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Found 11 results

  1. TJM

    Pulmonary embolism

    Anybody I have not seen many posts regarding pulmonary embolisms I had one some time last fall that I am confident explained my step backwards. I definitely improved after going on blood thinners. Unfortunately I think I had another episode last week. SOB, erratic heart rate, lower O2 saturation, night sweats etc. Very similar to last fall. I am in contact with my pulmonologist, whose backup was pretty concerned yesterday. I did considered going to the ER but decided against it. A Seattle ER on a Saturday night with doctors who are not up to speed with my history stressed me out more than relaxing at my buddies house and hoping for improvement. Luckily it did slowly improve (and continues to improve). In addition it looks like the treatment is blood thinners..which I already take. My working theory is the blood thinner did its job in my lung and it is resolving itself as time goes on. Still a worrying thought as PE's can cause a quick death. My question is, has anyone gone thru this? Any advice? I am waiting for a second response from my pulmonologist and will absolutely follow her lead (she is the most capable doctor on my "team") Appreciate whatever info y'all have. Peace Tom
  2. I started on Tagrisso on 7/27. I had minor issues with dull headaches and diarrhea and a little nausea. Then I got an infusion of zometa. I felt great the rest of that and early the next day. I met friends to walk 9 miles but could barely drag myself in after 7.5. OK. Lesson learned respect Zometa. I felt great a few days later and was walking 2 miles daily. Then I had another bad weekend - worked until 5 AM Saturday (IT don't ask). Then the grandkids came over the day and overnight. I got a decent night's sleep that night. Still didn't feel great but I was doing some walking. This we i have SOB, my cough is back with a vengeance and I get light headed. And the fatigue. I know these are all side effects and I am fairly certain the SOB and cough are worse due to allergies. Gotta love the Ohio Valley. They have me monitoring my BP which has always been low. Tonight it was 116/67. I keep my fluids up almost exclusively water except for a daily cup of decaf tea. I have started to pay more attention to my diet. Is this the way it continues or will it taper off? I am fairly certain Tag is working because the blueberry sized lump above my left collarbone is almost undetectable. Thanks for reading my rant. I know many of you are dealing with much more frightening things right now. Jenny.
  3. All, Looks like my cluster headache attacks are being triggered by one of my meds. Onc said both headaches and constipation are major side effects of this drug. It's called Ondansetron 8mg. Since I quit taking it my headaches have gotten much better and I've got on top of the constipation (too well....) Anyone have a similar experience or advice on other meds. I did not experience any real nausea first cycle and obviously want to keep it that way but these headaches gotta go. Appreciate any input. Peace Tom
  4. Hi All, my father (age 71, stage IV NSCLC) had his first cycle of chemo+immunotherapy (Carboplatin+pemetrexed+Alimta) 8 days ago. Today the nausea is the worst so far and he vomited a little. How did it look for those of you who had the same combo (when did the nausea peak and then disappear)? He got 3 different anti-nausea drugs to last the first 7 days, but they have all run out now. Wondering whether we should expect some rough days ahead or if it will start to get better already. Thank you!
  5. 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.
  6. Looking for recommendations on how to manage side effect of Tagrisso (diarrhea.) Currently taking 80 mg. Tried Imodium caplets. They didn’t help much. Now I use lomotil 2.5-0.025.
  7. 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
