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Found 18 results

  1. Hi All, First, let me thank you for stopping by to read this. Though my mother has been dealing with a diagnosis since January, this is the first time I have sought out a forum. My mother is a very strong and stoic and active 78 year old woman who up until the time of her diagnosis was still skiing regularly. She raised alone me after my fathers death when I was 5. She tends to be very private and though she shares with me her my chart, she prefers to see her doctor and deal with this largely between her and her housemate. Last January she was diagnosed with a progression of her previous lung cancer for which she had had surgery in 2017. On a routine mammogram they found a tumor, and subsequent scans she had Metastases to her brain, bone, breast and liver. She was given the triplet treatment of Alimta, carboplatin, and Keytruda — and now has had 3 maintenance cycles without carboplatin adding in Zometa. I seem to remember her doctor saying that if it progresses there is no treatment they can pursue — She has a very few tumor markers or whatever it is that allowed them to target mutation? her PDL1 is a small percentage and a KRASG12v mutatation. Up until now her disease has been stable but just recently they remarked a growing tumor in her liver. (It has grown a half centimeter since July). She sees her doctor today and I am just trying to prepare myself also knowing she might not share the bigger picture with me. If her brain mets and bone Mets are stable would they offer her radiation? Or surgery? Is there another line of therapy they can try? I appreciate amy wisdom you might offer! Pam in Minnesota
  2. Has anyone on here had the side effect of a loss of taste, while on Keytruda treatments?
  3. May2 Age: 42 Recently Diagnosed 1/16/2020 NSCLC RET Mutation, stage IV. Currently I am on Keytruda,immunotherapy. Started my first treatment two weeks ago, I am scheduled for my next treatment next Friday. Doctor said to do my scans 2 weeks after my second treatment of Keytruda. If there is positive response we will continue. If Keytruda is not effective he will add chemo. Hoping Keytryda will have a positive effect. 🤞🏻🙏🏻🤲🏻🤲🏻 Let me know if you relate....
  4. Hi all, Since my other discussion thread was getting quite long and it's been 1 year since my mom started Keytruda, I decided to start a new thread here, where it might be better seen by those who are looking for information on immunotherapy. So, the 1 year update on my mom....she survived and lived to talk about it!!! She got her CT results yesterday and it was all good news....area around the cancer is stable and may look better (inflammation-wise). We have not been able to see the mass on the back of her trachea since October (2 months after beginning chemo + Keytruda). It still could be there, but it is not causing any problems. I don't know if the term NED will ever be used with her since we cannot get a perfect picture of where the mass was, so we are just using the term "stable". So, for us, "stable" is great news!!! There is a "shadow" that is showing up in her left lung that appeared out of nowhere. Her pulmonologist thinks it is most likely some inflammation or infection - he will keep an eye on it, but is not alarmed by it. Her shortness of breath still persists, she has 1 more heart test to do to see if that is the problem. If it is not, we are to the point where we will likely accept shortness of breath as a new normal for her. Luckily, her pulmonologist does not believe that Keytruda is the culprit, so we plan to stay on it as long as possible. Keytruda side effects: severe itchy skin - it drives her crazy especially at night. She currently takes Benedryl at night if itching is out of control and she has also found an Aveeno excema cream that relieves itching for a bit. Although the itching is bothersome for her, she would rather deal with it than cancer. Other side effect, but it is controlled by meds is her thyroid. She had a slow thyroid to begin with. It got slower, she just increased her meds and it is now controlled - no big deal. Docs keep an eye on it and increase/decrease thyroid med dose when needed. This time last year, I felt hopeless. My mom's lung cancer recurrence was a punch in the gut. I was heart broken when we were told that due to the location of the mass, it could not be surgically removed, nor was it recommended for the first treatment attempt to use radiation (some of the mass was in the original radiation field from her previous bout of lung cancer). So came the recommendation of Keytruda + Alimta/Carbo. I was unhappy and scared of this new "immunotherapy stuff". But this"immunotherapy stuff" is the best thing that has happened for my mom's lung cancer. If you are a newcomer to lung cancer and/or immunotherapy, do know there is hope. My mom has more hope now of surviving cancer than when she was originally diagnosed in 2015. And it is all due to continued lung cancer research and development of new treatment options. My main take away from this last year is: 1) My mom is tough as nails, 2) Even in the darkness of a lung cancer diagnosis, there is hope. Take care, Steff
  5. The main side effect I've had trouble with following seven Keytruda IV treatments, is severe joint pain. My question is... are there any patients or caregivers out there who can recommend a medication to help me with the pain? So far, Ibuprofen and Aleve don't do much to calm down the pain.
