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Rower Michelle

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Everything posted by Rower Michelle

  1. Hi Ale, Just saw the American Lung Association is having a virtual patient meet up on May 11th. One of the break out sessions is dedicated to advances in HER2 lung cancer. Thought you might want to check it out.
  2. Just want to echo Bridget's sage advice- I also take a number of supplements, all of them were reviewed and approved by the pharmacist. (The oncologist generally will say don't take any supplements). Memorial Sloan Kettering maintains a database of common supplements that you can check for yourself in advance of the appointment: https://www.mskcc.org/cancer-care/diagnosis-treatment/symptom-management/integrative-medicine/herbs Best of luck to you as you get this show on the road!
  3. Ale, That's great news, it sounds like you are starting to turn the corner. You might want to check out Andrew Weill MD's Anti-inflammatory Diet. Some of my friends who have had radiation have found it helpful. I've been following for a few years and feel my energy levels are better. Unfortunately, it's as you suspect, lots of vegetables, so the "fun" foods aren't on the list. But in this battle you need every weapon at your disposal: https://www.drweil.com/diet-nutrition/anti-inflammatory-diet-pyramid/dr-weils-anti-inflammatory-diet/
  4. Hi Steff, The exact same situation occurred with one of my ALK Positive peers! Since Medicare is a federal program, managing the appeals process was almost pointless. My friend had to file complaints with both her Senators, Congressional Rep, and finally the State Attorney General. In the end it was the AG office that contacted someone in Washington DC that got the approval for the dosage increase. A few of the other ALKs with private insurance had the same problem when their ALK inhibitor (targeted therapy) was prescribed at above the recommended dose. It was a major hassle that
  5. A second opinion actually saved my life. Initially there was limited biomarker testing done for only the most "common" mutations. All of the typical tests turned up with nothing, until I received a second opinion, a comprehensive biomarker panel was completed where it was discovered I did actually have a targetable mutation. Second opinions are really not a good description. I think of it along the lines of an expert consultation. With all the scientific advances in lung cancer, it's almost impossible for a general medical oncologist to keep track of the emerging therapies. In the event
  6. Ale- People beat the odds, every day. With each year, there's more treatments available for lung cancer. Early on in my diagnosis my doctor suggested I read this essay: https://journalofethics.ama-assn.org/article/median-isnt-message/2013-01 I found this really helpful in understanding that there is a lot of hope on the horizon. Right now, it's a day by day process, as soon as the treatment plan gets established, you will begin to feel a little more settled. Michelle
  7. That sounds right to me for now, the radiation is typically used for the bones. In my case, I did seek a second opinion where radiation on my spine was not recommended pending the biomarker biopsy results. I have the ALK mutation. Since ALK targeted therapy is very good at knocking out cancer cells on the bones, I started targeted therapy in October and by February, the bones were healing. It took about a year or so before no cancer was detected on the scans. Radiating the lungs can also be an option but that typically follows chemotherapy or immunotherapy. There’s lots of tools
  8. Hi Jesse, Welcome here. The first thing I want to say is with all the scientific advances in lung cancer treatment today, we don’t look anything like those people on TV. Smoking doesn’t cause lung cancer, it’s a risk factor. I never smoked and found out that anyone with lungs can get lung cancer. In the early days of my diagnosis in September, 2018, I received the same expected “stare” from almost everyone when I told them I had lung cancer. When I started treatment, with a Stage IV diagnosis, the word remission wasn’t in my vocabulary, yet here I am, almost three years into thi
  9. Hi Ale, I wish we could just be given a list of “here eat this!” I do see an integrative oncologist who recommended the Andrew Weil MD Anti Inflammatory Diet. Generally I avoid sugar and any processed food- but the bottom line is you do what you gotta do to get through treatment. For sore throats I use Manuka honey form New Zealand with a high floral count mixed in with warm lemon water. Of course the handiest little gadget is my Magic Bullet-along with the Big Book of Juices (Rather than juicing just throw the stuff in the Bullet) I think this will help get you sta
  10. Hi Jack I wanted to let you know the University of Colorado under the direction of Ross Camidge MD routinely tracks tumor markers for lung cancer surveillance. https://coloradocancerblogs.org/blood-tumor-markers-may-warn-lung-cancer-patients-progressing-targeted-treatments/ A big however is coming—- Mass General, another lung cancer center of excellent does not routinely track these markers as they can be highly unreliable. I’ve had this debate with my own oncologist twice in the last two years. He vetoed tumor markers. Said he actually drew his own markers and
  11. Hi Ale, A belated welcome from someone who is actually one of those mutants. I was diagnosed in September, 2018, the ALK mutation was identified about a month later. It was an agonizing month. Like you I had some small spots on my spine along with my right hip and ribs. When I started the targeted therapy, that cough that had been worsening for months (broken rib too) disappeared within an hour. We were astonished. After my first scan there were improvements noted and by April, 2019 I was No Evidence of Disease (new way of saying remission). I would urg
  12. Rower Michelle

    NED is NED.

