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KatieB last won the day on August 16

KatieB had the most liked content!

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About KatieB

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    VP Support & Survivorship Programs, LUNGevity
  • Birthday May 25

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  1. Don't help me. I am a fiercely independant woman. i am a survivor. I am strong. I will beat this (insert cancer type/condition here) and my life will inspire others. If I show weakness then it wins. I will get up everyday and tackle the world. I will do my hair and put on lipstick and look as amazing as I can so no one will know that I am "sick". I will not ask anyone for help. I will carry all of the groceries into the house. I will change the water bottle on the water cooler. I will carry packages to Fex Ex. I will walk the dogs. I will drive myself to scan appointments and blood draws and biopsies. I will wash and dry laundry and I will never miss a single day of work. Please help me. I get up everyday in pain. It takes me longer these days to do my hair and put on my lipstick. I carry all the groceries into the house and I have to sit, catch my breath before I put them away. I wait until I am practically dying of thirst before I change the water bottle on the cooler. I carry the heavy packages into Fed Ex one 5 pound box at a time. I no longer walk the dogs- that's what the doggy door is for. I drive myself to scan appointments and wring my hands and bounce my leg because I am afraid of bad results. I drive myself to biospies and sometime I cry when I'm alone and putting my clothes back on. I can take laundry for 4 people up the stairs and put them away, but my body will hurt for two days after. I never miss a single day of work- but sometimes I am working from my bed. It's easier for me to help others than it is to help myself. While I want to do everything myself- there are times that I get really annoyed if those I love don't offer to help me. To their credit how can they know I need help when I don't look or act "sick"? Ask me.
  2. So much so fast...

    Sherri, sounds like you have a good treatment plan and a great family supporting you. We remain here for you too. Keep posting, It really does help. Best hopes, KatieB
  3. Pet scan shows it's back

    Your dad sounds a lot like how mine was (not coming to this site, etc..) as a doctor he may know well enough to avoid situations where he will read something negative or not encouraging to his situation- he may also want to give you your space to get support, etc... Find some inspirational stories and print them off for him to read. You can also visit the clinical trial navigator and trial finder app to find trials for those with small cell and print those off for him (or his doctor) to read. My dad found that helpful. I don't have more to add that Tom hasn't already said. Please know that we are here for you. Keep posting. It helps, Best hopes, KatieB
  4. August 15, 2017 https://www.healio.com/hematology-oncology/lung-cancer/news/in-the-journals/{2febb384-604e-4805-8094-f89e7e2646e7}/liquid-biopsy-offers-option-for-egfr-testing-without-lung-tumor-tissue Blood assays identified EGFR mutations in patients with advanced non-small cell lung cancer with insufficient tumor biopsies, according to a prospective analysis published in Annals of Oncology. “The clinical benefits of tyrosine kinase inhibitors in stage IIIB to IV NSCLC patients carrying sensitizing mutations in the EGFR gene are well established, and EGFR testing in tumor tissue has become a routine clinical practice,” Miguel Angel Molina-Vila, BSc, PhD, laboratory director of Pangaea Oncology at Quirón Dexeus University Hospital in Barcelona, and colleagues wrote. “However, 5% to 20% of advanced NSCLC patients cannot be biopsied or the tumor tissue in biopsies or cytological samples is insufficient for successful genetic analysis.” Studies have explored whether circulating-free DNA from serum or plasma of patients with advanced NSCLC can be used to reliably determine EGFRmutations. However, there have been no studies of patients treated with TKIs based only on a positive EGFR result in blood. Molina-Vila and colleagues analyzed EGFR mutations in the circulating-free DNA of 1,138 patients with stage IIIB to stage IV NSCLC using a real-time polymerase chain reaction assay. Because no commercial kits were available at the time testing commenced, researchers developed and validated a PNA-Q-PCR assay for the detection of mutations in exons 19, 20 (p.T790M) Search and 21 (p.L858R and p.L861Q). “The assay is simple, not more expensive than tissue analysis, has a short turnaround time and its limits of detection, sensitivity (75.9%) and specificity (100%) are in the range of other reported methodologies,” the researchers wrote. “The main limitation of the assay is that it cannot detect the relatively infrequent mutations in exon 18 of EGFR.” The goal of the study included to determine if this method may be used as a surrogate to select patients with no biopsy or insufficient tumor tissue for treatment with EGFR TKI therapy. In total, 1,033 patients underwent prospective testing at disease presentation, of whom 1,026 were evaluable (men, 55.8%; former smokers, 46.8%). Of them, 113 (11%; women, 66.4%; never smokers, 63.7%) has a sensitizing mutation in circulating-free DNA, including 75 with exon 19 deletions and 38 with exon 21 point mutations. Thirty-one patients were positive only in plasma and 11 in only in serum. The researchers measured concentration of DNA using Qubit (Thermo Fisher Scientific) to evaluate the blood samples of a subset of patients with EGFRmutations (n = 40) and wild-type EGFR (n = 40). More than 60% of circulating-free DNA samples contained less than 10 pg mutant genomes/l. Researchers then determined mutation load in 149 serum and plasma samples from 91 patients with EGFR mutations. More than 50% of samples contained less than 10 mutated genomes/µl with allelic fractions below 0.25%. Median mutation load appeared higher in plasma than serum samples (0.23% vs. 0.12%), and in samples positive for exon 19 compared with exon 21 deletions (0.26% vs. 0.07%). In addition, 105 patients who progressed following EGFR TKI therapy also underwent prospective screening. The assay detected sensitizing mutations in 56.2% of these patients and the p.T790M resistance mutation in 35.2%. The researchers retrospectively collected clinical information from 18 patients treated with TKIs based exclusively on the results of the EGFR testing in blood. Thirteen patients achieved a partial response for an overall response rate of 72%. Median PFS was 11 months. Duration of response ranged from 5 months to 18 months in eight patients who had available data. Two patients who harbored a p.L858R mutation progressed after 5 and 8 months, whereas the duration of response range from 7 months to not reached in the six patients who harbored exon 19 mutations. “Some of the patients identified as EGFR positive, based solely on the results of the PNA-Q-PCR assay, showed remarkable responses to targeted therapy,” Molina-Vila and colleagues wrote. Although blood assays proved to be a feasible alternative to tumor biopsies, the researchers noted this method will not become the standard of care. “’Liquid’ biopsies will never replace tumor biopsies, which constitute unique sources of information that cannot be obtained by any other means,” they wrote. “However, our results demonstrate that prospective EGFR analysis in blood can be used to select patients for TKI therapy when no tumor tissue is available for genetic testing.” – by Kristie L. Kahl Disclosure: Molina-Vila reports he has no relevant financial disclosures. Please see the full study for a list of all other researchers’ relevant financial disclosures.
  5. Biomarker Testing

