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Steff

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Posts posted by Steff

  1. I got to talk to my dad last night for 10 minutes! He is in an adult family home, so it is hard to get through to him on the phone and he's not much for talking on the phone anyway.  He calls my mom everyday, but apparently didn't have my phone number to call me, so my mom gave it to the nurse...five minutes later, he called!  He has dementia, but has been doing really well the last few weeks, so the conversation was less one sided.  He told me he is sick of hearing about this CORVID-13 stuff, or whatever it's called - lol!  I am hoping this will become a regular routine now that he has my phone number 😄

  2. Ms. Fredricks-

    Is there hope? YES

    My mom had a very similar treatment - Keytruda + Chemo, but her chemo drugs were carbo and alimta.  When my mom received this treatment, it was for a non-small cell adenocarcinoma diagnosis recurrence.  Her original diagnosis was stage 3a.  Her original diagnosis resulted in a lobectomy with follow up chemo and radiation.  The follow up treatment obviously did not work as her cancer was back in less than a year and her new treatment plan was put into play.  Rest assured, your mom is receiving the gold standard of care for her diagnosis.  This standard of care has evolved quite a bit in the past few years and has resulted in late stage lung cancer patients living longer and/or having no evidence of disease.  My personal opinion is that your mom is in good hands with immunotherapy.  

    You mentioned that she is scheduled to receive 4 treatments.  What will happen after that is they will do another scan to see if the cancer has responded to the treatment.  They then will decide to continue with the same treatment or change it - they could choose to continue Keytruda + chemo, or Keytruda alone, or something completely different if the cancer doesn't respond.  My mom did a total of 6 infusions with Keytruda + chemo (her original plan was 8 infusions of the combo, but her cancer responded really well) and then she went on to Keytruda alone for about 1 year.  My mom has had no evidence of disease well before her treatment was done.  Many, many people have great results with immunotherapy.  

    My mom was 63 when she was diagnosed the 2nd time.  She has many underlying health issues, including rheumatoid arthritis and diabetes.  She wasn't in the greatest of health.  Her docs were worried how her body would respond to the immunotherapy because of her autoimmune disorders.  She did relatively well with her treatments, but ultimately had to stop due to severe side effects.  Again, she had had no evidence of disease for quite awhile before this, so stopping treatment was not a hard choice for us.  Her side effects declined and she is mostly back to normal.  Most people respond fine to immunotherapy.  Your mom's high blood pressure meds may need to be adjusted through this process and she may need to take meds for thyroid issues (that's a pretty common side effect, but is manageable with meds).  The chemo has it's own side effects, but with meds to help, the side effects are mostly manageable.  It's no walk in the park, but atleast the chemo is likely to be temporary.

    I could go on and on, but you can check out my mom's journey  here. and  here.   

    Do know that my mom lives a full life and does the things she wants. She's ornery as ever and happy!

    Hope this helps a bit.

    Take Care,

    Steff

  3. We have a locally owned pizza place called Abby's pizza, in my hometown of Wenatchee, WA.  They have a taco pizza that's awesome, but all of their pizza is great.  I'm partial to a good Hawaiian pizza (yes I'm one of THOSE people) and they never disappoint! There is also a Brazilian restaurant where we live now that serves up wood fired, Italian style Brazilian pizzas (which I didn't know was a thing). It is probably one of the best pizzas I've ever had, with all fresh ingredients - a rarity, especially in our small town of 1500!

     

  4. I completely understand where you are coming from as it relates to the separation from our family.  I got to see my mom through her window on Saturday after I left groceries in the garage for her.  My dad is in an adult family home with mild dementia.  He somewhat understands what is going on, but it's tough on my mom when he asks for her to come over for a visit or to pick him up for a drive.  Telephone conversations are limited for me and him as it's difficult to get someone to answer the phone when the 1 staff member is dealing with 6 needy men!  He doesn't remember that he can call me, so my messages of love and hugs go through my mom.  I've not physically seen him since Christmas and I am in need of a big hug from my daddy!

    I'm sorry that this already crappy situation is made worse due to the isolation that COVID has brought.  Know that I am thinking of you and I am sending a virtual hug your way.

