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Found 19 results

  1. Looking for input on Opdivo/Yervoy treatment for locally recurring SCLC or success in repeating 1st line chemo/radiation. Apologies for message length. I have been diagnosed with a local recurrence of small cell lung cancer. I was originally diagnosed with Limited Stage SCLC Oct 31 2017, had a full response to treatment (Carboplatin etoposide with concurrent Radiation) which ended January 17 2018. So it’s been about a year. My oncology team is recommending I go straight to immune therapy (Opdivo & Yervoy) I’m struggling with do I go forward with immune therapy (Opdivo and Yervoy) or given local recurrence ( ie no distant Mets ) do I push to repeat prior chemo/radiation treatment . Would want to possibly redo radiation (which may be possible) Would be interested in anyone opinion on this, experience with treatment with Opdivo/Yervoy. Also if anyone has had success with repeating original chemo/radiation treatment. The local recurrence is in right bronchus intermedius. Subcarinal lymph node 1.3 cm, 5.2 FDG update and azygos esophageal recess (1.64 cm with 4.6 FDG uptake) . Again no Mets elsewhere. Having an MRI (brain) this week.
  2. First off, I am a stage 3 NSCLC patient who was first diagnosed January of 2015. I underwent surgery (thoroscopic wedge resection) to remove a lime size tumor from my right lung. Everything seemed to be going good until a year later when a recurrence occurred in both lungs and the lymph nodes in my chest. More surgery was not an option so I was scheduled to begin radiation therapy and chemo. the radiation had some unpleasant side effects but resolved the issue with my lymph nodes. The chemo had very limited success so after a few months off to recover I started my second round of platinum based chemo and one other drug. I guess I was lucky since the side effects of the chemo were not that severe. I lost all of my hair of course and had a lot of fatigue and loss of appetite, but that was about it. Once again the chemo had limited success although it helped to keep the cancer from spreading to other organs. Last March my oncologist suggested Immunotherapy, so I began Opdivo infusion once every two weeks. Two great things about this. 1) I can tolerate the Opdivo a lot better with no side effects to speak of. And 2) My last CT scan showed some incredible results. the tumors in my right lung were stable (no growth) and the tumor in my left lung was gone ! I realize this is not a cure, but as they say it is a chance to live a little longer.
  3. My husband started immunotherapy treatment for metastatic cancer on October 15th, which spread from kidney cancer. It is renal cell carcinoma and he has several small tumors in each lung and one affecting a lymph node by his adrenal gland...which is near where his affected kidney was before it was removed. He didn't get to start treatment right away, because doctors wanted his kidney out first and he needed to heal before starting the immunotherapy. My husband had his first CT scan on December 13th, but it showed about 30% growth of all of the tumors. They told him it could be because the tumors grew that much or more between his diagnosis in late August until his treatment began, which was 6 1/2 weeks later. His oncologist said that many patients don't see their tumors shrink until four months after treatment starts. We would just like to know if anyone has been on immunotherapy (possibly both Yervoy & Opdivo) and had to wait four months to see their tumors start to shrink.
  4. Hope everyone is doing well today. Especially you Mally. Saw my Oncologist last Monday before my Opdivo infusion. He informed me that new studies had been done showing that they can double the dose of Opdivo and give it every 4 weeks rather than every 2 weeks. Has anyone else heard anything about this? I'm going to do a little web searching and see if I find it. This Oncologist is kind of pioneering in his approach as he's the same one who gave me SBRT for my original 3 lung tumors. My Opdivo schedule has already been changed from a one hour to thirty minute infusion time. And every 4 weeks would be more convenient. Just hadn't heard about either of these changes anywhere else so throwing it out to see if anyone else has. Judy M.
  5. Mally

    Mally

    Well first dose of opdivo done now to wait to see if any side effects but the nurse said side effects are not that common so fingers crossed and im getting a port put in after my next infusion ...anyone got experience with Opdivo ?
