NEW GENETIC THERAPY SAVES AND EXTENDS LIVES. IF YOU KNOW SOMEONE WITH LUNG CANCER, GET THEM TESTED!
We received amazing news March 3, 2010. My PET scan showed dramatic improvement when compared with my prior PET scan just 2 months before. I am a stage 4 NSCLC never smoker diagnosed almost 3 ½ years ago.
My Mom is a TVaholic who was watching ABC news one night as they detailed a remarkable man, whose doctor’s had nothing left to offer him to treat his stage 4 lung cancer. His last chance was to have his tissue biopsied to look for the presence of a genetic mutation in his cancer cells called the ALK mutation. It turned out he was positive for this mutation and after taking an oral drug targeted specifically for this mutation a miracle happened. His cancer disappeared. The story went on to detail another man with this mutation who had significant reduction of his lung mass.
As a physician and lung cancer advocate, I had never heard of this mutation. I asked my own oncologist about having my tumor tissue tested. It took a few weeks to get the results. Shockingly my result was + for the ALK mutation and after a one month wash out period off chemo, I began taking this same Pfizer drug 1066. I am now 7 weeks after beginning this drug and the PET scan result brought tears to our family’s eyes. Findings consistent with marked improvement of neoplastic process. “Non visualization of the previously seen intensely metabolically active enlarged lymph nodes.” Remaining lymph nodes were reduced by greater than 50%. My bone metastasis also was gone. No new lymph nodes. My remaining right lung showed no evidence for previously seen metabolically active nodules. Simply amazing!
For the past 3+ years I have had problems with long range planning along the lines of ‘don’t buy any long playing records. Planning a trip even in the near future is problematic. I now feel like I’ve been given a longer leash. I feel like I can go out and buy something as simple as a shirt without feeling quilty about how many times I might actually wear it.
After just attending the IASLC (International Association for the Study of Lung Cancer) meeting, it is clear to me we need to shout it out to the lung cancer community and bring awareness to the masses of the importance of asking their doctors to test their cancer tissue for genetic mutations. There are treatments evolving for so many of these genetic mutations. This is what is so exciting about translational research (bench to bedside). This ALK mutation from discovery, testing to treatment just evolved over the past 3 years! New targeted therapies are emerging as we speak. Personalized medicine is the hot topic. The goal of managing lung cancer and prolonging lives is within sight. So remember, testing lung cancer tissue is nothing to sneeze at!
So this past week I attended a targeted therapies meeting for lung cancer in Santa Monica California, and can I just tell you, WOW! So much to “inhale” and absorb from that experience. Sitting in a conference room with some of the brightest minds in the world (well my world at least) was spellbinding. These people have dedicated their lives to better ours.
The fact that this meeting is called “targeted therapies” is simply wonderful because that title speaks volumes. It means that this disease is recognized on an individual level and treated as so. There may be two people with stage four lung cancer sitting next to one another and each have a completely different type of cancer. We have known for several years that certain gene mutations are present in certain types of lung cancer, (now the “ah-ha” factor) but what we are learning now is which medications will successfully “target” certain types of gene mutations. This is so important because if someone is diagnosed with lung cancer and has gene mutation testing done as soon as possible following the diagnosis, the chances of being matched with the most effective medications (as first line therapy) are much higher and this could make all the difference. This could potentially save the patient from harsh unnecessary treatments. There are several recognized mutations that can be tested for, the problem is, this is NOT a standard of care at every single oncology office. So, this is why BEING YOUR OWN ADVOCATE is crucial.
I would love to share a few tips that I have learned on our journey through cancer land.
1. There is nothing wrong with seeking a first, second or even third opinion about your treatment options.
2. If you have found something, heard of something, or read something that sounds promising in the treatment of your lung cancer, ASK YOUR DOCTOR ABOUT IT. Your doctor should be able to expound upon what you have presented to him/her giving you an even better understanding of it. (if the doctor is consistently not receptive to you, use tip number one and seek out the second and third opinions).
