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Rower Michelle

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Everything posted by Rower Michelle

  1. Short term disability is a pain but automatic approval for any lung cancer diagnosis. Even after my stage IV diagnosis I had a “case manager” pestering me for my return to work plan. I looked up the gal on LinkedIn only to find her previous “experience”’was a retail manager at Talbots. (Yes, for real). A quick call to HR to call off the dogs made the whole STD process much smoother. Rather than burn through vacation, check with HR about their policy. Who knows, you can save that vacation time & do something fun instead. HR is obligated by federal law to keep your situation confidential. I didn’t have to use any of my accrued time off. It’s a great idea to engage your parents, we need all the help we can get, they will take the lead from you. My parents were the last people we told. I had a number of practice sessions with friends and colleagues before the call with my parents. That was helpful because I found it hard to share what was going on. The public perception of lung cancer tends to freak people out. The reality is research has come a long way- and is still moving quickly. While you’re ordering the wedge pillow you might want to make a small investment in some organic essential oils & diffuser. Lavender and Frankincense for one hour are very calming and can help you fall asleep. Google is not our friend but if you’re going to do any research try & stick to a 15 minute limit to avoid any rabbit holes. You may want to check out Andrew Weill MDs 4-7-8 breathing exercise. It helps with a lot of things. Even if you’re coughing you can do what you can- 2-4-6 etc Once treatment gets underway, the process levels out. We took six vacations the first year after diagnosis… You’re doing great, keep going
  2. Hi Ashley, Your understanding of the brain MRI is correct. It’s part of the standard battery of testing. It’s also very expensive so Lexie’s advice is excellent. The last brain MRI & chest CT I had in July was $21,000 billed to the insurance. You don’t have to pay everything up front. It’s possible to work out a reasonable monthly plan so you don’t blow up your finances. A friend of mine paid $40 a month until they had a handle on a new insurance plan. Do pay careful attention to all the incoming EOBs, if anything is denied be sure to file an appeal. Don’t pay any hospital bills until the EOB comes in. Also politely decline any advance payment requests. You might have to ask HR for help if there are any billing issues. Managing insurance can be a part time job. I spent years in the business and can’t believe how incompetent the health system is. University of Colorado is the gold standard in Denver under the direction of Ross Camidge MD, he is Internationally recognized. KP will provide a second opinion for him. In the best scenario, Dr Camidge or someone from his team would design the treatment plan for KP to implement. As for the work situation, I held off saying anything initially to my employer until I had the lung cancer diagnosis. Now that you know, it’s probably best to give them a heads up. I was already on Short Term Disability subsequent to being hospitalized for pneumonia. I also filed for FMLA. Word of wisdom-there are two case managers, one for FMLA and another to STD. Totally confusing process. I would consider filing for STD soon as you can as it may not be possible to keep up a demanding work pace with your current sleep schedule for much longer. Plus you run the risk of getting sick & you don’t want any complications as you’re starting treatment. You don’t want to risk the perception of a performance issue. Rest is the most important issue right now. I get the difficulty in managing a work schedule, those emails, projects and meetings can wait. It’s a hard transition to put yourself first. Everything else can wait when it comes to work. Self care is an art and a skill.. we can all pitch in to help. Michelle
  3. Hello and Welcome. So glad you found us- I just read the thread this morning. There is another critical piece of the diagnostic process, a brain MRI. This is the standard of care. I’ve seen instances where this was missed even by some of the large cancer centers. The emotional rollercoaster is “normal”. I was diagnosed three years ago and remember calmly pulling out my employer’s short term disability policy-somehow I held it together until I didn’t. Sleep is really important and that cough is probably interrupting to say the least. The pearls did nothing for me. I had an opiate cough syrup every six hours which didn’t touch the cough but the opiate prescription every four hours did help along with a wedge pillow. Ask your doctor for a short term anti anxiety medication. I wish I had. It can be helpful. If you don’t mind my asking, where are you treated? Obtaining a second opinion is also very important- in Denver there are “the big dogs” of lung cancer, some of the best in the world. It’s worth considering. I have a mutation and can say that Lexie is correct, targeted therapy is the standard of care. Immunotherapy is ineffective when there is a mutation. The specifics will be determined by the PET, Brain MRI and biomarker results. For stage 3 mutated lung cancer a common scenario would be surgery, chemo, radiation and then maintenance targeted therapy. I was diagnosed at stage IV, while we we’re waiting for the biomarker testing to come back, I did have a “triplet” of Carboplatin, Altimpta, Keytruda. My cough was so bad I had broken a rib, so my medical team opted to start treatment immediately. When the biomarker testing came in, I was switched to targeted therapy. When I started the targeted therapy, the cough disappeared. The odds are pretty high that you might have a mutation given your age. Targeted therapy is also emerging in earlier stages to prevent recurrence which represents a shift in the medical community. Once you have a full treatment plan I’d strongly recommend contacting either Lungevity or the Go2Foundation for a phone buddy. I found it very helpful to talk to someone with a similar experience… I can say things to her that I really can’t talk to about anyone else… Finally, in Denver you are in the backyard of The White Ribbon Project. They are an awesome group of people and you can get a free white ribbon. Check it out at www.thewhiteribbonproject.org Brighter days are coming. Let us know how we can help. Michelle
  4. HA! I knew it! We call it EvilCore or NeverCore. They have a MO of delay or deny almost everything. Cigna knows this and they don’t seem to care so the only ammunition we have is the benefit manager at Human Resources make ALOT of noise. EvilCore denied my PET and initial chemo. The rational for chemo denial was “ matter of convenience”. Ridiculous. They also don’t have board certified oncologists reviewing the requests either. If your HR department can’t deal with it each state has a Department of Insurance unit under the Attorney General’s Office of Consumer Protection. Call ‘em if you need to. Unfortunately it’s the only way to get NeverCore to move…. I also wrote a letter to the editor of the Wall Street Journal which was published…. So writing the local newspaper is also useful. Right @Lisa Haines?!!
