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  1. Today
  2. Ro, I’ve got my fingers and toes crossed for a good news consult. Stay the course. Tom
  3. You got it! Harvard is working on developing an ALK vaccine but it’s not ready for prime time. Whatever they learn in your trial will likely benefit all of us. I’m so grateful you’ve got the gravitas to pull through this! Hang in there!
  4. Thanks Tomm! If you Google June 2019 ASCO Abstracts you will get a home page with a searchable database. It’s a really useful search tool. Lung cancer is getting a lot of attention due to the emerging science. Let us know if you find anything of interest! 😀
  5. Hi Michelle, I would say that I mainly feel okay. There's a fever for about a day, stomach aches and fatigue. But with treatment on Tuesday, I find that I feel better by Thursday. I'm usually back at the gym by Friday...The trial is time intensive and I'm really eager to see what the scan shows. They say that you may not see results at the 6 weeks scan, and they advice you to continue with the protocol through the 12 week scan..so that's exactly what I'll do.. Thanks for your support!! Ro
  6. Hi Ro I hope this goes well for you. It’s a really interesting trial- gives me such great hope!! Are you feeling okay? You rock! Michelle
  7. Hi SandyK, I was diagnosed one month before I turned age 60 and my situation was like your wife's in that I maintained a healthy lifestyle, worked out regularly, have no family history of this, etc. My diagnosis was Stage IV NSCLC Mucionus Adenocarcinoma.(KRAS mutation)- I had my lower left lung lobe removed using VATS in Sept 2017 and then my upper Right lung lobe removed with an open thoracotomy in October 2017. This was followed by chemo. There was a brief period of NED, and then there was evidence of recurrence in the lower right lobe. I have been taking part in a Phase Ib Clinical trial that uses a personal cancer vaccine and an immunotherapy drug (Tecentriq)..there are lots of options available and I agree what others have said, "knowledge is power." Try to education yourselves as much as possible so that you know what questions to ask. I'm happy to answer any questions once you know more of the specifics regarding typed of cancer. One step at a time, and remember you have this entire network of supporters on this forum ready to help and/or make suggestions. Best, Ro
  8. So, today was my sixth week of my clinical trial with the PSV (Personal Cancer Vaccine) + Tecentriq. My six week CT scan is on Thursday. I'll meet with my doc when I go in for my seventh treatment on Tuesday. Can't wait to see what it shows!! Best, Ro
  9. I was diagnosed a few months ago. I went through a year of scans following a lung nodule that was discovered by accident when I got an abdominal scan for something else. I was lucky to be able to have surgery as a treatment and haven’t required any follow up treatment. Just semi annual scans. I have the unfortunate experience of having had family members with lung cancer diagnosis. Five of my fathers nine siblings have been diagnosed, my father included. That was a while back and the treatments available today were not available to him. I’m glad they exist now but it hurts to know that just a few years could have made such a big difference on his prognosis. Stage IV lung cancer is still a tough disease to fight but it’s not as insurmountable as it was when he was diagnosed.
  10. Yesterday
  11. Hi Kelo, You really have an attitude of such a fighter and taking everything they toss at you and believing in your future. Positive forward thinking is a good thing for all of us. I am really sorry to hear your dealing with pain and I hope your team helps. I hope you have great success with your new protocol. Rower.. That's some nice research you did reading the Society of Oncology Association. (ASCO) abstracts. I'll try and read that too. Possible Durvalumab people: I want you to know that not everyone gets bad side effects but some that do are nice enough to share that information with us so we know what can happen and what to monitor. I am getting infusion #6 on Thursday, my thyroid is off THS 29.63 and I have fatigue and that's all. I have a Naturopath Oncologist that has me taking 18 natural supplements & coconut water. Other Durvalumab Patients: Please post that you are doing well or not and share that good and the bad, it will help others to know we are not alone. good luck fellow travelers
  12. Kleo If this makes sense please let me know😎 Atezolizumab (Tecentriq®) Atezolizumab (Tecentriq, Genentech USA, Inc, San Francisco, CA, USA) is a monoclonal antibody that binds to PD-L1 and blocks its interaction with PD-1, thereby enhancing T-cell activity against tumor cells.21 Durvalumab (Imfinzi®) Durvalumab (Imfinzi, AstraZeneca, Cambridge, UK) is a human IgG1κ monoclonal antibody that blocks the interaction of PD-L1 with the PD-1 and CD80 (B7.1) molecules.25
  13. Yes Rower Michelle!.... This is the new protocol now....just as the durva was. Gotta wonder..... how similar are Tecentriq and durvalumab considering they target the same thing? Just like Keytruda and durvalumab….🤔
  14. Hi Bootsie, sorry it is here that we meet. I was diagnosed about 2 months ago with NSCLC that is not operable. Scheduled for med port placement tomorrow and will begin chemo and radiation on July 1, so it will be all new to me. How did your chemo go? What drugs are you receiving? And how was radiation? I will be receiving Cisplatin and Etoposide. Blessings to you.