  6. Hello, my name is Christine. In Nov 2016, my Mom was diagnosed w/ Stage IV metastatic adenocarcinoma NSCLC (primary: right lung, spread to both adrenal glands, brain & right proximal tibia). She had surgery to remove the tumor in her right tibia, which they filled with bone cement to stabilize the bone. She has completed whole brain radiation, radiation to the right tibia, 2 rounds of chemo: Paraplatin (Carboplatin), Alimta (Pemetrexed) & Avastin (Bevacizumab) & 6 Opdivo (Nivolumab) treatments. The chemo & Opdivo were both unsuccessful. Since her last scans 3 months ago, the cancer is spreading/growing in the bones (spine, hip, both tibia, left fibula, & sacrum) in her lung, adrenal glands (lung tumor & adrenals mets doubled) & possible spot on the liver. The good news is the WBR radiation helped, out of the 13 mets only 1 is left. It seems as her cancer is receptive to radiation but not chemo or immunotherapy. The remaining treatment options are becoming scarce. The Oncologist offered 3 options: 1- Do nothing. See her once a month, if possible treat pain/issues as they arise. The Oncologist estimates life expectancy to be 3-6 months. 2- Chemo: Docetaxel 1x every 3wks. 3- Chemo: Gemcitabine 1x every week for 3 weeks per month. Estimated life expectancy for both chemo options is 6-12 months. However, based off her chemo history her QOL will be severely impacted. My Moms primary goal is quality of life & has chosen to treat issues as they arise. Tomorrow, her 72nd birthday, she will have her 1st of 5 radiation treatments to mets in her right tibia & fibula b/c they are causing severe pain. Sorry for the excessive details, I'm emotional, confused & scared. My main objective in writing tonight is to ask the tough question, what generally happens when treatment is basically stopped. I know everyones situation is different, so there wont be a cookie cutter answer. I'm looking for honest, straight forward, even blunt info as to what we are facing as this disease keeps spreading.
  7. Hello, my name is Christine. My, 71 yr old, Mother was diagnosed in Nov 2016 w/ Stage IV metastatic adenocarcinoma NSCLC (primary: right lung, spread to both adrenal glands, brain & right proximal tibia). At diagnosis she was given an estimate of 6-12 months to live, which was quickly adjusted to 6 months after they discovered 13 brain mets opposed to the 3 they originally saw. She had surgery to remove the tumor in her right tibia, which they filled with bone cement to stabilize the bone. She has completed whole brain radiation, radiation to the right tibia & 2 rounds of chemo: Paraplatin (Carboplatin), Alimta (Pemetrexed) & Avastin (Bevacizumab). The chemo was unsuccessful. The cancer spread to multiple bones in her left leg, her pelvis & spine. They stopped chemo & started Opdivo last week. It is too soon after completing whole brain radiation to do another brain scan to know if it helped. I'm sorry for the information overload....I'm just trying to give as much info as possible to see if anyone here has a similar situation & could offer some words of wisdom, offer a glimpse of hope or suggest ways I can help her. Thank you in advance for your help.
  8. Jg_miller

    Ct scan

    I was diagnosed with stage 4 lung cancer in January 2016. Started Opdivo in June after 6 sessions of platinum chemo. Each ct scan has shown no new growth and no new cancer, which is good. My last ct scan showed no growth in the original spot on my lung but did show several new minuscule spots. My oncologist and myself decided to continue the current Opdivo therapy and revaluate with the next ct scan in 7 weeks. Has anyone had this experience with Opdivo and if so, was there improvement when the original treatment was continued or more growth and a switch to a new therapy? Quote Edit
  9. I was diagnosed with stage 4 lung cancer in January 2016. Started Opdivo in June after 6 sessions of platinum chemo. Each ct scan has shown no new growth and no new cancer, which is good. My last ct scan showed no growth in the original spot on my lung but did show several new minuscule spots. My oncologist and myself decided to continue the current Opdivo therapy and revaluate with the next ct scan in 7 weeks. Has anyone had this experience with Opdivo and if so, was there improvement when the original treatment was continued or more growth and a switch to a new therapy?