  5. Hey everyone, I just got a very interesting email from my local American Lung Association Advocate. She was enrolled in the Moderna clinical trials for the initial COVID vaccines. Now she is in a new clinical trial for a booster that has specifically between "tweaked" for the Delta variant. That makes sense to me... having a booster (like the flu shot) that has been tailored for a specific reason, not just more of the same. Of course if our pal Tom is right, by the time a Delta variant booster is rolled out, Delta will be long gone (hopefully).
  6. Hi Cordelia. Health insurance.... it's like hand to hand combat. I didn't have any issues with the Alectinib getting approval and I also receive copay assistance from the Pharma company as well. Your doctor can contact the insurance company and ask for what's referred to as "an expedited review". Now is a good time to learn more about your insurance, especially if your company has outsourced it's cancer benefit management to a company called EviCore (we refer to it here by another name). Don't be afraid to get the human resources department involved if things are not moving quickly. They are often an untapped resource. The drug will get approved, it always does, just not at the pace we would expect it to so sometimes you need to push/shove the system along. Michelle
  7. Hey Steff, Glad to hear from you! I have missed your posts--- I loved hearing stories about your Mom, particularly the one of her crawling under the porch with an oxygen tank on her back.. AND the concert travels! Yah- the whole new ranking system- you as a Rookie-- that is really funny--- totally agree with Teri, not sure how there was 14 levels-- I also need someone who can put up with my Jersey snarky humor! Nice to have you back! Michelle
  8. Hello from me as well. Unfortunately your father's story is a familiar one to many of us. It was four months of progressively worse coughing with multiple diagnoses before I was finally diagnosed. The cough was unrelenting for me until treatment started. I had one dose of targeted therapy (pills) and it went away immediately. Many of these treatments are very effective so there is hope on the horizon. Your Mom is already doing everything possible, the only other strategy we tried was to stop talking. My husband and I used a memo pad to communicate, that helped along with very hot steamy showers. It does sound like your Dad could benefit from a new prescription, I went through a few before I found one that helped take the edge off that cough. It was a short acting opiate administered every four hours like clockwork. Hang in there, Michelle
  9. Hi Pam, Ditto to everything Lexie said, you've been given some great advice. There's a lot of research going on in KRAS, so a call to the Go2Foundation might be worth your time. There's so many clinical trials it's impossible for the medical oncologists to keep track of. My mother was 78 years old with cancer and she too kept much of her medical treatment to herself. She didn't even let my Dad attend her doctor appointments. I took her lead and she would ask for help on occasion which was really hard for me to adjust to at first. I had her oncologist's cell phone number and could call at any time if I wanted, but my mother alway ran the show and I respected her wishes. I think it's hard for the 70 something parents to let their "kids" assist, at least it was for my family. If you have access to MyChart, the best guidance I can give you is to not Google every word in the scan results. Scans are read by radiologists who are not lung cancer specialists. Often times, the oncologist may disagree or have a different interpretation of the scan results. So you might want to want until the oncologist places their interpretation into the notes for clarification. Michelle
  10. Hi Chuck Very scared about sums it up for all of us when we hear the shocking news, especially if it was an incidental finding since lung cancer usually has no symptoms until late the late stages. In the last three years there has been more new therapies introduced than in the last fifty years. Lung cancer research has come a long way and the survivor club is growing every year. Staying informed helps provide a sense of control. As you are going through the development of a treatment plan, as Bridget says, there will be a lot of tests, biomarker testing should be one of them. If there's something that doesn't work for you at the health system speak up, often times the health delivery system is structured around their process and not your convenience. That can change if you ask.... Also I would recommend staying off the internet. Dr Google is not our friend. The only reliable lung cancer resources are Lungevity and Go2Foundation. Let us know how you are doing and we'll do our best to help. Michelle
  11. Hi Pam, Welcome to the Lungevity Forum, I'm really glad you found us. This is a great place to ask questions and learn from others. Please let us know how we can support you. Michelle
