Super ASK Patient: Carla Takes Charge of Her Own Lung Cancer Treatment


In the fall of 2014, I experienced an unusual dry cough with nasal drain, and was just not feeling like myself—someone who rarely got sick. My general practitioner performed several tests that revealed nothing, and lung cancer was never suspected because I hadn’t been a smoker and had no family history.

By the following summer, when I developed shortness of breath, I was tested again, was told I had asthma, and received a prescription for steroid treatment. Only then did I take charge of the situation, question my doctor, and ask for a chest X-ray, which showed a three-by-four-inch tumor in my right lung. In October of 2015, I was diagnosed at age 53 with stage 4 non-small cell lung cancer (NSCLC). I had a pleural effusion, and my cancer had the mutations EGFR +ve and exon 19 deletion.

Needless to say, I was shocked…and it seemed ludicrous to me to accept the grim prognosis of 9 to 12 months, as if every patient was the same. After researching this deadly disease, I refused to accept a short life expectancy based solely on historical data. Lung cancer research had been disproportionately underfunded and little progress had been made for decades. But things had advanced substantially in the last five years, so it was time for new statistics!

Carla with her husband and son in Panama

After five days of radiation, I was prescribed afatinib (often sold under the brand name Gilotrif). This was effective for three years, during which I was blessed with an excellent “normal” quality of life. Now I am on Tagrisso (generic name osimertinib), which is working well, and thankfully, without side effects.

My advice to any cancer patient is to take control…it is YOUR life! I have changed hospitals three times and am fortunate to have sought out an amazing oncologist who is compassionate, knowledgeable, and proactive, always welcoming my input. I partnered with the best naturopath in the province, who specializes in cancer and guided me towards the most effective supplements and adjuvant therapies. While I live and have received most of my treatment in Canada, I also researched international alternative treatments and travelled to Cuba several times for Vaxira vaccines. And I found Emma at Cancer Commons, who has been a wonderful support and incredible resource.

I would also advise any patient to listen to your body and always go with your gut. Though I had no symptoms, 1.5 years after diagnosis I felt I should have another brain MRI “just in case.” Lo and behold, it revealed four small brain metastases, which were immediately and successfully Gamma Knifed and have not returned.

Carla and extended family in Mexico

A year after that, my CT scan showed “thickening of the omentum” and growths on my ovaries, which my gynecologist did not think was related to the NSCLC. I persevered and requested surgery, which discovered and removed tumors in my abdominal area. These proved to be metastases from NSCLC. They tested positive for the necessary resistance mutation (T790M), which allowed me to start my second targeted therapy (Tagrisso). I have been taking this drug since October 2018, and I am doing very well now.

Lastly, I advise any cancer patient to surround yourself with positivity. Read stories about cancer survivors. Talk to people who have open minds and are optimists. And most important, allow yourself to have HOPE!

Travelling has always been my passion, and this health “scare” has made that a bigger priority than ever. I have taken advantage of the companionship of friends and family and experienced over a dozen fabulous adventures since my diagnosis just over three years ago. Do more of what you love!

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Super Patients are cancer survivors who learned to be more engaged in their own care. Cancer Commons believes every patient can be a Super Patient or benefit from a Super Caregiver or Super Advocate. We hope these stories will provide inspiration and hope for your or your loved one’s own treatment journey.


New Approach to Treating Glioblastoma Could Add Years to Patients’ Lives

Excerpt:

A new way of treating glioblastoma — the deadly brain tumor currently ailing Arizona Sen. John McCain — with a personalized vaccine is giving some patients in a clinical trial more time.

“The vaccination, called DCVax-L, is made out of a patient’s own cells and uses them to jumpstart the immune system and attack the tumor. In the trial, some patients survived for more than 36 months — more than a year and a half longer than current life expectancy after glioblastoma diagnosis.”

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If you’re wondering whether this story applies to your own cancer case or a loved one’s, we invite you to use our ASK Cancer Commons service.


Study Evaluating VBI-1901 Enrolling Recurrent GBM Patients in Second Dose Group

Excerpt:

“An Independent Data and Safety Monitoring Board (DSMB) unanimously recommended that the Phase 1/2 clinical trial evaluating VBI Vaccines’ VBI-1901 continue to enroll patients with recurrent glioblastoma (GBM) in a second study arm.

“The positive review recommended the study continue without modification, after scanning through all safety data from the first group of patients, who received the lowest VBI-1901 dose. Enrollment now has commenced for the second, intermediate-dose study arm.”

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If you’re wondering whether this story applies to your own cancer case or a loved one’s, we invite you to use our ASK Cancer Commons service.


