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Found 13 results

  1. TJM

    Side effects

    All, Almost halfway thru radiation and the side effect I feared most looks like it's coming. I am getting radiated near my esophagus (not directly) but I am beginning to feel pain swallowing. Right now if I drink carefully no issue, but if I take a big gulp (or forkful of a steak) it feels like I'm swallowing a square block. Talked to my onc and nurse and they gave me things to try but they have never actually had cancer. Any advice from the forum? Peace Tom
  2. Hello all. This is my first post on the forum that nobody wants to be a part of. I’m just hoping for some insight. My father who is the Center of my universe was diagnosed with adenocarcinoma stage 4 with Mets to lymph node and chest wall extending into 4th and 5th rib. He just completed radiation to the chest wall on New Years Eve. Radiation was a breeze but with the appropriate heavy duty pain meds. On Friday he was admitted with the most severe pain. Excruciating to watch. CT was done which showed disease progression 1/2 cm. That coupled with a Staph infection. Am I getting too worried? Is it too soon for the radiation to have started working? He starts immunotherapy next week. Thoughts?? Thank you
  3. Hello, my 69 yo husband was diagnosed with lung cancer in April; he started 6 weeks of radiation and chemotherapy in June. He just finished the last radiation on July 29. He was doing well for about 4 weeks but the last 2 weeks have been tough. Esophagitis (inflammation & constriction of esophagus) was mentioned as a possible side effect by his radiation oncologist. In early July, he was given recipe for a "miracle mouthwash" (lidocaine, Benadryl, antacid) which you swallow. It is supposed to coat the throat and esophagus, numb it, so he can swallow and eat, drink. He did not like the taste, said it changed the taste of the food or drink, numbing only lasted a minute or so and stopped using it. He has lost weight, is 6'2" and weighs 151 lbs. When he tries to eat soft foods or drink water (has to use a small coffee stirrer type straw), it is painful, so he doesn't want to try anymore. If he happens to sip too much liquid or does not chew soft food up completely, he ends up retching with a lot of chest pain (does not usually bring anything up). He had a cup of chicken broth one day; the next day he had half a soft boiled egg - that's it for the entire day; He was given oxycodone for pain but it had little effect. Recently, he had IV morphine and fluids for dehydration. He now has morphine delayed release pill and morphine liquid. Have looked on line for remedies & also advice from nurses for esophagitis and dysphagia (difficulty swallowing) and found some suggestions that he has already tried without success. Was told esophagus/throat would be back to normal in 2-4 weeks; don't think he can last that long. His doctor mentioned a feeding tube which he rejects. Just read on line today about esophageal dilation done with an endoscope and balloon to expand width of esophagus. He says the only way he can be comfortable without pain is to lay down; so he spends most of the day laying down or napping. He is also extremely fatigued. Will discuss dilation and extreme fatigue with doctor next. He is also irritable due to the pain which is understandable. Would love to hear from anyone else who has had side effects of esophagitis and dysphagia and how you coped with it. He can't do this for 3 more weeks, it's too much pain and weight loss.
  4. Hi, my father had been dx with SCLC in January and underwent the cycles of carboplatin+ etoposide + tecentriq (immunotherapy) with fairly good response. Now his onco team are planning to do radiation (IGRT) along with carbo+ etoposide. They are saying adding tecentriq to the regime will be too toxic. Has anyone undergone/going through chemo+immunotherapy+ radiation simultaneously ? Prompt response would be of great help
  5. Hi, my father had been dx with SCLC in January and underwent the cycles of carboplatin+ etoposide + tecentriq (immunotherapy) with fairly good response. Now his onco team are planning to do radiation (IGRT) along with carbo+ etoposide. They are saying adding tecentriq to the regime will be too toxic. Has anyone undergone/going through chemo+immunotherapy+ radiation simultaneously ? Prompt response would be of great help
