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LexieCat last won the day on December 2

LexieCat had the most liked content!


About LexieCat

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    Lung cancer patient/survivor

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  1. My oncologist said I could go ahead and try an antihistamine as an adjunct to my immunotherapy (Tecentriq)--she just emailed me that drugs in the class mentioned included Zyrtec, Claratin, and Allegra. This article, which discusses the MD Anderson article, also mentions those three. https://www.genengnews.com/news/2nd-gen-antihistamine-drugs-may-improve-outcomes-for-cancer-patients-receiving-immunotherapy/ Just a reminder to anyone on the Forums--be sure your oncologist knows about (and approves) any medications you are taking--including OTC meds like these.
  2. LexieCat

    I/Os for PDL1/-1

    I just talked with my oncologist about my next immunotherapy. I had Keytruda as part of the triplet (with Alimta and carboplatin) and had progression after switching to maintenance doses. Then did a clinical trial of TIL therapy (another form of immunotherapy) and after an initially great response, again had progression. On the table today were Opdivo + Yervoy, Keytruda alone, or Tecentriq alone. Even though they are similar, they aren't identical, plus my doc felt it had been long enough since my last Keytruda infusion that it might be worth trying again. Ultimately, we settled on Tecentriq, which targets PDL1 (Keytruda and, I believe, Opdivo target PD1). I think the immune system is a funny thing. All kinds of things affect it and my doctor says sometimes with a break in between, something that didn't work perfectly before might work again. They are still figuring this stuff out. Incidentally, my doc is also gonna prescribe an antihistamine on the "couldn't hurt to try" theory, given the recent research that certain antihistamines can enhance immunotherapy.
  3. Just got message from my oncologist, who found the article very interesting. She wasn't sure yet how to translate that into clinical practice, but she said we'd talk about it next week.
  4. Thanks very much, Jack! I passed the link to my oncologist to discuss next week. I found it especially interesting since a lot of my coughing seems related to sinus/nasal mucus--I'm blowing my nose a lot. The steroids do seem to be helping with the cough and SoB. Anyway, if antihistamines also helped with the immunotherapy (I know steroids work against it), it seems like it might be worth a try.
  5. Do you have a link to that article, Jack? Thanks for sharing it.
  6. I totally LOVED my surgeon who did my lobectomy and asked if I could have him do the followup monitoring. He said, well, I COULD do that, but if there is a recurrence, you would be looking at chemo or other drug treatment, not surgery. That made sense to me--and it helps to establish the relationship before you need chemo or drug therapy. Just my two cents.
  7. Actually, I posted that in 2020. I haven't had to reach out to them for care as yet, though I may need to soon. I'm back at Penn Medicine for this trial (I was in a trial at a different medical center this summer, so I discontinued the visits). Thanks for the reminder--I'll make it a point to drop them a line.
  8. Congrats, Glenn--wonderful news! I'm sorry your brother is having a rough time of it. Tell him the Lungevity crew are all pulling for him.
  9. You can send me a private message, using the envelope icon at the upper right of the page.
  10. Hi there, and welcome. I'm in pretty much the same situation--Stage IV, no targetable mutations. I had progression on maintenance therapy (Keytruda and Alimta), after which I enrolled in a clinical trial of TIL (tumor-infiltrating lymphocytes) therapy. After a terrific initial response, I again had progression and pericardial effusion, which proved to have cancer cells. So I'm figuring out my own next move--most likely either a clinical trial of a new monoclonal antibody combined with Keytruda, or a new radiation therapy technique.
  11. Hi, Mona, Sorry to hear your husband is having such a rough time of it. You seem to misunderstand what palliative care is--it's simply care to relieve the symptoms of the disease or side-effects of treatment. You can get palliative care any time you need it--you don't have to be forgoing treatment. It isn't hospice. People with early stage disease can take advantage of palliative care to relieve symptoms like pain, nausea, coughing, etc.--all while receiving chemo or other treatment. The goal is to make the patient more comfortable. If your husband can get relief from a palliative care practitioner, he may find the treatments far more tolerable. It's certainly worth a shot.
  12. LexieCat


    I had joint pain--temporarily--after a couple of the first Zometa infusions I had. Ultimately the docs and I concluded the pain was from arthritis, not the Zometa. It did not appear to be directly connected to the infusions. My next infusion is next week, but I didn't have any symptoms after the last one, three months ago.
  13. Gotcha. It will be interesting to hear what the doctor has to say. Again--good luck. I'm sure that, regardless of his decisions and attitude toward treatment, you want him to live out whatever time he has left peacefully.
  14. Hi there, They can probably make a good guess if he has a large mass and other evident metastases, though lung cancer can't be definitively diagnosed that way. It wouldn't surprise me if the doctor said something like, "This is what we think is going on--you need to come in for more tests," your dad said thanks but no thanks, and the doctor said assuming it is cancer, here's what's likely to happen. I don't know, though--I've heard of other patients being told they had lung cancer with only scans to go on. That shouldn't happen but it isn't unheard of. I think the bottom line is that unless your dad is incompetent (and it doesn't sound like he is), he doesn't have to accept treatment, nor does he have to share his medical info--even with family. It's a tough situation for you to be in. A lot of people have this vision of lung cancer as a swiftly lethal disease, where the treatments are almost as bad. You might tell him that treatments have come a long way and he might feel better and have more good time ahead if he proceeds with diagnosis and treatment. But if he's truly ready to check out, there probably isn't a lot you can do. Good luck.
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