    Having enough tissue available for biomarker (aka mutation, genetic, or molecular) testing can also be an important consideration. Before a biopsy is done, the patient should speak with his or her oncologist about having the tumor sample profiled. To find out if targeted cancer therapy makes sense for an individual with lung cancer, that person’s tumor tissue will be tested. The goal is to determine whether or not an appropriate target is present. The following video describes diagnostic testing for mutations in lung cancer.
  6. Treatment break from Xalkori

    Hi evergreen, I have supported a few patients who took a treatment break due to side effects. They didn't return to Xalkori though. They were watched closely by scans and once they had progression they moved onto the next line of targeted therapy. How are you doing? Please post with an update. We are here for you. Best hopes, KatieB
  7. It’s an exciting time to be in cancer research and to watch some of these therapies move rapidly from clinic to improving the lives of patients. Sponsors play an important role during development by spearheading innovation, staying flexible, and planning accordingly for the rapid pace. Read more: http://medcitynews.com/2017/08/precision-medicine-immunotherapy-influencing-clinical-trial-design-cancer-drugs/
  8. Call for Keytruda in NZ

    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.”
  9. Patients' Gray Hair Turns Dark After Immunotherapy for Lung Cancer A surprising side effect of lung cancer treatment is turning heads. BY MINDY WAIZER Cancer treatments can have some terrible side effects. But one recent immunotherapy treatment for lung cancer has turned up a surprising — and not unwelcome — result. The patients’ gray hair turned significantly darker. The study, which was published in JAMA Dermatology, examined 14 patients who have non-small cell lung cancer (NSCLC) and were receiving immunotherapy treatments including one of the following agents: Opdivo (nivolumab), Keytruda (pembrolizumab) or Tecentriq (atezolizumab) at a hospital in Spain. Adverse effects of these kinds of treatments are likely to include cutaneous toxic side effects or dermatological problems, so the patients were being monitored by dermatologists. What doctors didn’t expect to see was that over the course of the treatment, the patients’ hair returned to youthful-looking, darker shades — the shades the patients’ hair had been before their hair turned gray. The average age of the patients was 65. Hair repigmentation is very rare. It has been reported before in relation to drugs such as Thalomid, for example, but it has never before been reported in relation to immunotherapy treatment for lung cancer. The reason for the darkening of patients’ hair color in these cases is still unclear. The number of patients in this study is small, and of course, more studies must be conducted. “This was totally unexpected, so it was exciting,” Noelia Rivera, M.D., dermatologist, Department of Dermatology, Hospital Universitari Germans Trias i Pujol, one of the authors of the study, said in an interview with CURE. “The high rates of good response to therapy in these patients was also an exciting finding. We are surprised at the results, and we are encouraged to keep on with the study,” she said. Thirteen of the 14 patients responded well to the immunotherapy treatment, reporting either partial or fully stable disease states. One had to stop the therapy after four cycles of treatment because of a life-threatening progression of the disease. The dual, positive implications of this study could be far-reaching. First, of course, it is good news for many patients with lung cancer, who may be able to benefit from these effective therapies. Second: just imagine if researchers could isolate the method for turning back the clock on graying hair. A whole new wave of age-defying hair solutions could be born. Rivera urges a cautious approach to the news of these patients’ hair repigmentation. “A lot of research is yet required, first to come up with a study, and after that, to get funding to develop the project,” she said. http://www.curetoday.com/articles/patients-gray-hair-turns-dark-after-immunotherapy-for-lung-cancer
  10. An updated ASCO clinical practice guideline clarifies the appropriate use of immunotherapy and provides new recommendations on the use of targeted therapy for patients with stage IV non-small cell lung cancer. https://www.healio.com/hematology-oncology/lung-cancer/news/in-the-journals/{e2dd9827-3259-4b42-9154-b7828218d5f5}/asco-updates-guideline-on-systemic-therapy-for-non-small-cell-lung-cancer
  11. the news is encouraging. As with most cancer treatment, managing side effects are often the challenge. You may want to check into additional palliative care (not hospice but supportive care) for your dad to help wtih fatigue, nausea, nutrition, physical therapy, pain management, etc... If his treatment facility offers it, it's worth checking into and can help keep him strong while he "waits". https://www.caregiver.org/understanding-palliativesupportive-care-what-every-caregiver-should-know Please continue to keep us posted as we are keeping you in our thoughts. Best hopes, KatieB
  12. new diagnosis

    continuing to keep you in my thoughts Julie. Have you moved forward with treatment yet? Best hopes, KatieB