  6. Keytruda Vs. Chemo & Radiation... I can't decide! This is for my mom - age 74 with numerous health issues just diagnosed in December with Primary Lung Adenocarcinoma, though the stage is not confirmed - they're guessing stage 4. She has a general oncologist locally, and a lung oncologist's second opinion with the best credentials at MD Anderson, but frankly, we're unhappy with both oncologists, but it's a toss up between which treatment regimen is best to try at least first - these are the facts: Her current health issues: Mild-moderate COPD with a bit of wheezing (though she doesn't feel like it bothers her at all - it's just her throat making a weird noise when she talks) once a month or so for a few days smokes 8 cigarettes a day still (had one right after returning home after her lung biopsy) facet arthritis in neck and vertebrae esp. lower back, stenosis, dextroscoliosis fell down 1/29/19 on right hip which causes her immense pain daily vascular degeneration small vessel disease causing confusion and early signs of dementia - brother died of alzheimer's - massive anxiety and depression but refuses medication/anti-depressants degenerative disc disease varicose veins in legs, right carotid artery blockage around 70% (not enough for surgery yet given all of her other issues, but she did have a mini-stroke in 2015) Slight colonic inflammation (as viewed on PET in 12/2018 - Gastro doc says doubtful it's cancer) Aortic valve leak from previous radiation 21 years ago causing loud heart murmur Prior breast cancer from 21 years ago (both mother and sister passed from same cancer) - stage 3B or so - told her 1-2 years to live, had full mastectomy of left breast & FAC Chemo & Radiation (she had 0 symptoms except hair loss, and felt almost no poisoning or weakness at all, amazingly at age 53) ...alive 21 years later - she had a strong will to live as I was 12 years old, and father died when I was 8 - only child. General local oncologist: (same one from 21 years ago) 12/2018 - found 2.8 cm tumor in left lobe on ER visit for chest pain (in 2015, it was 1.1 cm and too small to worry about at that point) along with a few very small nodules on the other lobe and a mediastinal mass, oncologists scheduled numerous diagnostic work-ups, thinks it 'may' be in the rib bone and chest lymph nodes but no brain or other organ mets, ordered a lung biopsy, which was inconclusive and did not retrieve any malignant cells from a needle biopsy through the back (radiologist #1) **I took her to a musculoskeletal oncologist to rule out bone mets, and he said he thinks it's just arthritic inflammation, not cancer - so he wouldn't stage it as 4 for bone. 2) 1/2019 - referred her to a thoracic surgeon for a thoracoscopy to get a biopsy, however after the pre-op cardiologist found the aortic valve leak which could lead to a heart attack under general anesthesia... 3) 2/2019 - we decided to pursue another needle biopsy requesting it from the front, and that led to a successful diagnosis almost 2 months later (radiologist #2). So he delayed everything by a month asking for a procedure, which was unnecessary due to the fault of the previous radiologist who told him he was confident another needle biopsy would not work. 4) 3/2019 - Mutation panel came back - 100% positive for PD-L1 on all tumor cells, and negative for all other mutations = strong contender for Keytruda, so his recommendation is to treat solely with Keytruda as he believes chemo at her age with her conditions would be more detrimental to her health. My concern is with all of her other issues, the COPD and arthritis especially, that if the immune system attacks healthy tissue, pneumonitis, colitis, or even lung collapse could happen, and we'd have to be watching her like a hawk for so many potentially fatal side effects, yet the nurse says most of her patients have no issues with keytruda other than minor flu-like symptoms. Medicare and supplemental BCBS covers all of it, and she is ready to go with it any day now once we decide. MD Anderson Lung Oncologist with amazing background credentials: 3/2019 - He wants to order another diagnostic procedure, a bronchoscopy, to insure the lymph nodes are malignant in order to better stage the cancer. This will delay treatment further, could have issues with the anesthesia propofol causing respiratory depression with her COPD, and my question is what is the point at this stage -- there is a mass there in the mediastinum - it's probably malignant being so close to the lung and the heart - what else would it be? It seems like a waste to do this procedure, when the targeted therapy with 100% mutation could treat the entire system. - Depending on if it's malignant, he says chemo and radiation - radiation only if a radiation therapist says she is eligible given her chest being scarred from 21 years prior. If not malignant, just chemo for the nodules in the lungs.... So... chemo is toxic, radiation would be damaging to her already damaged organs... and I don't think chemo on its own has a higher chance of survival with lung cancer vs. targeted therapy with that percentage mutation. But then again 21 years ago before all of her other issues popped up, she did amazing with the most aggressive chemo there is I'm told - FAC But he is the best oncologist credential-wise and is at MD Anderson, which is supposed to be the best. I think maybe he steers away from immunotherapy because of the unknown risk of damaging and lasting side effects to the body vs. chemo, once you're done, you're done... but with her age and all her issues, it's just so difficult to decide on what to pick. Neither of them mentioned doing a combo of immuno/chemo, so it's either one or the other at this point in terms of what they'll order.
