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Found 4 results

  1. I had a small lesion removed from my upper right lobe in May 2012. It was an adenocarcinoma, Stage 1a, so I considered myself super lucky. Surgical cure, no radiation or chemo. I have had CTs every year to look for any recurrence or other issues. All was well until my scan on 11/12 - my pulmonologist emailed me that there is a new 'focal area of concern' to watch. This spot has doubled in size in the past year. Coincidental to doubling my methotrexate dosage. I have RA and take methotrexate and a biologic, Simponi. 7 years ago when the first lesion was discovered the doctors advised to stop both of those meds which left me with prednisone only. I have an appointment with oncology on Monday, 12/31 to discuss this new development, my medications, and plans to evaluate this new focal area. I am pretending to be so optimistic around my friends and family, but inside I just know it is a recurrence. I need some realistic support and answers - which I hope I can get soon. Thanks for having this support system.
  2. Hi all, I've been a member for a few months but haven't done a "full" post about my mom as I felt I would jinx the possibility of good news (desperate times call for desperate measures!) I want to write this post to share my mom's journey and possibly relieve someone else's anxiety, while gaining hope and info from all of you. So, here's her story: Overall health: 63 years old, obese, diabetes controlled with diet, sleep apnea, rheumatoid arthritis November 2015 - initial lung cancer diagnosis - NSCLC, stage IIIA. She had shortness of breath which lead to the discovery of a few small nodules. January 2016 - upper right lobe removal - we had to wait so long because my mom has Rheumatoid Arthritis and the meds she was taking at the time had to be out of her system. Surgeon found a few lymph nodes that were involved as well, unable to remove it all. She recovered from surgery quite well. She continues to have pain at the incision site, which we are told is normal. Overall breathing was better than it had been in years (she had a lot of emphysema in the lobe that was removed). February 2016 - 6 weeks of weekly chemo (can't remember which kind) and daily radiation - lost hair, pretty bad acid reflux which became controlled with meds. Some fatigue. Scans & more scans - she received the 1 year "all clear" in April 2017. We thought everything was going well. My mom's pulmonary specialist left, so she met with a newly established specialist. He was looking over her old scans because she was having trouble breathing. He suggested he scope her bronchi and he saw a concerning area he wanted to biopsy. Long story short, she has cancer on the back of her trachea that is hard to see in chest x-rays and CT's. We are thankful someone actually saw it, but frustrated it wasn't found sooner. They are calling it a recurrence, but several doctors aren't convinced it wasn't there the whole time and just did not respond to treatment. Possibility of repeat radiation??? This was an important question I wanted answered because I had seen differing answers during my research. About half of the new mass on her trachea is in the original radiation area. The radiologist says that he can do radiation again in the same area since enough of it is out of the original radiation zone but the likelihood of having severe side effects is very high. I asked about radiation seeds and internal vs. external beam therapy - he said they can all have the same result of increased side effects. He is one who believes the mass was there the whole time and did not respond to treatment in the first place. So he suggested radiation as a last resort if other treatments did not work. July 2017 - trachea stent put in to open airway (mass had airway closed 70%). Surgery was a breeze, she can breathe well. Mom was in and out of hospital after surgery with severe mucus build up. Still has mucus build up. July 2017 - Treatment plan - 8 rounds of Keytruda (she has the PD-L1 mutation), the first 4 with chemo - alimta carboplatin, every 3 weeks. New treatment info: Adding chemo to the Keytruda at the beginning of treatment is having better results than Keytruda alone. This information was released in June 2017 at a national cancer conference. It supposedly brings the effectiveness from 30-50% up to a flat 55%. We will take every small piece of help we can get!!! CT scan will be after the first 4 treatments to see how things are going. Keytruda and Rheumatoid Arthritis: her oncologist is unsure how her RA will react. Her RA has never been under control, so she deals with a lot of pain anyway. They are assuming she will have major flair ups. We will deal with those when they happen. Large doses of steroids and all RA meds can reduce the effectiveness of Keytruda, so we will have to get creative. July and August 2017- My mom is on her 2nd treatment. The biggest side effect is total exhaustion. However, she began her 1st treatment 1 day after spending nearly 3 weeks straight in the hospital. Her oncologist feels that the extreme fatigue is more likely due to recovering from her stent surgery and all of the hospital visits. She still has a lot of mucus and her pulmonary specialist is keeping it "sucked out". She coughs a lot and does not have a voice. We will learn more as we go but so far she's surviving and we feel things will get better with her breathing and fatigue. August 4, 2017 (a day we can (mostly) breathe) - PET scan results show that cancer has not spread (cue happy dance!!). So what now??? We live day by day. I take part in these forums to find support and to give support. After finally receiving the first bit of good news in several months (the cancer had not spread), yesterday was the first day I didn't break down bawling. We are finding our new "normal". She is being silly and laughing more. And in October, we are going to see Jimmy Buffett for the millionth time! I plan to update this post periodically with information that I think is important to share for those looking for information and when I need some advice or a bit of support. I appreciate each and every one of you for your kind words to all that reach out and for fighting to live so we all can have a little more hope at the end of the day.
  3. Last week's scan shows that my mystery nodule has continued to grow. It is now 1.1 cm x 1.9 cm and it has to go. Super Doc says there are two options: SBRT or a pneumonectomy. He looked at my lung function tests from June and says I'm not a good candidate for surgery, which is fine with me. I'd like that to be a last resort because that was not an easy surgery. Next steps are MRI and PET scan to check for any mets. If this is it, we'll get SBRT going quickly. He knows I'm headed to Florida at the end of September and that trip is non-negotiable!
  4. We met with my oncologist yesterday to discuss the recurrence of NSCLC in my right supraclavicular lymph node. The thoracic surgeon who performed my lobectomy agreed to perform this surgery, and I'm scheduled to consult with him on March 9th. The results are back on the tumor testing. It tested positive for ALK. The oncologist talked a bit about the drug crizotinib as a possible future treatment.
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