  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. I am stage 4 nsclc adencarcinoma, only mutation MEK (non useful at this time) diagnosed 9-6-18 when I broke my right femur. LC was an incidental finding on pre sure X-ray, I was and still am non symptomatic. Started chemo in Oct., Keytruda, Alitma, carboplatin, have had 4 infusions. Pet scan done Friday 1/4/18, got results yesterday before chemo, doc said he had good news and nd bad news. Good news and bad news. The tumors and nodes in lungs somewhat shrunk but now there are new areas in the lungs/nodes that are small but lighting up. There are several areas in my right leg femur bone and in 2 vertebrae that lit up and are suspicious for cancer. That is the leg I broke and has the pin and rod. There are 2 ways to look at it, that these are areas that the cancer has spread to or they were there all the time and now that the keytruda is attacking. I’m not happy about it, was so hoping for shrinkage and would have been happy with no progression. The oncologist said this is a very atypical cancer. He is talking with the group in Denver, the “big dogs” in lung cancer. The plan is to do 2 more rounds of chemo (alitma, carbo and keytruda), today and in 3 weeks and do another pet scan. I guess they stick with the PET scan to compare the before treatment PETscans. I have to go get another brain mri to see if the cancer has gone there. Needless to say I am very worried that the cancer is now spreading and will grow in the next 6 weeks despite continuing chemo cocktail. Just wondering if anyone has any similar experiences? Thank you much, bless, Anne
  8. Hi all, I've been a member for a few months but haven't done a "full" post about my mom as I felt I would jinx the possibility of good news (desperate times call for desperate measures!) I want to write this post to share my mom's journey and possibly relieve someone else's anxiety, while gaining hope and info from all of you. So, here's her story: Overall health: 63 years old, obese, diabetes controlled with diet, sleep apnea, rheumatoid arthritis November 2015 - initial lung cancer diagnosis - NSCLC, stage IIIA. She had shortness of breath which lead to the discovery of a few small nodules. January 2016 - upper right lobe removal - we had to wait so long because my mom has Rheumatoid Arthritis and the meds she was taking at the time had to be out of her system. Surgeon found a few lymph nodes that were involved as well, unable to remove it all. She recovered from surgery quite well. She continues to have pain at the incision site, which we are told is normal. Overall breathing was better than it had been in years (she had a lot of emphysema in the lobe that was removed). February 2016 - 6 weeks of weekly chemo (can't remember which kind) and daily radiation - lost hair, pretty bad acid reflux which became controlled with meds. Some fatigue. Scans & more scans - she received the 1 year "all clear" in April 2017. We thought everything was going well. My mom's pulmonary specialist left, so she met with a newly established specialist. He was looking over her old scans because she was having trouble breathing. He suggested he scope her bronchi and he saw a concerning area he wanted to biopsy. Long story short, she has cancer on the back of her trachea that is hard to see in chest x-rays and CT's. We are thankful someone actually saw it, but frustrated it wasn't found sooner. They are calling it a recurrence, but several doctors aren't convinced it wasn't there the whole time and just did not respond to treatment. Possibility of repeat radiation??? This was an important question I wanted answered because I had seen differing answers during my research. About half of the new mass on her trachea is in the original radiation area. The radiologist says that he can do radiation again in the same area since enough of it is out of the original