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Steff

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Posts posted by Steff

  1. Great news, Claudia!

    I can give a quick share of my mom's lobectomy to hopefully ease your mind of the upcoming procedure.  My mom's surgery was old school - the option that you MIGHT have to have.  Even having the more invasive surgery, my mom feels that it was a walk in the park compared to her other treatments.  She was in the hospital for 10 days, but most people aren't there that long.  She had some complications due to docs taking the drain tube out too quickly which resulted in her increased stay.  She had 1 bad night where she took a couple of shots of morphine, but that was about it.  She was up and walking in 2-3 days and felt better than she had for awhile.  Her incisions were under her armpit, so she had to find bras that wouldn't irritate the area and had some nerve pain in her scapula that could be controlled with tylenol.  Afterward, we both felt kind of silly about how worried we were prior to the surgery!

    Hope this eases your mind a bit.

    Take Care,

    Steff

  2. LIn- I am so sorry to hear about your setback.  As a planner, I hate the waiting part - waiting for results, waiting for treatment recommendations.  Not sure what will come next.  Holding patterns do not bode well with me to say the least!  I hope you are hanging in there!

    We are dealing with missing family right now too, like others, I'm sure.  Not being able to be around our loved ones makes our situations 1000 times harder.  Right now, my mom just wants her family to surround her, but she can't even see her husband who is in an adult family home.  It's tough times, to say the least.  Do know that we understand what you are going through and can empathize.

    Take Care,

    Steff

  3. These side effects with immunotherapy are more common than not.  My mom experienced both shingles and lung inflammation.  She began taking the pill to prevent shingles and continues to take it to this day.  She's not had a flare up since being on the med.  She also had to take a few breaks from treatment to treat the pneumonitis with high dose steroids.  The breaks and steroids did not have a negative effect on her treatment outcome.  My mom also ended up with colitis, which ultimately ended her immunotherapy treatment, but she had already paused treatment a few months prior.  The colitis just helped us to make the ultimate decision to stop treatment permanently.  Prior to colitis, my mom was told that there was a possibility to change from Keytruda to a different type of immunotherapy (I cannot remember which one) that may not result in the bad side effects.  So, there might be a possibility to changing immuntherapies, but that is a question for her doctor.

  4. Suzanna-

    I have experienced the same thing with my mom.  And what I have learned over the past 5 years is that my mom is the best judge of what she is physically able to do and what she cannot.  I do know that my mom will rely on me more rather than doing something herself, if she can get away with it.  In those cases, I typically just say I am busy and she needs to fill her own water glass, etc.  I used to micromanage my mom's activity, but it only added to my stress and didn't affect the outcome of her treatments.  My suggestion, from one caregiver to another, is let your son decide what he feels up to that day.  Doctor's can say what they think he should be able to do, but everyone responds differently to treatment.  If his inactive-ness turns into an ongoing concern for you, that is when I would step in a say something.  In that situation I would be more worried about depression taking over than just being inactive.  And please remember, this is temporary.  

  5. Suzanna-

    One of the big culprits my mom had with all 3 of her chemo treatments (2 for NSCLC and 1 for leukemia) is nausea from severe acid reflux.  My mom had to be on a cocktail of antacids to calm it.  After the acid reflux was under control, her nausea was much better.  If your son continues to have issues with nausea, it may be something to look into.

  6. TNChuck-

    Hi there. My mom was on Keytruda for about 1.5 years.  There were times that she needed to pause treatment and take steroids because of inflammation/pneumonitis.  She also developed pneumonia and had some issues with fluid on her lungs.  You will want to ask docs about those possibilities - I'm not sure if a PET scan will show fluid on the lungs.  My mom's docs usually used a chest CT or xray to determine inflammation and fluid.  Despite the pauses in treatment and various issues my mom had during her treatment, she still had a favorable outcome and has been lung cancer free for a little over 3 years.  While you may read that immunotherapy is active for about 24 -26 days, that doesn't mean that the immune system isn't still working overtime.  Pauses in immunotherapy treatment is common, so don't worry about it too much, if your mom has to take a break.  I hope they can find what is causing your mom's shortness of breath quickly so they can treat it and she can get back to feeling better. 

    Take Care,

    Steff 

  7. AngelL,

    I'm a bit late to the party, but wanted to echo the welcome you have received from everyone else.  I'm sorry to hear about your diagnosis. Unfortunately, it is becoming more common for younger folks to be diagnosed with lung cancer. During my 1st LUNGevity Survivorship Conference, I was surprised to see many people my age (40 at the time).  I assumed they were caregivers like me, but I soon realized that they were not caregivers, but the warrior.  I even saw someone I went to high school with who has NSCLC.  While my experience taught me that it is more common for younger patients to have certain biomarkers, that is not always the case.  

