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  2. Jack, You're running your own "mini trial" I'm interested in hearing how this all works out. Best of all luck my friend. Lou
  3. Lizzy, Glad to hear that you are now on "the treatment trail" as it's the only way to get this thing under control. Others here have had the"gamma knife" therapy and will give you better insight than I can on results, side-effects, etc. But for my part, my fingers and toes are crossed for a good outcome from the chemotherapy. BTW, I'm just starting to learn Fur Elise (a simplified version) so your cartoon was doubly timely. Stay strong and keep in touch here, we love to hear from you. Lou
  4. Today
  5. Hello Again, quick update from me and my neurosurgeon visit on Wednesday. He ordered additional images as he thought there was more to story than was being seen on taken images. He was correct. New CT showed the two MRI identified spots and 5 more. None were candidates for surgical removal due to either their locations, sizes or individual behavior problems, edema, hemmoraghing, etc. He felt whole brain radiation would be too risky to healthy parts, so proposed fractional gamma knife radiation to all 7 sites over 6 to 8 sessions. On Thursday he iradicated 3 small ones in one gamma knife session, and worked on the biggest hemmoraghing one. He said no more until next Wednesday to have rest up and watch the edema etc. But he and oncology agreed chemo is to start Monday (minus Keytruda for now - not sure why, oncologist will be going through that with me on Monday) before Chemo infusion because it was all a bit too much to take in yesterday after the gamma session and being so tired). Also getting tatted and marked up for radiation to the original mass from four weeks ago in the lung on Monday. That treatment will also run concurrent to chemo and gamma. Feeling very tired today but good in spirits. Best medicine so far... my son calling from England at 4am this morning to say he, his wife and my granddaughter are arriving here on Sunday while current travel/testing rules are stilll in effect between UK and USA until Monday. So, for me Christmas is coming early in my home this year through all of the wonderful medical people I am meeting, the efforts of everyone, and my family being here in about 48 hours from now.
  6. It’s 10mg of Claritin per day , not 20. Anyway, so far I haven’t had any problems. In fact I think my urinary issues are resolved!
  7. Yesterday
  8. Today I joined a discussion about how to ensure having life sustaining pills on hand to get one through a travel period. There are ways for getting a supplemental prescription in advance of a trip, but these involve a discussion with a physician, perhaps a pharmacy, and most certainly an insurance carrier who pays for the medicine. Might there be a simple way? Why yes, indeed! Here is how to build your own private stash of pill-form chemotherapy and other sustaining medication. Most pharmacies and insurance companies will process a refill within 5 days of the date of zero balance on your prescriptions. Order your refills as early as your pharmacy and insurance carrier allows. When you receive your new monthly supply, start taking drugs from the new bottle. Retain the old bottle (now called your "stash" bottle) which might contain 4 to 5 unused pills. Feed the stash bottle with unused pills after each renewal. In 6 refills, you'll have a months worth of stashed medication. This becomes your travel supply. More important, it becomes your disaster supply to ensure you don't run out while recovering from a tornado, hurricane, power failure and the like. While we are on the topic of pills, my GP and med onc decided that a severe chest illness could be a very dangerous medical situation for me while traveling in an exotic local (try obtaining antibiotic medication in Egypt). So, my GP wrote a prescription for a month's worth of Levaquin to take on trips. My instructions were to start taking this medication when symptoms presented while searching for a competent doctor. As lung cancer survivors, we all hold a higher risk of bacterial lung infections morphing into something threatening, so an antibiotic stash is likely a good idea. Off course, all you-all do have a list of your prescription medication and lung cancer treatments on your Medical ID screen of your cell phone, right! OBTW--If you choose treatment for lung cancer, then you are choosing to live. Trips to somewhere enhance the qualify of one's life. Go somewhere; do something! Stay the course. Tom
  9. Visit https://merckoncologyclinicaltrials.com/en-us/patient/trial/NCT04738487 or call 888-577-8839 for more information MK7684A-003 - Coformulation of Pembrolizumab/Vibostolimab versus Pembrolizumab monotherapy for programmed cell death 1 ligand 1 (PD-L1) positive metastatic non-small cell lung cancer (NSCLC) (NCT04738487) You can be able to join this study if you have NSCLC and have not been treated for cancer cells that may have spread through your body. The drug you get will depend on which group you are placed in. You have an equal chance (50/50) of being placed in each group. This trial has 2 groups: Group 1 will get MK-7684A Group 2 will get pembro You, your trial doctor, and the trial staff won’t know what drug you are getting. In case of a health emergency, they can find out.
