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Steff

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  1. Like
    Steff got a reaction from Tom Galli in Coughing/chest pain resolved once immunotherapy is started?   
    Katum,
    I'm sorry to hear about your mom's situation.  I agree, it's hard to stay optimistic sometimes.  The good news is that your mom will probably feel much better after all of the fluid is drained.  Don't be too surprised if it needs to be drained a few times.  My mom had her pleural effusion drained probably 10 times over a year.  She ended up being full of infection, which was the likely cause of the continuous pleural effusion.  Although it was a pain to get it drained all of the time, she felt instantly better afterward - hopefully your mom will too.
    I am happy your mom has you for support during this journey.  I know it's not an easy road to navigate, but you will get through this.  We are here for you anytime you need.
    Take Care,
    Steff
  2. Like
    Steff got a reaction from Katum31 in Coughing/chest pain resolved once immunotherapy is started?   
    Katum,
    I'm sorry to hear about your mom's situation.  I agree, it's hard to stay optimistic sometimes.  The good news is that your mom will probably feel much better after all of the fluid is drained.  Don't be too surprised if it needs to be drained a few times.  My mom had her pleural effusion drained probably 10 times over a year.  She ended up being full of infection, which was the likely cause of the continuous pleural effusion.  Although it was a pain to get it drained all of the time, she felt instantly better afterward - hopefully your mom will too.
    I am happy your mom has you for support during this journey.  I know it's not an easy road to navigate, but you will get through this.  We are here for you anytime you need.
    Take Care,
    Steff
  3. Like
    Steff got a reaction from BridgetO in Coughing/chest pain resolved once immunotherapy is started?   
    Katum,
    I'm sorry to hear about your mom's situation.  I agree, it's hard to stay optimistic sometimes.  The good news is that your mom will probably feel much better after all of the fluid is drained.  Don't be too surprised if it needs to be drained a few times.  My mom had her pleural effusion drained probably 10 times over a year.  She ended up being full of infection, which was the likely cause of the continuous pleural effusion.  Although it was a pain to get it drained all of the time, she felt instantly better afterward - hopefully your mom will too.
    I am happy your mom has you for support during this journey.  I know it's not an easy road to navigate, but you will get through this.  We are here for you anytime you need.
    Take Care,
    Steff
  4. Like
    Steff got a reaction from Tom Galli in Small nodules (6mm or less) following surgery   
    JCM-
    My mom has CT's of the lung and abdomen once per year, it was more while she was on immunotherapy.  We were told it is to monitor the GI/liver/kidneys/etc - looking for inflammation. They obviously were also looking for any metastases too, but we were reassured the CT was standard protocol.  I wouldn't read too much into it, the docs are just trying to get the full picture.   
  5. Like
    Steff reacted to BridgetO in Not really sure if I should be here or not   
    Hi David and welcome! These forums are a good place for you to be.  You've received some excellent info from other members and I don't hav emuch to add. My lung cancer was small, stage 1a and all I needed was surgery. However I've had two other primary cancers, one of which was stage 3 and aggressive with a " dismal prognosis" so I've been through radiation and chemo too. I'm now NED on all 3 cancers. If you haven't run into the term NED before, It means No Evidence of Disease and it's often used nowadays instead of "cured" or "in remission". So I'm here to tell you that treatment works and that I advise not relying too much on statistics. Best wishes to you. 
    Bridget O
  6. Like
    Steff reacted to MarieE in Another newbie ... Still a bit in shock   
    Just a quick update ... Just a couple of days away and my husband seems to be doing great. I'm the one who's having the nightmares and problems sleeping. I think he's better at denial than I am. 😉 Haven't had much time on the computer later but I'll definitely be looking for the caregivers' group. I don't expect this is going to get any easier for awhile. We're going out for a big brunch at one of our favorite places tomorrow and then just trying to get everything ready for early Tuesday morning. Hoping the surgeon is getting much better sleep than I am these days!
  7. Like
    Steff reacted to Tom Galli in Welcome Armed Forces Veterans of the United States   
    US Armed Forces Veterans, welcome here!
    I'm a veteran of 21 years on active duty in the US Army, a lung cancer survivor, and a Lung Cancer Support Community (LCSC) Forum Moderator. I'm proud to declare our support community is now open to veterans and those that support veterans in treatment.  I'll be your host but our entire LUNGevity community and Foundation is also on board. Together our expertise in all things lung cancer is wide and deep.
    How does this work? Most start by reading information on various forums, and you are most welcome to read in. If you want to contribute or ask questions, you'll need to register for our community. It is a simple process and details are here. Once registered, you'll be able to post on forums. You can choose any forum for your first post.  Most choose Introduce Yourself . You can make your first post in that section or here in the Veterans Forum. We'll find you.
