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  1. Today
  2. Roz

    Another recurrence, another call to Mom and Dad

    Susan, I'm sorry I didn't see this sooner as I would have responded right away. So happy to hear that today is a better day. I hope that the treatment starts as soon as possible and completely understand your frustration and feelings of anxiety. Here's to many more sunrises and sunsets ahead!! Ro
  3. Tom Galli

    Keytruda and PD-L1 percentage

    Bacchus, I agree with Steff on the relationship between PD-L1 markers and lung cancer cells and how immunotherapy works to eliminate lung cancer cells. Stay the course. Tom
  4. Yesterday
  5. Tom Galli

    Keytruda, 1 year later

    Steff, Great good news report and thanks for moving this to immunotherapy. Many will benefit from reading about your mom. As always... Stay the course. Tom
  6. BridgetO

    Another recurrence, another call to Mom and Dad

    You are entitled to a meltdown whenever you need/chose/are overcome by one! I'm glad today is a better day. Bridget O
  7. A counseling psychology student at the University at Albany, and the principal investigator on a study titled Illness Self Concept and Mental Adjustment to Cancer is seeking participants to take a 20-25 minute survey. The only criterion is that the participants have carried a diagnosis for one or more of the following five forms of cancers (Breast cancer, Lung cancer, Prostate cancer, Colon cancer or Rectal cancer) within the past 3 years. Survey link and informed consent for this study: https://www.psychdata.com/s.asp?SID=180430 The study has been approved by the University at Albany Institutional Review Board [protocol number: 18-E-050-01]. If you have questions about this research study, you may contact the principal investigator Michael Verile at: mverile@albany.edu or my faculty advisor Hung-Bin Sheu at: hsheu@albany.edu.
  8. Robert Macaulay

    Keytruda, 1 year later

    Thanks for sharing start one year treatment this month. Bob
  9. LOVEMAMA

    Keytruda, 1 year later

    "stable" is great news indeed!
  10. LOVEMAMA

    Keytruda, 1 year later

    Really happy for your mother, my dear friend! Really proud for you too!!! It must be not easy for you too...
  11. PaulaC

    Keytruda, 1 year later

    Great news!
  12. We are proud to be partnering with the American Brain Tumor Association to participate in a study to learn more about the journey of those with lung cancer. These surveys will help us to learn, so that we can support you. We encourage you to answer the survey by following this link.
  13. Susan Cornett

    Another recurrence, another call to Mom and Dad

    Thank you all for indulging my meltdown yesterday. Today is a better day because I decided it would be. The sun is out (FINALLY) and I'm alive. I don't believe I can ask for much more than that.
  14. Judy M.

    Another recurrence, another call to Mom and Dad

    Yes. I have put my daughter in charge of giving medical updates to the family. I've often said that telling the family is as difficult as getting the news yourself. Judy M.
  15. LexieCat

    Keytruda, 1 year later

    Thanks for sharing such great news, Steff! I hope she stays "stable" for a long, long time to come!
  16. Steff