    Coming from a caregiver whose mom was diagnosed when the grim statistics were more accurate, the outlook can be discouraging.  However, I've always had the philosophy that if 1 person can make it, so can my mom. My mom was diagnosed nearly 5 years ago and has survived her initial diagnosis and 1 recurrence.  Luckily, her recurrence was diagnosed after the popular immunotherapy + chemo triplet was FDA approved.  My mom had a great response to the triplet and has been lung cancer free for over 3 years.  

    While I agree that you are too young for a lung cancer diagnosis, I agree with Lindsay - maybe being young at diagnosis will be to your advantage.  Please know we are here to support you!

    Take Care,

    Steff

  8. Hi kjaMom,

    I am so sorry that you have to see your son deal with lung cancer.  But I am happy to hear that he has a loving mother like you!  I'm a caregiver for my mom who has had NSCLC twice, originally 5 years ago and a recurrence 4 years ago.  Watching my mom go thru treatment was tough for me.  I'm lucky that she is a good patient and does what she is supposed to.  As for what you should do next, I wish I could tell you that.  Here's what I did, maybe it will help:  I armed myself with as much knowledge as possible about my mom's type of lung cancer and the treatments she was getting.  The main LUNGevity website has great resources that are up-to-date.  There are also great resources for caregivers too.  I personally have used their questionnaires to give me ideas of what questions I should be asking the docs.  While I feel confident in my mom's oncologist and knew she was on top of any issues my mom had, that wasn't the case for the times my mom was hospitalized due to complications from lung cancer and treatment.  My knowledge of her lung cancer, treatments, current meds, etc was helpful to hospital staff.  Empowering myself with knowledge helped me feel like I had some control over the situation (I'm a control freak!).  I also tried to keep up with new treatment options incase my mom's current treatment plan wasn't working.  I wanted to be ready to have an educated discussion with her docs rather than feeling like I was behind and trying to catch up.  I was able to ask questions in real time versus emailing or asking at the next appointment.  

    I personally love the idea of the 2 of you living together - if that is something he wants.  I wish I was able to do that with my mom, but my husband probably wouldn't have been too happy about it! lol

    Hope some of this helps.

    Take Care,

    Steff

  9. Hi Valerie, welcome.  I'm sorry to hear about your adverse reactions with immunotherapy.  My mom was on immunotherapy for 1.5 years for NSCLC and I have an aunt who was on it for 2 years and is back on it, both time for lymphoma.  My mom felt some joint pain, but she also has RA, so we did not know if it could be contributed to immunotherapy or RA.  My aunt did not report much for pain.  It's not unheard of to have aches and pains with immunotherapy, but you should notify your doctor.  It may be the sign that the immunotherapy is causing inflammation throughout the body and low dose steroids may be needed (this isn't uncommon and usually isn't a reason to change/stop current treatment).  In regard to your mental health, I've not heard of immunotherapy causing panic attacks and feelings of hopelessness, but it's probably not out of the question.  It is something to definitely report to your docs.  Immunotherapy typically affects your thyroid. For some folks, a change in thyroid can affect your emotional state.  I also don't want to rule out the fact that you are young and have had a drastic change in your life.  Anxiety and hopeless feelings often accompany major life changes.  Maybe your doc will recommend changing up meds or dosages to help with your anxiety.  Do know we are here for you. Please reach out to us if you need to.

    Take Care,

    Steff

  10. Catlady - anything is possible when it comes to any type of cancer.  No one can answer whether or not your mom's lung cancer will come back.  Statistics mean nothing.  Just because 1 person has secondary SCLC after NSCLC doesn't mean your mom will get SCLC.  I think you are missing what's important here.  Your mom is doing well TODAY.  She is doing better than many others on this forum, including my own mother.  Be thankful for that and move on.  I'm sorry if this sounds brash, but seriously, you could be sitting in the hospital right now with your mom, like I am.  My mom was given a death sentence 10 days ago - aggressive leukemia.  We cried, we accepted it, and we moved on and started treatment 4 days later.  I can't help my mom if I am worrying about tomorrow and to be honest, today really sucks for her.  But she is still here and fighting.  So is your mom.  I'm going to quit commenting on this post because I don't want to seem insensitive to your concern.  Your concern is valid, but there is no reason to dwell on the what-if.  I know I don't have years left with my mom.  I might only have weeks or months, but I refuse to dwell on it because it gets in the way of me being in the moment with my mom.  I hope that you can find peace and move on to brighter days without constant worry.

    Take Care,

    Steff

  11. catlady91-

    I understand your worry about the future.  I experienced that with my mom's initial diagnosis and recurrence.  But lung cancer eventually becomes a part of life and you move on from it - most people do, anyway.  My worry about the future took away quality time with my mom.  I was picturing her death versus accepting that she is here with me today.  My mom and I have had many adventures in the 5 years since her initial diagnosis.  I enjoyed these times much more when I focused on the now versus the tomorrow.  Your worry isn't going to prevent anything from happening.  It is only going to affect your own mental and physical health.  If you don't care about your own health, you should think about how your own decreased emotional and physical health will affect your ability to care for your mom in the future.  Just because your mom was diagnosed with a chronic health condition doesn't mean you need to live your life in constant stress and worry.  In the words of Jimmy Buffett, sometimes you just need to "Breathe In, Breathe Out, and Move On".  Seriously, just let it go. 