  10. Visit https://merckoncologyclinicaltrials.com/en-us/patient/trial/NCT04624204 or call 888-577-8839 for more information KEYLYNK-013 - Placebo-controlled study of concurrent chemoradiation therapy with Pembrolizumab followed by Pembrolizumab and Olaparib in newly diagnosed, treatment-naïve limited-stage small cell lung cancer (LS-SCLC) (NCT04624204) You can be in this trial if you have newly diagnosed LS-SCLC and have not yet had treatment. The drug you get will depend on which group you are placed in. You have a 1 in 3 chance of being placed in each group. This trial has 3 groups: Group 1: Pembro with chemotherapy and radiation followed by pembro and olaparib placebo Group 2: Pembro with chemotherapy and radiation followed by pembro and olaparib Group 3: Pembro placebo with chemotherapy and radiation followed by pembro placebo and olaparib placebo You, your trial doctor, and the trial staff won’t know what drug you are getting. In case of a health emergency, they can find out.
  11. Visit https://merckoncologyclinicaltrials.com/en-us/patient/trial/NCT03924869 or call 888-577-8839 for more info KEYNOTE-867 - Efficacy and safety study of stereotactic body radiotherapy (SBRT) with or without Pembrolizumab in adults with unresected stage I or II non-small cell lung cancer (NSCLC). (NCT03924869) You may be able to join this study if: · You are at least 18 years of age. · You have been diagnosed with Stage I or IIA NSCLC that has not been treated. · You will undergo SBRT to treat your lung cancer instead of having surgery to remove the lung cancer. · You may require SBRT instead of surgery because: o You have other medical conditions that may prevent you from safely having surgery. o Your cancer is in a position that is difficult or not safe to operate on. o After being informed by the study doctor that surgery is the preferred treatment for your stage of lung cancer, you have decided not to have surgery You have an equal (50/50) chance of being placed into one of the following groups: Group A - SBRT and pembrolizumab Group B - SBRT and placebo You, your trial doctor, and the trial staff won’t know what drug you are getting. In case of a health emergency, they can find out.
  12. Visit https://merckoncologyclinicaltrials.com/en-us/patient/trial/NCT04938817 or call 888-577-8839 for more information KEYNOTE-B98 - Safety and efficacy study of Pembrolizumab in combination with investigational agents for the treatment of extensive-stage small cell lung cancer (ES-SCLC) in need of second-line therapy. (NCT04938817) You may be able to join this study if your ES-SCLC has gotten worse. ES-SCLC is a type of advanced SCLC that has spread to other parts of the body. The trial drug you get will depend on which group you are placed in. This trial has 4 groups: Group 1 will get MK-1308A. Group 2 will get MK-1308A and lenvatinib. Group 3 will get MK-1308A and MK-4830. Group 4 will get coformulation favezelimab/pembrolizumab. You, your trial doctor, and the trial staff will know what you are getting.
  13. Visit https://merckoncologyclinicaltrials.com/en-us/patient/trial/NCT04956692 or call 888-577-8839 for more information EYNOTE-A86 - Study of Pembrolizumab subcutaneous versus Pembrolizumab intravenous administered with platinum doublet chemotherapy in participants with metastatic squamous or nonsquamous non-small cell lung cancer (NSCLC) (NCT04956692) You may be able to join this study if you have a new diagnosis of NSCLC that has spread to other parts of your body and has not yet been treated. The type of NSCLC you have can be squamous or non-squamous. The trial drug you get will depend on which group you are in. You have a 2 in 3 chance of being in Group A, and a 1 in 3 chance of being in Group B. There are 2 Groups: Group A: pembrolizumab subcutaneous (SC) with chemotherapy Group B: pembrolizumab IV with chemotherapy The type of chemotherapy you will get depends on the type of NSCLC you have: · Squamous: carboplatin with taxane (paclitaxel or nab-paclitaxel) · Non-squamous: pemetrexed with platinum (cisplatin or carboplatin) You, your trial doctor, and the trial staff will know what you are getting.
  14. Visit https://merckoncologyclinicaltrials.com/en-us/patient/trial/NCT04725188 or call 888-577-8839 for more information MK7684A-002 - Pembrolizumab/Vibostolimab coformulation or Pembrolizumab/Vibostolimab coformulation plus Docetaxel versus Docetaxel for metastatic non-small cell lung cancer (NSCLC) with progressive disease after platinum doublet chemotherapy and immunotherapy (NCT04725188) You may be able to join this study if you were treated for NSCLC before, but your cancer has now spread. The drug you get will depend on which group you are placed in. You have a 1 in 3 chance of being placed in each group. This trial has 3 groups: Group 1 will get MK-7684A with docetaxel. Group 2 will get MK-7684A alone. Group 3 will get placebo with docetaxel. If you are placed in Group 1 or Group 3, you, your trial doctor, and the trial staff won’t know which treatment you are getting. In case of a health emergency, they can find out. If you are placed in Group 2, you, your trial doctor, and the trial staff will know that you are getting MK-7684A alone.
