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    WhatNextEmails asked a questionCancer

    This question was emailed to us: Has anyone developed a nervous tick or habit since diagnosis?

    • GregP_WN's Avatar
      GregP_WN

      Not really a habit or tick, but I have to make a growling or gargling noise when I eat sometimes to get things to go down. It's exciting to be around me sometimes when I'm eating.

      20 days ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      I haven't. I've had involuntary muscle movements for years before chemotherapy.

      20 days ago
    • SandiA's Avatar
      SandiA

      My face moves on the right side when I am nervous. Pre cancer the last time I noticed it was when I had an interview for a new position at my school. Never gave it much thought after that, but I have noticed it will happen often when I am having scans especially a MRI. The actual scan doesn’t make me nervous but I think it might be just the thought of what they may find. Not sure but it almost always happens when I go in the machine. I keep waiting for them to tell me to stay still but I honestly can’t help it.

      17 days ago
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    Targeting Cancer-The dawn of precision medicine
    INNEA OLSON tells her story—of repeatedly facing death, then being saved by the latest precision therapy—articulately and thoughtfully, agreeing to discuss subjects that might otherwise be too personal, she says, because it could benefit other patients. She lives in an artist cooperative in Lowell, Massachusetts, in an industrial space, together with her possessions and artwork, which fill most of an expansive high-ceilinged room. Olson is tall, with close-cropped, wavy blonde hair, and dresses casually in faded blue jeans. Although she has an open, informal style, this is paired with a natural dignity and a deliberate manner of speaking.

    “I had a young doctor who was very good,” she begins. “I presented with shortness of breath and a cough, and also some strange weakness in my upper body. And he ordered a chest x-ray.” Years later, she saw in her chart that he had written, “On the off chance that this young, non-smoking woman has a neoplasm”—the beginnings of a tumor in her left lung. But he didn’t mention that to her, and “he ended up getting killed on 9/11—he was on one of the planes that hit the towers.”

    The national tragedy thus rippled into Olson’s life. Never suspecting that her symptoms could be caused by cancer, she spent the next several years seeking a diagnosis. A string of local doctors told her it was adult-onset asthma, hypochondria, then pneumonia. When antibiotics didn’t clear the pneumonia, a CT scan showed a five-centimeter mass in her left lung: an infection? Or cancer? It was the first time she had heard that word. The technicians told her that at 45, she was too young for that. But a biopsy confirmed the diagnosis. “In 2005, when you told someone they had lung cancer,” a doctor later told her, “you were basically saying you were sorry.” Her youngest son was seven at the time. Olson wanted to live.

    Now, 13 years later, she is alive and healthy, a testament to the potential of precision medicine to extend lives. But like precision medicine itself, her story encapsulates the best and worst of what medicine can offer, as converging forces in genetics, data science, patient autonomy, health policy, and insurance reimbursement shape its future. There are miraculous therapies and potentially deadly side effects; tantalizing quests for cures that come at increasingly high costs; extraordinary advances in basic science, despite continuing challenges in linking genes implicated in disease to biological functions; inequities in patient care and clinical outcomes; and a growing involvement of patients in their own care, as they share experiences, emotions, and information with a global online community, and advocate for their own well-being.

    Precision medicine is not really new. Doctors have always wanted to deliver increasingly personalized care. The current term describes a goal of delivering the right treatment to the right patient at the right time, based on the patient’s medical history, genome sequence, and even on information, gathered from wearable devices, about lifestyle, behaviors, or environmental exposures: healthcare delivered in an empiric way. When deployed at scale, this would, for example, allow doctors to compare their patient’s symptoms to the histories of similar patients who have been successfully treated in the past. Treatments can thus be tailored to particular subpopulations of patients. To get a sense of the promise of precision medicine—tantalizingly miraculous at times, yet still far from effective implementation—the best example may be cancer, which kills more than 595,000 Americans each year.

    See complete Article Here - From Harvard Magazine
    https://harvardmagazine.com/2018/05/precision-medicine-cancer

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    WhatNextEmails posted an update

    Lymphoma News Today Sent This Out to be Shared

    Rich’s RP-323 Shows Activity Against Hodgkin’s Lymphoma in Phase 1 Trial

    Experimental therapy RP-323 has shown anticancer activity against Hodgkin’s lymphoma in a Phase 1 trial. Its developer, Rich Pharmaceuticals, is now planning to evaluate the therapy in human clinical trials for the disease.

    “We look forward to being able to commence clinical trials in the future to prove that using RP-323 alone or in combination with other anticancer agents will have significant therapeutic activity against Hodgkin’s lymphoma,” Ben Chang, CEO of Rich Pharmaceuticals, said in a press release.

