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CindyA

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Posts posted by CindyA

    Daddy just diagnosed with lung cancer, which has matastasized to his liver and bones

    in INTRODUCE YOURSELF!

    Posted

    Hi Eaw820, 

    I understand that you feel overwhelmed. You are doing the right thing by reaching out and trying to find answers for him.

    Please keep us posted on what the Oncologist reports. Is there a Nurse Navigator or a Social Worker who you can connect with? Sometimes they have information on resources closest to you. They can also help you understand what is going on better and help you and your dad understand treatment options. 

     

    I know you mentioned that he is out of work and doesn't have insurance, so I am including a link below that lists some resources that may help. LUNGevity's website has a wealth of information, however I think this specific link will be a good start http://www.lungevity.org/support-survivorship/survivor-resource-center/practical-resources-for-survivors

    Dad initial diagnosis poor

    in INTRODUCE YOURSELF!

    Posted

    Christine, 

    It upsets me too when doctors just blurt out things like that. I personally have a good friend who is living well with stage 4 lung cancer, for well over 6 years now. I'm hoping his PET scan has good results. Please keep posting and letting us know what you find out, we will help as best as we can. 

     

    Cindy

    new Stage 3b nsclc dx start tx next week

    in INTRODUCE YOURSELF!

    Posted

    Hi Big Mike! 

    Welcome to the LCSC message boards. This is a great group where you can get advice and just vent really if you need to. There is a good chance that someone else here has experienced either the same thing or is going through something similar. If you have any questions about the message boards or any of the support programs that LUNGevity offers, please feel free to contact me. 

    http://www.lungevity.org/support-survivorship/survivor-resource-center

     

    I look forward to getting to know you.

    Cindy

    Texas - DFW Friends, will you be at the Breathe Deep DFW Walk?

    in LC SURVIVORS

    Posted

    Hi Barb! It's about 15 minutes from my house too! I live in the mid-cities area.  I know the whole DFW debate is still ongoing North Texas wide. I remember when I lived in Fort Worth the mayor would always say he was going to change the way people view the city and he wanted to change it to FWD. Sorry you won't be able to attend. You will be missed! We will be having a Dallas HOPE Summit in the winter, so stay tuned for that. I'll be posting more about that as it gets closer. I look forward to meeting you!
     

    Cindy

    Newly diagnosed

    in INTRODUCE YOURSELF!

    Posted

    Hi elizac1954, 

    I responded to you on a different post. I will duplicate it here just in case you see this one first.

    ___________________________________________________________________________

     

    I'm glad to hear your port is healing okay. Have you talked to your doctor about what you are feeling during the infusions? I know some people who travel with a notebook religiously so when symptoms or questions come to mind you can jot them down and then write your doctors answers on them.

     

    I know sometimes some people talk with a nurse navigator. Is there one on your medical team that you can talk with to help you understand your treatment plan? Also, can someone go with you to your appointments who can take notes for you?

     

    If you would like to speak to someone one on one who has been in a similar situation please let me know. We have the LifeLine program (free) which connects you with an actual person who can mentor you and let you know what helped them. Here is the link if you want to get started.http://www.LUNGevity.org/lifeline I can let my colleague know that you will be reaching out if you want, just let me know.

     

    We care about you!

    Cindy

     

     

    http://forums.lungevity.org/index.php?/topic/43267-newly-diagnosed-with-questions/#entry407069

    Newly diagnosed with questions

    in INTRODUCE YOURSELF!

    Posted

    Hi elizac1954, 

     

    I'm glad to hear your port is healing okay. Have you talked to your doctor about what you are feeling during the infusions? I know some people who travel with a notebook religiously so when symptoms or questions come to mind you can jot them down and then write your doctors answers on them.

     

    I know sometimes some people talk with a nurse navigator. Is there one on your medical team that you can talk with to help you understand your treatment plan? Also, can someone go with you to your appointments who can take notes for you?

     

    If you would like to speak to someone one on one who has been in a similar situation please let me know. We have the LifeLine program (free) which connects you with an actual person who can mentor you and let you know what helped them. Here is the link if you want to get started. http://www.LUNGevity.org/lifeline I can let my colleague know that you will be reaching out if you want, just let me know.

