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Rower Michelle

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Rower Michelle last won the day on October 23

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About Rower Michelle

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    Overland Park
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    Lung cancer patient/survivor
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    I am a rower! ALK Positive Research

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  1. Good luck to you. One of the resources you might want to check out is a book by Rebecca Katz called “The Cancer Fighting Kitchen”’. It’s loaded with good recipes and tips for managing nutrition during chemo. I found it better than any of the hospital hand outs. Keep us posted.
  2. Thanks Lou- I will definitely send a note to my PCP. The onc is well aware of my last reaction to the Pfizer shot, his focus is really on the cancer and anything else to him is kinda a shoulder shrug but maybe the PCP has a different take on it. I did have a full allergy panel so that is a rule out too. I’m still slugging my way through and definitely feeling better today.
  3. Hi there, I don’t think of lung cancer as a terminal condition because there are so many treatment options available to us today. For the better part of three years, the majority of my labs look better than “healthy” people. Taking care of yourself with rest, hydration and nutrition helps to go a long way for tolerating the treatment. Michelle
  4. Hey Gang, Quick update, I had a routine physical last Friday where I planned to also receive my flu shot. I was quite surprised to learn KUMed actually had the Covid booster as well so I thought may as well bite the bullet and hope for the best. Fourteen hours later the freight train came. For the next three days I ran fevers and had all other sorts of misery. The most concerning was when my O2 levels dropped to 91. It was an amplified response from round two. I had to cancel my mammogram which frankly didn’t bother me, not on the top of the fun list anyway. It’s been a week now and I’m still a little draggy but definitely getting back into things. I really do hope that there isn’t another recommendation for continued boosters in another six months. It’s going to be a glorious fall day here and I’m going into KC for my first message in almost two years. Carry on. Michelle
  5. Great advice as even here in the US the health system isn’t as efficient as it should be. A good strategy is to eliminate the word “wait”. If something doesn’t look or feel right, rather than waiting for a situation that may or may not sort itself out, it’s better to be proactive and start asking questions.
  6. Depending on the location of the nodules, it’s pretty common there isn’t enough tissue collected for biomarker testing. There’s two types of tissue biopsies. Needle and core. Needle biopsies are most common and least invasive but there is a risk of inadequate sampling. This happened to my mother during a lung biopsy. The area of concern was so small the oncologist took a watch and wait approach. The second biopsy also failed to obtain a tissue sample and it was the third biopsy 18 months later that we finally had an answer. It’s a good news/bad news situation with slow growing adenocarcinomas. A liquid biopsy can be an alternative so you can ask about that. My mother had those as well yet it was a similar problem, there wasn’t enough circulating tumor DNA to yield a result. Eventually we did discover her endometrial cancer did have a mutation so she was able to start targeted therapy. As frustrating as this is sometimes the process is watch, wait and reevaluate under the close supervision of an oncologist.
  7. Bingo, Lou is spot on, in situations where the risk of a potential lung collapse, a liquid biopsy can be very valuable. You may have to seek another opinion at a major cancer center in your area, look for a NCI or CCC designated health system.
  8. Hi from me too. I have a different mutation and have been taking targeted therapy for 36 months now, NED. I do remember the first scan and the anxiety about it. I was pretty confident the therapy was working because I felt so much better, I was sleeping through the night and those horrible coughing spasms had finally stopped. This is the first of many scans to come and unfortunately that uneasy feeling never really goes away, however the duration of those feelings does tend to shorten over time. Back in 2018 about a month before my scan the scanxiety would set in. Now, it's really only in the days preceding the appointment. Once you get the results, keep in mind you will receive them often before your doctor does in the patient portal. Try to avoid the temptation of Dr Google and let your doctor tell you what their thoughts are. Often times the oncologist doesn't agree with the radiologist. It happens more often than you think. Please keep us posted. Michelle
  9. Minh, There’s always an opportunity to obtain an second opinion. I’m not sure where you’re being treated but if it’s not a a major academic center with a NCI or CCC designation, it’s well worth your time to get another opinion.
  10. Hi Rikke. Here’s a couple of ideas- you might want to check out Facebook, I do believe they have a closed lung cancer support page. You may also want to connect with the Lungevity help line to see if you can be matched to a phone buddy. @LUNGevityKristin do you have any of the specific links from FB? Hang tight, help and information is on the way. Michelle
  11. 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
  12. 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
  13. 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
  14. 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?!!
  15. 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).
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