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Steff

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Posts posted by Steff

  1. 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

  2. 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

  3. 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

  4. 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

  5. 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!

  6. 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 😁).

  7. Boo to waiting on getting a kitten!!!  🥴  But I guess I can understand what the doc is saying 😩 Maybe since she has to wait to get a kitten, she should get two when she is allowed!

    I know it's hard not to get caught up in cure vs. controlling cancer, but I think it's important to just accept that there is no official "cure" for lung cancer.  I was heart broken when my mom had her lobectomy and the the surgeon came out to say that there was more cancer than scans showed and despite his best effort, he was unable to remove it all.  I was sold on the idea that she would be "cured" after her lobectomy (so I was told by docs).  I feel that the idea of being cured of something can make us complacent.  Maybe we wouldn't go in for scans as regularly or our docs may not prescribe scans as often.  Regular, follow-up scans have saved so many people's lives because their lung cancer recurrence was caught sooner rather than later, as in the case with my mom.  So, although your mom may not be "cured", her lung cancer may very well be controlled, just like so many other chronic conditions.  Yes the treatments, many times, are not fun, but it allows our loved ones to LIVE their LIFE (and get kittens!)

  8. I think your fear of docs not wanting to be aggressive in treating his cancer is no longer needed - it sounds like his initial treatment plan is standard protocol for his cancer situation.  By the photo, your dad obviously knows how to LIVE.  As I said before, attitude is everything.  It sounds like he is still in good spirits and in good hands with his docs.  I know it's tough not being there, but I am happy that your mom is there with him.  

  9. Fox,

    I understand how frustrating it is not to be allowed in doctor's appointments and at the the hospital - I'm very controlling of my mom's medical information (I prefer to call it advocating!) and keep very good track of it.  When she went into the hospital with sepsis a few months ago, she couldn't have any visitors and I was going crazy not being able to hear, first hand, what the docs and nurses were saying.  I have been there for most of her oncology appointments in the past 5 years and it's so frustrating to be left out of the loop.  So, I feel your pain!

    I also understand how hard it is to know that one of our beloved parents is about to have the fight of their life.  When my mom was diagnosed, she was caregiving for my dad who has a neurological disorder that causes tremor and ataxia.  She had her hands full with my dad, as well as, taking care of herself during treatment.  Luckily, she is very stubborn and told herself that she was going to beat lung cancer.  And she has - twice.  See, I feel that attitude and zest for life has just as much to do with recovery as the medical interventions.  The fact that your dad lives his life and has a positive attitude is great - he will need this when treatment begins.  I am hoping the results of the biopsy will give you some relief in at least knowing what it is your dad is battling and where to focus your research.  For most of us, the waiting is the worst part.

    Take Care,

    Steff

  10. GaryG - if you are currently receiving cancer treatment, your doc may give you the flu shot at your next appointment - just ask.  My mom mentioned that she hadn't gotten her's yet (this was a few years ago) and they gave it to her while she was receiving her immunotherapy drip.  So, don't be afraid to ask, especially if you want to avoid Costco...our local Costco is always such a madhouse! 

  11. Hi Antonio,

    I think everyone who has been told they have a lung nodule and it may or may not be cancerous has experienced your anxiety.  I know my mom did when she was first told of her lung nodule.  People do get lung nodules for a variety of reasons, including lung infections/pneumonia.  While size and shape can sometimes be an indicator of LC, one can never be sure whether or not a nodule is cancerous just by a CT, X-ray, or PET.  A biopsy is needed to know for sure.  Depending on the size of your nodule and if there are no other areas of concern, your doc may just put you on a wait-and-see status.  Meaning, you will have periodic scans to see if the nodule has grown or changed shape.  My mom was on the wait-and-see program for about 6 months until her nodule grew and a biopsy was ordered.  In her case, she did have lung cancer.  She also has a nodule in one of her kidneys.  We noticed it about 4 years ago.  It's not changed in size or shape, so her docs are not concerned that it is cancer, it is just something she has in her kidney.

    During the wait-and-see time and while we were waiting for biopsy results, the anxiety of my mom possibly having cancer was extreme.  After we knew the answer and had a treatment plan, things got better...we knew what to expect.  The unknown is tough for most of us to handle.  Please know we are here for you during your journey.

    Take care, 

    Steff

  12. On 8/14/2020 at 6:38 PM, LexieCat said:

     

    "Since I’m not your doctor anymore I can say this: fu__ cancer"

    LOL, I miss him and his wild socks....

    Ha! My mom's pulmonologist wears wild socks.  When her old pulmonologist left and she was assigned to her current one, my mom was not happy.  I attended the first appointment with her and noticed his crazy socks right away.  I knew at that moment, he was a keeper! And he has not disappointed us in the 4 years she has been with him!

    You got this Lexie! 

