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Shelkay1 last won the day on September 27 2018

Shelkay1 had the most liked content!

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About Shelkay1

  • Birthday 08/31/1959

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    New Holland
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  • Status
    Lung cancer patient/survivor
  • Interests
    BRAF V600E

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  1. Thanks, I'd appreciate that. Hopefully there are others on this forum with that mutation.
  2. I was part of that thread; no one who replied actually have the BRAF mutation except the person who started it & they've not been back since starting it.
  3. Thanks for all your work you put into Friday's Lunch and Learn in Philly; it was a good day with good speakers!

  4. Is there a BRAF V600E subforum?
  5. 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!
  6. I'm on a pill form targeted drug therapy combination (Tafinlar/Mekinist) for a BRAF V600E mutation. Because these are considered to be a form of chemotherapy, there are no copays on them. Talk to your insurance provider to find out before deciding anything. A lot of drug companies also have an assistance plan as well.
  7. 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!
  8. 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.
  9. 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!
  10. When my nodules first started to grow & change it was noticed during an annual CT scan monitoring them. I had a needle guided biopsy to determine it was cancer and then a bronchoscopy and a medianoscopy to check lymph nodes. I guess everyone's experiences are different; for me the bronchoscopy was the easiest of the three. When you have the needle biopsy, you'll probably get some light sedatives & numbing injections. Afterwards you'll need to stay in the bed for 2 hours, then get an x-ray to make sure you don't have any air pockets in your lungs. If you do have air, they will wait and x-ray again in another 1 -2 hours to make sure its going away or at least not getting any worse. A band aid is all that is needed to cover the site. Do plan on taking it easy the next day or two. Ask your doctor prior to this appointment about biomarker testing. If they can do this, there is a required minimum amount of tissue required for this testing. The first time I had this, I went to work the following day; I did take an extra day off after the 2nd one.
  11. Thanks Laurel & Bridget, I find myself thinking of the worst possible scenarios when I'm feeling my worst & unable to sleep. I know I need to chill & just wait for the MRI results, think positively in the meantime & enjoy Christmastime with my family.
  12. Third infusion of Cisplatin/Alimta was on Thursday. Side effects started that same evening. I've had a major headache for the last several weeks that just will not go away & some swelling around my eyes. Doctor has ordered an MRI of my brain (12/20) to make sure it's not metastasized there. When they did the lobectomy, they were unable to get all the cancer & on the TNM scale my M was labeled as X because of unknowns. I've been reading up on this & I see there is a 30%-40% chance of brain metasis & that chemo does not cross over & help destroy any cancer cells getting to the brain. I know I should stop reading so much!
  13. My 2nd chemo was on 11/15, I had some different & longer lasting side effects from the first time. I can't wait to see what fun #3 has in store for me! I have great medical insurance, I do pay extra since I've had ongoing health issues other than lung cancer. Except for my deductable, everything has been covered for my testing, lobectomy & treatments. I just saw the bills for my chemo treatments alone & was floored! How does anyone who is un/under insured survive this financially? Fighting this disease is hard enough physically, emotionally and mentally... but to have to worry about the financial too?? I guess maybe all this is where we can thank the "Obama Care" program for making sure everyone has insurance & the lifetime maximum insurance payouts have been removed.
  14. My cancer is adenocarcinoma, there is a link near the beginning of this where you can get this in a printable & easy to read format. If they have it for adenocarcinoma, I'm sure they have for other types too. Best wishes for your mom. https://lungevity.org/for-patients-caregivers/lung-cancer-101/types-of-lung-cancer/lung-adenocarcinoma
  15. I live near a couple of local cancer centers, but chose to travel an hour away to Penn State Hershey's Cancer Center. I chose not get 2nd opinion. I had read several well respected articles, including Lungevity's. If you have not read it, I highly recommend it. Every test done & every procedure done was just like outlined. Typically if there is any reason they believe there is lymph node activity or any mestatisis, they will do biopsy 1st, then perhaps a bronchoscopy or a medianoscopy. If they are moving straight to surgery, it could be a good thing. Tumor contained in 1 lobe, no lymph node involvement & no mestatisis - sounds to me like they are moving in the right direction. But... If your mother chooses a 2nd opinion, encourage & support her in it.
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