    We are celebrating right along with ya bro!
  13. I’ve got a clue here- call your doc and report this. Shortly after my diagnosis I was on some pretty heavy opiates to “help” control that cough. When I took my first targeted therapy pill, my cough instantly disappeared. So I called the clinic & can I stop taking all this crap? Short answer was NOPE. I had a six week taper. I think you’ve got a minor case of withdrawal. Your team can either do a taper with a renewed script or give you another medication to make you more comfortable. It boils down to our DNA in how opiates are processed. Some people aren’t very affected whil
  14. My friend @Tom Galli says getting "the battle rattle" is key to survivorship. Having a determined mindset sets the tone for starting treatment. It sends a strong message to the nurses too, your boyfriend is ready to as we call it "get the show on the road". Your boyfriend's daughter probably has a perception about the old days of chemo. A lot has changed in the last three years. There has been more treatment advances in the last three years than in the last thirty. There is a mindset shift from "what if" to "what comes next". There are treatment options today, people can live with
  15. Hello and welcome, You’ve already heard from the amazing people here in how they approached the first round of treatment. I was diagnosed at the age of 51, the initial biomarker studies yielded nothing targetable. I still remembered how my Grandmother suffered through chemo when I was a child and my initial reaction was to not go down the chemo path. We had spoken to a few close friends who were devastated but no one pressured us into doing treatment because they held the same misconceptions about lung cancer treatment I had. The next appointment with my oncologist I told hi
  16. Hi Deirdre, Hello from me too, I was 51 at the time of my ALK diagnosis so I understand the cumulative impact of being on long term targeted therapy. After 27 months, I have more fatigue now than I did when I started treatment. I take a nap every day like clockwork at 2pm, anywhere from 20-60 minutes. Getting out of bed even after a good nights sleep is always a big hump to overcome, but I have to take my meds twice a day 12 hours apart, that’s enough incentive for me to get moving. The itchy skin is definitely Tagrisso, it’s hard to find a dermatologist who understands how
  17. Hi Curry, My apologies for the belated welcome. We can all relate to the gut punching phone call upon receiving this dreadful news. I was 51 and a "healthy" competitive athlete that spent months in and out of multiple PCP offices before getting properly diagnosed. You've receive a lot of great advice here. I also had a broken rib from the cough spasms, and bone mets. That was 2 1/2 years ago, today, my cancer is No Evidence of Disease (new way of saying remission). Filing for short term disability, then long term disability for me, worked out very well. My employer had a gen
  18. That kid. Yeah, yesterday the City declared it “Mahomes” Monday. I showed up for a Board Meeting on Zoom for KU Cancer Center with people wearing their Chiefs jerseys AND wearing Mahomes wigs. It was more like a Halloween party. The mood was quite festive as the employees have all been vaccinated meanwhile for those of us who were survivors on the Zoom practiced our evil stares. As for me, I’ll stick with my beloved Giants, playoffs or not.
  19. Hi Susan- wow that post was a looong time ago! I’m still here, in remission, 27 months on therapy. Never let go of your hope!! Michelle
  20. Ro, I’m so sorry the second clinical trial didn’t work out. Thank you for being so brave and giving it a shot. Hoping that this next round knocks the cancer down. As always you will be in my continued prayers. You’ve got the A team on board. Is the radonc out of the picture?
  21. Darlene, I have done the same! My State Legislators have responded with their agreement, but the Governor is not budging! So much for government by the people for the people. This is vaccination by paycheck, not priority patients. Thanks for spending your time (and more importantly your energy) advocating for your brothers and sisters! Michelle
  22. My friend, I will be with you in spirit when I head to the hospital tomorrow afternoon for all of my scans as well. Happy meds on board of course for the long brain MRI. Good luck to you!
  23. Gary, I read your post this morning & nearly teared up (I guess that’s Monday scanxiety kicking in). You’ve quoted the mission of The White Ribbon Project beautifully. IT’S UP TO US!!! Politicians and cancer centers have failed our community. Now is the time to STAND TOGETHER. My gas tank is empty today after a war ensued with KU CC to get cancer patients prioritized for COVID vaccines. Late Friday night the Medical Director caved FINALLY sending a letter to the Governor’s HHS Secretary leading the COVID response. We have the power to change how we are treat
  24. When the time is right Linda, I can't wait to tell you about The White Ribbon Project!!! It's my next great adventure into raising lung cancer awareness. Check out the early adopters on Twitter: @TheWRP4LC.... grass roots movement that has exploded onto the scene! All the best! Michelle
  25. I was off line yesterday, carpet bombing the State of KS to advocate for cancer patients to be prioritized for COVID Vaccinations. In KS, cancer patients are behind thousands of healthy young people and incarcerated criminals! When I woke up from my nap this afternoon, Tim said, "you better go check your phone- it's been pinging for an hour". Lo and behold, this article is making it's way around the lung cancer community!!! I'm so grateful for the opportunity to participate in this effort to raise much needed awareness. If we can help one person from falling into the deep dark hole, i
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