  7. Here is the weekly clip report: OncLive “Dr. Larner on Integrating Radiation Therapy With Immune Checkpoint Blockade in NSCLC” https://www.onclive.com/onclive-tv/dr-larner-on-integrating-radiation-therapy-with-immune-checkpoint-blockade-in-nsclc Diagnostic Imaging “Low Dose CT Lung Cancer Screening Program Findings Similar to National Trial” http://www.diagnosticimaging.com/di-executive/low-dose-ct-lung-cancer-screening-program-findings-similar-national-trial Targeted Oncology “Immunotherapy and Chemotherapy Combos Are the New Standard of Care for NSCLC, Says Konduri” https://www.targetedonc.com/news/immunotherapychemotherapy-combos-are-the-new-standard-of-care-for-nsclc-says-konduri OncLive “Dr. Jotte on the Optimal Frequency of Lung Cancer Screening” https://www.onclive.com/onclive-tv/dr-jotte-on-the-optimal-frequency-of-lung-cancer-screening Targeted Oncology “Immunotherapy Combinations Are Changing the Frontline Treatment of Patients With NSCLC” https://www.targetedonc.com/publications/targeted-therapy-news/2018/August-2018/immunotherapy-combinations-are-changing-the-frontline-treatment-of-patients-with-nsclc Cancer Therapy Advisor “Heterogeneity of Drug Resistance in EGFR-Mutant Non-Small Cell Lung Cancer” https://www.cancertherapyadvisor.com/lung-cancer/lung-cancer-nsclc-heterogeneity-drug-resistance-egfr/article/786470/ Speciality Pharmacy Times First Checkpoint Inhibitor for Previously Treated Patients with SCLC Approved by FDA https://www.specialtypharmacytimes.com/news/first-checkpoint-inhibitor-for-previously-treated-patients-with-sclc-approved-by-fda
  8. I've got a great update and a decision to make. After a resection of a small brain tumor plus gamma knife and just two cycles of chemotherapy, my Mom is presenting as NED (no evidence of disease) with small-cell lung cancer (SCLC). She has no side-effects from chemo, so she will go through 6 full cycles. However, I want to line up the next treatment. Usually, there is no maintenance regime with SCLC. We have 3 options: 1) Thoracic Radiation - Accepted to suppress the cancer from coming back, but may this preclude us from future clinical trials, many of which have prior radiation as an exclusion criteria. 2) Immunotherapy with Opdivo/Keytruda - Seem to be effective in many cases with SCLC and can be prescribed off-label for SCLC, but I think you'd only get these for treatment of a solid tumor, correct? Wouldn't be given if NED, right? So, I think this isn't an option outside of a trial. 3) Clinical trial - I've found next to nothing in terms of a maintenance trial for SCLC, and of those I found, only 1-2 would accept NED patients. Of these, one had 4 patient groups: 2 with placebo, 1 with Rova-T which is reported to have a lot of side-effects and just spectacularly failed a phase II trial, and 1 group with Dexamethasone, which gives my mom bad side effects. So, this isn't at all appealing. Anyone know of something else I may have missed? Any advice on what to do from here or your experience would be very welcome. Celebrating NED! Thanks.
