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LaurenH

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  1. Like
    LaurenH got a reaction from Tom Galli in I’m so happy I found you all!   
    Hi, Susan,
    Welcome to LCSC! I wanted to share this with you about a runner names James, who is living with lung cancer. We recently shared James' story in a LUNGevity Spotlight post:
    https://lungevity.org/for-patients-caregivers/blogs/voices-from-the-community/survivor-spotlight-james-hiter
    Please let me know if you would like to connect with him and I can put you in touch!
    With gratitude,
    Lauren
    --
    Digital Community Manager
    LUNGevity Foundation
     
  2. Like
    LaurenH got a reaction from Merry Mayo in LCSC Overview   
    The Lung Cancer Support Community (LCSC) is the largest online lung cancer support network with over 11,000 members. LCSC members are people living with lung cancer, caregivers, medical and health professionals, and advocates, who are unified in our common goal to improve survivorship.
    Users can safely share information on LCSC. Member-generated usernames help keep information private and for those who wish, remain anonymous.
    Forum moderators help to maintain the integrity of the site, assisting new members, and participating in discussions to offer peer to peer support.
    Anyone may read the forums, but you must register and be logged in to post.
    Overview of Features
    Forums and Discussion Boards
    There are 27 forums with topics ranging from Survivor Stories to News and Advocacy to Living Well with lung cancer. Each forum has multiple discussion boards where you can post questions and thoughts that you’d like to share with the community. Or you can weigh in on discussions that other members have posted about topics that are relevant and interesting to you.
    If you’ve just joined LCSC, introduce yourself in the Welcome New Members forum. Tell us a bit about yourself and your motivation for joining the community. If you are someone living with cancer, tell us as much as you’re comfortable sharing about your diagnosis and prognosis. Many of the other survivors who are members have been in similar situations. While no two journeys are the same, it can be very helpful to connect with someone who has been on a similar path. And you’ll find that an online support system can be very empowering and uplifting!
    Blogs
    In this section, users can create personal blogs to tell personal stories, share news, and give commentary on current lung cancer topics. If you enjoy a particular blog, you can follow it by clicking the Follow button in the top right corner of the page.
    Photo Galleries
    In this section, users can create personal or shared photo galleries. Let people know a bit more about your life by sharing photos of the people, places, and things that are important to you.
    Chat
    If you need someone to talk to or want to make a new connection, click on the Chat tab on the top menu bar. On the right hand side of the page, you’ll see a list of users who are currently logged in and ready to chat!
    Calendar
    The Calendar section shows which members are celebrating birthdays as well as upcoming lung cancer events. Whether you’re looking for a support, advocacy, or fundraising event, you’ll find all of the important information here.
    We are glad that you’ve joined LCSC and look forward to getting to know you!
  3. Like
    LaurenH got a reaction from Katum31 in Mom newly diagnosed with Stage IV NSCLC   
    Hi, Katum31,
    Welcome to LCSC. My name is Lauren and I'm the Digital Community Manager for LUNGevity Foundation.
    I'm glad to see that you've already connected with a few of our members. This community is a great place to find information and support. Please feel free to explore the message boards and blogs, ask questions, and join the ongoing conversations.
    In addition to these forums, LUNGevity also has a robust Lung Cancer 101 website, free patient educational materials, a Survivor and Caregiver Resource Center, peer-to-peer support programs,  a toll-free Lung Cancer Helpline, survivorship conferences, and lunch and learn events. You can explore more here: https://lungevity.org/for-patients-caregivers
    Please let me know if you'd like any additional information about LUNGevity's Support & Survivorship Programs.
    We are here for you!
    With gratitude,
    Lauren
    --
    Lauren Humphries
    Digital Community Manager
    LUNGevity Foundation
  4. Like
    LaurenH got a reaction from eric byrne in My Introduction   
    Hi, Lou,
    Welcome to LCSC. My name is Lauren and I'm the Digital Community Manager for LUNGevity Foundation.
    I'm glad to see that you've already connected with a few of our members. This community is a great place to find information and support. Please feel free to explore the message boards and blogs, ask questions, and join the ongoing conversations.