  10. Hi everyone! My dad was diagnosed in 2011 with IB adenocarcinoma. Underwent wedge resection, without need for chemo or XRT. Fast forward to 2016, when he underwent a CT scan to check on his (for now) stable aortic aneurysm, and they discovered 3 enlarged lymph nodes. Found to have IIIB adenocarcinoma. Underwent chemoXRT. PET in Oct revealed excellent response to the chemoXRT, however, we unfortunately missed the "curative intent" boat, as the cancer had already spread to the liver (too numerous to count), possible bony mets and possible lung nodules. So far, he had been asymptomatic entirely, outside of the side effects from the chemoXRT. He does not have your typical mutations, so onc recommended starting Opdivo, as he feels it works just as well, if not better than, standard chemo with fewer side effects. The jury is still out regarding Opdivo, as he's only had one infusion. As soon as he had the infusion, he immediately started feeling symptomatic, unclear if it's from the disease or the tx. Substantial increase in fatigue, dysguesia, queasiness, and feverish. I'm not even sure he has the PDL-1 expression. Anyway, I'm asking about BRCA1 and CDKN2A mutations. Does anyone know much about these? The doc felt that if Opdivo doesn't work, we could potentially try olaparib or palbociclib instead. These have been approved as targeted therapies for recurrent ovarian and I think breast cancer. I haven't found much research on lung, except for ongoing some clinical trials in SCLC. Does anyone have any information, either anecdotally or clinically, about these mutations and using the other drugs? Thanks so much! By the way, I'm getting married in January, and in lieu of gifts, my fiancé, sister, and brother in law have decided to donate money to this awesome organization. We are hoping we can contribute to a path toward better treatment options.
  11. My husband was diagnosed stage 4 met to brain and super clavicle lymph nodes. Sterotactic done to brain and lung. Proton to clavicle plus 2 courses of chemotherapy. Reoccurrence to Chest cavity affecting voice, swallowing,cough and shortness of breathe. Doctor recommends Opdivo. Need to know side effects and prognosis.
  12. On August 17, LUNGevity hosted a webinar with Dr. Julie Brahmer to discuss recent clinical trials in immunotherapy drugs. These trials have stimulated a lot of discussion in the lung cancer community. The webinar was moderated by LUNGevity's Vice President of Support & Surivivorship, Katie Brown. Dr. Julie Brahmer is an immunotherapy expert at Johns Hopkins and a member of LUNGevity Scientific Advisory Board. Dr. Brahmer is an expert in the use of immunotherapies to treat lung cancer. She has spearheaded numerous clinical trials for the immunotherapy of lung cancer, including the pioneering trial that led to the approval of nivolumab in the second-line setting for advanced-stage lung cancer. Dr. Brahmer is the director of the Thoracic Oncology Program at the Johns Hopkins Kimmel Cancer Center. She is also a member of LUNGevity’s Scientific Advisory Board. To listen to the webinar and to read the follow-up blog written by LUNGevity's Director of Science Communications, Dr. Upal Basu Roy, please click here.
  13. 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?
  14. Dad went for 12 week checkup today - has been on Opdivo and has been feeling pretty good. However, he hasn't been on any chemo yet. Everything I read about Opdivo says that it is for "those who have previously been on platinum-based chemo." The doctor, who has been the only oncologist that my Dad has seen, seemed to think that Dad had been on some chemo previously. I'm concerned that the doctor hasn't been paying attention, since he never prescribed chemo, just Opdivo - and I'm worried about what the concequences of having not had chemo on his prognosis. Any thoughts from the group?
  15. LizG

    Mobility Help

    Hi everyone, Since I last was active in the forum my mom (Stage IV Adenocarcinoma, diagnosed 9/14) has had a severe decline in her mobility and regularly needs to use a wheelchair. She has been experiencing a host of digestive side effects from her pain medication which have left her pretty frequently unable to eat. The weakness this causes is the main contribution to her overall mobility problems. Mom is no longer able to navigate the stairs safely, so to take her to appointments and treatment we have to carry her down the stairs to the driveway to get her to the car. I am trying to find a way to have a wheelchair ramp installed at the house so that she can come in and out safely, especially as winter fast approaches. Right now the lowest quote is $4000... and can't be covered by insurance. Does anyone have a recommendation of where to find resources to help with the cost?
  16. HI All- Our friends at LCC need our help on immunotherapy See below: Please Share Your Insights on Nivolumab! (Opdivo) Canada is evaluating nivolumab for public coverage and we need your help. We are looking for patients and caregivers who have had experience with nivolumab in NSCLC. The Pan-Canadian Oncology Drug Review (pCORDR) group is a government organization that decides if nivolumab should receive public coverage. It is an important step to getting access in Canada. Lung Cancer Canada completes the patient and caregiver experience portion of that submission. We are looking for patients and caregivers who have experience with Nivolumab to speak to us either one on one or in a group discussion. It should take no more than 60 minutes of your time. We will work around your availability. You don’t have to be Canadian to participate. pCODR considers the patient experience to be the patient experience. We would need to speak to you by November 10. Thanks for your help. Please connect with [email protected] if you are able to help!!!!