    Take Care,
    Steff

  5. Nel,

    I've not heard of going 6 weeks between Keytruda infusions here in the U.S.  The average time that Keytruda is activating the immune system is about 24 days (which is why the infusion is every 21 days).  Most people's immune system is still in overdrive after the 24 days, but everyone's immune system is different and "overreaction" times differ between everyone.  I have 2 concerns with going 6 weeks in between transfusions - 1) The drug will become inactive prior to the next transfusion, 2) The side effects may be more severe because of the double dose of the drug.  It's been over 1 year since my mom has been on Keytruda and things are changing rapidly in the immunotherapy realm of lung cancer treatment, but I am active on a few different immunotherapy forums and have not heard pushing the infusion to 6 weeks.  4 yes, but not 6.  I would be pressing your doc for a good reason why and if it were me, I would not accept COVID-19 as a reason.  Your life is just as important as a COVID patient.

    Hope this helps,

    Steff

  6. Concerned Daughter-

    Hi there, I am sorry to hear about this journey you and your family are on.  It is never easy to go through a cancer diagnosis, especially when things do not happen as quickly as we want them to.  I understand your concern, as a caregiver for my mom who battled lung cancer twice.  The uncertainty of tomorrow or next week is scary.  I wish I had a crystal ball to tell your future, but I don't.  But I do want to echo Tom's suggestion - a hospice program.  Hospice programs are wonderful and as Tom stated, assist with pain reduction.  My uncle recently passed away from an unknown type of cancer that was in his liver.  He had severe pain and hospice helped control the pain.  The nurses also got all of the essentials my uncle needed to assist in his daily living - hospital bed, shower chair, wheelchair, etc.  I highly recommend getting him on the program while official diagnosis and treatment plan are set up.  

    Please know we are here for you.

    Take Care,

    Steff

  7. Hi Kathleen,

    I am sorry to hear you are feeling down, but I completely understand.  My mom was diagnosed with NSCLC Adenocarcinoma, stage 3a when she was 61.  Although my parent's retirement plan was already not going in the direction they planned, the lung cancer diagnosis really threw lots of uncertainty into the picture.  You are going to hear from many of us that the lung cancer survival rates we all "google" do not reflect the current survival rate, an easy way to say this is that the information is old.  There have been many great advances in treatment in the past 2-3 years.  My mom was a recipient of those advances when she was diagnosed with her first lung cancer recurrence 3 years ago.  Rather than a death sentence, lung cancer is being treated more as a chronic condition these days.  There are many different treatment options and lots of options to assist with possible side effects.  Lung cancer diagnosis and treatment is never an easy road, but there is HOPE.

    I reached out to LUNGevity's forums when I was feeling hopeless.  Here I found HOPE and now I share in the HOPE.  My mom does all of the things she loves to do - crafting, swimming, going to concerts, and camping, she is 65 years old.  Life has changed, some for the better, some not related to lung cancer.  But she is LIVING her life.

    A lung cancer diagnosis is a dark, scary time.  We are here for you.  You will not find doom and gloom here.  You will find people reaching out for help and people giving help and HOPE.  We have newly diagnosed folks actively involved and longterm survivors that survived all of those scary statistics you have seen.  We are all here in spite of lung cancer.  This dark time in your life is temporary.  You will receive your official diagnosis and treatment plan and then it is off to battle.  All survivors here have lived through this battle or are living through it now and you can too! 

    Take care,

    steff

  8. Blossomsmom - I agree with you...I would take zits and bad hair days over fear of the unknown any day!  I have distanced myself from social media because it just feeds my fear and isn't helping.  I really have no words to describe all that I am feeling.  It's too overwhelming to think about next week or next month, so I am trying to focus on today, but it's tough.  Thank you to all who are able to stay home and stay healthy.  

  9. Bridget- Glad to hear you will be taking a break from the shelter! My current big concern is my manager for our homeless transitional housing project...she has advanced COPD and is not in good health.  She manages 11 units, some with young kids, the others with adult "kids". She also is stubborn and rarely listens to reason! lol  I am really struggling with finding a happy medium of keeping our homeless programs operational, but protecting my 5 staff.  Luckily they all are still willing to lace up their boots and go into battle despite the new worry of the virus.

    Maybe with your new found free time, you can do some crafting 😃  

     

  10. May2,

    It's not uncommon to have joint pain/inflammation/swelling from immunotherapy.  Everyone's body reacts differently to an overactive immune system.  The cough may or may not be related - I've not heard of a cough related to Ketruda as a normal side effect, but that doesn't mean it can't happen.  Unfortunately, low energy is one of the biggest side effects - both my mom and aunt had to deal with it while on Keytruda.  My mom had worse days than others, while my aunt just felt a bit lethargic every day.  The important thing is whether or not you have a fever.  If you do, contact your docs immediately, as it could be the start of a cold/flu/etc.