  15. Visit https://merckoncologyclinicaltrials.com/en-us/patient/trial/NCT04380636 or call 888-577-8839 for more information KEYLYNK-012 - A study of Pembrolizumab with concurrent chemoradiation therapy followed by Pembrolizumab with or without Olaparib in stage III non-small cell lung cancer (NSCLC). (NCT04380636) You may be able to join this study if you have NSCLC and: · Your tumor is found in the lung and structures in the middle of the chest · Your tumor has not spread to other parts of your body · Your tumor cannot be taken out by surgery You will have an equal chance of being placed into 1 of 3 groups. The group that you are placed in will determine which study drugs you will get: Group A: Pembro with chemotherapy and radiation followed by pembro and olaparib placebo (this is a look alike to olaparib with no active ingredients) Group B: Pembro with chemotherapy and radiation followed by pembro and olaparib Group 😄 Chemotherapy and radiation followed by durvalumab You, your trial doctor, and the trial staff won’t know what drug you are getting. In case of a health emergency, they can find out.
  16. Visit https://merckoncologyclinicaltrials.com/en-us/patient/trial/NCT04924101 or call 888-577-8839 for more information KEYNOTE-B99 Efficacy and safety of Pembrolizumab plus investigational agents in combination with chemotherapy as first-line treatment in extensive-stage small cell lung cancer (ES-SCLC) (NCT04924101) You may be able to join this study if you have ES-SCLC and have not yet received treatment for your SCLC. The trial drugs you get will depend on which group you are placed in. This trial has 3 groups: Group 1: Will get pembro, MK-4830, and chemo Group 2: Will get pembro, MK-5890, and chemo Group 3: Will get pembro, lenvatinib, and chemo Your chance of being in each group depends on what groups are open for enrollment at the time you start the trial. The trial doctor or trial staff can tell you which groups are open. You, your trial doctor, and the trial staff will know what you are getting.
  17. Last week
  18. I saw my oncologist and she was impressed with the study. She told me that she had attended a conference at MD Anderson and had a lot of respect for them, She also said that Claritin 10 mg day would be a good one to try. Zyrtec was also mentioned. I asked her about trying the pediatric dose because of my kidney disease and bph. She advised me to take the adult dose and stop if I had any issues. I took my first dose earlier today and so far so good.
  19. Hi Justin, I'm so sorry you are in such pain. I completely understand not wanting to go to the hospital, but I just wanted to share that when my doctors wanted me to go to the Emergency Room at the hospital, I didn't go and I now realize it was a pretty dumb move on my part (and that's an understatement.) Whether you go or not, I hope you find a way to get some relief. Karen
  20. Betsy, Glad you had such astute doctors. I was glad to have had genomic testing for biomarkers of tumors. I hope your docs will be seeking that for yours. Karen
  21. You've been hit by a lot, all at once. I can hear how shocking it's been for you. Even though I am almost through with all my treatment and after-effects, I am only now beginning to process the whole thing. It is surprising how deep my feelings run about it all. All along, I've needed to take time to remember to breathe deeply (before falling into an inadvertent nap) and that is standing me in good stead at this point. I've also started meditating. I hope the neurosurgeon had good things to say. Best, Karen
  22. My oncologist said I could go ahead and try an antihistamine as an adjunct to my immunotherapy (Tecentriq)--she just emailed me that drugs in the class mentioned included Zyrtec, Claratin, and Allegra. This article, which discusses the MD Anderson article, also mentions those three. https://www.genengnews.com/news/2nd-gen-antihistamine-drugs-may-improve-outcomes-for-cancer-patients-receiving-immunotherapy/ Just a reminder to anyone on the Forums--be sure your oncologist knows about (and approves) any medications you are taking--including OTC meds like these.
  23. You may be able to join this study if you have metastatic NSCLC and were previously treated with platinum doublet chemotherapy and immunotherapy, but your cancer is getting worse You have a 1 in 3 chance of being placed in each group. Group 1 - You have 4 chances in 9 of being assigned to this group. People assigned to Group 1 will get pembrolizumab and lenvatinib. Group 2 - You have 4 chances in 9 of being assigned to this group. People assigned to Group 2 will get docetaxel. Group 3 - You have 1 chance in 9 of being assigned to this group. People assigned to Group 3 will get lenvatinib alone. You, your trial doctor, and the trial staff will know what you are getting. Visit https://merckoncologyclinicaltrials.com/en-us/patient/trial/NCT03976375 or call 888-577-8839 for more information
  24. BroFTW

