Missy

neulasta on pro
My Mom recently diagnosed

4 posts in this topic

Hello my Mom was diagnosed with stage 4 NSCLC on May 1st and started treatment of Keytruda, Altima and one other chemo I forgot the name of - so much to remember on June 7th.  She has one tumor on her left lung so large it is wrapped around some arteries and causing her so much pain so she is doped up - but still alert she needs those meds so I am glad she is taking them.  It has spread to her right lung as well, her bones, blood, spine and pancreas - fortunately not her brain.  I lost my sister-in-law to kidney cancer 2 years ago and she was diagnosed with stage 4 and fought that battle for 5 1/2 years and did chemo every other week.  So I can't believe I am starting this fight again but this time with my Mom and Dad whom I am VERY close with both personally and physically.  We live 5 houses away but I have never been so relieved to be so close at a time like this.

Before I get to the nitty gritty of why I am here I will introduce who we are.  I was adopted into this family when I was not quite 3 months old just over 46 years ago.  That was the BEST DAY OF MY LIFE - well the start of the best of my life.  I was always told I was adopted which parents that adopt should do because they did it in a way that I don't even remember being told I just always knew and until I understood what that really meant I thought they bought me at the grocery store - you know along with their milk and eggs.  I always felt like they picked me so it was always something positive not some dirty little secret.  My friends when i told them were always more curious about it then I was and I sort of look like them - I have a cousin on my Moms side and we have a photo when were little wearing Holly Hobby outfits and we look like sisters so yes people were shocked when I told them because I look like I was born into the family. 

When I was 14 my cousin got in a car accident the night of his High School graduation and become a quadriplegic.  My aunt had to work so my Mom went to the hospital every single day for the many years he was in the hospital and when he got out she took care of him every day until he could she did this for at least 5 years because I remember she was still helping him when I went to college after high school.  Her and my cousin are very close because of this and becuase of her he never let his accident get to him.  It's been geez 32 years since his accident and he's still doing great.  Luckily he has the use of his arms (not hands though just arms) so he can drive, he lives alone in a house and everything.  He does pretty much anything someone that has full use of their limbs can do.  He has challenges of course but he too is an inspiration and I think a lot of that has to do with my Mom.

When I was young my house was the place my friends always wanted to hang out - my Mom was a homemaker so was always there and everyone loved her.  When we moved when I was a senior when me and my friends would go out after we always had to swing by and touch the old house for good luck (we didn't move far just to a nicer neighborhood).  My brother he had a good friend whose mom abandoned him when he was 10 I think and it was just him and his Dad and when my brother graduated high school I remember in his speech he said my Mom was like his Mom and thanked her for helping him for all those years.   This is all testament to my Mom and how awesome she is. 

I am remembering all these things recently and even though I always knew it I am so glad everyone else did too.  My mom is just that amazing.  My Dad too.  My parents have been together their entire lives.  My Mom met my Dad when she was 15 and he was 19.  They got married when she was 17 just starting her senior year because my Dad joined the Army.  8 months later my brother arrived and it took me years to do that math and go "hey you prob were pregnant first"  She always just smiles when I bring that up.  I don't think I figured it out until I was in my 20's.  I guess because when we are young we don't think of our parents that way ya know.  I know that isn't why they got married though.  My Dad had joined the Army & didn't want to lose her so he said "here's a dime go call your parents and tell them we are getting hitched" and off to Idaho they went with her parents-my grandparents none-to-pleased.  My grandpa never thought they would make it and here we are nearly 53 years later and they are still in love with each other.  What can I say I hit the jackpot the day they picked me - along with their milk and eggs lol.  I know my birth mom I met her when I was 19 - again my parents told me she reached out and they let me decide.  And while she is a nice lady and I even have a birth brother and 2 half birth brothers I am so glad she made the decision to give me up.  Adoption is a beautiful thing and now I have known my birth mother longer then I didn't know her.  She only missed out on 19 years and she doesn't know me like my true parents know me but she knows me -anyway that's a whole different topic.....  This is about my amazing mother and her new journey. 