radiation zone but the likelihood of having severe side effects is very high. I asked about radiation seeds and internal vs. external beam therapy - he said they can all have the same result of increased side effects. He is one who believes the mass was there the whole time and did not respond to treatment in the first place. So he suggested radiation as a last resort if other treatments did not work. July 2017 - trachea stent put in to open airway (mass had airway closed 70%). Surgery was a breeze, she can breathe well. Mom was in and out of hospital after surgery with severe mucus build up. Still has mucus build up. July 2017 - Treatment plan - 8 rounds of Keytruda (she has the PD-L1 mutation), the first 4 with chemo - alimta carboplatin, every 3 weeks. New treatment info: Adding chemo to the Keytruda at the beginning of treatment is having better results than Keytruda alone. This information was released in June 2017 at a national cancer conference. It supposedly brings the effectiveness from 30-50% up to a flat 55%. We will take every small piece of help we can get!!! CT scan will be after the first 4 treatments to see how things are going. Keytruda and Rheumatoid Arthritis: her oncologist is unsure how her RA will react. Her RA has never been under control, so she deals with a lot of pain anyway. They are assuming she will have major flair ups. We will deal with those when they happen. Large doses of steroids and all RA meds can reduce the effectiveness of Keytruda, so we will have to get creative. July and August 2017- My mom is on her 2nd treatment. The biggest side effect is total exhaustion. However, she began her 1st treatment 1 day after spending nearly 3 weeks straight in the hospital. Her oncologist feels that the extreme fatigue is more likely due to recovering from her stent surgery and all of the hospital visits. She still has a lot of mucus and her pulmonary specialist is keeping it "sucked out". She coughs a lot and does not have a voice. We will learn more as we go but so far she's surviving and we feel things will get better with her breathing and fatigue. August 4, 2017 (a day we can (mostly) breathe) - PET scan results show that cancer has not spread (cue happy dance!!). So what now??? We live day by day. I take part in these forums to find support and to give support. After finally receiving the first bit of good news in several months (the cancer had not spread), yesterday was the first day I didn't break down bawling. We are finding our new "normal". She is being silly and laughing more. And in October, we are going to see Jimmy Buffett for the millionth time! I plan to update this post periodically with information that I think is important to share for those looking for information and when I need some advice or a bit of support. I appreciate each and every one of you for your kind words to all that reach out and for fighting to live so we all can have a little more hope at the end of the day.
  9. Hello, this is my first post. My dad was diagnosed with Stage 4 lung cancer, non-small cell, adenocarcinoma the end of July. They found 10-13 lesions in the brain, one area on the adrenal gland , one on the spine , and possibly a small area on the liver. My dad had 2 weeks of radiation on the brain immediately. Before treatment, he got very unsteady and had a drop foot. After radiation, he got most of his coordination back. He had palliative radiation to the place on his spine for pain. Last Monday, my dad's oncologist put my dad on 2 chemo drugs (not sure the names at this time) and ketruda (immunotherapy drug). His oncologist said this was recently approved by the FDA to give both at the same time? I really haven't seen any info about this. I am just wondering if this is a new thing, or are they throwing all of this at my dad at once thinking he don't have much time and this is his best option? Thanks.
