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Shelkay1

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Shelkay1 last won the day on September 27 2018

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About Shelkay1

  • Birthday 08/31/1959

Profile Information

  • City
    New Holland
  • US State (if applicable)
    PENNSYLVANIA
  • Country
    US
  • Status
    Lung cancer patient/survivor
  • Interests
    BRAF V600E

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  1. Thanks for all your work you put into Friday's Lunch and Learn in Philly; it was a good day with good speakers!

  2. Hello all! I thought I'd update you all on what's been happening. I started the targeted therapy drugs Tafinlar/Mekinist on 4/14 for my BRAF V600E mutation. Not too many side effect until about 5 weeks in, then I started with fever, aches & headaches. My doctor had me take a break from them for 5 days; I restarted them; symptoms returned a couple days later. I was advised to stay on them unless my temperature got over 103°, tough but I stuck it out. My scan to see how they were working was on 6/10... after just a short time I am NED!! 3 tumors just gone! I'll be staying on the meds (smaller dosage) for as long as they keep doing their job. Effects are less now & I'm feeling a lot more hopeful about my future. I've been staying away from this and the FB lung cancer group I'm on, trying not to dwell too much on my own cancer & just live the best life I can in spite of it. But I did want to give you all my good news!
  3. I talked with a rep at the Bonnie J. Addario Lung Cancer Foundation on Tuesday, I'm the 1st BRAF V600E patient she has encountered. She is going to do some research for me on this mutation and possible trialsb she gave me the name of someone at Penn Medicine who is familiar with and has treated patients this mutation. She also gave me the name of a nurse navigator I can use. Where I'm currently going does not use nurse navigators & I've felt like I just get pushed from one doctor to the next and have no one person to help guide me along. I'm actually looking forward to my 2nd opinion appointment on Friday. If anyone out there reading this has the BRAF V600E mutation, I'd like to hear from you & learn of your treatment experiences. Thanks!
  4. Thanks Michelle, I spent the last few days watching The Bonnie J. Addario Lung Cancer Living Room videos & reading in her book. I had never really looked at her stuff before, a lot of good information, but not much at all on the BRAF V600E mutation (pronounced B -Raff). My PET scan is tomorrow, next week is a check by my pulmonologist & an echocardiogram & on 4/9 is back to the oncologist. I also had to see my eye doctor before I'd be able to start the treatment they are recommending. I'm still waiting to get an appointment for my 2nd opinion at Penn Medicine in Philadelphia. Thank you too Colleen, I was happy to hear you had gotten good news.
  5. Update on Thursday's doctors visit. The biomarker testing came back saying my NSCLC (Adenocarcinoma) cancer has a BRAF V600E mutation. Apparently this is rare; only 2% of NSCLC patients have this mutation. This type is not responsive to chemotherapy or immunotherapy drugs. Basically the chemo was a total waste of money and time, as well as all the side effects I had, some still continuing. It is somewhat responsive to a targeted drug therapy combination dabrafenib and trametinib (Mekinist, Tafinlar), what these drugs are supposed to do is target the specific cancer cells and starve them. Although this is a rare mutation in lung cancer, it is found in other types, so this is how they have an FDA approved drug available. My oncologist tells me and most of what I find says this is my only option. I can't find a lot of discussion on here about this mutation/drug combination. Anyone here have experience or information? I'm working on trying to get a 2nd opinion on this. We've got at least 50 pages of information to read, so it going to take a while to figure this all out. Any input is appreciated. Thanks!
  6. Good Morning Ana M! I can really relate to your pain. My lobectomy was on 9/14. My doctor said this is normal due to the nerves being cut, but to doesn't make it any better. I am on Gabapentin for my nerve pain 2 300mg caps 3xdaily. I am a large busted woman and the extra weight on my chest can be very uncomfortable. I do wear a very stretchy bra for a little support & it does help. A few years my PCP asked if I'd ever consider a reduction; these days I'm wishing I had. I feel your pain
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