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KatieB last won the day on May 15

KatieB had the most liked content!

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About KatieB

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    VP Support & Survivorship Programs, LUNGevity
  • Birthday May 25

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  1. "A market research company has asked LUNGevity to share a paid survey opportunity for patients within the US with Stage IV lung cancer. Those who qualify and complete the 35-minute survey between June 21st – July 12th will receive $60, paid via check. To take the survey, click www.alphadetail.com/lcpatientstudy Please note: if you do not complete this survey in one sitting a unique link will be sent to you within 24-48 hours to continue where you left off within the survey. This will only come if you fill in your address information and I have the email to send you the link. The email will come from Elizabeth Lawson (ELawson@us.imshealth.com). You will not receive payment for completing the survey more than once."
  2. I noticed something recently at the in-person support group I facilitate. Caregivers in my group didn't speak up about issues or feelings unless the facilitator or group leader mentioned them first. "Like Jan said, I have feelings of ____ too." After the third time, it occured to me that caregivers are either waiting to have their feelings validated by someone else or didn't realize they had been feeling those feelings. I remember being a caregiver for my father and how all-encompassing that was. Nothing else mattered to me at the time. Everything was about my dad's cancer, his feelings, his happiness, his peace and comfort. I don't think I got more than 2-3 hours of sleep a night during those 11 months- there was just so much to do! I completely lost myself and any sense of "me" during my caregiving. I would never consider taking time for myself, taking a break or openly expressing my frustrations and concerns- that would be selfish- afterall, I wasn't the one in treatment with cancer. I wasn't the one fighting for my life, right? If given the opportunity then, would I have taken advantage of caregiver resources or support groups? Would I even know what I was feeling or how to describe it? Until we are able to have caregiver-only support groups in every community, how can we give caregivers the encouragement or "permission" to put a voice to what they are feeling? How do we as caregivers divorce ourselves from the guilt that accompanies self-care? Thoughts?
  3. Hi

    HI Julie, I am sorry you lost your dad to lung cancer. I lost my dad to small cell lung cancer many years ago and I still miss him everyday. If you are looking for someone to talk to- we are here for you. We also have a LifeLine Support program that matches patients to survivors and caregivers to other caregivers. If you'd like us to match you with another caregiver for support, please let us know. You can request support here at www.lungevity.org/lifeline
  4. Hi there! I'm sorry about your mom and hope for the best scenario. I believe that hematology/oncology will be where chemotherapy will be administered and blood tests/levels monitored- the general oncologist is located in this dept and will be her primary "quarterback" physician so to speak. Behavioral medicine may be where pain management and psycho-social services are offered- but this is different at different facilities. Definitely seek out oncology social workers and patient navigators if they are available- nutritional services, pulmonary rehabilitation and pain management if she has any pain or breathing difficulties. If you are looking for questions to ask at appointments- I really recommend this section of our website https://www.lungevity.org/for-patients-caregivers/asking-right-questions please keep posting and keep us updated on your mom. We are here for you! Best hopes, KatieB
  5. HI Tim, I am not a radiologist or oncologist, but it's my opinion that the CT scan is very encouraging positive news! There is response to treatment and decrease of the mass-which is good! I would keep an eye on your dad for any developments of pleural effusion- which a small volume of right fluid seems to be indicated and that could go away on it's own- possible infection in the small bowel- again I'd ask about that too at the next appointment or if there is any pain. How is your dad feeling? How are his blood counts? There are treatments that can help with his counts as well as blood transfusion- which can really make all the difference in how a person feels. Please keep us posted on your dad- and you! Best hopes, Katie
  6. Reposting: This is NOT a LUNGevity opportunity Schlesinger Associates has a market research opportunity that might be a great fit for you regarding Small Cell Lung Cancer. Research Details: · Telephone/Web interviews taking place June 12th-16th · Looking for Individuals who have stage 3 or 4 Small Cell Lung Cancer, who were diagnosed more than 3 months ago to share their experiences living with their diagnosis · Patients must have received 1 other drug treatment beyond surgery and/or radiation · Patients must have interacted with a physician about their Small Cell Lung Cancer in the past 6 months · Each participant will be compensated $150 for their 60 minute telephone/web interview Anybody who is interested can email Patient.Research@schlesingerassociates.com to see if they are a good fit for the interviews!
  7. HI Nichole, I'm so sorry you have a reason to be here. This is am amazing group of people. Keep posting. Let us be here for you! Best hopes, Katie
  8. Hi Jan, I'm glad you all figured that one out- that's a step in the right direction. With medications (and treatments), there are so many factors that can lead to confusion and behavior like you described- medication interactions, allergic reaction to medication and even dehydration- low sodium and potassium in the body can cause severe confusion and organs to begin to shut down. It's important that whomever is in charge of her care is thorough with her medication and fluid intake because it is so easy to run into problems. Hopefully the oncologist will have a good plan for her. I know how frustrating it can be being so far away from your loved one. Keep us posted. We are here for you. Best hopes, KatieB
  9. HI Sandra, Please call our helpline during business hours and they can inform and refer you to lung cancer financial resources that may be of help to you! Lung Cancer HELPLine 844-360-5864
  10. Carl, please keep us posted. We are here for you. Best hopes, KatieB
  11. HI Myra, this article may help. http://www.dana-farber.org/Newsroom/News-Releases/liquid-biopsy-blood-test-accurately-detects-key-genetic-mutation-in-most-common-form-of-ung-cancer-study-finds.aspx About 80% accurate at some markers- but still very new and sometimes not covered by insurance. Worth asking your doctor about.
  12. HI Malley, For information on how lung cancer is staged you can click here- https://www.lungevity.org/for-patients-caregivers/lung-cancer-101/lung-cancer-staging
  13. HI, I'm sorry there weren't a lot of responses to your first post. I will encourage others to post a reply- you can also use the search feature and search Tarceva to read other posts from other patients about it. Keep posting. We are here for you KatieB
  14. sending best thoughts your way for a clear MRI and successful surgery. Please keep us posted. We are here for you Best hopes, KatieB
  15. I would also check with our friends at Savor Health who specialize in oncology nutrition. http://savorhealth.com/