  10. hello, following two cycles of cisplatin/ alimta we have just returned from the doctor and after reviewing a chest X-ray, he has recommended that we stop the chemotherapy in favour of starting Keyturda treatments next week. my dad is stage IV NSCLC with a PDL-1 greater than 50%. The chest x-ray showed that his lung is collapsed, likely due to the tumour growing in size and obstructing the vessels. I am eager to hear from other people who have been given this treatment and what your experience was. Dad did not tolerate the chemo well, mostly extreme fatigue, not regaining energy until about 18 days. Surgery and Radiation are not options for him, really hoping that this therapy works for him. best wishes, Stephanie
  11. So my mother who is stage iv with metastasis to liver finally told me the truth about her diagnosis. she originally told me there was one tumor in one lung and a small spot in her liver and they didn't give her any idea of her survival rate. today she told me there are several small spots on 1 lung and then the small one in her liver. she has had 4 treatments of keytruda and the first scan looked good. her doc only did a scan this early because he was concerned because her voice had become hoarse, but he said nothing more is concerning him right now. she is due for another scan in a few weeks and has finally agreed to let me go with her and ask questions. What are some things I should be asking? one thing I want to ask, but maybe it's a stupid question is If the cancer is primarily the small spot in her liver and the small one in her kidney, why isn't surgery an option in the future? if the keytruda can get rid of the cancer in her liver, is a lung removal an option? Why isnt she beng given traditional chemo along with the keytruda as that seems like a common treatment option?She truly feels like she only has 2 years because he mentioned that he can't promise she will be here longer. I've tried to tell her this isn't an expiration date and that he told her that before she was ever tested for keytruda. Am I wrong to give her hope at this stage? She is only 53. She is still very healthy. she goes to work every day and aside from feeling tired after treatment, she seems fine right now. she even gained all her weight back in the last few weeks. Thank you in advance for any suggestions.
  12. http://gisborneherald.co.nz/localnews/2941654-135/call-for-keytruda-drug-for-lung WAITING FOR GOOD NEWS. Cancer patient Alain Jorion is hoping Keytruda will be funded for New Zealanders battling lung cancer. HIGH-profile Gisborne fisherman Alain Jorion is calling for the “wonder drug” Keytruda to be funded for lung cancer patients. “It is my one and only hope,’’ the cancer patient said. Last year Keytruda, after a much-publicised public campaign, was funded by Pharmac, but for people with advanced stage 4 and 5 melanoma only. Mr Jorion and other lung cancer patients around the country are now calling for the drug to be funded for them. “Without funding, it costs $150,000 and would be administered privately in Auckland,” Mr Jorion said. “Amazingly, Keytruda is administered in Gisborne Hospital and funded, but for advanced melanoma.” Mr Jorion said funding Keytruda was for the potential benefit of thousands of New Zealanders who have or would get lung cancer in the future. “After all, it is our greatest cancer killer. The story of Keytruda can be a great story.” A study presented to Pharmac said one in three patients treated with the drug have their tumours shrink or disappear completely. The drug is administered intravenously every three weeks. Keytruda is an immunotherapy drug, which stimulates the body’s immune system to fight cancer cells. Known generically as Pembrolizumab, it was approved by Medsafe this year as a first treatment for lung cancer patients who have the PD-L1 expression of non-small-cell lung cancer (NSCLC) (PD-L1 is a protein expressed by cancer cells to evade the immune system.) The drug’s manufacturer, Merck Sharp and Dohme Limited (MSD), are seeking Pharmac funding, but it is not clear how long that will take. May be a year Mr Jorion believes it might take a year, while friends and a health professional have told him it might be sooner. Paul Smith, MSD New Zealand director, said the Keytruda registration “has the potential to transform the way lung cancer is treated in New Zealand” “Clinical trial results have been so compelling that trial investigators believe Keytruda should replace platinum-based chemotherapy to become the new ‘Standard of Care’ for untreated advanced NSCLC. Philip Hope, chief executive of the Lung Foundation New Zealand, said,“I hope that this medicine will be made available on a funded basis to all New Zealanders with life-threatening lung cancer”. Lung cancer is diagnosed in about 2200 New Zealanders a year and more than 1600 people die from it each year. One in five people diagnosed with lung cancer, like Mr Jorion, have never smoked. Mr Jorion said he wanted to be involved in Keytruda trials. “I have to run with the trial as it’s my only hope really.” His oncologist describes him as “the perfect candidate’’ for the trial as a non-smoker who has not had chemotherapy”. “She said I was in pretty good nick. She will go back to Hamilton and send me the relevant paperwork to enter me into a trial. Trials are back on the agenda. She says this is her best recommendation for now for me.” Mr Jorion has another disappointing issue in that Dr William McCallum who has worked with cancer patients at Gisborne Hospital, Palmerston North Hospital and is curently supervising house surgeons and registrars at Dunedin Hospital and helping Otago University students, is having work visa and immigration issues. Patients using Keytruda He said Dr McCallum had evidence involving 2799 patients who