100% of Prostate Cancer Patients Completing 31-Week Post-Therapy Exam After Treatment with OncBioMune Immunotherapy Show No Disease Progression

Excerpt:

“OncBioMune Pharmaceuticals, Inc. (OTCQB:OBMP) (“OncBioMune” or the “Company”), a revenue-stage biopharmaceutical company engaged in the development of a proprietary immunotherapy cancer vaccine technology, targeted cancer therapies and commercialization of a portfolio of products internationally, is pleased to provide the latest data from the Company’s successfully completed Phase 1 trial of ProscaVax for prostate cancer, suggesting a durable response 31 weeks post-therapy.

“In the Phase 1 clinical trial, hormone-naïve and hormone-independent recurrent prostate cancer patients with increasing prostate specific antigen (PSA) were treated with six intradermal injections of ProscaVax. ProscaVax is OncBioMune’s novel immunotherapeutic cancer vaccine consisting of a combination of prostate cancer associated PSA with the biological adjuvants interleukin-2 (IL-2) and granulocyte-macrophage colony-stimulating factor (GM-CSF).”

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If you’re wondering whether this story applies to your own cancer case or a loved one’s, we invite you to use our ASK Cancer Commons service.


ACT IV: Rindopepimut Not Effective for Glioblastoma

Excerpt:

“The phase 3 study ACT IV showed that rindopepimut, an investigational vaccine against EGFRvIII, did not improve outcomes when added onto temozolomide (Temodar, Merck), the current standard of care. The combination of rindopepimut plus temozolomide provided a median survival of 20.0 months compared with 20.1 months for temozolomide alone in patients with newly diagnosed EGFRvIII glioblastoma and minimal residual disease (MRD) after surgical resection and adjuvant chemoradiation.

“The announcement that the trial results were negative was made some time ago, but full details of those results were published online August 22 in Lancet Oncology.”

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If you’re wondering whether this story applies to your own cancer case or a loved one’s, we invite you to use our ASK Cancer Commons service.


FDA Awards Orphan Status to Brain Cancer Vaccine Developed at Roswell Park Cancer Institute

Excerpt:

“The U.S. Food and Drug Administration has awarded orphan drug status to a promising immunotherapy vaccine developed at Roswell Park Cancer Institute. The FDA notified MimiVax LLC, a Roswell Park spinoff company, on Aug. 3 that its application for orphan status for SurVaxM as treatment for glioblastoma, a type of brain cancer, had been approved.

“Orphan status is a special designation awarded to encourage innovation and exploration of approaches to treat rare diseases that affect relatively few people. SurVaxM, also known as DRU-2017-5947, is an immunotherapy drug that targets survivin, a cell-survival protein present in most cancers.”

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If you’re wondering whether this story applies to your own cancer case or a loved one’s, we invite you to use our ASK Cancer Commons service.


Personalised Vaccines Hold Cancer at Bay in Two Early Trials

Excerpt:

“A novel class of personalised cancer vaccines, tailored to the tumours of individual patients, kept disease in check in two early-stage clinical trials, pointing to a new way to help the immune system fight back.

“Although so-called immunotherapy drugs from the likes of Merck & Co, Bristol-Myers Squibb and Roche are starting to revolutionise cancer care, they still only work for a limited number of patients.

“By adding a personalised cancer vaccine, scientists believe it should be possible to improve substantially the effectiveness of such immune-boosting medicines.”

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If you’re wondering whether this story applies to your own cancer case or a loved one’s, we invite you to use our ASK Cancer Commons service.


Clinical Trials Test Treatments for High-Grade Brain Tumors


With a few exceptions, glioblastoma (GBM) remains largely incurable, and the U.S. Food and Drug Administration (FDA) has approved few treatments for the disease. Surgery (when feasible), radiation, and temozolomide are used in most patients. But even if a newly diagnosed tumor can be surgically excised, recurrences are too common.

In this blog post, I simply list some of the new treatments available in clinical trials for GBM and other high-grade brain tumors. Only drugs that have at least some preliminary results of activity are included, and the list is not meant to be fully comprehensive. The interested reader can judge for herself what might be of interest, keeping in mind that no single treatment is suitable or will work for all GBM patients. Continue reading…


Super Patient: Peter Fortenbaugh Faces the Uncertainty of Pioneering Melanoma Treatment


In spring of 2014, Peter Fortenbaugh noticed what appeared to be a tick that had bitten his lower calf. “It turned out not to be a tick, but it didn’t really go away,” he says.

The spot began to grow and bulge, and in October, Peter showed it to his primary care doctor, who referred him to a dermatologist to remove it. At the time, Peter recalls, it did not occur to him that the growth could be serious.

“I was actually very concerned about skin cancer because I spent a lot of time out in the sun sailing,” Peter says. “I put on a tremendous amount of sunscreen and protection, but never on my legs…I never connected the dots.”

However, a biopsy of the growth came back positive for melanoma. Peter, who lives in Palo Alto, California, with his wife and three children, immediately reached out to several doctors in the San Francisco Bay Area, and all had the same advice: “Take it out, take a biopsy.” Continue reading…