  17. Hi, my name is Roxanne. I need feedback concerning treatment option at this point to decide how to proceed. My apologies for the need for such a long post! In May 2014 I was diagnosed with stage IV squamous cell carcinoma lung cancer with mets to my liver. There was no primary tumor and it was diagnosed via a liver biopsy. The cancerous lesions are "mostly" small and are widely spread in both lungs, lymph nodes in lung area and liver. I did a six month chemo combo of Carboplaten/Abraxane. I had a small amount of shrinkage of the lesions and the majority of the lesions just remained stable. Three months after the end of chemo I was "technically" stable but due to having some progression I was able to get into a clinical trial of Nivolumab (Opdivo). Two months into that treatment my CT scan showed me completely stable, which was a surprise for my doctor as his other patients mostly responded with good results after four months or so on the drug. This gave me so much hope as the side effects were minimal. My recent scan showed some progression (my doctor says mild progression) and initially he wanted to take me off of the Nivolumab and switch to Gemzar chemo. He thought on it some more and decided to let me continue the Nivolumab for approximately six and a half weeks, then do an early scan to see if the progression had halted. I was told to continue to think of possibly using the Gemzar during this time. I think he may have opted for the additional period of time on the Nivolumab to give me more time to think about the Gemzar as I am more inclined at this point to just stop all treatment rather than going back on chemo. I had very little quality of life while on chemo and for a couple of months after it was stopped. I dread going back for more. I have looked at many posts at another lung cancer support group I belong to and they reported that Gemzar had much milder side effects (but still had some hair loss, nausea/vomiting that could be controlled by medication and most reported it causing issues with the blood cells, making the need for those dreadful Neupogen injections the norm through most of treatment and a very few had to have blood transfusions. But I also noted that the majority of the patients on Gemzar had adenocarcinoma and not squamous. So my questions: 1) Is there a noted difference for potential different outcomes in the effectiveness of Gemzar based on having adenocarcinoma vs squamous? 2) What were the major side effects you experienced on Gemzar. Did you lose your hair or if it thinned, was it a marked amount. Did you find that you needed treatment to get your WBCs back in line often on this drug? 3) If I did not have remarkable results on the first line choice of the two chemo drugs in the beginning, can I honestly expect the Gemzar to make a difference? (My question is based on the fact that they did not chose this drug first-so if the first treatment was more effective to give me a chance-can I really expect a drug not shown for helping in the beginning to now stabilize or shrink my lesions and if so---why? Does having had a previous doublet treatment make your body respond better at a later date to a drug not considered before?) I am trying to understand the reasoning. 4) Last but not least, has anyone with squamous lung cancer been on the Opdivo and gone back and forth between progression and stability or shrinkage? I ask this as I am so tentative to going the chemo route again that I am thinking of just stopping all treatment and just going the palliative care route. Knowing this, a friend asked why not just stay on the the Opdivo rather that go without any treatment since the side effects are minimal and it "might" even do some good? I am digging deep so that I can make the right choice. I have been given this six and a half weeks of Opdivo to see if the progression continues and that will be toward the end of this month (September 2015). I will welcome anyone's feedback of personal experience, links to articles which address any of this as related to squamous lung cancer as the response to various drugs with squamous and adenocarcinoma appear to be quite different and with very different maintenance protocols. Thank you so much. Roxanne
  18. Hi, My dad was diagnosed with stage 4 lung cancer met to liver a year ago. He did chemo from last november to about two months ago, 6 or 7 weeks ago he started OPDIVO which was recently approved. While he had some side effects on the chemo, but really nothing that slowed him down, this new "drug" has devistated him. He had 3 treatments once every two weeks for 6 weeks, and it was like he was ready to die. It all coinicided with this new Opdivo treatment. We actually had to hospitalize him last week for a few days. It's like his body is attacking itself and not the cancer. But his blood work was supposedly normal, and all the tests. Catscan taken last week revealed no growth or decline and the actual cancer was stable. Has anyone been on this? Has anyone else had every possible side effect? Can you come back from the side effects? Thank you, Karen