  15. Hi. Just started radiation and have. 1 chemo treatment done. Just want to read and see what everyone is saying and how they are dealing with diagnosis/treatment
  16. I’m willing to sell tickets to that show down tomorrow! Anyway, I’m looking at the June 2019 American Society of Oncology Association. (ASCO) abstracts. It appears as if your medical team is humming along with the new chemo immunotherapy protocol. Typically administered when there is no PDL-1 or targeted mutation. Early studies suggest good results in PFS. Ask the doc to show you which abstract is most applicable and have them provide you with a copy. Sounds like this is going to be worth it in the long run. Good luck-lock and load.
  17. Tecentriq is alot like Durva...targets PDL1. I don't have any PDL1 expression. Why am I taking a medicine that targets something I don't even have!?? Seems silly to me. I said that to my onc last time and she said sometimes it works even without PDL1. So does Durva apparently….that's why they give it to everyone regardless! But it didn't work on me... I don't know I just feel like the PDL1 immunos are not my thing. I guess we will battle it out tomorrow...LOL JaneLee….my onc told me the bad shoulder pain I got during durva was probably bursitis..? couldn't lift my arm at all. Then it went completely away after I stopped the durva. That's just ME though...I'm pretty weird! 😏
  18. thanks Curt. we should have the tests back from the biopsy in a week and will then be able to determine what direction to go with treatment. How long ago were you diagnosed?
  19. Hi Aida. I’m sorry to hear about your dad’s pain. Advanced lung cancer and it’s treatment protocols can be unfortunately painful. Often strong pain medication is required. You should discuss ALL of his symptoms and side affects with his doctors. Don’t assume any of it is normal. Always run it past them. I hope things improve for him soon. Hang in there.
  20. I’m sorry to hear about your wife’s diagnosis SandyK. You’ve gotten some great guidance and advice from Michelle and Tom. Ignore the numbers on the internet (they are dated), educate yourself and definitely get good genetic testing done. Not all panels are created equal. Targeted therapies for specific types of lung cancer can be more affective. Sometimes this disease requires one hour at a time. Your wife is lucky to have such a great support system. Hang in there.
  21. He is back in hospital with major chest pain. They are saying his lungs are rejecting the antibiotics. Doesn’t he need to take antibiotics on chemo? It’s his last option. Will they tell him to stop chemo?
  22. Kleo sorry to hear you have so much pain. I'm on the Durvalumab and have joint and muscle pains also but I have always put it down to the hypothyroidism. I never realised it could be a Durvalumab reaction.
  23. Hey Kleo I'd try a hit of that Gerflooberglobbin over here but I'm still pixellating on the Prednisone, it sounds a little German to me though, somethin like Der Gooberflobbin is akickin se poopinhockin outen mein poopinhopper, but in all honesty and seriousness am sorry to hear about the pain with the new treatments, seems if it aint one tham dang it's another right?
  24. Donna, the potential for major tissue damage with leakage of chemo drugs into the tissues is the very reason I asked for a port. Also, for the six days in a row that I will receive chemo, if I didn’t have a port, I understand I would have a new IV started each day. That’s nuts!!! So the potential to blow six veins would exist and who knows what. Wow you got this combo 22 years ago??? I guess that’s good to know, if you are communicating with me on this board in 2019!!! So happy you are still cancer free and really happy you replied to my post. You have given me much hope. Blessings to you. adding: So very sorry you lost your husband to lung cancer.
  25. Last week
  26. Kleo Don't feel like this is the right stuff for me. I bet he will convince you otherwise. 😎
  27. Grouchy is acceptable. Sorry about the pain. I’ve only had 4 infusions and I have pain in my foot joints occasionally which I had for years then it went away during chemo and radiation. Never figured that out
  28. Haahaaahaaa! Bob you are so funny!🤣 Yeah they just approved that Tecentriq/ Avastin combo with chemo here. So that's what they are trying...even though I don't have PDL1😣 I'm gonna have a lil chat with my onc Wed. Don't feel like this is the right stuff for me.
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