     

    We care about you!

    Cindy

    Stage IV Squamous NSCLC-Mets To Liver-Treatment Questions

    in NSCLC GROUP

    Posted

    Roxanne,

     

    I'm sad to read that you are having a hard time right now.

     

    You don't have to be PC here. This is YOUR safe place to vent, ask questions, and bounce ideas off of us. 

     

    There is HOPE! Would you like for us to try to connect you with another survivor who has been in a similar situation like yourself? We have a lot of mentors who are willing to give you a call and talk to you about their experience & how they are getting through it.  http://www.LUNGevity.org/lifeline  Is the link to get started. I can give my colleague a heads up that you will be filling out this form. Just give me the green light. 

     

    ***Takes the axe, and puts it back on the shelf.***

    Hi- New to group

    in INTRODUCE YOURSELF!

    Posted

    Hi Teresac,

     

    I'm sorry you have to be in this group but glad that you chose us.

     

    I can't add much to what Tom posted above. A family gathering is a wonderful idea as Tom suggested. You could even ask friends and family to put their funniest or most memorable memory on a piece of paper as a gift for her, and you could place it in a wooden treasure chest that she can access easily and you all can reach into it when she seems sad. 

     

    End of life planning is not something that anyone really likes to talk about. We have a list on our resources page that may help you http://www.lungevity.org/support-survivorship/caregiver-resource-center/end-of-life-planning/preparing-when-death-is-near

     

    Please keep posting and letting us know how you are your mother are doing.

     

    Cindy 

    stage 3b non small cell

    in INTRODUCE YOURSELF!

    Posted

    Hi Jtaylor, 

     

    My colleague tells me that you have connected with her. I hope you will find a support partner soon. Until then please feel free to post on the message boards if you want to vent or if you have any questions. I look forward to getting to know you. 

     

    Best,

    Cindy

    Lung biospy results

    in INTRODUCE YOURSELF!

    Posted

    Hi alwayssunny,

     

    Welcome to the Lung Cancer Support Community Boards!

     

    I agree with Tom. Something does not add up. 

     

    I always tell my friends and family what I'm about to tell you...if you feel that something isn't right, please speak up right away and if you have to, walk out. Please let us know what you decide. 

     

    http://ow.ly/T5P7H This link is an article that helped me to be a better advocate for myself. I hope you will read it before you make a decision. 

     

    Thinking of you!

    A Message from Beth Stern - VP, Volunteer and Community Engagement

    in ADVOCACY

    Posted

    "We're Number One! Won't you help us change that?

     

    Lung cancer is the Number One cancer killer. Twice as many women every year as breast cancer. Three times as many men as prostate. Yet when's the last time you heard about lung cancer? Help us break the silence and raise critical funds for research and support!

     

    We are LUNGevity Foundation, the largest private funder of lung cancer research and support in the United States. We were started by seven lung cancer patients with the goal of helping people live long, healthy lives following a lung cancer diagnosis. And it’s working! We’re making real progress because of the support of people like you.

     

    There are so many ways for you to join our national movement, from super-easy and fast to longer term projects. You can do everything from making a donation online to bringing information to your local hospitals to recruiting local businesses to do a charity night to creating your own event in your community to raise awareness and funding for lung cancer. We can tailor an opportunity for your time, energy, and resources… it’s easy! And we’ve got lots of tools to help you succeed.

     

    The first step is to e-mail Beth Ida Stern, our VP of Volunteer and Community Engagement, at bstern@lungevity.org. Beth will help you identify how we can partner to increase the survivorship of lung cancer. It's simple, easy, and painless... we promise!

     

    Whether you've been directly affected by lung cancer, or just want to make a difference in our fight against the Number One cancer killer, joining the LUNGevity family is a great way to contribute, heal, soothe, and connect. Whether you’re an individual or a group, an adult or a kid, live in a big city or a rural area, we have an opportunity that’s perfect for you.

     

    We’re Number One… and with your help, we’re changing that reality. Join our national movement today for all of our families and for everyone who’s been affected by lung cancer.

     

    Join our family today! We make it easy... you make it real."

