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Deb W

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  1. Like
    Deb W got a reaction from Curt in Almost Two Year Check Up   
    So very happy for you, Curt.
    Deb
  2. Like
    Deb W reacted to Robert A. in Trabecta Side Effects   
    My wife has been on Tabrecta since June with occasional swelling. She takes Lasix as needed. Yesterday the 31st, she had a teleconference with her oncologist to discuss her latest scan. The Dr. said her tumor is continuing to shrink ( this is her 2nd scan since starting Tabrecta) so we will continue with this course. Her Dr. also said that her Albumin levels that were low have risen so that is why she is having less swelling.
  3. Like
    Deb W reacted to Tom Galli in Preventative care?   
    Jess,
    Welcome here. Tagresso is a targeted therapy used to treat those who have adenocarcinoma with a tumor marker expressing EGFR exon 19 deletion and or exon 21 L858R mutations. I'm not sure I've ever heard of the drug being used as a "preventative" treatment. It is however used as an adjuvant therapy (a treatment that enhances the effect of surgery) for those who've had a resected tumor. Perhaps you are using the word preventative to mean adjuvant. Cancer vocabulary is tough! Here is more information on targeted therapy.
    I know folks who've contacted AstraZentica and have received discounts for the drug so I'd try that route if you decide to have the treatment.
    Why is there a need for adjuvant treatment? Unfortunately, what makes lung cancer dangerous is high frequency of recurrence after successful first treatment. In your mom's case, stage 1B, studies reveal about a 33% recurrence rate. Here is more information on lung cancer recurrence by stage of diagnosis. So there is more than some chance your mom's cancer will come back; there is a 1 in 3 chance it will come back.
    In my situation, I had to fight through 4 recurrences after a successful surgery. I was scheduled to receive adjuvant chemotherapy after surgery but surgical complications precluded me from having the adjuvant treatment. I sometimes dwell on what my life would have been like if I had the adjuvant treatment and didn't suffer the recurrences. 
    I hope this information helps you decide.
    Stay the course.
    Tom
  4. Like
    Deb W got a reaction from LouT in Please help!   
    Hi Tina,
    As others have said, a low dose CT screen is important (I think most important) - even if it's not covered by insurance.  I won't go through my whole story, but I have a strong family history of cancer as well.  I didn't know anything about low dose CT scanning - mine was found by my PCP at my annual check up. 
    I was having a conversation with my oncologist the other day about my family history.  He said that his belief, and there is a lot of research supporting this, getting cancer over 50 is random.  For sure smoking increases your risk, but it won't benefit you in  any way to blame yourself for the past. There are many people that smoke for their entire lives and never get lung cancer. I think what's important  now is to take the very best care of yourself in terms of nutrition, exercise and hydration.  But even then, as we age  we are at an increased risk of cancer.  
    Wishing you the best and know that we're here to support you!
    Deb
  5. Like
    Deb W got a reaction from Antonin in NSCLC Lung adenocarcinoma (Stage IV A)   
    Ha Ashwa,
    I was diagnosed with Stage IV in April 2020.  I had the triplet - Carboplatin, Alimta and Keytruda (4 treatments).  After that the Carboplatin was dropped, then the Alimta was dropped.   I had clear scans in August, October and December.  I am in remission. I found out I had the MET mutation , but my former oncologist overlooked it - blamed it on the surgeon who did the endoscopy and said he didn't send him the report.  If I had  known I had the MET mutation my treatment would have been targeted therapy with Trabecta.   My point is the triplet and standard treatment worked for me.  I think it's worth the risk of side effects.  I was supposed to be on Keytruda for a total of 2 years, however, I recently was told I have immunotherapy induced colitis.  I skipped the last treatment and was put on a 4-week course of steroids (my immune system is in overdrive).  I will find out in a week or so if they plan on starting me back on the Keytruda.  
  6. Like
    Deb W got a reaction from LouT in NSCLC Lung adenocarcinoma (Stage IV A)   
    Ha Ashwa,
    I was diagnosed with Stage IV in April 2020.  I had the triplet - Carboplatin, Alimta and Keytruda (4 treatments).  After that the Carboplatin was dropped, then the Alimta was dropped.   I had clear scans in August, October and December.  I am in remission. I found out I had the MET mutation , but my former oncologist overlooked it - blamed it on the surgeon who did the endoscopy and said he didn't send him the report.  If I had  known I had the MET mutation my treatment would have been targeted therapy with Trabecta.   My point is the triplet and standard treatment worked for me.  I think it's worth the risk of side effects.  I was supposed to be on Keytruda for a total of 2 years, however, I recently was told I have immunotherapy induced colitis.  I skipped the last treatment and was put on a 4-week course of steroids (my immune system is in overdrive).  I will find out in a week or so if they plan on starting me back on the Keytruda.  
  7. Like
    Deb W reacted to Rower Michelle in COVID-19 Vaccine Roll out Plans   
    Hi all, 
    Like many of you, I was so frustrated to see the COVID-19 vaccine distribution plan which prioritzes young healthy workers and prisoners over cancer patients.   I spent the last few days writing letters to all of my elected state officials, KC Star  and KU Cancer Center.   One of the Board Members of the KU CC actually thought this letter was pretty good and sent it directly to the Chief Medical Officer of the Kansas State Health Department!   I was very surprised!    I also got a phone call from the Chief of Staff of the Senate Majority Leader's office, who is a lung cancer survivor!  KS opens their legislative session today and revising the distribution plan is a top priority.  
     