    RP-323 is a natural molecule isolated and purified from croton oil, which is obtained from the seeds of the purging croton, a plant native to Southeast Asia.

    The investigative therapy not only modulates cancer cell behavior, including their survival and growth, but it also promotes immune cell proliferation. This suggests it could work as an immunotherapy to boost the immune system. Given its broad effect, RP-323 represents an attractive option to target cancer.

    A Phase 1 study (NCT00004058) evaluated the anticancer potential of ascending doses of RP-323 in patients with relapsed or refractory blood malignancies or bone marrow disorders.

    The trial, led by Roger Strair, MD and PhD, oncologist at The Cancer Institute of New Jersey, included 35 patients. Participants received RP-323 infusions for five days over two consecutive weeks, followed by a two-week resting period before another treatment cycle.

    Only one patient — with relapsed or refractory Hodgkin’s lymphoma with a chest wall lesion — responded to the treatment. After three weeks of treatment with a 0.063 mg/m2 dose, the tumor had reduced from 7 cm to 2.5 cm in size. However, the tumor mass increased in size later on and treatment was stopped.

    “A phase 1 clinical trial conducted at The Cancer Institute of New Jersey [has] shown that RP-323 treatment reduced a palpable tumor mass after three weeks in a patient with Hodgkin’s lymphoma,” Chang said.

    While the patient relapsed in the trial, researchers believe the therapy candidate may have potential for Hodgkin’s lymphoma, supporting Phase 2 clinical studies.

    Results from the trial were published in the journal Cancer Chemotherapy and Pharmacology, in the study “A Phase I clinical trial with 12-O-tetradecanoylphorbol-13-acetate for patients with relapsed refractory malignancies.”

    Rich Pharmaceuticals has also tested RP-323’s safety and efficacy in patients with relapsed or refractory acute myeloid leukemia and myelodysplatic syndrome — a group of blood disorders where immature blood cells never reach a fully mature state.

    https://lymphomanewstoday.com/2018/03/20/rp-323-shows-activity-against-hodgkins-lymphoma-phase-1-trial/?utm_medium=desktop-push-notification&utm_source=Notifications&utm_campaign=OneSignal

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    WhatNextEmails asked a questionCancer

    We have gotten a few emails asking what the expected cost might be for certain procedures.

    4 answers
    • GregP_WN's Avatar
      GregP_WN

      To show you how wildly the price will fluctuate, a simple chest X-ray at my local facility is $200.00, while at a major University Medical Center that I go to, that same X-ray is $50.00 and I would much rather go to the larger facility. Even if it's over 2 hours away.

      2 months ago
    • biga17133's Avatar
      biga17133

      Well seeing how im looking at it right now i'll list some of the ones on my bill..

      1.Hc complete blood count with diff----- $209.00 x's 2
      2.Hc comp Metabolic panel GFR--------- $377.15 x's 2
      3.Hc Tsh ----------- $288.20 x's 2

      Total $ 1,748.30

      1. Hc Pembrolizumab 100 mg $31,175.50 x's 2
      2. Hc Diphenhydramine HCL 50MG/ML vial $20.00 x's 2
      3. Hc Zoledronic Acid 4MG/5ML Zometa $232.50 x's 4.

      Total $62.623.50

      1.Hc Chemo IV Infusion 1st hr $ 943.95 x's 2

      Total $1,887.90

      TOTAL Charges . $66,384.95

      MY Insurance Paid $59,869.87
      My cost out of pocket $6,525.08

      This was just for 2 treatments of chemo I could go on with other Bills but this the every 6 week bill ,the other bills are for check ups MRI, PETS, CT Doctor visits bills which can very depending on who i'm seeing..

      now my Pills are free sense i too have met my deductible and out-of-pocket costs,thank god,,lol still taking a bath by myself biga17133

      2 months ago
    • WoodsRLovely's Avatar
      WoodsRLovely

      For my PET scan, the list price was $90,000 and insurance paid about $45,000 - we were not charged. For my Brentuximab infusions (which by the way did not work) the cost was $68,000 PER infusion. I mean, really? Seriously? There is something so wrong with all of this...my insurance picked it up luckily. But my husband lost his job and now we need to pay for COBRA and the monthly cost is $1700 to get the same level of coverage as before. We need this type of insurance since I will be in treatment for the next several months and need to do a stem cell transplant. I freelance and can still work luckily...but it's difficult to work on the days of infusions, of course. As if cancer wasn't bad enough, right?

      2 months ago