When I think back to my childhood the only thing that comes to mind is happiness.  I had the happiest and best childhood. We weren't rich, my mom didn't work so my Dad was the sole provider and I remember my mom clipping coupons but I never wanted for anything.  I didn't get everything I wanted which kids shouldn't but I always had enough.  If I could repeat my childhood I would want to do it exactly the same.  I remember being in the girl scouts and my Mom was the assistant leader and the leader would always get so jealous of my Mom because everyone always wanted to do things at our house and with my Mom not the leader.  I even got jealous of my friends sometimes when they would cuddle up with My mom because she was my Mom not theirs.  She is the head of our family that is for sure.  Even my Dad knows she runs the show and she's the boss.  So with her sick she can't do what she normally does so my Dad has had to take over a lot of the duties.  He finally gets how much effort it takes to keep a house clean and running smoothly.  He never had to do that before because my Mom always took care of him and those things.  That was her job and she loved it and did it so well.  With me so close and my brother who lives across the street from me we are able to help so me and my brothers wife have been doing a lot of the cooking.  Which also means I have been hanging out there a lot more which has been nice.  Even though we live so close to each other we didn't see each other every day prior to the diagnosis I could go a full week and not see them.  I was always in contact with my Mom at least every couple of days but seeing each other not a daily thing.  Now it is because as I am sure you are all too familiar when someone close gets a stage 4 diagnosis well you realize maybe time really is limited.  I even go with my parents to the Dr appointments and such.  It is so much to take in and remember you almost need that 3rd person.  And I can help advocate for her which is why I am here.

Like I mentioned my Mom got chemo on June 7th for the first time (round 1 done only 16 more to go which she will get chemo every 21 days until 17 rounds have been completed) and she got sick last night for the first time which the DR said about the 3rd day is when it would happen and she has that joint pain from the neulasta shot.  Which is the main reason I am here.  I wanted to reach out to people actually going through what she is going through to hear your experiences and what has helped and hasn't so I can share that with her.

My boss went through chemo as did her sister and her sister did the neulesta shot but she did the pod (Neulasta onpro).  She said she had way less joint pain then her sister.  Is this true?  My mom did start Claritin but she probably should have the day before her shot she started it about 8 hours after she got it.  Does anyone have any suggestions as to what can help with the symptoms of both neulasta on chemo?  When we went to her Dr appt before chemo started I asked about onpro and right away the Dr said insurance doesn't like to pay and she likes to reserve it for patients that can't make it back the next day.  Right away I was angry I hate it when care is dictated by insurance.  Let the patient decide if they want to absorb the cost or not.  Some have worked hard their entire lives and can maybe afford it, and is supply limited or something?  Because it should be available to everyone if they want it regardless as to how easily they get back especially if it is easier on the system.  Sometimes I think Dr's  dictate prescribed care based on kickbacks they get from what the RX companies I know they do.  So is Neulasta Onpro not paying them as well as the shot or something?  If the pod has less joint pain why wouldn't you go that route.  Maybe the Dr's don't  know this so if this is your experience please make sure your Dr knows that way with the next patient maybe they will think about their comfort first.  My boss even had little kids and she still got the pod.

And if there is anything else anyone can recommend that will help my Mom be more comfortable I truly appreciate it.  I know I am not the one with cancer but it's my Mom so it hit pretty close to home this time.  I believe people defeat the odds every day and you have to stay strong and positive and keep that stress at bay as much as possible.  My sister-in-law was never good at that she was always in stress, you just had to say boo and that would freak her out and that's the last thing her cancer needed.  So if you are that way please please please do what you need to do get that stress out of your life.  It is only feeding your cancer just as bad as anything else you bring into your body that isn't good for you.

My prayers are with you too.  We are all in this together.

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Hello Missy, (that was my childhood nickname)

I'm so sorry you for your loss and for you having to be here in the first place. I'm also sorry to hear how your Mom's cancer has spread.

I have been on Keytruda, and had really mild side effects. I experienced some fatigue and some mild nausea. That was about it. It didn't work for me and now I'm in a clinical trial.

I've also been on Opdivo, and had some fatigue with that as well. I also developed neutropenia and got the Neulasta shot at first, then I was switched to the device which gave me the shot at home (or where ever I happened to be at the time). I experienced terrible join pain for several days after each injection, whether given at the Dr's office or at home. Claritin didn't help. It was miserable for 4 to 5 days.

I was wrongly taken off the Opdivo and put on Tarceva. That's a whole different story. So, sadly I can't tell you if it worked for me or not. I hope it works out well for your mom!

Blessings,
Michelle


Sent from my SAMSUNG-SM-G890A using Tapatalk


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I had neupogen. It's like neulasta but it's a short acting form. I had shots every day for (if I recall correctly) about a week after each chemo infusion. I gave myself the shots. It was easy to do--very small needle injected into the belly. I had no drug side effects from the neupogen, no pain. . I know that some people do get pain with this form of the drug also, but I wonder whether it might be easer to tolerate? You might ask your mom's doctor.

Best wishes to you and your wonderful mom.

Bridget

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Hi, Missy,

Welcome to LCSC. That is a beautiful post. My mom is adopted, and she too felt like she was "picked" by the parents who were meant to have her.

I am sorry that you and your family are going through a difficult time. It is wonderful that you have each other and that your mom has so much support. I will reach out to some LCSC members to see if anyone can answer your specific questions about neulasta.

You mentioned that people defeat the odds every day, and many members of this site are living proof of that!

With gratitude,

Lauren
--
Digital Community Manager
LUNGevity Foundation

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