  12. Hi Cordelia, Hello from me as well. Like you I was a 51 year old never smoker at the time of diagnosis, which led to a delayed diagnosis while we ruled out allergies and acid reflux. I also had weight gain in the year prior to my diagnosis which was attributed to menopause, as pneumonia set in, I dropped almost 15lbs in two weeks. I also have a mutation, ALK Positive and started targeted therapy three years ago. Judy has provided you with excellent resources, and you're very fortunate to have a LC support group to attend. Very few cancer centers actually have a LC support group, but that's starting to change now too. I thought about starting a Caring Bridge when I was very diagnosed, but was too ill at the time to set one up. My husband was in a state of shock, not functioning and my family is out of state. Looking back I'm glad I didn't set it up, because after the first few months, there really hasn't been much (thankfully) to update. I'm glad you found this form as it's a great source of support for everyone.... just when you think you might be losing your mind, you might read something and say, a-ha, this is really "normal". Welcome to the group! Michelle
  13. That’s a great find Judy. Thanks for posting!
  14. Hello from me too. I have a 6mm nodule in my left lung that after three years of watching the radiologist finally determined to be a “granuloma”. I wish the service you had for CT screening was available for me same as Judy said….
  15. Live your best life everyday and try to put this out of your mind. I think you know this having been down the road- just because the medical team is recommending a are-evaluation in January doesn’t mean you have to wait that long if you feel something has changed. You’re in the driver seat speak up and out loudly and politely cause the medical system isn’t on auto pilot.
  16. That’s awesome! I hope he lands a great job soon!
  17. See if you can find some Manuka honey with tea which does wonders for post procedure sore throats. The higher the floral count the better. Good luck!
  18. Oh yeah, the shingles vaccine is a beast- I couldn’t get off the couch for a couple of days and my arm hurt. Until the second Covid shot, it was the worst reaction I had. I’m due for the flu shot in early October. My oncologist has always been concerned about the flu, we did try to obtain the high dose version and was not able to based on my age….. yet across town the MD Anderson affiliate was giving higher dose flu vaccines to all of their cancer patients. 🤷🏼‍♀️🤷🏼‍♀️🤷🏼‍♀️
  19. Totally agree with Lexie on this one as well. I also considered suing my PCP for totally missing my lung cancer diagnosis. We spoke to a top firm that literally told us good luck chuck. It’s almost impossible to prove medical malpractice these days. This is something that you must want to proceed with for your own sense of peace and hope not to create an overly stressful situation. As for switching, I’m beginning to see that it’s not a matter of if you change initial providers but when… lung cancer is complicated…. Trust is essential since this is your life on the line.
  20. Hello from me too. So glad you had an opportunity to meet Bridget. She’s been a wonderful source of information and inspiration for our group. You’re in good company here. While no one wants to join this club- ever- we’re glad you found us.
  21. I had my first doctor’s appointment on June 2,2018, there was a long period of misdiagnosis until mid September. It was almost eight weeks before my treatment plan was finalized. The longest part was waiting for the biomarker results took about four weeks. So hopefully these days it’s a bit faster for you. On the brighter side once my treatment started, I felt a whole lot better within a couple of weeks…. Almost back to my “old” self.
  22. I totally agree with you. Around here it’s pretty much the same thing. In fact I’ve heard through the KU rumor mill that that’s there’s a number of physicians who were vaccinated back in December 2020 going to the supermarket and getting their boosters. Unlike the roll out of vaccine there doesn’t appear to be a supply issue.
  23. This is precisely why the CDC guidance is so maddening to me in the first place. It’s not entirely clear on how the booster population is defined. My doctor said he recommended anyone on active treatment over a certain age receive the booster immediately as well. He said chemo is considered active treatment. I was super surprised to find out according the medical community, targeted therapy isn’t considered active treatment but maintenance therapy. 🤷🏼‍♀️🤷🏼‍♀️ None of us wants Covid for sure so that’s why I think it’s up to our treating doctors to make the recommendations in our best interest They don’t want us to get Covid either…
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