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Neverstopfighting

Just diagnosed with Stage IV adenocarcinoma with EGFR mutation

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Just looking for a support group outside of Reddit or Facebook. Want to keep semi anonymous bc of work.  No major symptoms except for dry cough for 4 months. 2 Cxr 6 weeks apart with same infection/mass turned into same day chest CT. Biopsy and PET CT diagnosed from Stage 3B to Stage 4. 

I’m at MSK in NYC so supposedly at the best so got good enough care. Starting on tagrisso 80mg on Friday, if meds make it there in time. Got insurance covered so that’s a relief.  

Next two days are just waiting.  I have a blog that I keep private for friends and family but otherwise, not sure what else to do  

I’m an engineer in wireless working with some big data and I read about prognosis studies using machine learning, Cox regression and some Lasso penalty to give patients some realistic life expectancy but my doctor doesn’t seem to be interested. My wife is a doctor believer while I am a contrarian by nature and need to question everything which makes for an odd dynamic in appointments.  

Just need advice on how I handle my second appointment with my oncologist. I literally found I had tumor 2 weeks ago, stage 3B cancer 10 days ago and stage 4, 5 days ago.  So it’s all new.  How much do I trust his prognosis that he doesn’t have enough info to tell me if I’m gonna live a few months or 8 years.   Btw, I’m a 44 male former light smoker.  About 4 to 5 cigs on and off for 9 years. Quit 9 years ago. Harder to get off the gum than cigs. I’m in really good shape, used to power lift before shoulder pains six months ago.  Mostly heavy weights on large muscles with compound moves such as squats, deadlifts etc...

Anyone is similar situations have advice, I would heart you 4-evuh.

joe

 

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Joe,

Welcome here and sorry to learn of your diagnosis. I am an engineer, a retired one, so I understand your preference for data-rich projections. 

I had to accept that lung cancer is a complicated disease that presents in an almost infinitely variable human. The variables at analysis are complex cubed. No oncologist enjoys a prognosis discussion. There is just too much uncertainty. 

You are just starting treatment (tagrisso) tomorrow. Midway through your treatment period you should have another scan. Those results will contribute to an informative prognosis discussion. 

When diagnosed with stage IIIB Squamous cell NSCLC more than 15 years ago, I had concerns about the inability of physicians to predict results. After all, medicine is a science and scientific methods should provide repeatability. Projections should be easy, right? As soon as the experiment moves from test tube to human being, the infinitely variable human condition confounds results predictions. 

Best advice I can offer at this juncture is to educate yourself on tagresso side effects so that you can meaningfully report these to your doctor. I’d chart the side effect symptom onset and waning because side effects tend to be cyclic through the treatment period. Knowing your cycle may allow your physician to suggest mitigation strategies. 

You’ll find this a good place to learn about lung cancer. We can field questions but offer no prognosis. 

Stay the course. 

Tom

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Joe, about 3-1/2 weeks ago I had a lung scan and a 5.8cm mass was found in right middle lobe near the heart border. I had to delay bronchoscope for biopsy because of a trip to Europe (if it was cancer it wasn’t going to stop the trip as long as I could walk and breathe!!!). Am currently trying to change pulmonologist because the one I saw had an absolutely horrible chairside manner (I’m an RN x 32 years and I feel like I was treated like no patient should every be treated). Working on a new pulmo now. Keeping this information private, only my husband and I know. Don’t want my grown children to know anything until necessary. Hoping not to offend, but I will keep you in my prayers and wish you a great recovery.

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Hi Joe.  I’m sorry to hear about your diagnosis.  I am 43 years old and had surgery (lobectomy) at MSK for Stage 1 Adenocarcinoma with an EGFR exon 19 mutation a couple of months ago.  I am a never smoker.  It took me a year of scans and eventually surgery to get a definitive diagnosis.  I too was very frustrated with all the uncertainty that surrounds diagnosis and treatment prognosis.  The good news is both have and are continuing to improve.  There are some affective treatments for EGFR mutations.  The statistics you find online are based on people that were diagnosed five years ago.  My father was diagnosed with Stage 4 LC cancer six years ago at age 58.  He did not have any genetic testing and a lot of the current treatments didn’t exist.  Even then the doctors never really discussed statistics and prognosis.   Doctors don’t like to have the prognosis conversation because it is different for everyone and the introduction of new treatments is changing the outcomes.   