    Here is a template letter you all can use to send to your state officials to advocate for changes to the vaccine distribution plan.  
     
    I am a  Stage IV Lung Cancer Survivor writing to express dissatisfaction with Governor's  recently announced COVID vaccine distribution plan.  While I appreciate the Governor’s flexibility in prioritizing senior citizens over 65 as the next in line, there is a critical flaw in this policy which overlooks the vulnerability of individuals with serious medical conditions, including cancer. 

    Initially the cited goals of the pandemic were to slow community spread of COVID-19 as not to overwhelm the healthcare infrastructure.  Today, that goal appears lost as (INSERT STATE HERE)  continues to suffer losses due COVID-19. Prioritizing young healthy “essential workers”, who have been safely functioning in the community doesn’t make sense as this population is very low risk for serious consequences from the virus.  Furthermore, prioritizing incarcerated criminals over cancer patients is utterly unconscionable!  

    What the Governor’s Task Force is not taking into account is that patients with cancer have been homebound, under the direction of their oncologists, for nearly one year.  Today, they are suffering long term consequences of depression and anxiety.   Additionally, due to an inability to travel, cancer patients have been robbed of the opportunity to participate in potentially life saving clinical trials or expert second opinions away from home.  

    As the legislative session opens, please stop this insanity.   Follow the lead of Texas, Florida and other states by doing the right thing by prioritizing those individuals with serious medical conditions.  
    Thank you for considering my request.
  8. Like
    Deb W got a reaction from GaryG in NSCLC Lung adenocarcinoma (Stage IV A)   
    Ha Ashwa,
    I was diagnosed with Stage IV in April 2020.  I had the triplet - Carboplatin, Alimta and Keytruda (4 treatments).  After that the Carboplatin was dropped, then the Alimta was dropped.   I had clear scans in August, October and December.  I am in remission. I found out I had the MET mutation , but my former oncologist overlooked it - blamed it on the surgeon who did the endoscopy and said he didn't send him the report.  If I had  known I had the MET mutation my treatment would have been targeted therapy with Trabecta.   My point is the triplet and standard treatment worked for me.  I think it's worth the risk of side effects.  I was supposed to be on Keytruda for a total of 2 years, however, I recently was told I have immunotherapy induced colitis.  I skipped the last treatment and was put on a 4-week course of steroids (my immune system is in overdrive).  I will find out in a week or so if they plan on starting me back on the Keytruda.  
  9. Like
    Deb W reacted to Lisa Haines in Heidi’s Hope: One Woman’s Journey with Stage 3 Non-Small Cell Lung Cancer   
    I am so happy to know Heidi, all thanks to our LUNGevity virtual meet ups.
     
    And I love the #WhiteRibbonProject, it's amazing and doing great.  
     