    Keytruda, 1 year later

    Hi all, Since my other discussion thread was getting quite long and it's been 1 year since my mom started Keytruda, I decided to start a new thread here, where it might be better seen by those who are looking for information on immunotherapy. So, the 1 year update on my mom....she survived and lived to talk about it!!! She got her CT results yesterday and it was all good news....area around the cancer is stable and may look better (inflammation-wise). We have not been able to see the mass on the back of her trachea since October (2 months after beginning chemo + Keytruda). It still could be there, but it is not causing any problems. I don't know if the term NED will ever be used with her since we cannot get a perfect picture of where the mass was, so we are just using the term "stable". So, for us, "stable" is great news!!! There is a "shadow" that is showing up in her left lung that appeared out of nowhere. Her pulmonologist thinks it is most likely some inflammation or infection - he will keep an eye on it, but is not alarmed by it. Her shortness of breath still persists, she has 1 more heart test to do to see if that is the problem. If it is not, we are to the point where we will likely accept shortness of breath as a new normal for her. Luckily, her pulmonologist does not believe that Keytruda is the culprit, so we plan to stay on it as long as possible. Keytruda side effects: severe itchy skin - it drives her crazy especially at night. She currently takes Benedryl at night if itching is out of control and she has also found an Aveeno excema cream that relieves itching for a bit. Although the itching is bothersome for her, she would rather deal with it than cancer. Other side effect, but it is controlled by meds is her thyroid. She had a slow thyroid to begin with. It got slower, she just increased her meds and it is now controlled - no big deal. Docs keep an eye on it and increase/decrease thyroid med dose when needed. This time last year, I felt hopeless. My mom's lung cancer recurrence was a punch in the gut. I was heart broken when we were told that due to the location of the mass, it could not be surgically removed, nor was it recommended for the first treatment attempt to use radiation (some of the mass was in the original radiation field from her previous bout of lung cancer). So came the recommendation of Keytruda + Alimta/Carbo. I was unhappy and scared of this new "immunotherapy stuff". But this"immunotherapy stuff" is the best thing that has happened for my mom's lung cancer. If you are a newcomer to lung cancer and/or immunotherapy, do know there is hope. My mom has more hope now of surviving cancer than when she was originally diagnosed in 2015. And it is all due to continued lung cancer research and development of new treatment options. My main take away from this last year is: 1) My mom is tough as nails, 2) Even in the darkness of a lung cancer diagnosis, there is hope. Take care, Steff
  17. Steff

    Keytruda and PD-L1 percentage

    bacchus, All NSCLC cells have the chance of being killed by the immune system. What anti PD-L1 immunotherapy does is remove the PD-L1 cancer cells' ability to hide from the immune system. All of the other cancer cells may not be "hiding" at all or "hiding" very little and can be seen by the immune system much easier. So when the immune system is unleashed, most, if not all, cancer cells are visible for the immune system to attack.
  18. KatieB

    Another recurrence, another call to Mom and Dad

    Thinking about you.
  19. KatieB

    Am I stupid to even try?

    Cancer can steal our dreams if we let it. While you may not be able to dance a full production schedule- there may be things that you can still do to be a part of this production that you love. Have a frank conversation with the coordinators/producers and find an area that would be a good fit- maybe partner with someone so that if you have to miss a rehersal or deadline they can cover when you are not there. It's about adjusting to your current situation while still holding onto the things you love to do. Keep us posted on what you decide. Hugs.
  20. PaulaC

    Another recurrence, another call to Mom and Dad

    Susan I hope today is a better and I’m sorry you’re dealing with this. Big Hugs Tske Care Paula
  21. Steff

    Another recurrence, another call to Mom and Dad

    Susan, I often think about how things might be if the roles were reversed and I was the cancer patient, not my mom. I always wish that I could be the one who had gotten cancer, not my mom. She has enough to deal with with all of her other medical issues and taking care of my dad. But then I really think that my mom would probably worry even more if her only child were the one with cancer. I couldn't even imagine having to tell my parents that I have cancer. You are a brave woman to not only confront your battle head on, but also to try to soften the blow for your parents. And it sounds like you are lucky to have Neil! I have a very small family too - no siblings or children either. It's pretty much just my parents and I (my husband isn't as supportive!). I understand the stress that comes with a small family unit and how we try to soften the blow for any type of bad news. I am so sorry you are having to battle this recurrence and I am as equally as sorry that you had the stress of sharing your news with your parents. Sometimes I don't know which is worse. I hope that your treatment begins quickly so you can get this bout done and over with! I am thinking of you and your family, sending hugs and awaiting to start my happy dance for you. Take Care, Steff
  22. Laurel

    Another recurrence, another call to Mom and Dad

    Susan- I am so sorry you are going through this. Sending soft hugs.
  23. Susan Cornett