My advice for your second appointment is to write down all of the questions you have so you are sure to get them answered.  Find out what the treatment goal is.  Document everything.  If you don’t understand something and you want to ask the doctor to explain it to you.  

I’m glad you found this group.  You’ll find a lot of support and more people with experiences closer to yours.  Never stop fighting!

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Hi Joe, 

Welcome from a fellow Stage IV NSCLC mutant.  I have a slightly different version with ALK Positive taking a drug similar to Tagrisso called Alectinib (its from the same family of inhibitors). 

I'm also from a big data background, in my last role, I worked for a Japanese Pharma Co on a joint project with IBM Watson. So for the first time in your life this is where the data points are a complete unknown. The drugs we are taking have just been approved by the FDA so it's impossible for oncologists to project a prognosis.  This is actually good news.  There are billions of investments into LC drugs now so the future is bright with over 900 EGFR clinical trials. 

Here is some practical advice to get you through the next few weeks, which are undoubtedly the most difficult.  I'm seven months into this and doing very well.  So remember even on the darkest days, there is always HOPE. 

1. Something More Than Hope by Diana Lindsay is the EGFR Stage IV survival guide.  

2. Anti-Cancer Living by Lorenzo Cohen PHD (MD Anderson) is the how to fight manual

3. Cancer Fighting Kitchen by Rebecca Katz will give you the basics on how to manage your diet.  On Tagrisso, it's best to drink it down with Organic Beet Juice. This will help manage the edema. 

4. Exercise at least 30 minutes a day- this will help with the fatigue.  The idea is not to be a fitness maniac, just keep your body moving. 

5. Contact your insurance company and ask for a case manager to be assigned.  Managing the insurance process is not simple and you do not want any surprise medical bills. 

6. I understand the professional concern- during these initial weeks,  I'd encourage you to take short term disability to get your bearings. The HR Department will keep your information highly confidential.  The Tagrisso will work very fast (sometimes just a matter of days).  You will feel well enough to travel.  Consider getting out of the City and go somewhere restorative (We hit Amelia Island) 

7.  Consider finding an Integrative Oncologist in collaborate with your medical oncologist.  These inhibitors have some minor side effects that the Integrative Oncs will work with you to manage (typically, a rash, fatigue or edema).  It's ALL manageable.  

8. Give yourself permission to take time to adjust to this new normal.  We're so used to juggling so much it's a hard cycle to break. Some days for me it was one hour at a time. The emotions are intense, so let them out, don't stuff it in.  It took me about 3 months before I felt like myself again.  Everyone is different.  Eventually the good days will begin to outnumber the bad days. 

There are a number of EGFR mutants on this forum taking Tagrisso and doing quite well. We're your new friends; you can trust this group with anything as we've all been there. 

I hope the second appointment goes well and remember if there's anything you remember later that you may have forgotten, then you can always ask for another appointment.  It's a different orientation to learning how to be a patient with a chronic illness.  

Michelle 

 

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OMGod,

This forum is a God send. Thank you all for the great advice and sharing your experiences .  I’m totally going to check out all the references you’ve suggested, especially that cancer mutant shaman, Michelle!   Keep rowing, girl!  

My second appointment is today. Tagrisso is also coming in the mail today. Just a quick question. Why organic beet juice? I’ve trying to find corollary or even anecdotal evidence on its positive effects with Tagrisso but haven’t found anything yet. Any links will help out a lot.  

Other than that, I’ll continue to pepper y’all with questions in the other sections and try to contribute where I can.  It is miracle I got found this forum.

thnak you all!! 

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Most Welcome Joe!  I didn’t find this forum until week 5 of my diagnosis so I remember vividly  how terrible it was. 

Heres another tip- I email my onc a list of questions prior to my appointment.  I never went to a business meeting without an agenda so it’s the same principle.  He knows what I’m expecting then has time to prepare.  