    I suggest you tell us details about your diagnosis and about your treatment plan. Revealing this information allows us to muster responses from folks who have your type and stage of lung cancer. Unfortunately, lung cancer treatment is complicated and treatment and side effects vary with the type and stage of diagnosed lung cancer. This is also the place for questions about treatment in the VA Healthcare System. We'll help with that difficult process and have tips and tricks to available to assist. 
    Most importantly, this forum's fundamental purpose is to demonstrate that you are not alone in this battle.  We are still in the fight! Once again, welcome to LCSC!
    Stay the course.
    Tom
  8. Like
    Steff reacted to mark111111 in Hello   
    Thank you everyone for the kind words. My thinking is if I don't laugh at this thing who the hell else can. I know some people like to keep their diagnosis private, which I totally respect, but that's not me. While texting an old friend last night named James I got the biggest laugh of the week when he said, "I'm so sorry to hear. If you need anything, anything at all don't hesitate to contact Pete. He lives closer." That little touch of normal guy interaction was so incredibly awesome I gut laughed for about half an hour. It felt wonderful.
  9. Like
    Steff got a reaction from BridgetO in Hello   
    Diane's Husband,
    I echo what Tom has said - become the expert and advocate so your wife can focus on her fight.  This is how my mom and I were.  My mom can't even tell you what type of lung cancer she has, she left that up to me.  I keep all of the records, I do all of the research, while she focused on doing what her docs told her and taking care of herself.  Luckily I found these forums and the LUNGevity website to help with my research and support.  
    My mom did not have the stress of kids at home.  But she was the caregiver for my dad (I use the term "was" because he now lives in an adult family home).  While my mom could easily manage taking care of herself, my dad was another story.  Also, I live and work about an hour away from my parents, so staying every night with them was not possible.  So we had to rely on the help of my mom's 2 sisters.  They were happy to bring a meal to my dad or sit with him while my mom was getting her treatments.  
    The reality is that you will probably need some help.  It might be just periodically or it might be regularly, but you will need some help.  The key is when you ask for help, be specific. People often want to do something but they don't know what to do.  Or they do something that they think is helpful and it's really not.  So direct people to what you need.  I have a very small family (me, my parents, 2 aunts/uncles, and a cousin).  So far, we have survived 4 years of this.  There were times where it was not easy nor ideal, but we survived.  You can too.
    Please feel free to reach out to us.  We are here to listen and help, if needed.
    Take Care,
    Steff
  10. Like
    Steff reacted to Rower Michelle in Scan Time Again   
    Hi All,
    The summer just flew by! Now I’m in that three week window for the next scan on 10-24. I see the onc on 10-25, good not to have to wait for results. 
    We’re heading to Maine next week for vacation so hopefully will be a nice distraction, upon return it’s the usual pre scan spa week. 
    Its been almost one year on targeted therapy, praying the happy pills continue to keep the brakes  on the cancer  
    It seems I’m pretty good at holding it together for eight weeks however the last three weeks is nerve wracking.  I will not let it wreck me-next vacation is already planned to Amelia Island in late January.  
     
  11. Like
    Steff got a reaction from LouT in Hello   
    Hey Mark, 
    I like your humor.  Sometimes that's the best way to deal with things out of our control (in my opinion) -especially when everyone around us acts so serious and somber once they hear the word "cancer".  I'm the cheerleader in my family (NOT literally).  I've been "cheering" on my mom for 4 years now, while she beat lung cancer, got it back, and then beat it again.  We've dealt with the sympathetic looks and the "ooh I'm so sorry's".  I think that people just really don't know how to respond.  
    I really like your "tumor texting".  Prior to my mom's diagnosis, she was in a bad car crash and had several brain scans.  She was told a couple of things from these scans - 1. She has a brain (it was a surprise to all of us! lol), 2. She has a "tumor" on her brain that has likely been there forever, it is benign and no big deal.  After she found this out, she blamed everything on her tumor.  It was funny to us, but others outside of the family gave us weird looks.  
    I hope you keep your sense of humor through all of this. You don't have to let lung cancer define you. While my mom has been dealing with lung cancer and it's effects for 4 years now, it has never defined her.  Even during active treatment and doctor's appointments several times a week, she has never allowed it to define or limit her.  I hope that you can find this happy medium as well.
    Take Care,
    Steff
  12. Like
    Steff got a reaction from LouT in Hello   
    Diane's Husband,
    I echo what Tom has said - become the expert and advocate so your wife can focus on her fight.  This is how my mom and I were.  My mom can't even tell you what type of lung cancer she has, she left that up to me.  I keep all of the records, I do all of the research, while she focused on doing what her docs told her and taking care of herself.  Luckily I found these forums and the LUNGevity website to help with my research and support.  
