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1st scan results, good and bad, need advise


Angelco3

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I am stage 4 nsclc adencarcinoma, only mutation MEK (non useful at this time) diagnosed 9-6-18 when I broke my right femur. LC was an incidental finding on pre sure X-ray, I was and still am non symptomatic. Started chemo in Oct., Keytruda, Alitma, carboplatin, have had 4 infusions. Pet scan done Friday 1/4/18, got results yesterday before chemo, doc said he had good news and nd bad news. Good news and bad news.

The tumors and nodes in lungs somewhat shrunk but now there are new areas in the lungs/nodes that are small but lighting up. There are several areas in my right leg femur bone and in 2 vertebrae that lit up and are suspicious for cancer. That is the leg I broke and has the pin and rod. There are 2 ways to look at it, that these are areas that the cancer has spread to or they were there all the time and now that the keytruda is attacking. I’m not happy about it, was so hoping for shrinkage and would have been happy with no progression. The oncologist said this is a very atypical cancer. He is talking with the group in Denver, the “big dogs” in lung cancer. The plan is to do 2 more rounds of chemo (alitma, carbo and keytruda), today and in 3 weeks and do another pet scan. I guess they stick with the PET scan to compare the before treatment PETscans. I have to go get another brain mri to see if the cancer has gone there. 

Needless to say I am very worried that the cancer is now spreading and will grow in the next 6 weeks despite continuing chemo cocktail. Just wondering if anyone has any similar experiences? Thank you much, bless, Anne

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Ann,

Welcome here.

Might there be three possibilities concerning the leg you broke.  The PET result could be inflammation from the surgical healing.

Many here report puzzling responses to scans after immunotherapy treatment, especially during the mid-treatment scan.  So I am hoping your next scans shows much better results.

I'm sure forum members who have your treatment will report their results in future responses.

Stay the course.

Tom

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Hello Anne,

It’s nice to meet you.  Of course you are worried. I understand that completely.  One of my LC pals was shocked when she learned about her diagnosis following a broken arm from a very minor car accident.  She’s on Keytruda & doing well today. 

In reading your post the best news here is that your onc is willing to consult with the big dogs in Denver.  There are some top LC experts in Denver knee deep in cutting edge research.  Real out of the box thinkers. You might want to check out The Lung Cancer Living Room on the Bonnie J Addario Foundation website.  There were a few of the Denver LC docs featured as guests.  

Its the creative docs that are willing to go above and beyond that will help advance the science.  Sounds like an awesome doc to have as your team captain.  Have faith in your doc & God will guide you. You’ve just joined the country’s largest prayer posse.  So we’re all here together. 

Michelle  

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Anne,

I'm sorry to hear about your lung cancer diagnosis and your broken femur - what an ordeal to have to go thru!

Are the mets in your leg bone and vertebrae new since beginning treatment?  I am assuming your most recent PET scan is a follow up to a more recent one that served as a base line????

My mom received 6 sessions of carbo+alimta+Keytruda for her lung cancer recurrence.  She then continued with Keytruda only for nearly a year.  It worked well for her, she is a great candidate for Keytruda because her PD-L1 level is more than 90%.  She has had no evidence of disease for nearly a year (keep your fingers crossed for her, we are receiving her latest CT results in a few hours).  Like Tom said, weird things can pop up early into treatment with immunotherapy.  PET scans show active areas, that's why our organs light up - they are active.  As Tom said, the "activity" in your leg could be due to the active healing process.  But only time will tell. 

My mom was on the "wait and see" program too, most are.  She had to "wait and see" prior to her initial diagnosis to see if her lung nodules grew and now she is on the "wait and see" between scans to hopefully show that the cancer has not returned.  It's a horrible part of the disease.  But you are in great hands with immunotherapy...it does great things for lots of people!  Give it some time to get to work.  In the meantime, you will continue your regular appointments where (I assume) you will be getting blood tests and report on any side effects or other troubling issues.  They are keeping a close eye on things and will have new plans of attack if/when it's needed.

Take Care, 

Steff

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Thank you all for the replies. I realized I have the wrong year for the PET scan which was 1/4/19. That was my second scan, the first did not show  bone mets and cancer confined to chest nodes and lungs, that was 1 month before I started chemo. This recent scan  (after 3 rounds keytruda, alit, carbo) showed the bone mets. Today my right leg is so painful especially where the pin ends mid thigh and the calf where there has been a hard painful swelling since my femur surgery. I am so hoping Tom is right and this is the keytruda working and that it is not happy about the hardware. Thanks and bless! Anne

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