used Keytruda for lung cancer. “He has worked extensively in America, Europe, New Zealand.” He loved Gisborne and would be a great asset to the country. Dr McCallum told the Herald he supported funding for Keytruda for NSCLC in New Zealand. “Although expensive, fortunately we are able to bargain for drug prices in New Zealand and that will make the cost significantly less than what it would be in the US. “Keytruda was originally brought on the market for melanoma but even though its original indication was for melanoma, studies were being done for its use in other cancers, particularly NSCLC. “It is now being studied for other types of cancers. I say that because it is important to know that many of the new immunotherapies are being used in various other cancers. “Keytruda is also now known to be more effective in NSCLC when used with classical chemotherapy. “This information came out of the recent world-wide oncology conference (ACOG) in Chicago in June. “It is important to remember that cancer is not ‘a’ or ‘one’ disease, rather, as we are finding out more every day, a disease that is a normal cell that has mutated, that unless stopped will grow without interference. “Now, more and more we are able to look at the specific genetic traits of these cells and find ways to stop them,’’ said Dr McCallum. Praise for Gisborne Hospital He had high words of praise for Gisborne Hospital. “When I worked there, I was very happy with what we could do there and I think we did a very good job and I think they still do. “The nurses and support staff are fantastic and the doctors I worked with were caring and capable. “I have stated that to folks in Gisborne who thought maybe it wasn’t such a great place, we can always improve, but we have nothing to apologise for.” Dr McCallum said he understood and agreed with controls that had to be placed on expensive drugs like Keytruda. “However, when one has a patient like Alain, a non-smoker and someone who has lived a very healthy lifestyle, then he is the ideal patient. “Alain is an excellent candidate for Keytruda and, I would argue chemotherapy, as he is chemotherapy naive and has been in complete remission until recently. “Alain is one of the kindest, gentle and smartest people that I know, and he is a great fisherman.”
  13. Hello - My mom (non-smoker, 75 years old, otherwise in perfect health) was diagnosed with stage 4 NSCLC in mid-April. She was extremely active, in great shape and only discovered her cancer because she started becoming extremely short of breath and lightheaded while playing tennis (which she had recently picked back up). After all the tests, biopsy and scans, we found out the tumor was small (two centimeters) in her right lung and two nearby lymph nodes in the hilar region. She also had moderate pericardial effusion (fluid around her heart) and her PET scan showed a small spot on her liver (again, about 2 cm). She started chemotherapy (carboplatin and alimta) on May 1st and has had five treatments so far. Scans after the first three treatments showed a minor shrinkage of the lung tumor, lymph nodes and fluid around her heart and a dramatic decrease in the liver spot (reduced by half). That was all good news! After her fourth chemo treatment, she suffered from a very low platelet count and had to take an additional week to recover. Then after her fifth treatment her hemoglobin and platelets dropped so low that she was extremely lightheaded and short of breath after only being on her feet for a few minutes at a time. After telling her doctor several times and not getting a response, I finally put my foot down and called and insisted he do something since it sure sounds like she was anemic (based on my google research). Sure enough he agreed and she received two units of blood on Friday and feels much better, also, the doctor ordered another CT scan of her chest that same day to make sure there wasn't a clot or infection that might be causing this. The doctor called and said there is no clot but the mass on her lung looks one centimeter larger. He is not sure if the larger mass is the tumor growing or inflammation. Now his plan moving forward is to take her off the Carboplatin since it's wrecking her bone marrow and keep her on the Alimta that they call "maintenance" and then rescan after a few treatments. I asked why keep her on this if the tumor could be growing and asked about Keytruda (again... see below). He said he is going to take this issue to the tumor board but that he wants to do one thing at a time because older patients can have harder times with immunotherapy. (i can't help but feel he is giving up on her because she is 75 years old). When Keytruda was recently FDA approved as a first line treatment for all adenocarcinoma patients regardless of their PD-L1 (my mom tested positive for PD-L1 at 30%), she had just started chemo. I called him and asked if he would add this to her second treatment and at the time he said he probably would, but on the day of her labs, he told us he decided not to add Keytruda to her treatment plan because the side effects could be too much. He also claimed the study that caused Keytruda to get FDA approval in combination with chemotherapy was just a small study and the data was not strong enough. He said this to me again today when I asked if we could add Keytruda. I have been watching these boards since my mom was diagnosed and I would welcome any feedback or suggestions anyone has that can help me advocate for my mom, who I know has a lot more life left in her. The chemo is beating her up, but she's not ready to just go into maintenance mode and succumb to the cancer. What else can be done? Should I push the doctor to come up with another plan that might include an immunotherapy drug? Thank you so much for any advice you have!