    Another recurrence, another call to Mom and Dad

    The logical part of my brain knows the SBRT is the way to go. In addition to the article you shared, I found a lot of great articles about it; very promising. But today is one of those days - I'm tired/anxious/frustrated/done with cancer and have spent the day in tears. The last couple of weeks have been stressful with appointments and scans and waiting. Just ready to get this treatment under my belt and get out of my own head!
  24. Steff

    Hi I'm a Newbie

    Arlene, I apologize that I am a bit late to your original post, but I wanted to say "HI". I understand your fear,.frustration, anxiety, and any other negative emotion out there. When my mom was diagnosed in 2015 (stage 3A, NSCLC adenocarcinoma). It felt like a punch in the gut. I don't have any better way to describe it. I reached out to this forum because I was desperate. I was exhausted from crying all day, every day and I just needed someone to listen. I am so thankful I found this forum. I hope you have the same experience here. My mom has gone thru a lobectomy, radiation, chemo, and now immunotherapy. She made it thru her first bout of treatment with flying colors. She had a recurrence a year after treatment and had chemo and immunotherapy simultaneously for 5 months. She didn't fare as well the second time. She really struggled and spent nearly 2 weeks in the hospital due to infections. It was really tough, but she made it thru. One she is just on immunotherapy and shoes okay with it. There is hope. You can see it here everyday. I see it in my mom everyday. Although life is different,she still lives it. She still does the things she loves. You dad can get to this point too. Lung cancer treatment is growing rapidly. Immunotherapy wasn't even a known option for my mom in 2015. And now it is enabling her to live your life. No one can give your dad an expiration date, there are too many variables. We are all here for you, take care, Steff
  25. Tom Galli

    Am I stupid to even try?

    Jeneh, If auditions are right in the middle of six weeks of fractional conventional radiation, then you will be on the cusps of a rapid decline in energy level. My first two weeks of conventional radiation were a piece of cake. The third was not. The fourth, fifth and last week, I could hardly get into the car and walk to the treatment room. While it is true that everyone reacts differently to treatment, conventional radiation almost always hits hard during the last half of treatment. You can expect dramatic loss of energy and you will feel very tired. You may have sunburn-like skin pain and for lung cancer folks, a near constant non productive cough is typical. So, with your treatment ending the 1st week of October and debilitating effects lasting at least a week, your first 2, perhaps 3, rehearsals will be difficult. You might make auditions, but if dancing is in the cards, you’ll likely find the deck stacked against you. Stay the course. Tom
  26. Last week
  27. Jenah

    Am I stupid to even try?

    My daughter and I have been in our local production of Nutcracker several years now. I had to miss last year for a random surgery. Auditions are right in the middle of my radiation treatments (I start 8/23). This would involve rehearsals every weekend starting in October & performances every weekend in December. It also means being around approximately 200+ people, mostly children, during cold and flu season. I’m 3a adenocarcinoma (kras), left lower lobectomy was May 17. Should I skip this year? The idea of staying home and doing nothing is depressing to me.
  28. I've said it before and I'll say it again: cancer can be as hard, if not harder, on the loved ones than the patients. Our family is very close - I don't have any siblings and my husband and I don't have children. Our family unit is small. After 2.5 years, my husband and I have a process. He goes with me to all of my scan result appointments. As soon as Super Doc gives us the results, Neal steps out and texts or calls my parents with the updates. I always want to be with them if we have to give them bad news. My parents live 4 hours away; otherwise, I think they'd crowd into the exam room with us. Although we had to give them bad news a couple of weeks ago, we actually had something in our favor. A lifelong friend of mine was visiting with them on the way to take her daughter to tour a college. She was able to keep my parents somewhat balanced this time. I'd been preparing them for the results - figured this was coming. But no one wants to have to call their parents and tell them the cancer is back. Stupid cancer.
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