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Showing content with the highest reputation on 10/10/2021 in all areas

  1. LouT

    What is with the tears??

    Hi LRB, Let me get this straight...you think you should just "get over" having a cancer diagnosis, then major surgery and the anxiety that follows it after? Wow, you have put high expectations on yourself and not fair ones either. This is a terrible disease, but when I look across this board I am always full of hope from learning the stories of others and my own blessing of NED. If you read "10 Steps to Surviving Lung Cancer" I believe one of them is about "toughing it out alone". You don't have to do that. You have all of us that you can unload to at anytime on any topic. We've all done it at one time or another. And don't hesitate one minute to get some professional help if you find yourself in a sustained state of anxiety and/or depression. You don't want these symptoms getting in the way of you working on your recovery. There are also Zoom meetings where you can meet many of us and I've heard that the open discussions are quite helpful. Don't suffer through this...try some of what is available (i.e., zoom meetings, professional help, family and/or friends). There is nothing "weak" about being frustrated, depressed and anxious about having lung cancer. Let us know any way we can help. Lou
    3 points
  2. LRB none of the OTC stuff worked for me, even my go-to Pei Pa Koa syrup and Fishermen's Friends were ineffective. Prescription cough syrup with codeine didn't work. The pearls worked. I was so so so tired of coughing I was finally willing to try anything. I had a pulmomologist from the time the nodules were discovered during my colon cancer scanning in 2016, so she was on top of my scans 4 years before the LC dx, and was the one who suggested the biopsy when the 9mm nodule grew to 11mm. She and my oncologist coordinate my continued care. (I was stage 1A) After my second followup visit with the surgeon who did my lobectomy, he pronounced me cured and is no longer involved in my recovery or followup at all. I also experienced random crying. I think partly from the emotional hit of having a second cancer, all the challenges of dealing with it during the height of the pandemic, the frustration and physical stress of the coughing, the financial stress and worry... Also I have a theory that the anesthetic messes with you and takes some time to process out. I also found my emotions affected the more I compared my recovery to others, thinking I wasn't healing and getting "back to normal" fast enough. Once the coughing got better it really helped me stabilize my emotions - although there are times to this day when it gets to me. My dog really helps, looking out at the wildlife and birds in my yard, doing simple routine things that make me feel like I'm making even a little progress, and trying to focus on one thing at a time. There are online meetups with the group here you may find helpful too. 💜
    2 points
  3. LRB, Is crying a lot normal? In my time of active treatment, I didn't know what normal was. This disease and its implications completely unseats normal. Fear and anxiety rise and these emotions often complicate treatment. I recall a time in pre-surgical chemo-radiation when I got very angry and lashed out at my family. I even refused to go for treatment. And I was a soldier, trained to remain level headed in a crisis and battle-tested in doing so. I was undone! In that time, there was no Lungevity Forum, Facebook or social media connection. The Internet was crammed with information about scam cancer cures. Friends were calling advocating purchasing high-powered magnets, taking mega doses of vitamin C, and even re-thinking surgery because tumor exposure to Oxygen during surgery would cause massive metastatic spread throughout the body. Even in-person cancer support groups were hostile. One woman told me: "you don't belong here. You gave this to yourself!" Her scolding demeanor made me feel like a little boy who'd done something very wrong. Is crying normal? I think it is expected--perhaps required! Don't do what I did. Don't bottle feelings and anxiety up and put on a happy face. Lung cancer treatment is a team sport. We are one element of your support team; find others. If you are going to do this thing, don't do it alone. Is crying normal? Absolutely! Stay the course. Tom
    2 points
  4. Hi joana, First, let me reassure you that talking about your financial issues isn't a violation of our guidelines. You'll find that it's a common issue since cancer isn't a cheap illness to have. One thing that's really helped me in dealing with cancer is talking about it -- both to myself and to others-- as "dealing with" rather than "fighting". For me, violent language of fighting and battle isn't really comfortable. I don't like reading obituaries that say things like "she lost her battle with cancer, which to me implies that she could have lived forever, if only she had fought harder. And fighting takes a lot of energy that I'd rather spend living. For a lot of people, the "fighting" language comes naturally and helps them keep going and keep up hope and I have no quarrel with them at all. I'm probably doing most of of the same things the fighters are doing in making treatment decisions, living their life day by day in the best possible way and so forth. I say if something works, don't fix it! I just have an alternate way of talking about it. I've also approached cancer with curiousity. So, for example, I've had 3 primary cancers and 3 surgeries, plus radiation and chemo. Prior to my first cancer,I hadn't been in the hospital since I was a small child. I felt like I was in a foreign country-- they do things differently there! So I was interested in how they do things and at times that helped me feel less fearful. Enough of my philosophizing! Hang in there and you'll get through this. I love that you are working to use for yourself what you have told others-- all good advice!
    2 points
  5. LRB, Walking a mile/day is a very good start. Yes, the pulmonologist will be helpful as he will focus on your breathing and lung capability. The humidifier is also a good thing to get. It will help you to clear more effectively and likely reduce some of the irritation. Please keep us posted as you progress and remember to come back and ask any questions you may have. Lou
    1 point
  6. LadyRoseBlade

    Joana

    I’m 5 weeks post op left upper lobectomy abs I was were you were 2 months ago. I even woke my husband up at 3 am and told him I couldn’t do the surgery. I’m still wondering how I got this as I have never smoked. It turned out stage 1 with no nodes or margins positive. All negative. I’m learning to take it one day at a time. And I feel stronger every day. I just joined this good. You’ll be glad you did. take care LRB
    1 point
  7. alascerca