  9. Here is the weekly clip report: WRC-TV “Exhibitors Guide: Full List of Exhibitors at the 2018 Health and Fitness Expo” https://www.nbcwashington.com/news/health/Exhibitors-Guide-Full-List-Exhibitors-Health-and-Fitness-Expo-474441813.html Immuno-Oncology News “Bristol-Myers, Nektar Developing Cancer Therapy to Be Used with Checkpoint Inhibitors” https://immuno-oncologynews.com/2018/02/26/bristol-myers-squibb-nektar-cancer-immunotherapy-checkpoint-inhibitors/ Color.com – Blog/Podcast “Adam Klein, Winner of 2016 Survivor, on Becoming a Leading Lung Cancer Advocate” https://blog.color.com/adam-klein-winner-of-2016-survivor-on-becoming-a-leading-lung-cancer-advocate-f2ca8f48415 OncLive “Expert Highlights Immunotherapy Use in Stage III NSCLC” http://www.onclive.com/web-exclusives/expert-highlights-immunotherapy-use-in-stage-iii-nsclc OncLive “Dr. Gieschen on the Side Effects of Radiation Therapy in NSCLC” http://www.onclive.com/onclive-tv/dr-gieschen-on-the-side-effects-of-radiation-therapy-in-nsclc The Baltimore Sun “Orioles Notes: Lee Expected to Miss Four Weeks; Hays to Get Break with Bum Shoulder” http://www.baltimoresun.com/sports/orioles/blog/bs-sp-orioles-notes-20180301-story.html Genome Web “As Cancer Immunotherapy Evolves, Challenges Compound for Diagnostic Development” https://www.genomeweb.com/molecular-diagnostics/cancer-immunotherapy-evolves-challenges-compound-diagnostic-development Cure Today “Taking Action to Address Lung Cancer Across the US” https://www.curetoday.com/articles/taking-action-to-address-lung-cancer-across-the-us Virginia Business "50 Most Influential Virginians - Lynne Doughtie" http://www.virginiabusiness.com/news/article/50-most-influential-virginians-2018
  10. I'm writing this from a Florida Hospital radiation clinic waiting room. My daughter is having intensity modulated radiation therapy (IMRT) to treat her meningioma residual left over from surgery 3 months ago. This was her second brain surgery and in between was the birth of my granddaughter. Ironically, our greatest joy was sandwiched between our greatest fear. She'll have at least 30 fractional sessions. I'm here doing grandfather and father stuff, the former fun, the latter hard as nails. There are substantial risks. The tumor residual is lodged around her eye socket and the impact to her vision is of vast concern. We've talked about it. Mostly we try and forget. Daughter feeds back my mantra of only worrying about things that can be controlled but it doesn't ease my concern. Too much experience in this radiation domain to not worry. I find myself undone by uncertainty, again! Yesterday's clinical visit experience was my first in a long time. Things haven't changed. Quiet people waiting for their time with "the beast", families talking in hushed tones, most have lost hair indicating combination therapy. One change: the radio oncologist came out to greet my daughter. He supervised the fitting of the facial fixture and stayed through the entire dose application. That was unique in my experience and immensely comforting. Maybe the cancer community is learning to treat people not patients. Passing on parental knowledge and experience is expected but not on this subject matter. We need to fry this tumor, but the potential vision side-effects are disconcerting. We've got one chance, twenty-nine radiation bullets left, and then scanziety and hope. Tumor is a word I need to discard from my vocabulary. We will stay the course.
  11. Just a post to vent......I'm mentally and physically exhausted. I have finally hit the wall with this round of treatment. I endured chemo (cisplatin/pemetrexed) last year, but that cycle was a little more forgiving; one long day every three weeks. This round, I've had daily radiation for almost 6 weeks and weekly chemo (carboplatin/taxol). The chemo side effects aren't as bad, but I guess the daily grind of radiation, with the weekly chemo, and the fatigue have finally knocked me down. I'm also starting to lose my hair and Super Doc told me I'll have two more rounds of chemo in June and those two treatments WILL take the rest of my hair. I thought I was mentally prepared to lose my hair, but I wasn't. It's starting slow but at some point, I'll take matters into my own hands and just shave my head. But then I remind myself that I told Super Doc I'll do whatever it takes to beat this, and losing hair is just a casualty of this war. Thanks for letting me vent. Sometimes just putting it in writing helps me, especially because I know you've all endured this and so much more.
  12. I think we can all agree that chemo stinks. I had four rounds of cisplatin/pemexetred last year and I'm 3 weeks into 6 weeks of carboplatin/taxol for a recurrence. Last year, my girlfriends and I decided to have themes for chemo. One session was 80s and the last session was Mardi Gras. We had beads and boas for everyone. We're doing the same thing again this year. We had spring fling, beach fun, and today's pajama party. For some reason, my husband wants no part of the costume concept! I'm sharing this in the hopes that it will inspire you to find a way to get through chemo with a smile. If we don't laugh, we cry.
  13. Hi, Just a quick introduction of a now 64 year old man with stage 4 lung non small cell lung cancer. I have been arguing with this disease for 4 years now and as I listed the various forms of treatments that I have undergone. I won't bore anyone with the details but would be more then happy to answer anyone's questions about any of the treatments that I have had. There seem to be numerous questions about immunology drugs such as Optivo. If I can help just shout at me (or a soft whisper would do fine).
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