  8. Good morning! I am a grateful survivor of NSCLC, having been diagnosed Stage IV December 2015. I've been on Tarceva for 15 months, and it melted the tumors away to being mere scar tissue at this point, NED! As much as I recognize how lucky I am to be in the early years of targeted therapy (3 years ago, I could have died in 6 months from this), I still have a bone to pick with cancer. Just not good enough that it's not GONE completely! Never want to say it's "okay" to live with cancer! Doc says targeted therapy is to be done for the rest of my life, that I won't stay cancer free without it. Not acceptable! I'm learning to live with most side effects - my hair broke off and came back looking like a pile of public hair on my head. I get diarrhea frequently, have learned what to eat/not eat and to time things around it. Skin rash is gnarly - heavy doses of doxycyclene to counteract, which makes me so damn sun sensitive, but really have no options around it - people should invest in sunscreen companies because how much I buy! But the latest news is discouraging. . . My doc had mentioned to me long-term consequences of having Tarceva in my system - it is, let's face it, a poison - even if targeted, it DOES take out some normal cells, that's why we have side effects. Some system issues to monitor - heart, liver, etc. I asked about my joints because they hurt like hell at times. He didn't think they'd be involved. So now that I know there is some collateral damage, I wonder if others suffer from it. Does anyone suffer joint pain? Mine's in my ankles, knees, hips and shoulders. Is this what people call neuropathy? Sometimes it keeps me from sleeping at night. What do others do? As for my refusal to "live with cancer," I know it is the new norm to let it be a chronic disease, like MS, or diabetes, which can be controlled. I say we need to continue to fight to kill this sinister evil, to ensure it is gone completely and gone for good! Let's not slack on the research!
  9. Hello, new to the forum, but 15 months into Stage 4 NSCLC, with NED at this point. Been on targeted therapy (Tarceva) for 14 months, with excellent results. But I'm being worn down by side effects. And my onc told me last visit that even though I am NED I need to stay on the targeted therapy drugs to prevent the cancer from recurring. For the rest of my life. While I am grateful I did not have chemotherapy and the awful side effects of that - I can work, I can modestly exercise, and do regular daily activities - I still detest the side effects and hate the fact I'm stuck taking "poison" to stay NED. My skin rash is only controlled by doxycyclene in high doses, which makes me uber-sensitive to sun so I stay out (a tragedy for me, maybe not others). I'm learning to live with my hair looking like a pile of pubic hair on my head. I've learned to "time" my GI distress and know what I can get away with and when. But what I worry about most is what my onc says will be "long-term effects of toxicity" with the targeted therapy drugs. He told me I'll soon have to begin monitoring for heart disease and liver disease. Other system failures/diseases will have to be watched. He reminded me that that is why he said, at the very beginning of my diagnosis, "you're life will be shortened, but that does not mean you'll be gone tomorrow, or even 5 years from now." Okay, that's bad enough, but maybe my psyche is getting to me. I swear my joints are giving out on me. I cannot sleep at night due to pain in my hips, knees, ankles and shoulders. I've severely cut back on running - can only walk now. I've mentioned that to my onc - he said that's hardly likely caused by the meds and I should go to my regular doc for resolution of this problem. My head is completely messed up. How can I be thankful for the life I've been given through these awesome targeted therapies, and yet curse the long-term effects. And is it "causing" a mental sense that my joints are affected? I'll go to my regular doc, as suggested, but just wanted to know if others go through the same thing?
  10. I was diagnosed with stage 4 non small cell lung cancer 1/13/16. I had 10 sessions of radiation for cancer in my hips and 6 sessions of taxol/carbo. The hips are healing and the pain is minimal. CT scan showed the tumor on my lung and the tumor on my sternum had both shrunk. My oncologist was very happy with the progress. I just had my 4th infusion of Opdivo. After the next session, I will have my 1st CT scan since starting the Opdivo. No side effects from the Opdivo, but after my last treatment of the platinum base, I have developed peripheral neuropathy in my feet and taking gabapentin. I have two questions: Anybody else on Opdivo and if you are, how is it going? Is there any other relief/cure for peripheral neuopathy besides gabapentin?
  11. Hello everyone! The Pan Foundation is accepting applications for a Patient Assistance Program for people who are experiencing chemotherapy-induced side effects. For more information, or to apply, click this link http://www.panfoundation.org/index.php/en/patients/assistance-programs/chemotherapy-induced-nausea-and-vomiting Lauren H. LUNGevity Foundation https://www.lungevity.org/support-survivorship
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