    Joana

    Thank you, Susan and Lou T. Your words are uplifting to me, and I will look at the associated links you've provided, Lou. Appreciating it all enormously. Sadly, I cannot work a regular job, as I am disabled from previous cancers and their treatments. Fie! I have out on my thinking cap, though. I am not defeated yet and plan to be a very active and engaged participant in my own treatment and hoped-for healing! ❤️ Cheers, joana
    1 point
  8. Justin1970

    Justin

    Hi thanks for the reply, the radical treatment does sound a bit daunting how was your mum through it, I'm glad she is NED that's brilliant you must all be so relieved, i think being told you will be treated with curative intent really does help with the anxiety and overall mental stress,take care. Many thanks Justin xx
    1 point
  9. Thanks Lou. Yes I’ve been active. I walk about a mile a day and have taken on easy household chores that don’t involve lifting. We’ll get a warm humidifier for our room. I don’t have a pulmonologist. The surgeon has been in touch frequently as well as her NP’s. thank you for the kind welcome. LRB
    1 point
  10. I'm not sure how effective Nexium and Tums are for GERD. I was given a prescription for Protonix when I had acid reflux from chest radiation. I also eliminated dairy from my diet during that time. I believe others will recommend an air purifier in his room and also steam therapy, both of which are good ideas. I would also suggest checking outdoor air quality every day. I use the AirNow app. When air quality is unhealthy for sensitive groups, I can get shortness of breath that lasts an entire day. Also, have you considered seeing an ENT in case your husband has allergies/post-nasal drip? I had a dry cough that started last year, and it would wake me up at night. My pulmonologist diagnosed allergies, and Claritin really helps. Finally, you might want to consult with an integrative medicine physician and/or palliative care doctor since the cough is affecting quality of life for both of you. My integrative medicine physician (also an acupuncturist) works directly with my oncologist. I really liked acupuncture and found it very relaxing. Hope both of you get some relief!
    1 point
  11. Here is a list of commonly used acronyms that are found throughout this site. I am SURE I missed a lot so I hope that as others come across more they will add them to this tread. Warmly Christine lc, lung cancer sclc, small cell lung cancer nsclc, non small cell lung cancer SOB, shortness of breath NED, no evidence of disease Dx or dx diagnosis Tx or tx treatment B-I-L, M-I-L, F-I-L, S-I-L, Brother, mother, father, or sister in-law SO significant other DH dear hubby ONC, oncologist PCP primary care physician METS, metastasis VATS, video assisted thoracoscopic surgery WBR, whole brain radiation SUV, "standardized uptake value," which is based on the amount of metabolic activity resulting from the pre-scan injection of irradiated sugar
    1 point
  12. smashley

    Hello there

    Wow, lots of great info there to process. I am fortunate(?) that I haven’t taken vacation in a long time, so I have close to 480 hours banked. Our short-term disability is handled by Sedgwick and I’ve heard… really bad things, so while I will try to initiate the process I think I might just hang my hat on the hours I have banked. I was completely mixing up CU Medicine with UC Health, so I’m glad I got that straightened out (thanks to Googling Dr. Camidge) and it does look like they accept my insurance “for CU Medicine Specialists Only” which I would assume this is, but will confirm. I think you’ve convinced me to bring my parents in on this. They’ve been through a lot this past year and I really didn’t want to stress them out any more (and will probably wait until AFTER my brother’s wedding next week), but my mom’s been through the wringer with breast cancer twice, so she probably knows a lot about navigating the health care and insurance system. Plus she is a way stronger advocate than I am… (I once negotiated myself into a lower salary at my first job during college) Also, can I just ask how have I lived this long without knowing about a wedge pillow?! They look amazing and I’m getting one now, with or without surgery. Thank you for everything!
    1 point
  13. 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
    1 point
  14. Hi Pam, I'm so glad you posted so we can share resources that might be able to help you and your mom. First, here is the link to LUNGevity's Clincial Trial resources that Lexi refrenced. https://www.lungevity.org/for-patients-caregivers/navigating-your-diagnosis/treatment-options/clinical-trials If you use Facebook, there is a KRAS specific group that is filled with helpful information: https://www.facebook.com/groups/KRASlung There is also a Caregiver group on Facebook: https://www.facebook.com/groups/LungCancerCaregivers In addition, LUNGevity hosts a monthly Caregiver Virtual Meetup that is happening tomorrow. It is a great way to ask all kinds of questions and get support from others whose life is affected because a loved one has lung cancer. https://www.lungevity.org/for-patients-caregivers/support-services/virtual-meetups
    1 point
  15. Hi Pam from another Minnesotan! I live in Maple Grove and happen to be doing a clinical trial through the University of Minnesota. I was seeing an oncologist with Park Nicollet and the Mayo in Rochester and had my Dr with Park Nicollet refer me to the U. They matched me with a clinical trial and here we are. I had a scan 2 weeks ago and it shows some slight improvement. Does your Mother receive care at the U? I really like the staff and my Doctor there. Let me know if I can answer any questions . Babs
    1 point
  16. Oh, I didn't realize she'd already had the brain mets treated. She should be in good shape as far as that goes, then. They will still likely order a brain MRI before any trial begins. I never went through so much testing in my life as I did for my trial!!
    1 point
  17. Thank you for posting this. being new here some things were really confusing.
    1 point
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