    Starting PCI

    It's been a week, nausea still is an issue, no headaches but the hair fall off again. Went to the doctor who prescribed the same meds but different dosage and time.
  25. KOP

    I/Os for PDL1/-1

    Thanks Tom. I will take a look at your reference. Based upon the article I just read, see title below, it does suggest not much meaningful difference between them. I understand combinations of CTLA-4 and PD-1 are showing some response even in non-PDL1 expressed patients. The system wont let me attach in or send a link. Looking for the Optimal PD-1/PD-L1 Inhibitor in Cancer Treatment: A Comparison in Basic Structure, Function, and Clinical Practice - PubMed (nih.gov)
  26. LexieCat

    I/Os for PDL1/-1

    I just talked with my oncologist about my next immunotherapy. I had Keytruda as part of the triplet (with Alimta and carboplatin) and had progression after switching to maintenance doses. Then did a clinical trial of TIL therapy (another form of immunotherapy) and after an initially great response, again had progression. On the table today were Opdivo + Yervoy, Keytruda alone, or Tecentriq alone. Even though they are similar, they aren't identical, plus my doc felt it had been long enough since my last Keytruda infusion that it might be worth trying again. Ultimately, we settled on Tecentriq, which targets PDL1 (Keytruda and, I believe, Opdivo target PD1). I think the immune system is a funny thing. All kinds of things affect it and my doctor says sometimes with a break in between, something that didn't work perfectly before might work again. They are still figuring this stuff out. Incidentally, my doc is also gonna prescribe an antihistamine on the "couldn't hurt to try" theory, given the recent research that certain antihistamines can enhance immunotherapy.
  27. Tom Galli

    I/Os for PDL1/-1

    KOP, To restate, your question is if one immunotherapy checkpoint inhibitory did not work on an individual, then all won't work on that individual. Is that correct? First, understand I am not a physician, but I believe the answer to your question is no. Here is information on immunotherapy and in particular checkpoint inhibitors. Stay the course. Tom
  28. Hello HOPEtastic LCSCers! Here is an opportunity with the FDA for those who are interested in research advocacy. Please reach out to the contact listed if you have any questions! ___________________________________________________________________ OUTREACH EMAIL/LANGUAGE TO PATIENTS TO PARTICIPATE In the Workshop Research advocacy opportunity with the FDA Make your voice count by having a seat at the table! The U.S. Food and Drug Administration (FDA,) Center for Devices and Radiological Health (CDRH), is planning a Virtual Public Workshop in April 2022. The purpose of the workshop is for stakeholders, including patients, to share information that will help FDA develop approaches to ensure the safety and effectiveness of a new device-based therapy for cancer patients with Oligometastatic Disease of the Lung (OLD). Cancer cells from the original (primary) tumor can travel through the body and form a small number of new metastatic tumors in one or two other parts of the body. For example, cancer cells may spread to form one or two new tumors in the brain or in the liver. This is called Oligometastatic Disease. The new therapy involves inserting a probe into the tumor, through a fiberoptic scope placed down into the airways of the lung to access and directly treat tumors that may metastasize from primary tumors (e.g., lung, kidney, colon, or rectum) specifically to the lung (OLD). During this workshop, patients like you, will have an opportunity to share their perspectives about this new therapy that is designed for cancer patients who have had a good response to treatment of their tumor at the original site; for example, in the lung, kidney, colon or rectum, but have developed a few new small tumors at other sites in their lungs. You (patient or caregiver) are eligible to participate in the workshop if: 1. You/The patient were/was diagnosed with oligometastatic cancer in the lung and are currently receiving treatment for the cancer 2. The primary cancer is under control (meaning it is stable or shrinking) 3. You/The patient have/has been diagnosed with OLD by your treating oncologist 4. You/They have received treatment in the past for the OLD We are asking you as a cancer patient with OLD (or patient caregiver), to participate in a panel discussion with other patients and healthcare experts sharing: • your OLD medical condition and medical device treatment experience during an approximately 1-hour virtual panel discussion, including how you were diagnosed, treated and are currently being managed, • how OLD has impacted you physically and emotionally, throughout the course of your illness, and the physical and emotional consequence(s), • how managing OLD symptoms has impacted your quality of life, family members or loved ones, • information that will help FDA develop approaches to ensure the safety and effectiveness of this new treatment. We are also asking to pre-record your presentation early next year, so that we may share your video during the meeting. We have staff who will work with you to make the recording process easy. By participating in this public workshop, you will have an opportunity to bring your valuable perspective about living with OLD and factors that should be considered during the design and conduct of clinical trials for aa new device-based therapy. If you are available to participate in the workshop, please contact Tracy Gray at [email protected] Thank you. Tracy ____________________________________________________________________
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