Now as for the beet juice- that’s a Lungevity Forum Original from another EGFR mutant “Eagle”. He’s on Tagrisso too.  I asked my Integrative Onc about it too.  These drugs are pretty heavy on our liver function (bye bye alcohol).  Beet juice is a natural liver cleanser.  For some reason it does a nice job managing the TKI (name of drug class) edema.  These puppies are so new that you won’t find any web links. The docs don’t know and would happily prescribe Lasix for edema.  In my opinion, why that another drug? 

Just don’t drink too much of the beet stufff. Over the winter my urine discolored & we thought it was blood.  After an emergency trip to the clinic it turned out to be beeturia (yep a real word). My onc says ABC “always bet on cancer” however in this case the veggie won. 🤪

Let us know how it goes! 

Your fellow ALK Mutant- Michelle

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All the best Joe.  I’m new to this world also, Stage IV ALK + Adenocarcinoma diagnosis on April 1st.  Have received a big welcome from this group very recently.

Thinking good thoughts,

Craig

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Hey all,

I'm signing up for a clinical trial here at MSK.  Here is the link from clinical trials.gov. Osi - Daco trial

Minimal side effects and hopefully a longer PFS.  My Onc told me median PFS with tagrisso alone is 18.9 months.  Patients are developing C797s mutation that is resistant to tagrisso. Adding sack will hopefully prevent the mutatation resistance from forming earlier. Let’s see how it works and the side effects won’t be too bad. 

I was told to get compression socks for potential edema. I also bought more than hope and anti cancer living so can’t wait to dive in.

ive also decided to treat myself with a few gifts each step of the way. Learning of stage 3B was a pair of Gucci loafers on sale and Bloomingdales. Leveling up meant Fear of God Mocs. Starting on meds might mean a ridiculous Off White face mask. I know I’m a crazy person but if it makes me feel just a bit better, why not?  

I also got a shot of  Zgeva for my bone mets so I’m hoping the lift again. Not super heavy but enough so I can be proud of my body a little bit.

Anyone gone through Tagrisso plus trial?

Joe 

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Hey Joe, 

Thanks for the update.  It sounds like the second appointment went really well.  It's fantastic you are able to enroll in a clinical trial.  They are often difficult to meet the requirements for given the required success criteria.  You are receiving cutting edge therapy.  One of the resources we rely on is the Bonnie J Addairo Lung Cancer Living Room on You Tube (just rebranded as the GO2Foudation.org).  Earlier this year, David Carbone, a leading LC researcher indicated that combination inhibitors are the way of the future.  Whatever they learn from EGFRs can be applied to the other mutants (so thank you for being our trailblazer!).  You might be the first one in this trial. You might call GO2 and find out if there are any other peeps across the country on this trial. 

With the TKIs there is a little bit of weight gain; I gained about 15 pounds before I went howling to the oncologist.  After about 5 months, my weight leveled off.  I watch my salt intake very carefully and on occasion take a Lasix with a honking big potassium pill.   I was carrying around 7 pounds in water weight!  

I had to wait until my bone mets healed before really starting any type of exercise.  I kept walking as much as I could then added the recumbent trike.  Instead of weights (which I was never really a fan of) I traded for yoga.  That works wonders for your mood and lungs too!  Should be free at MSK so ask around.  Patience, Persistence and Perseverance has alway been my motto. 

You're beginning to transition from the shock phase to full survivor mode.  Do whatever it takes to lift your mood.  Nothing is too silly. Diana Lindsay calls it "The Joy Protocol".  Endorphins lift you mood however there is some evidence that it prevents cancer cells from proliferating.  Works for me.  I'm spending money on things I would have never considered (like massage and acupuncture) before because I was always too busy working, saving for retirement.  I think facials are next. Every day I plan something fun to do.  

There are many long term EGFR survivors out there.  Keep us posted.  

Michelle 

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Hey Joe,

The specialists at MSK are very good.  I know of several who have done trials and received great benefit from them.  I also understand the need for anonymity.  If you'd like to connect with a peer mentor (completely confidential) don't hesitate to contact me.  Also our lung cancer helpline can answer any questions you may have about financial assistance and in person professional help.  844-360-5864
The best advice I can give is to keep posting and keep asking questions.  This is the best place to be.

I look forward to getting to know you -

KatieB

 

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