  10. Like
    Deb W reacted to LouT in Heidi’s Hope: One Woman’s Journey with Stage 3 Non-Small Cell Lung Cancer   
    Thanks Kristin.  What a great article...so much like what I see with this group since I first came here.  And what a brave woman she is!  It makes me feel weak for the way I behaved with a Stage 1a diagnosis...but I understand that we are all different.  I just find her inspiring and hopefully that article will help others.
    Lou
  11. Like
    Deb W reacted to LUNGevityKristin in Heidi’s Hope: One Woman’s Journey with Stage 3 Non-Small Cell Lung Cancer   
    Great feature about community member Heidi!
    https://www.washingtonpost.com/brand-studio/wp/2021/01/05/heidis-hope-one-womans-journey-with-stage-3-non-small-cell-lung-cancer/?fbclid=IwAR1-OmJ_zsGkfc1C3vWiZGrdA-1bxHkb5zPMbvDrKR4ytjMfV4R16ItDt2w
  12. Like
    Deb W reacted to Chris S. in Introducing myself.   
    My goodness! Thank you 😊 all for your sharing! Yesterday was rough. Today is a new day and you made it even brighter! 
    I will continue to research, but not Dr. Google snd check out the resources on this site. 
    Thank you! 
    Happy New year to all! 
    Peace,
    Chris 
  13. Like
    Deb W reacted to Rower Michelle in 365 days ago today   
    Glad to have you here, my friend! 
  14. Like
    Deb W reacted to Tom Galli in 365 days ago today   
    Tom,
    A year's survival is indeed worthy of celebration for this disease.
    Stay the course.
    Tom
  15. Like
    Deb W reacted to TJM in 365 days ago today   
    On Jan 3rd 2020 I got THE call at 4:30 PM on a Friday. For me that was the real start of 2020.
    Normally I'm not that in to anniversaries and birthdays etc. But My attitude toward them has changed.
    Peace
    Tom
     
  16. Like
    Deb W got a reaction from Tom Galli in Please help!   
    Hi Tina,
    As others have said, a low dose CT screen is important (I think most important) - even if it's not covered by insurance.  I won't go through my whole story, but I have a strong family history of cancer as well.  I didn't know anything about low dose CT scanning - mine was found by my PCP at my annual check up. 
    I was having a conversation with my oncologist the other day about my family history.  He said that his belief, and there is a lot of research supporting this, getting cancer over 50 is random.  For sure smoking increases your risk, but it won't benefit you in  any way to blame yourself for the past. There are many people that smoke for their entire lives and never get lung cancer. I think what's important  now is to take the very best care of yourself in terms of nutrition, exercise and hydration.  But even then, as we age  we are at an increased risk of cancer.  
    Wishing you the best and know that we're here to support you!
    Deb
  17. Like
    Deb W got a reaction from GaryG in Please help!   
    Hi Tina,
    As others have said, a low dose CT screen is important (I think most important) - even if it's not covered by insurance.  I won't go through my whole story, but I have a strong family history of cancer as well.  I didn't know anything about low dose CT scanning - mine was found by my PCP at my annual check up. 
    I was having a conversation with my oncologist the other day about my family history.  He said that his belief, and there is a lot of research supporting this, getting cancer over 50 is random.  For sure smoking increases your risk, but it won't benefit you in  any way to blame yourself for the past. There are many people that smoke for their entire lives and never get lung cancer. I think what's important  now is to take the very best care of yourself in terms of nutrition, exercise and hydration.  But even then, as we age  we are at an increased risk of cancer.  
    Wishing you the best and know that we're here to support you!
    Deb
  18. Like
    Deb W got a reaction from Rower Michelle in Please help!   
    Hi Tina,
    As others have said, a low dose CT screen is important (I think most important) - even if it's not covered by insurance.  I won't go through my whole story, but I have a strong family history of cancer as well.  I didn't know anything about low dose CT scanning - mine was found by my PCP at my annual check up. 
    I was having a conversation with my oncologist the other day about my family history.  He said that his belief, and there is a lot of research supporting this, getting cancer over 50 is random.  For sure smoking increases your risk, but it won't benefit you in  any way to blame yourself for the past. There are many people that smoke for their entire lives and never get lung cancer. I think what's important  now is to take the very best care of yourself in terms of nutrition, exercise and hydration.  But even then, as we age  we are at an increased risk of cancer.  
    Wishing you the best and know that we're here to support you!
    Deb
  19. Like
    Deb W reacted to Rower Michelle in A little help from friends needed...   
    Hi Everyone 
    Thanks for taking the time to participate in the FaceBook challenge.  Studio 1200 WON for the third year in a row, beating out the national firms once again.  My sister is totally thrilled and sends her deep appreciation for keeping her firm on top!
    Happy New Year!
    Michelle 
  20. Like
    Deb W reacted to GaryG in Introducing myself.   
    Hi Chris: Welcome among us. Sorry to hear about your diagnoses but so far it seems that you are on the right path. You are young and have the right approach and that's a good start. Your Molecular (or biomarker) test will determine your treatment and chances are many of us are already on that path. We are here willing and ready to help you along the way so please visit often and ask as many questions as you have. Chances are you will find your answer. 
    When/If you have time, visit the Lungevity home page where you will find a lot of educational material. My favorite section is Cancer 101. I wish you the best.
    GaryG.
     