  19. I have a question to pose and hopefully I can get some solid answers to help me to make some decisions. Caution-long post as much to relate that goes with my questions! In May 2014 I was diagnosed with stage IV squamous cell carcinoma lung cancer with mets to my liver. There was no primary tumor and it was diagnosed via a liver biopsy. The cancerous lesions are "mostly" small and are widely spread in both lungs, lymph nodes in lung area and liver. I did a six month chemo combo of Carboplaten/Abraxane. I had a small amount of shrinkage of the lesions and the majority of the lesions just remained stable. Three months after the end of chemo I was "technically" stable but due to having some progression I was able to get into a clinical trial of Nivolumab (Opdivo). Two months into that treatment my CT scan showed me completely stable, which was a surprise for my doctor as his other patients mostly responded with good results after four months or so on the drug. Once Opdivo was released by the FDA for use on squamous lung cancer I moved out of the trial and began to use as a regular patient. My recent scan showed some growth and initially my doctor wanted to take me off of the drug and switch to Gemzar. He thought on it some more and decided to let me go for about six and a half weeks in the Opdivo and then scan again to see if the progression had stopped so that I was stable or better yet-shrinkage. But I was told to continue to think of possibly using the Gemzar. I think he may have opted for the additional period of time on the Opdivo as I was more inclined at that point to just stop all treatment rather than going back on chemo. I found zero quality of life in the first treatment in that six months and for an additional two months as I finally revived. I have looked at many posts at another lung cancer support group I belong to and they reported that Gemzar had much milder side effects (but still had some hair loss, nausea/vomiting that could be controlled by medication and most reported it causing issues with the blood cells, making the need for those dreadful Neupogen injections the norm through most of treatment and a very few had to have blood transfusions. But I also noted that the majority of the patients on Gemzar had adenocarcinoma and not squamous. So my questions: 1) Is there a noted difference for potential different outcomes in the effectiveness of Gemzar based on having adenocarcinoma vs squamous? 2) What were the major side effects you experienced on Gemzar. Did you lose your hair or if it thinned, was it a marked amount. Did you find that you needed treatment to get your WBCs back in line often on this drug? 3) If I did not have remarkable results on the first line choice of the two chemo drugs in the beginning, can I honestly expect the Gemzar to make a difference? (My question is based on the fact that they did not chose this drug first-so if the first treatment was more effective to give me a chance-can I really expect a drug not shown for helping I the beginning to now stabilize or shrink my lesions and if so---why? Does having had a previous doublet treatment make your body respond better at a later date to this drug.) I am trying to understand the reasoning. 4) Last but not least, has anyone with squamous lung cancer been on the Opdivo and gone back and forth on progression and stability or shrinkage? I ask this as I am so tentative to going the chemo route again that I am thinking of just stopping all treatment and just going the palliative care route. Knowing this, a friend asked why not just stay on the the Opdivo rather that go without any treatment since the side effects are minimal and it "might" even do some good? I am digging deep so that I can make the right choice. I have been given this six and a half weeks of Opdivo to see if the progression continues and that will be toward the end of this month. I had Hashimoto's thyroiditis hypothyroidism lurking in the background but not yet diagnosed when I began the Opdivo treatment and I began that with the full knowledge that if mine was Hashimoto's that it would have a major flare. Mine did flare and the endocrinologist I am now seeing said that my values were so high that he feels sure that my thyroid is totally burned out forever. I felt good on the Opdivo until this flared and I crashed quickly and had horrible fatigue and slept nearly around the clock. As they get my thyroid in line I feel a bit better as I go along. My lab values look fabulous and nothing is out of range and except for some issues with my joints that is not linked to cancer-I feel good and do not appear I'll most of the time. Based on my increased feeling of good health as they thyroid regulates I keep looking at the possibility of living as much time as I can on the Opdivo with the knowledge that it might do no good vs zero treatment if I cannot find some truly solid data to make me open to going the Gemzar chemo route. I will welcome anyone's feedback of personal experience, links to articles which address any of this as related to squamous lung cancer as the response to various drugs with squamous and adenocarcinoma appear to be quite different and with very different maintenance protocols.
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