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Steff

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Posts posted by Steff

  1. 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!)

  2. 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.  

  3. 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

  4. 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! 

  5. 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

  6. 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! 

  7. 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

  8. 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

  9. 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! 

  10. 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

  11. Babs-

    These are my thoughts about 2nd opinions and working with docs in general.  Unless you live in a tiny community with only 1 local doc, doctors are used to working with other doctors.  Some don't like it, but that is their problem...my  mom's oncologist has her fellow onc's to work with, as well as, the Seattle Cancer Care Alliance.  They do not make a big treatment decision without consulting one another.  She also takes orders from my  mom's pulmonologist as he knows best how to treat the various lung issues that have come up during cancer treatment.  I personally feel that patients are doing themselves a disservice if they willingly choose a doc who practices in a bubble.  There is so much knowledge to be gained by collaboration and no doc can know everything.  If your current oncologist takes your news of a 2nd opinion negatively, I really think that you are doing yourself a disservice by staying on as their patient, unless you have no other choice.  After all, this is your life we are talking about, not your doctor's.  They should be happy to have a patient advocating for their care...to me, that shows you are willing to fight for life.

    Hope this helps a bit.

    Take Care,

    Steff

  12. Lexiecat, my friend, we were just talking about you during a moderators meeting.  I'm happy to hear from you, but not to the reason why.  And I'm happy to hear you like your new doc.  Hopefully all will go as planned and you have a treatment plan (if needed) sooner than later.

    I have to admit, I had to google "ebike"...us rural folks where I live only know about 4 wheelers and tractors! lol

    I'm working from home (since April) and love it, but I agree that our 90-day trial of 2020 has been over for sometime...I definitely don't want to subscribe!  My cats are even sick of us being home 24/7!

    Good to hear from you,

    Steff

  13. Gary-

    I'm happy to hear that you have a plan of attack.  My mom did the triplet for 6 sessions before going onto keytruda alone.  The 6 sessions reduced her tumor to where it was unable to be seen and she could have her tracheal stent removed (her tumor was on the back of her trachea).  People have seen great outcomes with this triplet now that it is a standard of care for those with our without PD-L1.  I hope this does the trick for you too!

    Take Care,

    Steff 

  14. Gary-

    My mom had a high PD-L1 prior to beginning the triplet.  Keep in mind, this was nearly 3 years ago and lots has changed since then. In fact, my mom was diagnosed in June and the triplet had just been publicly released as more effective than Keytruda alone just 2 months earlier.  Although my mom has a high PD-L1 percentage, immunotherapy can be very effective in folks without PD-L1 too.  The Keynote-189 trial showed increased survival rates no matter what their PD-L1 number, as long as it was combined with alimta and either cisplatin or carbo for first-line treatment in metastatic non-squamous NSCLC.  The triplet has become a standard of care for many.  However, as Michelle discussed, ruling out any other biomarkers/mutations is really important.

  15. GaryG,

    My mom had 6 sessions with the triplet recommended to you and then went on to about 1.5 years of Keytruda only for her adenocarcinoma recurrence, initially stage 3a.  She did have a high level of PD-L1 cells.  She had a tumor on the back of her trachea which was closing off airflow in which a tracheal stent had to be placed.  Within 6-8 weeks, the tumor had shrunken enough to have the stent removed.  It's been nearly 2 years since her final Keytruda treatment and (knock on wood) her lung cancer has not returned.  You can read more about her journey  here  and  here.

    I hope my mom's experience can answer some questions for you and give you some hope.

    Take Care, 

    Steff

  16. Tbaker,

    Bone pain isn't unheard of with chemo or immunotherapy, but you should definitely let your doc know.  There is likely something to help alleviate the pain.  Unfortunately, with chemo, most side effects continue with each treatment, but immunotherapy is a bit different in that side effects come and go.  Your depression could be a side effect of your treatment or just life in general.  Your docs can also suggest some things that might help with that too.  The nice thing about it is that you can accept or decline whatever suggestions they have for both issues, if you don't like their suggestions.  But it's important to report to your docs and nurses what you are experiencing.  

    Take care,

    Steff

  17. Fabulous news Deb!  As others have said, dropping the carbo will help with reducing side effects.  I am sorry about the possible cancellation of the 4th of July festivities, but you still have so much to celebrate!  Happy dancing for you!!!

    Take Care,

    Steff

  18. Welcome sashjo,

    If it is support you want, you have come to the right place.  We all understand what it is like to not feel normal due to lung cancer.  Feel free to share as much or as little as you like about yourself and your lung cancer.  These forums are great resources for information on current treatments and survivorship, so also feel free to look around.  Let us know how we can help.

    Take Care,

    Steff

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