Joining the club we never wanted to join | 36 y.o. stage IV EGFR+ adeno

[Pascal]

Here I am:

A happily married father of 2 kids (4 yo boy and 5 yo girl) in my mid 30ies. Perfect life, wife & career type of guy. Non-smoker, fitter than most people in my age group.

Introducing myself to the club no one ever wanted to join. 

It all started 8 weeks ago: after a 15mile run on the weekend, a cough appeared. And never left. Exercise astma? Bronchitis? Pneumonia? Tuberculosis? I wish... Diagnosis: Stage IV adenocarcinoma (7x8x9cm), with metastasis to brain, bone, pleura and potentially liver.

Totally out of nowhere.

Even in retrospect, no prior warning signs. No lifestyle indications. Zero cancer cases in my family. Bad luck in the lottery of life. 

I'm now eagerly awaiting therapy to start. Likely a combo of Tagrisso (Osi) + Radio for the bone metastases. The small silver lining after all the bad news: I'm EGFR positive with an exotic mutation (Exon 25 rearrangement), and have PD-L1>50%. 

My mood is upbeat.

I'm not in denial. Quite the opposite: I've ignored all the great advice to ignore Dr Google and read every single paper I could find on NSCLC and EGFR+. Conclusion: If I could, I'd obviously take that Tuberculosis back docs initially suspected. But since this ain't an option, I decided to feel lucky it's 2021. We're not at the cure yet. But long-term survival is a realistic outcome. I'm discovering amazing support networks like this forum. Even if I can't control the outcome, I will make damn sure I that show up in my best physical and mental state. 

Obviously there are lows.

I randomly cracked up in tears whilst playing with my kids on the playground today (wrong thoughts at the wrong moment... god bless my Covid-masks I could hide behind...). I feel guilt towards my wife: the extra weight she has to pull, the dreams she won't be able to pursue whilst we take up this fight. Struggle with the sudden loss of control over my life. Struggle how to communicate about it - privately, as well as a in business context.  

Stories of fellow patients & survivors slowly help me put things into perspective. And give me confidence that there is a life after the diagnosis. 

Which is why I'm looking forward to join & make my own contribution as I engage on this journey... 

[Beth 4891]

Hello Pascal. I would say welcome to this group but lets be honest you would rather be almost anywhere than here. Like you I had virtually no symptoms but unlike you are am older and not fit. Walking 15 miles would have been beyond me let alone running. But we share a determination to stay alive. If some people can still be alive 15 to 20 years after a stage 4 diagnosis why not us. Plus people are always saying new developments are happening all the time, good because they may be the ones for me. I was told I was stage 4 in January 2020. Since then I have had some radio therapy, targeted therapy and immunotherapy but disappointingly none lasted very long and I am now on chemotherapy. Fingers crossed. I hate this diagnosis, really hate it but I will fight. 

Another group similar to this one you might be interested in is health unlocked

Good luck with your fight Pascal and my very best wishes to you.    

[Tom Galli]

Pascal,

Welcome here and we look forward to your treatment arresting your lung cancer and to the contribution of your treatment success story encouraging future new members.

Unfortunately, as you've discovered, lung cancer is often a late discovery. More unfortunately is the increase in the number of people diagnosed with advanced stage lung cancer without a smoking history. The mantra is true--only lungs are necessary to acquire lung cancer.

I note you are from Switzerland and that your diagnostics and treatment mirror that performed in the US. Here is some information about targeted therapy and its use to treat adenocarcinoma with EGFR driver mutations. I think you'll find radiation is a very effect way of dealing with bone metastasis.

As you mentioned, there are lows coping with the disease. We all experience them. However, new therapies such as yours are changing outcomes and there is every reason to believe you will be among the population that is soon reporting NED (no evidence of disease).

Stay the course.

Tom

[Judy M2]

Hi Pascal, sorry you are going through this. Believe me, you are not alone. There are many young parents like yourself who are hit with this diagnosis out of nowhere. 

You seem to have a good attitude, and that's almost half the battle. I am also EGFR+ but Exon 19. Garden variety. I was diagnosed at Stage IIIB two years ago, went through chemo and radiation and then started Tagrisso in March 2020. I hit the NED jackpot in April of this year and am healthy once again. I do everything I used to do. 