  14. Hi. My mom was recently diagnosed with lung cancer, well, they did a biopsy and found cancer in her lung. we don't know yet the stage or origin. she is a long time smoker, but only 53. I am really hoping they found it early, even though I know that is rarely the case. My question today is she has an appointment set and it lists 3 different departments she is meeting with. Radiation/Oncology, Hematology/Oncology, and behavioral medicine. the radiation oncology is obvious , but can anyone tell me what roles the other 2 have in treatment of lung cancer ?
  15. Hello, I have been reading through discussions and posts on here for the last week and it has been a fantastic resource - so much caring and first hand experience and knowledge... it's really a great place. I am here because my father was diagnosed with Stage iv NSCLC with mets to the brain, back on October 25th. He is 67 years old and the diagnosis came quite by accident. He had fallen off of an unstable ladder while changing a light fixture and both his chest and head were impacted from the fall so an X-ray and CT scan were done to rule out breaks. Turned out that they found a lesion on the lung and a spot on his brain. We were all surprised as he had not been experiencing any symptoms. Please bear with me and excuse the lengthy write up - so much has happened in the 9 weeks ... He had a lung biopsy done week of October 24th and in the meantime, we started consultations for Stereotactic Radiation for the small brain tumour (as this needed to be treated right away). Nov. 4th - we met with his general oncologist to review the biopsy results only to be met with the news that they had not been able to gather a good enough sample in order to get the information required to put together a treatment plan. Since we were going to treat the brain first, the biopsy result was not so urgent (as he would not start any chemo until after the brain radiation. Nov. 16th - he underwent the stereotactic radiation treatment. He will go back for a follow up MRI on January 16th to see how the tumour was affected. Dec. 2nd - another meeting with his oncologist to review biopsy results and also review a recent chest scan that had been done earlier in the week. Biopsy confirmed NSCLC Adenocarcinoma (assumed to be wild type, but hey were still awaiting genetic testing results). The review of the scan showed very little change in the size of the tumour. Due to the imaging, the fact that my dad was still not experiencing symptoms and the fact that we were still waiting on some of the biopsy results, the decision was made to not proceed with any treatment, but to wait another two weeks until we had all results in. Dec.16th - Latest testing confirms that there is no presence of EGFR mutation but shows that the tumour does have a PDL-1 expression of greater than 50%, which meant that aside from standard chemotherapy, Ketruda was also an option for treatment. Although, not available under healthcare until a 2nd line setting. Again, seeing as Dad was not experiencing symptoms and it being so close to the holidays, we decided to wait until the new year to decide on the best approach to treatment. (Note: we were considering the private route for first line treatment with Keytruda). We were not due to see the doctor again until January 10th Dec. 20th - My Dad coughed up blood for the first time since being diagnosed. Dec. 22nd - Back to see the doctor to let him know that we felt it necessary to start a treatment right away and based on details from the previous appt., (treatment being more tolerable, outcomes a little more favourable) felt that Keytruda was the right approach and planned to access it via a private infusion clinic. The doctor recommended Cisplatin/ Alimta as a first attempt at treatment based on having the resources of the hospital team available to him and also knowing that Keytruda would be an option for 2nd line. Note: This is the only dr. appointment that I was not able to attend so I did not have the opportunity to ask