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KathieF

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  • City
    Mechancisville
  • US State (if applicable)
    VIRGINIA
  • Country
    USA
  • Gender
    Female
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    Not a patient

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  1. KathieF

    MyHubsSCLC

    Scott has an infusion every three weeks with atezolizumab (Tecentriq). He was originally on Etoposide/Carboplatin and little to no side effects! I hope it does well for you too. I’m sorry to hear about the shortness of breath. I’m sure the fires only add to the stress of all that is going on for you. My understanding is Small Cell Lung Cancer is also a neuroendocrine tumor. I wonder if it is mixed SCLC & NSCLC. Either way - Yes! On to treatment to get the nasty thing gone 💥 He was on the fence about the shots and booster but I feel a little safer as a daughter works around a lot of people and don’t want to risk a cold, never mind covid…..funny thing is, our Onc never even brought up the vaccine in any of our talks!
  2. KathieF

    MyHubsSCLC

    Thanks Dona! Scott is doing well on Immunotherapy every three weeks. His next scan will be Sept 20th. Praying for continued results! He also did get Moderna’s booster shot which seemed to have more effects than the first two shots. I’m hoping that means he has now mounted a better immune response to the vaccine. Have you been able to start treatment? How are you feeling?
  3. I’m so sorry Dona. Getting information, and very scary information at that and then still not knowing…. I pray you are able to get a definitive answer soon and onto treatment. Has the inhaler worked for you? My husband tried albuterol but it didn’t seem to help him very much. He is also trying Flonase for some possible allergy congestion. He just had his Immunotherapy treatment (Tecentriq) on Wednesday and is feeling good. This was the first time he got a call about his blood work after treatment though. His potassium is low so they prescribed a supplement for the next 10 days. We also found out his TSH # has been steadily going down at each treatment for the last few months (unknown to us - it came across from lab work sent separately!) I had read something on this forum about Immunotherapy having that effect on Thyroid. I will have to research more. Please keep us updated on how your tests go next week. Will be thinking of you!
  4. Hi Dona, How did your visit go? My understanding is that SCLC is a neuroendicrine tumor as it secretes hormones.
  5. KathieF

    MyHubsSCLC

    Hi Dona, I believe when we first got the results of biopsy we met with the Pulmonologist first and then the oncologist separately the next day, but his are in different buildings. Once they get results I’m sure they will get you in to start treatments within the next week. I totally understand wanting to get started! Waiting is the difficult part. All his infusions were done in the Cancer Center, outpatient. The first day we would meet with the oncologist, he would get blood work and all 3 drugs were infused so it was the longest day (about 4 hours). The next 2 days the infusions went much faster and we would only be there about 2 hours. He felt fine afterwards and would walk around the parking lot for exercise. I think both of our state of minds have been a roller coaster. I am the talker, planner, research gatherer and he keeps everything in, but that’s always been us. In between treatments what he really enjoyed doing was planning our next camping adventure! He started a YouTube channel “Truck Camping Living Life” and has been teaching himself how to upload and splice together some of our trips. Unfortunately we had to cancel the last one as our weather is getting too unbearable with the heat and humidity and it affects his breathing. On my recent visit to GP, she discussed the joy of turning 50. She did suggest LC screening along with the magic colonoscopy year and of course add menopause to the mix…ha!
  6. KathieF

    MyHubsSCLC

    Dona, Absolutely! From what I have seen, SCLC is more rare and it’s hard to find people who have gone through the experience. When we first learned about it and didn’t know the difference, our pulmonologist said its like naming one of your kids Bob and the other Not-Bob. The waiting is VERY hard. The treatment is pretty much standard of Carboplatin/Etoposide plus immunity. I would think your oncologist would start you pretty quickly. We kept waiting for the dreaded side effects but with the medications that they gave in the infusion, he didn’t get any nausea at all. We had filled all the prescriptions they had written and he never needed one of them! How are you feeling? Scott had pretty severe pain in his neck/shoulder that we still are not sure if it was related but the fact that it went away completely after one round of chemo makes me think it was. I am glad to hear you are getting treatment at one of the top cancer centers. Yes, let’s definitely compare notes and we can help each other through this!
  7. Hi Dona, My husband has ES-SCLC and I posted my first introductory post yesterday (HubsSCLC) in this folder that gives details of where we’ve been so far. He also had an EBUS bronchoscopy and they did a biomarker test at that time also. I know the early days are extremely hard trying to research everything.
  8. KathieF

    MyHubsSCLC

    I’ve been scouring these forums and others for a few weeks and decided I should start posting while we are in an ok place. My husband lost his voice around the end of January 2021 and this journey of SCLC began. We were both heavy smokers. Quit in 2010 and practiced vaping. DR - mid Feb - if voice is not back in 2 weeks, see ENT ENT - Scope in office - Left Vocal Cord is paralyzed - why? Sent for CT Scan 3/1/21 CT Scan - referred to Oncologist Medial Left upper lobe mass 4.9 cm x 3.6cm x 5.7 cm Left Hilar 2.1 cm x 1.7 cm gastrohepatic/porta 4.3 cm x 3.7 cm, 5.1 cm x 4.1 cm x 5.1 cm myleolipoma 3/17/21 Bronchoscopy and EBUS - Left upper Lobe Mass Small Cell Carcinoma; Hilar Lymph Node Small Cell Carcinoma, Foundation One Biomarker testing done 4/1/21 Started Treatment: Etoposide, Carboplatin, Atezolizumab every 3 weeks for 3 days max 4 rounds (ended chemo on 6/4/21) Continue on Immunotherapy Atezolizumab only 6/23/21 every 3 weeks. ALL blood work has been fine! No significant side effects! Hiccups in beginning of Round 1 & 2 with complete hair loss. Peach fuzz growing back and mustache back in full shortly after chemo ended. 4/13/21 PET Scan: Medial Left Upper Lobe 4..5 cm x 3.5 cm in PET SUV 12.4; Left Hilar Lymph Node SUV of 6.7; Lymph nodes on liver and midline liver and right Adrenal 6 cm x 4.5 SUV 16 cm Brain: Clear 6/21/21 PET Scan: Prevascular Mass 1.8cm x 3.2cm SUV 15.8; Left Hilar Lymph Node decreased in size, SUV 5.8; right adrenal gland mass 4.6cm x3.8cm likely myelolipoma; Lymphadenopathy in gastrohepatic & porta hepatic region 4.4 cm x 5 cm SUV 27 Brain: Clear Foundation One results: Small Cell Undifferentiated Carcinoma MS-Stable, TMB 11 Muts/Mb; PIK3CA; KEAP1; MYC; RPTOR; TET2; TP53
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