Newly Diagnosed NSCLC

[Dani121]

I'm a 32 year old mother of 2 who was diagnosed with stage IV NSCLC in March. Non smoker. I tested positive for the ALK mutation. I was pretty healthy other than a cough and some shortness of breath that kept being misdiagnosed as colds, pneumonia, etc. until my pcp finally sent me for a CT scan to rule out a pulmonary embolism (I had one a couple of years ago). They thought it was lymphoma at first until a biopsy came back as adenocarcinoma. A PET scan and MRI revealed a softball size tumor in my right lung, 5 tumors in my brain, multiple tumors in bones and multiple lymph nodes. I immediately was admitted to the hospital where I spent two weeks getting radiation everyday to shrink the large tumor in my lung. Once released we had to wait for the genetic testing to come back to see if I could do any of the target therapies. When it was revealed that I had the ALK mutation I started Xalkori. Not long after I underwent the Gamma Knife procedure to try to shrink the brain tumors. I have a MRI next week to check those results. The last CT scan I had showed I was responding well to the Xalkori, most of the lymph nodes have went down, the bone tumors are almost gone, and between the Xalkori and radiation the tumor in my lung is almost gone. I'm still dealing with some breathing issues due to pleural effusion and consolidation in my right lung as well as ground-glass opacity. But overall considering where I was a couple of months ago I'm doing well. Sorry for the long post, I just don't know anyone who's ever dealt with anything like this and was looking for some support. Thank you! 

[BridgetO]

Hi Dani, Welcome. This is a good place to get support and information. I had an early stage lung cancer, nothing like what you're going through. I'm sure some of the folks on this forum who are stage IV will respond. They're in a better position than I am to be helpful to you, I think.But, in a way, we're all in this together. I wish you all the best.  Hang in there!

Bridget

[FrankS]

Hi Dani!  Wow you've come to the right place.  There is a ton of great support on this site.

Also, I would encourage you to friend me on Facebook (Frank Sierawski in Omaha, NE) and I can get you plugged into the Facebook group for ALK+ patients and caregivers (ALKies Worldwide).  There are over 500 people in this *private* FB group now and it's a really great community for sharing treatment information, bouncing ideas and thoughts off others in similar situations, and just a place to release your cancer frustrations where others won't judge!  Also, there are a fairly large number of folks on this site who are also in their 30's who you'll be able to connect with, which is important as well.

[LaurenH]

Hi, Dani,

Welcome to LCSC. I am sorry it has been a difficult few months, but you have come to a great place to connect with other patients/survivors in similar situations. You are definitely not alone! 

I became involved with LUNGevity after my uncle (now a 5 1/2 year survivor) was diagnosed with Stage IV NSCLC in 2011. He is also ALK-positive with brain mets. Early in his treatment, he underwent chemo, radiation, and  few surgeries. He started taking Xalkori shortly after it was approved by the FDA, with very positive results. About a year ago, he switched to Alcensa and he's doing well on that targeted therapy.

I will reach out to some of our other members who have ALK and encourage them to respond in this thread. In the meantime, please feel free to explore the discussion boards and blogs. If you have any specific questions, feel free to post them, or let me know if you'd like more information/resources about a particular topic.

We are here for you!

Lauren
--
Digital Community Manager
LUNGevity Foundation

[Tom Galli]

Dani,

You've already been through the mill and Frank's advice for plugging into the ALK Facebook group is a good path for you. 

For most of my 13 years surviving my late stage diagnosis almost nothing in the form of new treatments or procedures emerged. Now fortunately some adnocarcinoma survivors are benefiting from newly discovered targeted treatment. Indeed, new advances arrive almost daily. 

Our organization - LUNGevity - is a big player for targeted therapy R & D among non profits and is unparalleled in survivor support activities. 

Do take advantage of information available on Lungevity.org in the Lung Cancer 101 section and join us at a regional and national survivors summit. And of course, if you have questions, this would be the place to ask. 

Stay the course. 

Tom

[JanWilson]

Hi Frank - Are ROS1 folks and caregivers on the ALK Facebook as well? My mother will start on Xalkori in about a week's time for that mutation and I would love to hear more about people's experiences (she's 80, stage IV, not mets so far, both lungs and lymph nodes) and the drug's ultimate cost even when it's in your insurance company's formulary (she's BC/BS federal program). I'm going to reach out on FB. 

[Dani121]

Thank you everyone!  I will definitely look into the Facebook group as well as the other threads. It's all a little overwhelming and it's good to know there is other people out there dealing with the same thing.  

[FrankS]

Hi Jan,

There is a group called ROS1 Positive (ROS1+) Cancer on Facebook that is also a closed/private group that you should join.  Looks like there's over 150 members there!

Good luck...

Frank

[corinnecasebeer]

I am so sorry to hear about your diagnosis. I'm glad you found Lungevity - I didn't find this resource for years! I too was diagnosed at 32, but they thought I was Stage 1 so I had surgery. A year later I was Stage IV, with brain mets.

I highly recommend that you look into get off Xalkori and get on Certinib or Alectinib, since Xalkori doesn't protect the brain and these newer drugs do. I believe (but am not 100%) that if you have brain mets insurance will cover the new ones as a "first line therapy."

Please join us over at ALKies Worldwide FB group! There are many people in your same position who can tell you what their experience was. Hang in there. 

 

Cori