  21. Like
    Deb W reacted to Rower Michelle in Introducing myself.   
    Hi Chris, 
    I was 51 when I received the call from a pulmonologist telling me I had adenocarcinoma, lung primary type in September of 2018.  Like you I was a healthy and the diagnosis came as a complete shock.  I had struggled through the entire summer with a worsening cough.  The initial panel of biomarkers only included a limited panel which came up with nothing.  I started emergency chemo while waiting for a broader test called Next Generation Sequencing to come in three weeks later.   
    It's very important to ask before starting the treatment plan what type of biomarker testing is being done, at the time I didn't understand there's more sensitive tests available and I was actually ALK Positive.  The treatment plan changed to  targeted therapy (pills) and my symptoms resolved almost immediately.  
    My husband was a wreck, in the nearly thirty years together, I've never seen him completely collapse.  It was a very unsettling time but as the treatment began to work, we felt better each day.  There was lots of ups and downs in the uncertainty of the early days and frequency of appointments.   When we could see the changes in my scans, at that point we felt like we could do this over the long term.  Today I am No Evidence of Disease (new way of saying remission). 
    You've got the right attitude going into this.  Give yourself permission to mourn, know that brighter days are coming.   My social worker recommended an excellent book by long term Stage IV lung cancer survivor Greg Anderson called Cancer: 50 Essential Things to do.  In this book, it provides a road map on how to put together your wellness plan.    We also recommend to stay away from Dr. Google.  There has been more scientific advances in the last three years than in the last fifty years so there are many long term Stage IV survivors.  Diagnosis is not prognosis.  
    We're here for you, let us know what you need so we can support you.  There's a lot of knowledge here so there's no need to do this on your own. 
    Michelle 
  22. Like
    Deb W reacted to LexieCat in Introducing myself.   
    Hi, Chris,
    I'm Stage IV now, too (started off as Stage Ib three years ago), so I'm now doing chemo and immunotherapy. I had a terrific response to the first four rounds and am now on "maintenance" therapy to keep everything at bay. I got all the testing and have no "actionable" mutations (which means nothing they can target with a specific drug). But I haven't had too rough a time with chemo/immunotherapy. Some fatigue, some brain fog. Some people do have a rougher go of it, but they have all kinds of tricks and medications to manage the side effects. 
    You've gotten great advice here already--this is a terrific group that has supported me from the beginning.
  23. Like
    Deb W reacted to Jennedy in Introducing myself.   
    Hi Chris, 
    I got that call about 7 months ago. I am stage IV, 61 years old at the time. No brain mets, but it is in my right shoulder blade. I am "lucky" in that I have a mutation that can be targeted. EGFR. I have always been the strong one and the healthy one in my marriage as well as the primary bread winner for the last 5 years. I have 3 adult daughters who were ( are ) in shock. 
    I'm still trying to figure things out. I think I was in shock for the first 3 months. My next scans are in February. 
    This forum was the best thing I found. Lots of knowledge, experience and support to be found here. 
    Keep us all informed. 
    Jenny
  24. Like
    Deb W reacted to Robert A. in Good news for a crap year.   
    My wife got off the phone about an hour ago with her oncologist about her latest scan. It showed her tumor continuing to shrink so we will continue with the Tabrecta and scan in another 7 weeks. This is her 2nd scan since starting on this medicine in June and the shrinking continues. Wishing everyone a Happy New Year, Robert.
  25. Like
    Deb W reacted to Rower Michelle in LSR   
    Totally agree, while you guys know how much I love the Beatles, in this case Bruno got it right: Happy New Year gang!
     
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