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Rower Michelle

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Rower Michelle last won the day on February 2

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About Rower Michelle

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    OVER 1500 POSTS !

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  • City
    Overland Park
  • US State (if applicable)
    KANSAS
  • Country
    Unite
  • Gender
    Female
  • Status
    Lung cancer patient/survivor
  • Interests
    I am a rower! ALK Positive Research

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  1. Well that is really great news! The targeted therapy for ROS1 is very effective, there are survivors who have been in treatment for years now. You may want to check out the ROS1ders on Facebook where there will be a lot of great information to help you prepare for the appointment at Sloan.
  2. Now that is a great question. My targeted therapy for AlK causes edema & it took months to find the right dose & frequency. Lasix isn’t one size fits all & requires adjustments based on how much sodium is consumed the previous day. Lasix can treat edema but for me it was a trial & error approach. My dose was up to 40mg & we settled on 20mg four times a week. Basically my edema “test” is how well do my rings fit. If I can’t get them on or they are tight, then I take a lasix. In addition to Lasix if you can tolerate it, compression socks might help.
  3. Hi Jack- I also forgot a few other constipation tips- plenty of water (at least 64 Oz) & morning coffee- all helps. As for the B6 & B12, I take a prescribed Folic Acid supplement & B-50 in addition to the Salmon & veggies you mentioned. Essentially I’ve been following the Weill Anti Inflammatory Diet for a couple of years now. You will need to have your PCP draw a baseline B vitamin panel & an iron absorption panel to determine what your levels are before taking any B supplements. The downside to B vitamins is that if you have too much it can cause ne
  4. Hey Jack- Personally I’m not a fan of these drinks anymore. When I was rowing I was a frequent user of protein shakes from Costco. Today I won’t eat any processed foods, particularly anything with more than five ingredients. Constipation is something I always have to battle too. I’ve resorted to making easy smoothies in the Magic Bullet- pumpkin, pear, walnut with cinnamon & nutmeg, blueberries, avocado & spinach with cinnamon or baked sweet potatoes works really well. I try to eat an apple a day with some almonds. It’s the perfect blend of a sugar, fat & fiber- great
  5. I’m so sorry. Cancer is evil & takes too many. Prayers for you to be comforted during this time.
  6. Good Morning, The second opinion may take more than one appointment depending on the results of the biomarker tests. It is really the keystone for determining the most effective treatment plan. In a sense, you already may have one biomarker per se-with PDL being 100% it's the perfect target for immunotherapy post chemo/radiation. PDL is part of the immune system, however and this is where it gets tricky, it is possible to have 100% PDL and have another biomarker such as ALK or EGFR. If another biomarker is discovered in the results (also called the panel), then immunotherapy isn't e
  7. Schmutz is the medical equivalent of ground glass opacity, a diffuse pattern that often obscures a tumor. I had a 3cm tumor that was not visible on the x-Ray or CT scan. This schmutz looks like snow or cotton on the scan. Another diagnostic procedure before the treatment plan can be finalized is also the brain MRI. The MRI usually happens the same week as the PET scan. Good luck with the second opinion, we’re here for you.
  8. Hello K- I am very sorry you find yourself here as well. I grew up across the river in Jersey. Like you I was 51 at the time of my diagnosis, a competitive rower. For months a increasingly worsening cough was misdiagnosed because no one suspected lung cancer. I was Stage IV with biomarker testing discovering the ALK mutation. About 90% of mutations are diagnosed at Stage IV. Unfortunately there is little consensus on how to treat Stage IIIb, it’s rare. The team is correct in holding immunotherapy until the biomarker panel is complete. If there is a mutation, t
  9. Hello and Welcome. Unfortunately your post is all too familiar, no one wants to join this club. Everyone is reeling when the words lung cancer are spoken. You’ve done some homework which is good. The “survival” statistics from Dr Google are way off. These days lung cancer isn’t necessarily a terminal diagnosis. Smoking is a risk factor for lung cancer not a cause. Anyone with lungs can get lung cancer. Most often it is diagnosed in late stages as there are no symptoms. It’s hard to wade through all the emotion while quickly coming up to speed with what seems to be
  10. Hi Marcia, I take a different inhibitor that also has the edema side effect. I actually developed pulmonary edema and it felt like there was a gold fish swimming around in my chest, my shoes didn’t fit, and I couldn’t get my wedding rings on. My doctor prescribed a low dose of Lasix with Potassium. In addition I sometimes wear compression socks. Most importantly is body movement. Walking is about the best way to manage edema. Start slowly and work yourself up to a manageable distance. Shoes can still be a challenge for me so I invested in four pairs of Crocs &am
  11. For the first couple of months, many of us think, is it ever going to get better? Sometimes just getting through the day seems like a ginormous effort both physically and mentally. There will be a light at the end of this tunnel. You will get there. Believe in yourself and your team. Try to remember you are not complaining but communicating with your team. The more they understand what you’re dealing with (no matter how insignificant it may seem) the better they can address your symptoms. Rest and fluids will go a long way. So far you’re doing great...
  12. Wow. This is super interesting. Years ago there was one of those alternative medicine doctors who was saying something along the same lines, the FDA suspended her medical license & placed her name on the quack watch. This looks very promising! Thanks for sending along!
  13. Hi Mike, Welcome to the Durva Club. While I'm sorry you find yourself here, this is a good place to learn from a number of others who have crossed the Durva finish line. I'm very familiar with Jane's program. Here is the US, it's considered fairly controversial. She's a big supporter of Metformin, and I've had physicians over here in the US take a deep dive into the research. It's all inconclusive. Supplements with lung cancer treatment can become very tricky. One of my peers took a DIY approach and ended up unintentionally impacting the effectiveness of his treatment pla
  14. Deb, That is absolutely wonderful news! I'm so thrilled.
  15. 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.
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