all of the questions that I wish I could have. To Come- My Dad will have a first round chemotherapy treatment (of Cisplatin and Alimta) on January 6th. Based on my reading, I see that Cisplatin is of the more aggressive/ harsher/ less tolerated treatments. I would be interested in hearing of anyones experience with it. Has anyone here had Keytruda as a first line treatment and what was your experience with that? Also - it's been a long time since the lung cancer diagnosis ... without treatment - Has anyone else had a similar experience where treatment has been delayed due to other circumstances and what was your outcome? I wish you all a happy and healthy 2017. Thank you for your time and input. Stephanie
  16. Hi all and thank you in advance for the information and support. My 74 year old mother was diagnosed in June 2016 with stage 4 NSCLC. (Adeno-C, no mutations) upper left lobe tumor with a small lesion in the brain. Because the objective of care was palliative she did not take platinum based chemo and instead went on Alimta (only). She had targeted radiation to the brain (cyberknife) Oct scans were stable, additional scans in December showed progression. Lungs and now liver. She just started keytruda this week. Her pDL =80% She's quite frail and sleeping a ton. I would be interested in hearing from others on Keytruda. I have done all the research and hear promising things but fear her cancer has spread too much/too far. Just looking for any hope or inspiration here. Thank you all so much stephanie
  17. Edward Garon, MD, of UCLA joins the LUNGevity Foundation Scientific Advisory Board Dr. Garon brings expertise in clinical trials and other key areas to LUNGevity’s research program FOR IMMEDIATE RELEASE Media Contact: Austin Courtney acourtney@susandavis.com (202) 414-0791 WASHINGTON, DC (January 13, 2017) – LUNGevity Foundation, the nation’s preeminent lung cancer research foundation, today announced that Edward Garon, MD, has joined LUNGevity’s Scientific Advisory Board, a group of 19 world-renowned scientists and researchers who guide LUNGevity’s scientific strategy and research program. The Scientific Advisory Board is integral to the Foundation, overseeing the scientific approach and ensuring that grants are awarded to the researchers whose proposals demonstrate the greatest potential for finding lung cancer at its earliest, most treatable phase, as well as extending and improving lives for lung cancer survivors. LUNGevity is the only lung cancer organization with programmatic focuses on early detection and Career Development Awards. LUNGevity-funded researchers are working on finding a better way to detect lung cancer, and to better diagnose, treat, and prevent its recurrence. The research program is a crucial factor in moving the science forward to improve outcomes for people living with lung cancer. Dr. Garon is the Director of the Thoracic Oncology Program at the Jonsson Comprehensive Cancer Center at UCLA and Associate Professor of Medicine in the Division of Hematology-Oncology at David Geffen School of Medicine at UCLA. He has been the principal investigator of peer-reviewed grants from various funding organizations, including the National Cancer Institute. His focus is on clinical research and biomarker development. He has served as the principal investigator on national and international phase I, II, and III clinical trials. Among these are trials that have led to the approval of drugs for the treatment of non-small cell lung cancer, including ramucirumab (Cyramza®) and the immunotherapy pembrolizumab (Keytruda®). “We are honored that Dr. Garon has joined our Scientific Advisory Board,” said Andrea Ferris, President and Chairman of LUNGevity Foundation. “His expertise and advice will be invaluable to furthering LUNGevity’s goal to improve outcomes for lung cancer patients.” Click here to read the complete press release on LUNGevity.org.
  18. 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.
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