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ConcernedSib

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ConcernedSib last won the day on March 30

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  • City
    San Jose
  • Country
    USA
  • Gender
    Female
  • Status
    Not a patient
  • Interests
    Cancer treatments

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  1. My sister has been taking Trabecta since late January. Her dx is bm nsclc. Treated with WBRT for brain metastasis with MRI showing shrinking brain lesions with no swelling. Tolerating Trabecta well. Since taking Trabecta, she changed her diet to gluten free organic diet. Really help control her nausea and makes her feel so much better. Can only eat very small meals several times per day. Occasional nausea & vertigo. No swelling at all. Has good & bad days with extreme fatigue. Wakes early with more energy. Energy wanes later in day. Sleeps 10 to 12 hours per day. Doctors and I are encouraging her to get regular exercise. A medical social worker told me that her fatigue could be a cumulative effect of all of her treatments. Hope this information helps. My take away, if you can improve your diet and incorporate some exercise, no matter how small, it helps.
  2. Sorry just found your post as I’ve not logged in for a few days. Thank you for your concern and encouragement. Yes indeed, as I had no idea how many more advancements have been made in this field of LC. it just seems so unbelievable that FDA just approved the targeted drug, Trabecta, just a few months before my sisters diagnosis of bm nsclc. She received 2 weeks of WBRT in Dec. Recent results of MRI indicated lesions shrinking, with no swelling in her brain. Yes!! She’ll have a scan from her head to pelvis next month. (for the lungs?). She sounds hopeful & optimistic but does have some bad days & can get very fatigued especially in the evening. Other than that, no swelling no other side affects except sometimes vertigo. A little nausea at times. Finally she got the covid vaccine & will get 2nd shot in a few weeks. I’ll feel better when she’s fully vaccinated though. Didn’t understand why cancer patients & shutins weren’t a priority for the vaccines. Oh well!!
  3. Also my sister is receiving palliative care which is helping her tremendously. Palliative care is specialized medical care focused on relieving symptoms and stress to a serious illness for any age and any stage of treatment. For more information and Web site: getpalliativecare.org
  4. Wow. Tom and Lexie are just great for offering their experiences and knowledge. Others in this group have given wonderful support to me and others. Just want to ring in re: radiation therapy. My sisters diagnosis on Dec 2020 was BM NSCLC. For the brain, she received 2 weeks of WBRT. Her recent MRI results showed shrinkage of the lesions in her brain. Hooray! In late January, she started Trabecta (just recently approved for her mutation last spring) for her lung tumor. So far so good, as far as virtually no side affects. She meets with her onc to get blood work and more follow up later this week. Her attitude is good and she’s fighting the fight in her 60s. Just read an article in The Atlantic re: the future of messenger RNA and the potential to help with tumors and cancers, as well as finding medicines to cross the blood brain barrier. You have youth and science on your side. And it sounds like you have a good team of professionals and a good support family. You will have good days and bad days on your journey going forward. We will be here to support you. All the best for you.
  5. Thank you for posting and sharing this article. Since I am new to the group, this information is very helpful & encouraging. In 1996, at age 70, my father was diagnosed with LC & was told pretty much to pack his bags, get his affairs in order & go on hospice. Six months later he died a horrible death with excruciating pain when lc metastasized to his bones. Fast forward, 25 years later with my sisters dx of BM nsclc, finding her gene mutation & being able to treat it with targeted therapy, help is on the way. Extremely encouraging. Thumbs up!!
  6. Thank you for your response & concern. Hope you are doing well. I’ve been trying to read & reread as much as I can. I have a little bit of a medical background but am challenged somewhat with the specific studies on the ongoing research to treat LC - although I’ve been quite encouraged & hopeful for my sis. We’re on opposite coasts but we talk & text. She is fiercely independent & is quite determined. Kudos to all the ppl in the fight of their life and the supporting community that surrounds them.
  7. Thank you for your response & concern. Hope you are doing well. I’ve been trying to read & reread as much as I can. I have a little bit of a medical background but am challenged somewhat with the specific studies on the ongoing research to treat LC - although I’ve been quite encouraged & hopeful for my sis. We’re on opposite coasts but we talk & text. She is fiercely independent & is quite determined. Kudos to all the ppl in the fight of their life and the supporting community that surrounds them.
  8. Sorry. Meant to say, hope & pray tumor is shrinking (not tumor-typo)
  9. This is a wonderful blog. My sister diagnosed with brain metastasis nsclc in early Dec 2020. Was treated with WBRT for 2 weeks then put on Trabecta end of January. Her spirits very good but has bad & good days. Results not in yet from recent MRI. Virtually no side effects from Trabecta - no swelling. Mornings and afternoons good for her but evenings very tired. I hope & pray rumor is shrinking. My question, if anyone knows, is my understanding is since lung is primary tumor & brain is where tumor metastasized from, is the Trabecta also treating her “lung cancer cells” that are in her brain? Before this she was extremely healthy, & working into her 60s. Hope everyone in this blog does well with this hard diagnosis & continues to reach out to friends, family & medical community.
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