    In addition to these forums, LUNGevity also has a robust Lung Cancer 101 website, free patient educational materials, a Survivor and Caregiver Resource Center, peer-to-peer support programs,  a toll-free Lung Cancer Helpline, survivorship conferences, and lunch and learn events. You can explore more here: https://lungevity.org/for-patients-caregivers Please let me know if you'd like any additional information about LUNGevity's Support & Survivorship Programs.
    We are here for you!
    With gratitude,
    Lauren
    --
    Lauren Humphries
    Digital Community Manager
    LUNGevity Foundation
  5. Like
    LaurenH got a reaction from Staceyj in Husband newly diagnosed - looking for support   
    We're glad that you found us too, Stacey!
  6. Thanks
    LaurenH got a reaction from PaulaC in Time for Pet Scan   
    This is great news, Paula! Thanks for the update! We're excited to hear about your upcoming trip as well!
    How is training going for the 5K?
    With gratitude,
    Lauren
    --
    Digital Community Manager
    LUNGevity Foundation
  7. Like
    LaurenH got a reaction from LouT in My Introduction   
    Hi, Lou,
    Welcome to LCSC. My name is Lauren and I'm the Digital Community Manager for LUNGevity Foundation.
    I'm glad to see that you've already connected with a few of our members. This community is a great place to find information and support. Please feel free to explore the message boards and blogs, ask questions, and join the ongoing conversations.
    In addition to these forums, LUNGevity also has a robust Lung Cancer 101 website, free patient educational materials, a Survivor and Caregiver Resource Center, peer-to-peer support programs,  a toll-free Lung Cancer Helpline, survivorship conferences, and lunch and learn events. You can explore more here: https://lungevity.org/for-patients-caregivers Please let me know if you'd like any additional information about LUNGevity's Support & Survivorship Programs.
    We are here for you!
    With gratitude,
    Lauren
    --
    Lauren Humphries
    Digital Community Manager
    LUNGevity Foundation
  8. Like
    LaurenH reacted to Suzanne Gibb in Radiation   
    Thanks so much for your responses. I learned so much. I did not know that the about radiation and small cell so that makes me feel so much better. (Just to have the info) It is in my books but it doesn't really hit home until someone has gone through it. I am doing chemo at the same time for three of the days and am aware that chemo may make me nausea later on  but I am trying to take one day at a time and not go crazy worrying. I am sorry Tom that I do not come to Texas, I am in Ontario but I would just because I feel so much calmer after reading what you say. I have been on this website since February but I must have entered this topic with a new kind of letter. Thanks again both of you. Suzanne
     
  9. Like
    LaurenH reacted to PaulaC in Time for Pet Scan   
    Tom I’m going too!! We have a trip to Alaska in May for my daughters graduation,  going to try a 5k run in May and we’re taking a cruise out of Galveston in August. 🎓🏃🏼‍♀️🛳
  10. Like
    LaurenH reacted to Barb1260 in And the results are in! Now a new symptom?   
    Woke up to my PET results in email this morning, before even speaking to the doc.  Wasn't expecting NED because of the original size but to me they are good-at least I think so.   Tumor original size was 6.9x6.2 cm, now 2.6x3. Original SUV 20, now 5.6.   Lymphn node originally 3.5x2.8cm, now 1.2x1.7.  SUV was 19.6 now 3.9.  
    No other findings except new regions of airspace in lung apex, right upper lobe and right lower lobe-what does this mean?  From the radiation?  So what I get from this is it hasn't spread, it has shrunk and SUV is lower.  Am I reading this right?  So next step is either 2 blasts of chemo and/or Imfinzi. 
    All weekend my neck has been swollen from the port catheter area going around my neck to the back above the collar bone.  The PET said no enlarged lymph nodes there so that is a good thing.  I noticed the swelling Thursday night, the PET was that morning so I am thinking it would have been seen.  Onc's office said to call the surgeon who placed the port.  Went to the surgeon's office, did an ultrasound, no blood clot and port looks perfect.  So why the heck is my neck swollen.  My ear and sinuses feel funny but I've never had swelling that low from that before.  No pain, no tenderness, no fever.  More radiation lingering side effects maybe?  Somebody in my support group said their entire neck swelled after but I'm not so sure.  There is always the good with the bad-can't I just celebrate without worrying about something, geez!  
