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Stage IV Lung Cancer , Bone & Liver ALK Mutation 49 yr old


Scooter49

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My husband was diagnosed April 2016 with Stage IV Lung Cancer . Since then it is now in the bone , lymph nodes & liver . This is very scary for us & just need some support . After 10 radiation treatments to the main tumor, He recently started the Chemo pill & we have high hopes for this treatment plan .

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Welcome here.

 

I have high hopes for his treatment also.  Might his type of cancer be adenocarcinoma?  The reason I ask is that there are many members who using oral chemotherapy drugs as targeted treatment for cancer cells that display certain genetic markers.  In your next blog, you might mention the name of the oral drug he is taking and the type of adenocarcinoma he has.  That will inform members who have experience with targeted therapy and they can sign on and report their experience.

 

I was diagnosed in 2004, well before the age of targeted therapy.  Mine was the old fashioned way and it worked for me.  Tell your husband that I'm alive now more than 12 years after diagnosis and if I can live so can he.

 

Stay the course.

 

Tom

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Sorry to hear...  I was just recently diagnosed as well with Stage IV Lung Cancer, which as of now has spread to the bones.  Had a PET Scan last Friday and should find out if it has spread further today.

 

In my short journey, keeping my head up and maintaining a positive attitude (albeit hard) has made all the difference in the world.  Just know there are a lot of people praying for you and your husband to pull through.

 

Marc

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Thank you Tom ... Scott ( my husband) does have the ALK mutation , Adenocarcinoma . He is now in his 2nd week of taking Xalkori , after 1 initial round of IV chemo a month ago. As of this week his is no longer needing any pain meds , and feels pretty good. He is now eating and has gained 8 pds back of the intial 20 pd loss, due to not being able to swollow . His main tumor was making it difficult to even drink water. I pray he continues to feel good & it just keeps getting better .

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Scooter,

Great news on weight gain and pain reduction.

Understand how tumors can effect the esophagus and make swallowing hard. Have they suggested stereotactic radiation (CyberKnife) to shrink the tumor. Sometimes this is possible but tumors in this location are also close to the heart and major blood vessels. Still it may be worth asking about.

Keep us posted.

Stay the course.

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My oncologist has sent my biopsy for testing.  I am a little disappointed as to how long its taking to get answers back.  How long did it take to get your mutation results back?

 

I had a PET scan on Friday.  I would say the results were good.  The cancer is still in my lungs, pelvic/femur bones and has jumped into lymph nodes around the lungs.  However, everything is very small and has not moved to any other organ.  I am hoping we can get moving on some meds very soon in hopes it can knock some of this small stuff out.

 

Also, I have changed my eating habits dramatically.  I've gone to mostly fruits and vegetables, with some chicken and fish.  I've also increased supplements focused on immune system.

 

Marc

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Tom .. Scott started with 10 rounds of radiation , before starting chemo . He says he can feel that it must have shrunk , because his eating is so much better . Is the radiation your talking about different ? We have never heard of it ?

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Marc .. The biopsy results did take a long time , around 3 weeks . Yours sounds very similar to Scotts Cancer . The waiting game is difficult . Just know that although it may take some time , the results can make a world of difference as to how this is treated . We pray that your results come soon . Stay strong friend . Thinking of you everyday .

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Scooter,

 

Yes, the radiation I'm talking about is different.  Believe Scott started with conventional radiation.  This is very effective and powerful and normally a part of most first line treatment.  Here is a reference that describes the different types of radiation used to treat cancer - https://www.lungevity.org/about-lung-cancer/lung-cancer-101/treatment-options/radiation-therapy

 

I had two types: Standard External Beam Radiation Therapy as part of my first line treatment, and Stereotactic Body Radiation Therapy as part of my fourth line treatment.  Another name for Stereotactic Body Radiation Therapy is CyberKnife.  Sometimes, I hear it is used to address tumors that are in hard to reach locations, or in those tumors that are causing difficulty for breathing or eating.

 

Give the reference a look and discuss it with Scott's doctor during his next consultation.

 

Stay the course.

 

Tom

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Marc, it took about 2 weeks to get my genetic test back. It was closer to a month from the time of diagnosis to the time treatment began. Cancer is not considered an emergency except to the person diagnosed with it :) Work on your patience because it is going to be a waiting game for sure. Waiting on appointments, waiting on test and scans, waiting on results waiting, waiting, waiting. Praying for you

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Scooter49, I was diagnosed nearly 15 months ago with stage 4 metastatic adenocarcinoma that tested positive for the ALK mutation. I was immediately started on an oral targeted therapy drug Xalkori (crizotinib). I had some minor side effects in the beginning such as visual disturbances and diarrhea but those have now resolved and other than taking 2 pills a day I would not even know I have cancer.  Although I can't say I am "cured" I am stable and there has been no progression. I have gotten my energy back after several months of feeling very run down, which is to be expected from what we have gone through, I am still working, traveling enjoying my family and friends and doing all the things I did before my diagnosis. I am praying for great results for your husband on his therapy.

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