  11. Steve- Shaving my mom's head in our cold garage was a tough one for me, but I was happy to do it for her because she didn't want a hairdresser fussing over her when she wasn't feeling that great.  My mom decided to shave her hair when she felt too much like a shedding dog.  She found her hair in her food one day and that was the end of the hair.  My mom and I keep very short hair, so losing it wasn't a big deal to her.  She did get a free wig, but only wore it once.  She had lots of fun head wraps, like Bridget - some came from the infusion room where she got her chemo drip - they had lots to choose from for free.  What she wore most was a really soft winter hat - she lost her hair in March, so her head was very cold.  She even wore the cap to bed to keep her head warm - something your wife might think about.  A funny story we like to tell is when her eyelashes decided to fall out - my mom has never worn much makeup, but we were attending a Billy Joel concert and she wanted to dress up a bit, so she decided to apply mascara.  I heard a scream from the hotel bathroom and out she came with the mascara brush with most of her eyelashes attached! We laugh about it now, but at the time it was traumatic for her - luckily she had the piano man to help her forget about it all!  

    Another thing you might want to share with your wife is that my mom's hair came back curly - my mom always has had very straight hair.  She got to enjoy curls for about 6 months, which she loved!  So, your wife may end up with some hair she has always wished for at the end of this, even if it is just for a short time.  Also, the hair on my mom's legs never grew back - she loves that during pool season!

    Take Care,

    Steff

  12. Blossomsmom,

    I've struggled how to respond to your post.  I wish I could say that everything is going to be okay and that you have many more Christmases with your mom.  But I guess none of us know how many more we have.  So I am happy to hear that you spent your time making happy memories with your family.  I am also happy to hear that your mom is going about her life as she wants.  She has found some normalcy and now it is time to find yours.  I know this is not an easy task as I've struggled with it myself.  At the end of the day, when the treatments are done and appointments slow down, we as caregivers are forced to confront our own lives once again.  We must push past the constant worry over every headache or "down" day.  We must help ourselves heal so we can be ready for when our moms need us again, whenever that may be. 

    Please know, you are just as strong as your mom.  Caregivers may not go through the physical battle, but we endure so much of the pain along side our loved one.  We spend our time trying to anticipate everything so we can provide peace and comfort to our warrior.  We take on the worry so others don't have to.  And you have shown the ultimate strength in supporting your mom through her choice to enter into hospice and LIVE her life.  So now it's time to reclaim your life as well.  I am sure this is what your mom wants for your too.

    I hope that you can do one small thing for yourself today and can really appreciate where you have come and that you have survived.

    Take Care,

    Steff

  13. Lisa,

    I feel confident that you will find HOPE here.  I came here 3 years ago looking for the same thing when my mom was diagnosed with her lung cancer recurrence (NSCLC adenocarcinoma).  Finding LUNGevity was one of the best things to happen with this journey.  I hope you feel the same.

    My mom had chemo (6 rounds) + Keytruda and then went on to Keytruda alone for about 1 year.  She currently has no evidence of disease and has been off of treatment since October 2018.  I hope you have as much success with immunotherapy as my mom did for her lung cancer recurrence.  You can read about my mom's journey  here.   I hope it can give you some insight to her first year of immunotherapy treatment and give you some hope.

    Take Care,

    Steff

     

  14. Tom,

    I am glad to hear you were able to watch the big game and that you have great friends to help out - I agree with Bridget, people who clean your fridge are keepers!  I was happy to see that your prediction for the game was incorrect - I was rooting for the Chief's simply because I have despised the 49'rs since birth (die hard Seahawks fan here).  I hope to hear that all goes well with your post-op appointment and you continue to feel more like yourself each day.

    Take Care

    Steff

  15. KBC-

    I am sorry to hear about your step-dad.  My mom struggled with eating early on in her treatment with chemo + Keytruda.  Part of it was not feeling great from the chemo and the other part was her constant coughing.  She had a stent in her trachea which caused a lot of irritation.  During this time, my mom increased her dosage of mucinex (I believe to 3 times per day).  This helped to keep some of the phlegm at bay.  She's been on a constant does of twice per day for several years.  Is your step-dad taking mucinex?  If not, I would ask his docs what dosage they recommend to start at and get him going on it asap.  Another thought of his lack of eating may be more psychological rather than physiological.  Stress and sadness over a big life change like a cancer diagnosis is pretty common.  Perhaps your step-dad could use some assistance in the physiological department - whether it be medications and/or speaking to a counselor.  No matter what the cause, losing lots of weight during cancer treatment isn't always a good thing and the issue should be addressed with your step-dad's docs until something can get figured out.

    Take Care,

    Steff

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