    My mom did not have the stress of kids at home.  But she was the caregiver for my dad (I use the term "was" because he now lives in an adult family home).  While my mom could easily manage taking care of herself, my dad was another story.  Also, I live and work about an hour away from my parents, so staying every night with them was not possible.  So we had to rely on the help of my mom's 2 sisters.  They were happy to bring a meal to my dad or sit with him while my mom was getting her treatments.  
    The reality is that you will probably need some help.  It might be just periodically or it might be regularly, but you will need some help.  The key is when you ask for help, be specific. People often want to do something but they don't know what to do.  Or they do something that they think is helpful and it's really not.  So direct people to what you need.  I have a very small family (me, my parents, 2 aunts/uncles, and a cousin).  So far, we have survived 4 years of this.  There were times where it was not easy nor ideal, but we survived.  You can too.
    Please feel free to reach out to us.  We are here to listen and help, if needed.
    Take Care,
    Steff
  13. Like
    Steff got a reaction from Tom Galli in Hello   
    Diane's Husband,
    I echo what Tom has said - become the expert and advocate so your wife can focus on her fight.  This is how my mom and I were.  My mom can't even tell you what type of lung cancer she has, she left that up to me.  I keep all of the records, I do all of the research, while she focused on doing what her docs told her and taking care of herself.  Luckily I found these forums and the LUNGevity website to help with my research and support.  
    My mom did not have the stress of kids at home.  But she was the caregiver for my dad (I use the term "was" because he now lives in an adult family home).  While my mom could easily manage taking care of herself, my dad was another story.  Also, I live and work about an hour away from my parents, so staying every night with them was not possible.  So we had to rely on the help of my mom's 2 sisters.  They were happy to bring a meal to my dad or sit with him while my mom was getting her treatments.  
    The reality is that you will probably need some help.  It might be just periodically or it might be regularly, but you will need some help.  The key is when you ask for help, be specific. People often want to do something but they don't know what to do.  Or they do something that they think is helpful and it's really not.  So direct people to what you need.  I have a very small family (me, my parents, 2 aunts/uncles, and a cousin).  So far, we have survived 4 years of this.  There were times where it was not easy nor ideal, but we survived.  You can too.
    Please feel free to reach out to us.  We are here to listen and help, if needed.
    Take Care,
    Steff
  14. Like
    Steff got a reaction from Tom Galli in Kate7617   
    Kate,
    While my mom was in active treatment, she received her flu shots while getting her infusions.  Her oncologist states they are very necessary, along with the shot for pneumonia.  
  15. Like
    Steff got a reaction from Tom Galli in Hello   
    Hey Mark, 
    I like your humor.  Sometimes that's the best way to deal with things out of our control (in my opinion) -especially when everyone around us acts so serious and somber once they hear the word "cancer".  I'm the cheerleader in my family (NOT literally).  I've been "cheering" on my mom for 4 years now, while she beat lung cancer, got it back, and then beat it again.  We've dealt with the sympathetic looks and the "ooh I'm so sorry's".  I think that people just really don't know how to respond.  
    I really like your "tumor texting".  Prior to my mom's diagnosis, she was in a bad car crash and had several brain scans.  She was told a couple of things from these scans - 1. She has a brain (it was a surprise to all of us! lol), 2. She has a "tumor" on her brain that has likely been there forever, it is benign and no big deal.  After she found this out, she blamed everything on her tumor.  It was funny to us, but others outside of the family gave us weird looks.  
    I hope you keep your sense of humor through all of this. You don't have to let lung cancer define you. While my mom has been dealing with lung cancer and it's effects for 4 years now, it has never defined her.  Even during active treatment and doctor's appointments several times a week, she has never allowed it to define or limit her.  I hope that you can find this happy medium as well.
    Take Care,
    Steff
  16. Thanks
    Steff got a reaction from Mally in Mally   
    Awesome, congrats!
  17. Like
    Steff reacted to Mally in Mally   
    Hello everyone I just want to let you know that I had my 44th dose of opdivo yesterday and got my scan results which were NED and i feel so happy. Tom you were right when you said the radiotherapy would fry the lymph node in my neck and it did just that ...I start on monthly infusions now so that will feel more like a normal life than every fortnight ...I wish everyone on here the best of luck and keep positive because treatments are getting better every day 
  18. Like
    Steff reacted to Blossomsmom in We’ve almost made it!   