  12. Olivia, I too am sorry to hear about your dad.  It sounds like you and your sibling have been through a lot in your young lives.  I hope that you are able to make some new memories with your father during the time you have left with him; whether that be weeks, months, or years.  As a daughter of a lung cancer warrior, my heart goes out to you and your sibling.  You and your family are in my thoughts.

    Take Care,

    Steff

  13. Welcome Sheila!  Congrats on your nearly 3 years of survivorship!  I am unfamiliar with your particular mutation.  My mom just has regular 'ol NSCLC with no mutations.  Having had VATS and navigating clinical trials, you will probably have some great advice for many of our fellow members who are soon to have surgery and looking into clinical trials.  I hope you can find what you are looking for here.

    Take Care,

    Steff

  14. catlady91-

    My advice is to let your mom deal with her feelings about lung cancer the way she needs to - as long as she is not harming herself or others.  She is relatively new to lung cancer (if I am remembering correctly) and it takes some folks longer than others to get over the negative effects of a lung cancer diagnosis.  In the past 10 or so years, my family has had one death after another and then on top of it, my mom's lung cancer diagnoses.  With all of the turmoil in our lives, my mom decided to see a counselor.  During the first meeting, the counselor informed my mom that she was grieving - she was grieving the loss of her old life, a life before lung cancer and a life where her parents, brother, and best friend were alive.  This made total sense to my mom (and to me).  Your mom is likely grieving too and with grief comes negative emotions and thoughts which can result in undesirable behaviors (negative statements, no patience for anything, etc).  I know you are just concerned for your mom, but as long as she isn't harming herself or anyone else, maybe you should let her be and come to terms with her situation.  You can't change the way she is feeling or what she says.  But you also don't have to let her actions and statements upset you.  When she says that you don't understand, you probably don't. I don't either because I have never had lung cancer or any other major cancer diagnosis.  At the end of the day, none of this is about us.  This is about supporting our loved one during a very trying time.  

    Hope this helps,

    Steff

  15. Olivia - in my mom's 1.5 years on immunotherapy, she had several pauses in treatment and nothing negative happened, the longest being 6 weeks.  The actual drug remains active longer than the time between each treatment (for Keytruda, the drug is given every 3 weeks and it is found that the drug is active for 24-28 days).  However, just because the drug is no longer active does not mean that the immune system is not still in overdrive and not doing its job.  It's been 2 years since my mom's last immunotherapy treatment and she is still having issues related to an overactive immune system that docs are not ruling out as a cause of immunotherapy.

    Take Care,

    Steff

  16. Glad to hear you have a brain and there's nothing abnormal about it!!!

    My mom found that she had a benign tumor in her brain when she had a brain scan after a car crash, probably there since birth.  For the longest time, anytime she made a mistake or forgot something, she jokingly blamed it on the brain tumor.  That joke went on for a couple of years and we all got a good laugh at her expense!

  17. catlady91-

    My mom's original diagnosis will be 5 years ago in November, her recurrence was about 4 years ago.  She was originally diagnosed as NSCLC stage 1a and we were told a lobectomy would successfully remove the cancerous nodules and ultimately "cure" her, although periodic scans would be needed to ensure the cancer did not return.  Unfortunately, there were cancerous lymphnodes that were unseen in any scans and despite the surgeon's best efforts and 8 hours of surgery, he could not remove 1 of the lymphnodes.  So her staging went from 1a to 3a in a matter of hours and there was no possibility of a "cure".  I was hung up on the concept of "cure".  The more I came to understand lung cancer, I began to view it as a chronic condition rather than something that can just be cured.  My mom has lived with other chronic conditions too - rheumatoid arthritis, diabetes, and chronic pain.  All are monitored and treated as needed - just like her lung cancer.  I think I was so caught up with the idea of a "cure" because I feared that my mom would die from lung cancer complications.  Although I cannot foretell the future, lung cancer is the least of my mom's concerns when it comes to her health.  She continues with regular, 4 month scans and if something comes up, she will address it then.  

    In what I have seen in the past 5 years, people can live just as long as those who have been "cured" as those who are just considered NED (no evidence of disease) or those whose cancer is controlled by treatment.  Many of us have had to revise what our perceived idea of what beating cancer means.  For me, it has changed drastically - I thought that since my mom was not "cured" she would surely die of lung cancer and that is not the case these days.  But now we celebrate no evidence of disease and the idea of a cure is long behind us.  I have often said this - Gone are the days that lung cancer is an automatic death sentence.  I lost 3 loved ones in the days where lung cancer was a likely death sentence and have seen how outcomes for those diagnosed with lung cancer have changed dramatically.  

    Please, don't get caught up in cure vs. NED, vs. controlled.  At the end of the day, all that matters is that your mom is living her life (and that includes getting a kitty 😁).

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