    All in all, a good day.
  11. Like
    LaurenH reacted to LexieCat in Mom newly diagnosed with Stage IV NSCLC   
    Hi there, and welcome.
    I'm sorry about your mom's diagnosis.  Unfortunately, being "healthy" doesn't prevent a person from developing lung cancer, but it really does provide an advantage when it comes to fighting it.  It's great that she came through the brain surgery so well.  
    We have quite a few members here who have long-term survival after a Stage IV diagnosis, so there's plenty of reason to hope.  Others here will have more input on the chemo/immunotherapy/clinical trials issues--I was one of the lucky Stage I people, so surgery is the only treatment I have personal experience with.  But the others will be along soon.
    Glad you found us--this is a great place for information and support.
  12. Like
    LaurenH reacted to Road bum in No.1 down and Counting   
    Thanks everyone. At this point I am “ in it to win it”. 
    You all have real good Sunday and get some rest.
    Ron
  13. Like
    LaurenH reacted to LexieCat in Growing nodules and enlarged lymph nodes,   
    Yeah, if there's one thing lung cancer does FOR a person, it's teaching patience.  Personally, I'd rather read a self-help book.
     
  14. Like
    LaurenH reacted to Robert Macaulay in This is a cool story   
    Just finished this  book   https://www.amazon.com/Emperor-All-Maladies-Biography-Cancer/dp/1439170916/    Emperor- All- Maladies, If you have cancer  or caregiver. This is one excellent and informative read, For me it was a listen.So well written and also narrated. A eye opener
    Bob
  15. Like
    LaurenH reacted to PaulaC in Radio or chemoradio   
    Good morning Nel, I’m hoping you’re feeling better today. I went through the problems with swallowing and had a real hard time with it. My radiologist thought it was thrush and prescribe meds and a drink that I swollowed right before I would eat. It was still painful so I either wouldn’t eat or ate ice cream, pudding or mashed potatoes. I still lost weight but kept pushing. Oh and one girl I was doing radiation with suggested alkaline ph balanced water. I know it’s tough but try anything to get your calories for energy. I’m praying  you’re strong enough to get your next chemo treatment. 
    Take Care 
    Paula
  16. Like
    LaurenH reacted to Wandalee in Chemo question Stage 4 Squamous   
    Curt and Tom,
    I greatly appreciate your replies and Tom, your post on recurrence is very helpful. It is so meaningful to receive these explanations from you gentlemen in the trenches that I'm certain are knowledgeable.
    Tom, your journey sounds incredible. When I have some time I hope to read more of your story within your posts. Oh, and I just learned that you blog! 
    I learned today that our friend is receiving Keytruda concurrently with her chemo. 
    Again, thank you both heaps!
  17. Like
    LaurenH reacted to Tom Galli in Chemo question Stage 4 Squamous   
    Wandalee,
    Welcome here.
    I'll expand on Curt's explanation.  We don't use the word cure in the lung cancer community.  That is because any form of lung cancer has a high probability of recurring after successful treatment.  I was diagnosed with Stage IIIB non small cell squamous cell lung cancer.  I had a total of 4 recurrences after successful treatments.  That is why we use the term no evidence of disease or NED as our goal for treatment.
    Here is some information on lung cancer recurrence.
    Four to six rounds of chemo may eliminate your friends lung cancer, it may decrease the tumor burden, or it could do nothing at all.  I'm hoping elimination is the outcome.
    Stay the course.
    Tom
  18. Like
    LaurenH reacted to Tomm in Swollen lymph node, should I worry?   
    thanks for all the good wishes ..this forum is a big help to me  and I know to others too
    Rower Michelle...  I did find the article that says CBD was contraindicated with Immunotherapy, it said RR was half with cbd but it did not effect OS of PFS ..  maybe I skip CBD on the week of infusion, still looking into it, thanks for that info. I hope you enjoyed the beach and got a good CT..
    world peas
     
  19. Like
    LaurenH reacted to Steff in Well-meaning suggestions   
    AND you might even get a great meal out of it! lol
  20. Like
    LaurenH reacted to LexieCat in Well-meaning suggestions   
    What a terrific suggestion, Steff!  I love it!  Diversion often is much more effective than opposition.
