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  1. 2 points
    KatieB

    Your Voice Matters- pls help

    We need to hear from you!! “Are you worried about your lung cancer treatment and participating in clinical trials during #COVID19? If you live in the United States, please share your concerns with us so we can start to address them.” https://www.surveymonkey.com/r/COVID19_LC_treatment_clinical_trials
  2. 1 point
    MyWifeSCLC

    Small Cell Diagnosis

    Hi Diane ... I had already looked at some Extended-stage SCLC info trying to see if any might be have bearing on stage IIIB for my wife. NCCN Guidelines Version 3.2020: ES-SCLC 1st-line - Cisplatin/Carboplatin + Etoposide + Atezolizumab (Tecentriq), followed by maintenance Tecentriq 2nd-line & beyond: Refractory/resistant (<3mos) - Topotecan (FDA approved) or clinical trial; other - Nivolumab (Opdivo) w or w/o Ipilimumab (Yervoy); Pembrolizumab (Keytruda); Paclitaxel; Docetaxel; Irinotecan; others. Note: If maintenance on other immunotherapy (Tecentriq), can't use Opdivo, Yervoy, Keytruda. Sensitive (>3mos) - Topotecan or clinical trial Sensitive (>6mos) - Cisplatin/Carboplatin + Etoposide only NCCN discussion: Patients w/ progressive disease (PD) while on 1st-line treatment w/ Tecentriq should not be treated with additional immune checkpoint inhibitors. Patients w/ sensitive relapse - Cisplatin/Carboplatin + Etoposide + Irinotecan improved survival over vs Topotecan but NCCN recommends against it due to toxicity profile. Literature: Topotecan for Relapse Small-cell Lung Cancer: Systematic Review and Meta-Analysis of 1347 Patients [Scientific Reports 5:15437 DOI: 10.1038/srep15437 October 21, 2015 Conclusion - Topotecan provided a promising outcome for patients w/ sensitive relapse and poor outcome for patients w/ refractory relapse. Refractory - 6mos [email protected]%; 1yr [email protected]%; [email protected]%; [email protected]% ([email protected]%, [email protected]%, [email protected]%), [email protected]% Sensitive - 6mos [email protected]%; 1yr [email protected]%; [email protected]%; [email protected]% ([email protected]%, [email protected]%, [email protected]%), [email protected]% Treatment Options for Relapsed Small-Cell Lung Cancer: What Progress Have We Made [American Society of Clinical Oncology, Volume 14/Issue 6/June 2018 "For patients who relapse in < 6 months, we favor single-agent chemotherapy with either topotecan.... or paclitaxel. However, the response rate for topotecan in patients with chemo refractory disease is only approximately 10%, so.... we favor paclitaxel... with response rates of up to 29%. Overall Survival (OS): Total proportion of patients who are alive after a period of time. Disease Control Rate (DCR): Total proportion of patients that demonstrate a response. It is the sum of complete response (CR), partial response (PR) and stable disease (SD). Progressive disease (PD) is not part of DCR. Topotecan Symptoms: Emergency help needed - hives, difficulty breathing, swelling of face, lips, tongue or throat. Call Dr. at once - fever, chills, body aches or flu-like symptoms; pale skin, easy bruising or bleeding; unusual weakness; white patches or sores inside mouth or lips; skin changes or severe irritation where needle is placed. Less serious - bruising or swelling at injection site; tired feeling; headache, body pain, muscular or joint pain; mild skin rash ; loss of appetite; nausea, vomiting, constipation or stomach pain; tempory hair loss. It looks like 1st-line treatment for ES-SCLC hurts the use of further immunotherapy which is different for LS-SCLC in that immunotherapy is not used in 1st-line treatment. I couldn't find any literature to refute this. However, > 3mos but < 6mos (sensitive) appears to have some alternatives to topotecan. If healthy or "up to it", there is adding irinotecan to CE. Also, I would prefer paclitaxel over topotecan for < 3mos relapse and maybe < 6mos relapse. Note that a clinical trial for Lurbinectedin is available (I think) for 2nd-line treatment of ES-SCLC patients. You might see if this might work. I have not been a fan of topotecan but there are more options w/ LS-SCLC than ES-SCLC. I hope this info helps in some small way. I'm pulling for you guys. Steve
  3. 1 point
    D iane