    Back in March when my Mom was diagnosed with stage IV SCLC/NSCLC combo, her Oncologist asked her what her goal would be if she were to decide on treatment as opposed to letting nature take its course. My moms reply was “to live to see my granddaughter get married on 10/19/19. Her Oncologist promised to do everything in her power to get her there. My mom started treatment the next week. We saw the Doctor yesterday for bloodwork and to discuss her upcoming scheduled Tecentriq infusion on Monday, the 2nd one since having a break due to some side effects from it. After some discussion the doctor suggested putting off Mondays treatment until the Monday after my daughter’s wedding. She said to my Mom “you’ve worked to hard to get this far to risk having  a side effect that could keep you from your goal”. My Mom agreed. So treatment is postponed until 10/21. I’m so greatful that my Mom has an Oncologist that see’s her and treats her as a living breathing human being and that she KNOWS what’s important to her. Sadly that’s something that’s missing from a lot of the doctors we’ve dealt with over the past year. I don’t know if that’s because of my moms advanced age (90 going on 60!) or if that’s the just the way it is. But I know for 100% certainty that in 22 days I will walk up the isle with my Mom just before the wedding procession begins and for that, I will be forever greatful to her Oncologist for making that possible.
  19. Like
    Steff got a reaction from LUNGevityKristin in This or That Tuesday: Favorite Fall Sport   
    Seahawks football all of the way! I bleed blue and green!!! 
  20. Like
    Steff reacted to Roz in Scanxiety group   
    Thanks everyone! You are all so supportive.
    Tom-I'm so happy to hear that you had good news! You are an inspiration to everyone!
    Michelle-Actually, I had more progression when I was on the Personal Cancer Vaccine with Tecentriq trial. But now the progression seems to be back to the way it was heading before the trial. Yes, I'm taking it as good news and hope the trial gets here soon! Thank you for following along and cheering me on! It means a lot to me!
    Lou-you have been an amazing support to me. Thank you!
    Take care,

    Ro
  21. Like
    Steff got a reaction from LouT in New here. Palliative Care for my Mother   
    Hi Internal Outburst,
    HATE is a common word used with cancer.  I'm sorry you have to relate to these two words.  I had very similar feelings as you 3 years ago when my mom was diagnosed with her lung cancer recurrence.  I completely lost it. I could barely function at work and was very thankful that my husband worked nights so I could come home a be crazy.  The first step in my healing was finding LUNGevity and finding some hope.  I now try to give back some of the hope that I received along the way.  So, here we go....
    Your mom is taking a very popular new-ish cancer treatment drug that is classed as an immunotherapy drug.  My mom was on it for about 1 year, along with chemo.  It worked well for her.  Side effects with immunotherapy alone are usually pretty mild - rash, itchy skin, hair thinning, and lack of energy being the most common.  My mom eventually developed serious inflammation in her GI area which resulted in her having to stop the treatment. But that was well after she had had no evidence of disease.  (BTW, my mom was in her early 60's when this all started).  Alternatively, my aunt (who is in her late 60's) just finished 2 years of Keytruda for Melanoma.  Her side effects were only hair thinning, dry skin, and lack of energy.  She continued teaching 3rd grade throughout her treatment.  There are many other success stories for Keytruda.  If the drug is right for your mom's cancer, she is in good hands.  One question - are the mets your mom has lung cancer or another form of cancer?
    Also, a note about palliative care - it's great that your mom has the option for it.  Palliative care is not end-of-life care.  It is not hospice.  It is a helpful program designed to assist all forms of treatment and recovery (it takes into consideration all health issues someone may have rather than different docs dealing with different issues).  Palliative care also does not have to be permanent.  
    Finally, please know we are here for you.  Vent to us, if it helps.  Also, know that these feelings are temporary.  You will find your way.  Caregiving and advocating is overwhelming on its best day, but you will get through this. 
    Take Care,
    Steff
  22. Like
    Steff reacted to Nancy Ann in Surgery tomorrow   
    Surgery was 4 weeks ago, tomorrow.  All went very well.  The pathology on the 23 lymph nodes that were removed were all clear.  My recovery has been going well, I feel very good.  Thank God for the yearly chest scans I had, as they say, “early detection”.  
    Lungevity is a wonderful resource, I am so lucky to have found!  
     
  23. Like
    Steff got a reaction from LUNGevityKristin in This or That Tuesday: Fall Drink Edition   
    APPLE CIDER ALL OF THE WAY!!!!!
  24. Like
    Steff reacted to LUNGevityKristin in This or That Tuesday: Fall Drink Edition   
    You must pick one and only one.  What is your favorite fall drink? Apple Cider or Pumpkin Spice Latte?

  25. Like
    Steff got a reaction from Tom Galli in Tick Tock - Scan Time   
    Great work, Curt! Time to celebrate!
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