  21. Like
    LaurenH reacted to LexieCat in Well-meaning suggestions   
    Hi, Michelle, and welcome.
    I'm sorry about your husband's diagnosis.  The good news is that we have several people here on the forums doing VERY well with Keytruda--it really can improve the response.
    My cancer was Stage I, so I had to deal only with surgery.  But I do know what you mean about the "well-meaning suggestions" of family/friends.  I'd suggest you simply smile and assure them of the great confidence you have in your medical team, who are using the very latest/greatest treatment protocol (true!).  And if they continue to bombard you with suggestions, you can tell them that while you appreciate that they care, it isn't helpful for you to have to keep explaining your treatment decisions.  If their feelings are wounded, oh well--they will get over it.  Seriously--you guys need your energy to deal with what's already on your plate and sometimes you do have to be firm to protect your own sanity--this is a tough enough ordeal without having to placate everyone else.  My bet, though, is that most of them will back off.  Remember, this is very new, and a scary shock for them, too.  If you project confidence in your medical team, it should help them accept that your husband is in good hands.
    Hang in there.  Glad you found us--this is a great place for information and support.
  22. Like
    LaurenH reacted to Moonbeam in Finished last round of chemo and rang the 🔔   
    Today was my husband’s last day of chemo.  what a whirlwind it’s been since Nov. 14th but so happy he rang the 🔔. It’s been filled with lots of twists and turns, as I’m sure everyone’s has...the biggest was my last post with our meeting with a PA instead of his dctr and it being a shi_ show, as I like to call it. We are glad treatment is over and obvi, pray that in 3 weeks his CT scan is clear (and all others moving forward) however, it wasn’t easy coming back and seeing the PA again. To say his choice of words last time was poor...”lung cancer always comes back” it’s been hard to feel good about being switched to a PA in the middle of treatment without our consent. Add to that, not responding to important calls - ringing of ears, folliculitis to name a few - is frustrating. It’s too long to write all that transpired last visit but this one, as awesome as it is, has us both not feeling confident in my husband’s care, if that makes sense. His surgeon- fabulous. The nurses in the infusion part - fabulous. His oncologist seems great but has been MIA the last 2 treatments and the oncologists main nurse and the PA - no bueno. Just frustrating and awkward now. 
    Anyhow, back in 3 weeks for CT scan and then every 3 mos afyer thay If all is good. He had a pneumonectomy (stage 2b) NOn small cell poorly differentiated squamous cell carcinoma . 
    Thank you as always for all your help and great advice. He’s in the alchemist trial and waiting to see about immunotherapy drugs as well (also at next visit)
  23. Like
    LaurenH reacted to BridgetO in My Introduction   
    Hi Lou and welome. Curt and LexieCat have given you great info and suggestions, so I'll  just briefly add my own experience. I am 73 and active but not athletic at all.  I had a right lower lobectomy by VATS  in November 2016. I was released from the hosppital the day after surgery with the chest tube in place. I was able to be waliking around the neighborhood  in a couple of days with my tube and bag hidden under a big raincoat.  I was told not to drive until the tube was out and I was off he oxycodone. The tube was in for 10 days and after it was out I got off the oxy quickly. I didn't/don't have any lingering pain. My recovery was pretty fast. I hope your surgery will be as easy.
    Bridget O
  24. Like
    LaurenH got a reaction from Barb1260 in Esophogus problem?   
    Hi, Barb,
    We just wanted to check in and see how you're doing. Please post an update when you can.
    We are here for you!
    Lauren
    --
    Digital Community Manager
    LUNGevity Foundation
  25. Like
    LaurenH reacted to Rower Michelle in I love radiation!   
    Vacation was great!  The return airline trip however kicked my tail.  I’m exhausted today AND I would definitely do it again!   
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