  13. Hi MimiP,

    I'm sorry to hear about your dad's advanced stage diagnosis.  I understand that he had been tested for various mutations, but has he had his PD-1 or PD-L1 levels tested?  This can be an indicator of how well the cancer might respond to immunotherapy.  However, first line treatment for advanced stage is often immunotherapy and 2 chemos.  My mom was on the same treatment protocol for her NSCLC recurrence - Keytruda/Pembrolizumab + Carbo + Alimta/Pemetrexed.  This treatment "cocktail" is often referred to as a triplet.  My mom had very good results with this treatment, as had many others no matter what their PD-L1 percentage is.  You can find my documentation of her first year in treatment  here.

    She received 6 infusions of the triplet and then went on to Keytruda only for about 1 year.  She did have some side effects from Keytruda (rash, GI issues, fatigue) and the usual side effects with chemo.  My mom saw immediate results, but that isn't always the case.  I am a big fan of the triplet and know it to be effective with many advanced stage NSCLC folks.  

    Hope this helps a bit.

    Take Care,

    Steff

  14. Welcome Susan,

    I was a lurker too, for a few months!

    I think you are asking the question that all of us have asked when diagnosed with lung cancer - will I make it? To me, you have one of the most important things to help your survival no matter what the tests reveal - being tough, strong-willed and willing to do whatever you need so you can spend more time with your husband.

    During my mom's nearly 5 year battle with lung cancer, I have watched her struggle and I have also watched her persevere.  I see she struggles more during her moments of exhaustion and diminished toughness.  And when those moments are over and her toughness resumes, she once again perseveres.  While treatment for lung cancer is necessary for recovery, I believe that your attitude has just as much to do with your survival.

    So, do you have the chance of sticking around for a long while? Yes - just be sure to watch out for buses, lightening strikes, etc 😁   lol

    Take Care,

    Steff

  15. So happy to hear that your daughter is coming to stay! What a treat!

    We are also working on our food stockpile. We are starting to see the back of our big freezer, in spots, so I am getting a bit nervous, lol!  We usually have a stockpile of meat in our freezer, just not this much.  Hoping that hunting season works out in Washington so my husband can bag a deer and add to the freezer.  We were lucky to get our garden going this year and although it started off slow, we are soon going to be trying to figure out what to do with a million roma tomatoes and zucchini! 

  16. catlady91,

    I understand your worry.  It took me a few years to get over the constant worry that my mom could die any second from her lung cancer and that every ache and pain meant that her lung cancer came back for a 3rd time.  Every second of every day and every minute of every phone call with my mom was consumed with worry and questions of how she was doing, what side effects she was having, what she ate, how she slept, etc.  It got so bad that I broke down and agreed to try and antidepressant/anti-anxiety med, which helped me with my feeling of hopelessness.  So, like I said, I understand your worry.  I was so consumed with her recovery that I missed out on enjoying my conversations and time with my parents.  Although I don't know that I would change anything, if I could, but I am sad I missed out on belly laughs and happy memories with my parents due to my constant worry.  Now that my dad is slipping away from dementia, that time I missed  due to my worry comes back to haunt me.  So, my message for you is to not let lung cancer consume you.  The reality is that we will all meet our demise and I would rather have happy memories with my parents than missing out on the joy I could have had if I wasn't so worried.  

    Turn your worry into motivation to learn all you can about your mom's condition so you can be the best advocate for her.  I'm seen as the boss of my mom's care.  Her job was to get better and my job was to arm myself with knowledge so I could have educated discussions with her docs.  This helped me feel like I had a bit of control, which was important because I am a total control freak.  

    Another reality is that your mom's lung cancer might come back after a period of NED/no evidence of disease.  Many here have had multiple recurrences.  While it completely sucks to have to go through treatments again, they are still her LIVING their life and that is what is most important.  See, lung cancer is not treated like the death sentence anymore - if your mom's doc is treating it that way, I would suggest finding another doc.  Due to advances in testing and treatment, lung cancer is now being treated like any other major chronic health issue.  LUNGevity's catch phrase "Find it, Treat it, Live" really hits home when you think about it.  The goal is to find LC as early as possible, treat it, and go on living.  Now that your mom has been diagnosed, she will continually be monitored, even if she is found to be NED.  The constant CT's, xrays, PET's, etc is to ensure docs will find any new LC quickly so they have more treatment options available.  So, will your mom's LC come back after NED? Maybe.  Will it come back as SCLC? Maybe (although I'm not sure how common that is).  Do you have time TODAY to make happy memories with your mom? ABSOLUTELY.

    While I hate when people tell caregivers that they need to take care of themselves and worry less, I'm going to hope that you are able to set your worry aside and truly enjoy the time you can spend with your mom.  Laughter and fun is some of the best medicine and shows our loved ones what it means to continue their fight to LIVE.  

    Hope this helps a bit,

    Take Care,

    Steff

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