     

    ...........................................................................
    Beth Ida Stern
    VP, Volunteer and Community Engagement
    o: 323.380.5394

    GREAT NEWS ! New immunotherapy approved for use in all types of non-small cell lung cancer patients

    in LUNG CANCER IN THE NEWS

    Posted

    http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm465444.htm

     

    ad PD-L1 positive tumors based on the results of the 22C3 pharmDx diagnostic test. Study participants received 10 mg/kg of Keytruda every two or three weeks. The major outcome measure was overall response rate (percentage of patients who experienced complete and partial shrinkage of their tumors). Tumors shrank in 41 percent of patients treated with Keytruda and the effect lasted between 2.1 and 9.1 months.                                                                                                         

    In the 550 study participants with advanced NSCLC, severe immune-mediated side effects occurred involving the lungs, colon and hormone-producing glands. Other uncommon immune-mediated side effects were rash and inflammation of blood vessels (vasculitis). Women who are pregnant or breastfeeding should not take Keytruda because it may cause harm to a developing fetus or newborn baby. Across clinical studies, a disorder in which the body's immune system attacks part of the peripheral nervous system (Guillain-Barre Syndrome) also occurred.

    The FDA granted Keytruda breakthrough therapy designation for this indication because Merck demonstrated through preliminary clinical evidence that the drug may offer a substantial improvement over available therapies. The drug also received priority review status, which is granted to drugs that, at the time the application was submitted, have the potential to be a significant improvement in safety or effectiveness in the treatment of a serious condition.

    Keytruda was approved under the agency’s accelerated approval program, which allows the approval of a drug to treat a serious or life-threatening disease based on clinical data showing the drug has an effect on a surrogate endpoint reasonably likely to predict clinical benefit to patients. This program provides earlier patient access to promising new drugs while the company conducts confirmatory clinical trials. An improvement in survival or disease-related symptoms in patients being treated with Keytruda has not yet been established.

    Keytruda is marketed by Merck & Co., based in Whitehouse Station, New Jersey and the PD-L1 IHC 22C3 pharmDx diagnostic test is marketed by Dako North America Inc. in Carpinteria, California.

    The FDA, an agency within the U.S. Department of Health and Human Services, promotes and protects the public health by, among other things, assuring the safety, effectiveness, and security of human and veterinary drugs, vaccines and other biological products for human use, and medical devices. The agency also is responsible for the safety and security of our nation’s food supply, cosmetics, dietary supplements, products that give off electronic radiation, and for regulating tobacco products.

    Knock knock...

    in JUST FOR FUN

    Posted

    Who's there? YOU ARE! Now let's see how many people we can get to play a game:

     

    Post 2 truths and 1 lie, we will all have to guess which is a lie!

     

    I'll go first.

     

    1. I have a purple belt in karate

    2. I love tomatoes

    3. I love pickle juice snow cones

     

    Which do you think is a lie?

    Just starting the process

    in INTRODUCE YOURSELF!

    Posted

    Hi Barb! Here is more information about the LifeLine Program I was telling you about. 

    The LUNGevity LifeLine Support Program matches a lung cancer patient or caregiver with a LifeLine Support Partner.

    LifeLine Support Partners are lung cancer survivors or co-survivors (family members and caregivers) who have walked the lung cancer path. They volunteer to mentor and offer encouragement, advice, experience, and hope to those newly diagnosed and anyone needing additional support through a one-on-one personal connection by email or telephone.

    Volunteering for LifeLine is important. It’s a way to give back. It’s finding purpose in what we’ve been through.

    - Matt Ellefson, stage IV ALK

     

    LifeLine Partners can be a vital part of a newly diagnosed patient's support system and can help navigate through the logistics and emotions of a lung cancer diagnosis. LifeLine matches are made by gender, age group, and similar diagnosis whenever possible.

    If you have been affected by lung cancer and would like to be matched with a LUNGevity LifeLine Support Partner, or if you are a survivor or co-survivor who would like to serve as a LifeLine partner, please fill out the form below. All information provided is kept confidential and is never shared with anyone except your support partner.

    This program is a free service of LUNGevity Foundation.

    Here is the link to get started: www.LUNGevity.org/LifeLine

    If you have any questions feel free to post here on the message board or reach out to me any way that is easiest for you. 

    Cindy

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