A Little About Me

[jenwo]

First a little about me.  I am a 51 year old wife and mother.  I have 2 girls in college and a boy in middle school.  I have faithfully had my physical every year and been cleared with little concerns.  I have never smoked or been around smokers.  I developed a dry unproductive cough and back pain around Christmas. In April I realized I was having a little shortness of breath when I would jog up the stairs.  I called my doctor and she ordered a chest x-ray on April 7th and life hasn't been the same since.  

In early April I was diagnosed with Stage IVB Adenocarcinoma Non Small Cell Lung Cancer.  They used the tissue biopsy to determine I have a HER2+ biomarker.  The only real symptoms I had were back pain and a slight unproductive cough.  I just figured I was getting older.  The LC has metastasized to my lymph nodes and bones in the upper left rib and right sacrum/hip.   My PDL1 is 70%.  I was seeing an oncologist locally that proposed treatment of a single agent immunotherapy (Keytruda), but luckily I was working on getting second opinions.  I was able to get in with UC Health Cancer Center in Denver and MD Anderson in Houston.  Both of those doctors recommended NOT doing single agent Keytruda as there has been little support to show it works again the HER2+ mutation regardless of PDL1 score.  6 weeks after diagnosis, we finally settled on a treatment plan.  I will start Caboplatin+Pemetrexed+Becacizumab chemotherapy next week and also add Zomeda to help strengthen the bones.  The UCH doc mentioned that palliative radiation could be a option if the back/hip pain increases.  Right now I am able to control it with tylenol.  

Both UCH and MDA mentioned a promising drug for HER2+ NSCLC patients that may be available through trial or prescription soon, Trastuzumab Deruxtecan, and we want to use that as a second line treatment for me.  With the bony mets, numerous lung nodules, large tumors and bi-lateral lung disease, I was given a 2-3 year median life expectancy.  I am grateful I have a bit of time to spend with friends and family, but I am still hoping for more. 

 I joined this forum to learn as much as possible about the road ahead.  I have never had a friend or family member go through this so I sometimes feel like I am flying blind.  I have no idea what to expect from chemo, but I am so ready to start fighting.  I know it was the right decision to wait to get all the information and multiple opinions, but I can feel it progressing.  My legs and back hurt more and the cough is certainly kicking up a notch.  

I was lurking a bit and I want to thank you guys for being such a supportive group to each other.  I look forward to sharing my journey, and yours.

[LexieCat]

Hi, jen, and welcome. I'm from Colorado originally (Colorado Springs) but have been in NJ since 1981--still have a lot of family there in the Springs and Denver metro area. I generally get out there to visit at Christmas (except for this past one, of course).

Sorry you're having to deal with this, but I'd advise ignoring any kind of "median life expectancy." There are people here 15-20 years out from an advanced cancer diagnosis and with all the new treatments coming out all the time, it's more and more possible for many lung cancers to be treated as any other chronic disease.

I started off with a Stage Ib diagnosis four years ago, when I had a lobectomy. Last summer, almost exactly three years later, it recurred in my other lung and I'm now Stage IV. Originally I had one met to the sacrum. After a course of chemo and immunotherapy (I have no targetable mutations), to which I had an initially great response, the cancer started to progress and I'm now starting a clinical trial for a customized immunotherapy (TIL therapy). I've had two of the chemo drugs you're getting (carboplatin and Alimta), but I'm not that familiar with the third (Avastin)--there are probably others here who have had it.  I didn't find the chemo to be that rough, but everyone reacts to it differently. If you haven't got one already, I highly recommend a port--your veins will thank you.

Glad you found us--this is a great place for information and support. 

[Judy M2]

Jen, welcome to group. I'm sorry for your diagnosis and echo everything Lexie said. There is a lot of lung cancer research going on, even with the current level of Federal funding. 

Avastin is being studied in clinical trials along with the established TKI osimertinib for EGFR mutant lung cancer (my mutation). I haven't yet heard how that trial is going and will post when I do. 

Disregard the statistics, there have been amazing breakthroughs in the last 5 years alone. 

For chemo, get a port as Lexie suggested. You may also want to consult with a palliative care doctor so you are prepared for any side effects. Wish I had done that first. I had 6x carbo and taxol and did lose my hair, but it has slowly grown back--very curly. I'm sure you'll be getting a session of chemo ed where they will go through what to expect. 

My sister also lives in Colorado Springs, but I haven't been there in almost 6 years. It was hard enough for me to breathe at the altitude before my diagnosis!

[Sandy N]

Hi, Jen!  I am very sorry to hear this.    You have received some good tips.  I'd like to reiterate to NOT pay attention to Dr. Google (outdated stats on the 'net) or anyone else as far as life expectancy goes.  My oncologist and I have an agreement that if I want to ask that question, I will be the one to ask it.  No one is to volunteer their .02.  Which he did before I started treatment.  I got the same 2-3 year spiel.  The agreement started right then and there because I wasn't going to take this disease laying down and neither should you.  Your comment about fighting is spot on and this is going to be a fight.  But oncologists have a lot more tools in the toolbox nowadays to help you fight.  So don't give up hope.  I've also been told that attitude is everything.  Yeah, there are going to be days you're not going to feel so good but you at least have the assurance of knowing that you are FIGHTING THE MONSTER!!!  

We're here for you!

[LouT]

Jen,

I don't have much to add to my Lungevity Family's comments.  I fully understand that a LC (lung cancer) diagnosis changes everything.  Jen's point about attitude is a good one.  We know how important and connected what goes on in our head is to what goes on in our body.  You appear to have a great love of your family and friends and this would be the time to make those relationships even stronger as you go down the road on your treatment journey.  Ask any questions you need answers to in our forum and, of course, to your treatment team.  

Tom Galli, a member you'll meet soon, has written a great piece on "10 Steps to Surviving Lung Cancer" and it can be found here.  Again, welcome to our site and we look forward to getting to know you better and provide any support we can.

Lou

[Tom Galli]

Jen,

Again welcome. You've already met some of your new lung cancer support family. Lexie's comments about survival statistics are well made. They are inaccurate for a number of reasons and if you'd like to learn more, see my critique of statistics here.

Certainly much more important than statistics is your attitude towards treatment and results. You might note my attitude guru Stephen Jay Gould's essay cited in the last paragraph of my statistics critique. That is worth listening to several times. Let it sink in and become sanguine, pronto, and in the extreme!

Next a suggestion to infuse some hope and disabuse you of the idea that you are done: watch The Shawshank Redemption.  It's message is powerful medicine for lung cancer survivors for "hope is a good thing and good things never die." In that vein, consider I was diagnosed in February 2004 and had every form of lung cancer treatment but immunotherapy. I'm still here and if I can live, so can you.

Stay the course.

Tom

[Rower Michelle]

Hi Jen,

We are in Estes Park on vacation now, not too far away from you.  I’m from NJ & live in the KCMetro.  Like you I had a persistent cough & had an unremarkable physical.  After an entire summer of a worsening cough, pneumonia, & a hospitalization, I was diagnosed with Stage IV NSCLC with a poor prognosis- six months to live at the age of 51.   That was in September, 2018.   Biomarker testing revealed an ALK mutation.  I did get a second opinion at KU & have been there ever since.  My next line of treatment will be managed by Dr Camidge.  
 

You were very, very smart to obtain multiple opinions.  Feeling like you are flying blind is a good way to put it.  Getting through the initial shock takes time, but once treatment begins there will be a greater sense of control.  
 

Ask us anything- we’re here for you. 
Michelle