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Sue1147

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Sue1147 last won the day on February 8 2017

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    KENTUCKY
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  1. My daughter was diagnosed jan.24! I have run the whole range of emotion in just these 3 weeks! She is only 38 and I was terrified, angry, begging, hysterical and a lot of other things! I have leaned heavily on my faith and the knowledge I am gaining on this terrible disease. I have done most of my meltdowns with my husband, friends and alone! But she and I have also had some crying time together! I think you have to let it out! Right now she is doing ok! We have just started radiation, waiting to go on one of the new drugs! Thank God her doctors are optimistic that medical advances are on her side! You are in my prayers and we are here for you!
  2. Update on my daughter! Tuesday the 14th. She was having shortness of breath and loud wheeze! We went to the oncologist office! They ruled out blood clots with ct. They admitted her to the hospital and put her on nebulizer treatments and iv steroids! She improved quickly! Yesterday they did the stereotactic radiation on her brain! She was discharged from the hospital! They have decided she probably had a mucous plug in the bronchial tube where the tumor is located! Today she had 2 radiation treatments on her lung! This will hopefully help shrink the tumor back and relieve some of the narrowing in that tube! She will have 1 radiation treatment a day for the next 3 weeks! She will then start the drug xalkori! This drug shows great progress in patients with the ALK gene mutation! She has the ALK and the PDL1 gene mutation! So there are options on the horizon for gene therapy! Thank you and I 'll update!
  3. We went to radiologist today! He was great ! My daughter loved him! He went over the pet scan and mri with is! He gave full easy to understand explanations and we felt very confident and informed! We go back on Wed. Feb.15 for preliminary work for treatment! He is going to be very aggressive and that was music to my ears! Will update! Thanks for all the comments!
  4. Update! We saw neurologist! He said lesion is so small, he thinks stereotactic radiation should take care of the lesion! We have appt. with radiologist on Monday! Oncologist told us our daughter tested with 2 of the gene markers! PDL1 and alk! She is going to start on the new drug xalkori as soon as brain lesion is radiated! She was very hopeful with this gene therapy! Working with insurance to see how much the drug will be! Praying and believing it will work out for her to take the drug!! Any input will be appreciated!!
  5. My 38 yrs old daughter was just diagnosed 3 weeks ago with stage 111b adenocarcinoma! A week later they found a very small Met in her brain! We go to have that radiated on Monday! Gene study just came back and she has the ARK and the PDL1! After the brain rad she will be starting Crizotinib! On researching this, I was wandering hue expensive this drug is and how good insurance pays for this! This has given us hope and we are anxious to start this! Any insight anyone can give me will be greatly appreciated! So excited about your news!!
  6. My 38 yrs old daughter was diagnosed with stage 3B NSCLC in mid. January! She also has a very small Mets in her brain! Today we found out that she tests positive for 2 of the gene markers! The plan of treatment her doctor recommended is stereotypical radiation for the brain Mets! Then to start treatment with Opdiva! One tablet a day with close monitoring! She is otherwise healthy! She has no outer symptoms! What are your opinions for using this drug as a first line treatment instead of chemo? We are excited about this and pray this is the right approach!
  7. Thanks for the response and the personal experiences! We see neurologist Thurs. Morning and then oncologist that same afternoon! It has only been 2 wks since her diagnoses and it seems like a year! As a mother, I want action! I love you all and thanks again! I will update and count on you all for support.
  8. Thanks! I will continue to post updates on treatments! Sooner the better! I look forward for comments and knowledge of others that have or are going through this!
  9. Sue1147 Just signed up for this group! My 38 yrs old daughter has just been diagnosed with 3b adenocarcinoma! Today she had a mri to rule out brain lesion before starting her treatment next week! Mri showed very small lesion on her brain! Now we back up and reassess treatment options! I am terrified! This is my child! I am in a place I want something done now!! How do I be a brave face for her when I am a basket case! Any input will be appreciated!
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