for radiation as part of my first line treatment after my recurrence last year, for roughly the same reason--too much damage to other stuff (in my case, esophagus) due to the location of the tumor. I'd second Michelle's suggestion to explore possible other clinical trials--those that maybe your docs aren't aware of. Hang in there and keep us posted! Link to comment Share on other sites More sharing options...
Tom Galli Posted May 18, 2021 Share Posted May 18, 2021 Babs, Oh man! We seem to be in a immunotherapy recurrence phase. It sounds like you have good advice from your radiation oncologist. Piercing the trachea is not a good thing. All my chemotherapy experience is in the dark ages of treatment. I had only Taxol and Carboplatin but I know them well for I had 18 total infusions. Bone and joint pain were two of my most troubling side effects. I think getting information on trials can't hurt. Stay the course. Tom Link to comment Share on other sites More sharing options...
Babs Posted May 18, 2021 Author Share Posted May 18, 2021 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 Link to comment Share on other sites More sharing options...
LexieCat Posted May 18, 2021 Share Posted May 18, 2021 47 minutes ago, Babs said: 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. It's @Sandy N (thank you, recently fixed search function!): Link to comment Share on other sites More sharing options...
Jennedy Posted May 24, 2021 Share Posted May 24, 2021 I started this combo last Thursday. I seemed to have missed the prescription for the steroids I was to take the 2 days after. I don't know if that would've changed how I feel. I am very fatigued. I never recovered completely from Carboplatin 6 wks ago. My mouth does have a funny taste. A little diarrhea. No nausea (those premeds help with that). I told my son-in-law that I feel like a ran a marathon. My muscles are that tired. Link to comment Share on other sites More sharing options...
Babs Posted May 25, 2021 Author Share Posted May 25, 2021 @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?? Link to comment Share on other sites More sharing options...
Sandy N Posted May 26, 2021 Share Posted May 26, 2021 The side effects of the Tax/Cyr are miserable. For me the worst side effects are the debilitating muscle/leg weakness, mouth sores and having absolutely no taste buds. There are others as well but I could sure deal with them as opposed to what I'm going through now. I just hope the misery is worth it. Let me know what direction you're going to go and if you decide to go this direction, please feel free to reach out with any questions or even just to vent! This stuff will make you want to vent, that's for sure! Link to comment Share on other sites More sharing options...
LexieCat Posted May 26, 2021 Share Posted May 26, 2021 Hoping you all get through this without too much misery. How long do folks typically stay on this course of treatment? Link to comment Share on other sites More sharing options...
Sandy N Posted May 26, 2021 Share Posted May 26, 2021 2 hours ago, LexieCat said: Hoping you all get through this without too much misery. How long do folks typically stay on this course of treatment? I was on 80% dose of the Tax until this last Friday and they lowered it to 50%. I have another treatment in 3 weeks at that lowered dose and then a scan to see where I'm at and that will determine if I need any further treatments or if I can go on maintenance. I'm hoping for the latter, of course. Because I haven't been getting full dosages, there's the chance I could continue on with a couple more to make sure I eat the whole bag of cookies. LOL! Link to comment Share on other sites More sharing options...
LexieCat Posted May 26, 2021 Share Posted May 26, 2021 I'll keep my fingers crossed for you! Link to comment Share on other sites More sharing options...
Babs Posted May 28, 2021 Author Share Posted May 28, 2021 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 Link to comment Share on other sites More sharing options...
Rower Michelle Posted May 28, 2021 Share Posted May 28, 2021 I’m glad the GO2Foundation was able to locate another potential trial for you. It’s impossible for medical oncologists to keep up with all the trials- which is good news fir us. Link to comment Share on other sites More sharing options...
LexieCat Posted May 28, 2021 Share Posted May 28, 2021 Babs, I don't think you need a doctor's referral. You should be able to make the call yourself to set up an appointment to be evaluated for eligibility. That's what I did. I did have to wrangle a research nurse who was incorrectly interpreting my oncologist's notes and telling me I was ineligible for that reason, but we got that straightened out within a day and it was just another day or two before I saw the doctor running the study. Link to comment Share on other sites More sharing options...
Babs Posted May 28, 2021 Author Share Posted May 28, 2021 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 Link to comment Share on other sites More sharing options...
LUNGevityKristin Posted May 28, 2021 Share Posted May 28, 2021 LUNGevity has many resources for someone thinking about a clinical trial. You can speak with a Clinical Trial Navigator, get matched with a Clinical Trial Ambassador (someone who has been through the process themselves) and more. Here is where to get started: https://lungevity.org/for-patients-caregivers/lung-cancer-101/treatment-options/clinical-trials Link to comment Share on other sites More sharing options...
Babs Posted May 28, 2021 Author Share Posted May 28, 2021 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 Link to comment Share on other sites More sharing options...
Babs Posted May 28, 2021 Author Share Posted May 28, 2021 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 Link to comment Share on other sites More sharing options...
LexieCat Posted May 28, 2021 Share Posted May 28, 2021 Great! Yeah, I always feel better when I can push something along. I imagine there's some lead time involved with any trial (not all probably require as much testing as mine did), so anything that can be done to move it along is a good thing. Link to comment Share on other sites More sharing options...
Jennedy Posted May 28, 2021 Share Posted May 28, 2021 @Babs I'm very weak. I also have tachycardia that I just started on meds for. That started before the Taxotere. I'm having pain in my lower abdomin. I hope this trial works for you. Link to comment Share on other sites More sharing options...
Babs Posted May 28, 2021 Author Share Posted May 28, 2021 @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 Link to comment Share on other sites More sharing options...
Jennedy Posted May 28, 2021 Share Posted May 28, 2021 Just finished my first. Well, today is day 9. I am scheduled for 3 more. My oncologist seems to think the pain is from the back and forth with constipation and diarrhea. I see a palliative care doctor next week to hopefully sort that out. Link to comment Share on other sites More sharing options...
Babs Posted May 28, 2021 Author Share Posted May 28, 2021 I hope you get some relief and the next treatments go better! If it works, it will be but a distant memory. Babs Link to comment Share on other sites More sharing options...
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