If you do Facebook, here are a few private groups you might find helpful. They're really the only reason I remain on FB. 

Tagrisso (osimertinib) Patients & Caregivers Group 

LUNGevity EGFR Group 

LUNGevity EGFR Resisters Lung Cancer Patient Group 

LUNGevity Targeted Therapies Group

We have members from all over the world. Glad you joined this forum, it's the best place for information and support. 

[Pascal]

18 hours ago, Beth 4891 said:

Hello Pascal. I would say welcome to this group but lets be honest you would rather be almost anywhere than here. Like you I had virtually no symptoms but unlike you are am older and not fit. Walking 15 miles would have been beyond me let alone running. But we share a determination to stay alive. If some people can still be alive 15 to 20 years after a stage 4 diagnosis why not us. Plus people are always saying new developments are happening all the time, good because they may be the ones for me. I was told I was stage 4 in January 2020. Since then I have had some radio therapy, targeted therapy and immunotherapy but disappointingly none lasted very long and I am now on chemotherapy. Fingers crossed. I hate this diagnosis, really hate it but I will fight. 

Another group similar to this one you might be interested in is health unlocked

Good luck with your fight Pascal and my very best wishes to you.    

Thanks so much for your words of support. 

I love to read your fighting spirit and send you my best wishes ! 

[Pascal]

17 hours ago, Judy M2 said:

Hi Pascal, sorry you are going through this. Believe me, you are not alone. There are many young parents like yourself who are hit with this diagnosis out of nowhere. 

You seem to have a good attitude, and that's almost half the battle. I am also EGFR+ but Exon 19. Garden variety. I was diagnosed at Stage IIIB two years ago, went through chemo and radiation and then started Tagrisso in March 2020. I hit the NED jackpot in April of this year and am healthy once again. I do everything I used to do. 

If you do Facebook, here are a few private groups you might find helpful. They're really the only reason I remain on FB. 

Tagrisso (osimertinib) Patients & Caregivers Group 

LUNGevity EGFR Group 

LUNGevity EGFR Resisters Lung Cancer Patient Group 

LUNGevity Targeted Therapies Group

We have members from all over the world. Glad you joined this forum, it's the best place for information and support. 

Thanks so much Judy. The groups you suggested are great, and I love reading about what you call the NED jackpot. 

[Pascal]

18 hours ago, Tom Galli said:

Pascal,

Welcome here and we look forward to your treatment arresting your lung cancer and to the contribution of your treatment success story encouraging future new members.

Unfortunately, as you've discovered, lung cancer is often a late discovery. More unfortunately is the increase in the number of people diagnosed with advanced stage lung cancer without a smoking history. The mantra is true--only lungs are necessary to acquire lung cancer.

I note you are from Switzerland and that your diagnostics and treatment mirror that performed in the US. Here is some information about targeted therapy and its use to treat adenocarcinoma with EGFR driver mutations. I think you'll find radiation is a very effect way of dealing with bone metastasis.

As you mentioned, there are lows coping with the disease. We all experience them. However, new therapies such as yours are changing outcomes and there is every reason to believe you will be among the population that is soon reporting NED (no evidence of disease).

Stay the course.

Tom

 

Thanks for your kind words Tom, and for everything you are doing in here. 

Any place you suggest I share my story? Directly in one of the forums here, separate blog? 

[Tom Galli]

Pascal,

You've got lots of choices about sharing on our Lung Cancer Support Community.

Most start here for an introduction. You've already done that with your initial post but don't feel constrained. You've given us the basics about your diagnosis but could tell us about the diagnostic process (in Switzerland), certainly your medical system would be of interests, and more about yourself and family.

After introduction, you might want to keep us informed about your treatment in this section of the forum. If you have ideas for improving side effects or unique treatment modalities used in the Swiss Medical System, you might want to blog about them here. At Lung Cancer 101 are tips and tricks that may be useful information for you in treatment. Give those of interest a read.

Then we have a place for expressing one's option in the form of a blog. I've organized mine in a collection called Stay the Course--here. Think of this space as your OpEd opportunity to express what you think or feel about lung cancer, treatment and life. Unfortunately, this area is not as well used as the rest of the forum but there is a great deal of wisdom in this collection of writing.

Welcome here. Don't feel constrained about fitting your experience into any category. We'll see what you've written and respond.

Stay the course.

Tom