    Small Cell Diagnosis

    I've updated my signature with the results. I read it last night. He definitely has some stuff going on. After his last treatment I think we knew something was up as he had almost ZERO pain. The prior cycles he experienced a lot of pelvic area pain which I am now thinking was disease dying. No pain may have meant nothing was being killed! It's hard to differentiate between the two. Now, he does have some pain in his right side, but not enough that he's eating pain pills. Just Advil or Tylenol. Must remain hopeful that this next chemo will let him live a few more months. He is still really strong, and one never knows.
  4. 1 point
    Tom Galli

    Newly Diagnosed

    Mary Ann, I'm so very sorry to learn of your diagnosis. I underwent the same procedure to check lymph nodes before my right lung was removed. I don't want to say I'm fortunate to have had my right lung removed but am grateful considering the circumstances. The surgery to check lymph nodes will likely involve a small incision at the base of the throat. From there, doctors will use a flexible scope to look at and sample lymph nodes. I was completely recovered from this minor surgery in a matter of days. The lobe removal and wedge resection is a bit more complicated, and we'll explain those to you after we learn of the lymph node results. Please ensure (insist) that biopsy samples are sent for laboratory analysis to determine suitability for targeted therapy or immunotherapy. This type of test is called biomarker testing and it is very important to have these results. We've been there and experienced almost every form and type of lung cancer treatment. We'll answer your questions and help you every step of the way. Here are some thoughts I recorded years ago that might be helpful information. Stay the course. Tom
  5. 1 point
    How was everyone's weekend? Is everyone doing okay getting groceries and household items? We have been switching between Shipt and Instacart but it seems our town is officially out of toilet paper and paper towels.
  6. 1 point
    BridgetO

    Wife Diagnosed w/ LS-SCLC stage 3

    Hey Steve, Good your wife is getting a second opinion! And don't get too hung up on "not encouraging" . Prior to having lung cancer, I had an unrelated cancer with a "dire prognosis" (my medical onc's words). I got a second opinion from a doctor at a Comprehensive Cancer Center, who was great. My med onc agreed to follow the second opinion doctor's recommendation, which was for additional chemo. And here I am today, 8 years later, NED. Hang in there. There is hope, Bridget O
  7. 1 point
    For me, it's helpful to think of "good choices" rather than "the correct choice". I think that most situations there are a range of good choices (and admittedly some not-so-good ones.) That perspective keeps me from stewing too much over decisions or indulging in a lot or regret afterwards, We do what we can with the information and resources we have at the time.
  8. 0 points
    MyWifeSCLC

    Wife Diagnosed w/ LS-SCLC stage 3

    Update: I didnt realize that my wife's onc prescribed home care. A nutritionist and a physical therapist called us. I recall her onc saying she needs to eat better and needs to get more exercise but neither if us recall home health care being mentioned. Just another miscommunication in a long line. We decided that the nutritionist didnt need to come but could give information to us over the phone. We meet with the PT on Monday morning and she can go over what us needed and shouldn't have to come back. I will admit being surprised and deeply worried that her onc is beginning his preparation for bad news because of the words home care. Its probably not that as there are still options on the table. Steve
  9. 0 points
    D iane

    Small Cell Diagnosis

    We are onto 2nd line treatment with topotecan. I don't have the CT scan reports yet, but mass in right helium is larger and liver lesions are larger and there is more of them. Blood work next week and a tele visit with the MO is set up the following day. If labs are good and insurance gets authorized he will start the 20th. It's a 30 min. infusion for 5 days every 3 weeks. More pictures if he manages 2 cycles of this. I do not see anything on this in the Chemo section, nor does anything come up using search?! If anyone has any input on this please chime in. So far I am only able to find a study from 2005 listing a 57% overall survival of 6 months and 27% for 1 yr. There is a current study (Phase II) going on comparing Topotecan to Keytruda. I wonder if there is a 3rd line treatment? Not good news, but there isn't much ever with this particular type of lung cancer. He is very quiet. Waiting to read the scans when they come, we are at least grateful they didn't mention anything "new" showing up. Also think this would be considered re-factory and not a relapse since it's within 6 months? Trying to understand that terminology as well. /Sigh
  10. 0 points
    just me

    Small Cell Diagnosis

    My husband also was diagnosed this week with small cell, extensive. It is very scary. He seems to be declining so fast. We are wondering if he will survive treatment. There is comfort knowing others have made it through. update April 10th,, 4 rounds carboplatin, etoposide and tecentriq, showed a good amount of shrinkage. The plan was to continue with just the immunotherapy which did not work. Beginning a new second line of chemo.
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