3. Nobody has set your future in stone; you are making your own, so FIGHT FOR IT!
Ok enough of the “tiffisms”.
The targeted therapies meeting also provided the opportunity for me to meet with the Lung Cancer Foundation of Americas founders and other patient advocates. This was so awesome to see all of these passionate minds collaborate and make big plans for the future of lung cancer outcomes. To actually be part of a foundation that literally turns every penny given to them into research dollars that lead to future promising treatments is extraordinary. So, everyone that has donated to this foundation, please know that I am so grateful to you and please know that it is making a difference. I wish I had better, bigger verbiage for that, but it really is MAKING A DIFFERENCE. Thank you. Even more promising treatments are on the horizon and the funding is desperately needed to make them happen.
I almost forgot to tell you, my husband is doing WONDERFUL. He continues on the avastin as maintenance, which he receives intravenously every twenty-one days. He recently had scans that even showed improvement in certain areas. We are blessed! Even in the midst of this disease, we have been shown so many blessings and now ~life just tastes sweeter~
Lung Cancer Patients See Amazing Results In Clinical Study
Experimental Drug Could Help One In 20 Lung Cancer Patients
POSTED: 4:40 pm MST December 2, 2009
UPDATED: 5:37 pm MST December 7, 2009
AURORA, Colo. — Lung cancer is the most fatal cancer in the U.S. However a local clinical study is providing new hope for patients.
“Once they tell you it’s stage four, and it’s lung cancer, you know you don’t have a lot of time,” said Ellen Pulhamus, a 60-year-old nonsmoker who was diagnosed with non small-cell lung cancer in April 2008.
Her left lung was removed, but after chemo and radiation therapy, the cancer spread to six other areas in her body. Feeling desperate and hopeless, she got involved with the clinical trial of a new drug called an ALK Inhibitor at the University of Colorado Cancer Center.
“I’d only been on the drug for six weeks and went in for the PET scan,” said Pulhamus.
And when compared to her PET/CT scan from the beginning of the study, doctors saw dramatic shrinkage of a tumor on her kidney.
“There were four other tumors, and some of them we couldn’t even see anymore,” said Pulhamus.
“It’s really a dramatic shrinkage of the tumor that we are seeing, and for an experimental drug it’s quite exciting to see that,” said Dr. Robert Doebele, assistant professor medical oncology at UC Denver.
The ALK Inhibitor works by blocking the activity of a specific abnormal gene found in about 5 percent of lung cancer patients.
“And because this gene is so important for the growth and spread of the lung cancer, and its dependence on that gene, it actually shrinks the tumor,” said Doebele.
Technology developed at UC Denver allows doctors to genetically test a biopsy to identify those patients who are likely to benefit from the ALK Inhibitor. This leads to personalized medicine and therapies for patients.
For Pulhamus, the targeted therapy resulted in the 60 percent reduction of an egg-sized tumor, with just two pills a day.
“No chemo, no radiation. I’ve done that,” Pulhamus said with a giggle.
“If we are able to tailor our therapy to the individual patient based on what we see on molecular tests, then it will be very beneficial to the patients because we won’t spend time using very toxic drugs that may not work,” said Doebele.
With fewer and less significant side effects, the ALK Inhibitor can be administered for months, if not years longer than chemotherapy. This means that right now, Pulhamus’ wish for more time to spend with her children and grandchildren has come true.
“It changes everything, it gives me hope,” said Pulhamus. “It makes me realize that maybe there is a future for me.”
In fact, her third PET/CT scan revealed another 50 percent reduction in the size of her tumor.
Doctors at the University of Colorado Cancer Center recommend that everyone in Colorado with lung cancer be evaluated for eligibility in this clinical trial. For more information about free genetic tumor screenings and enrollment in the UCCC clinical trial, call Tiffiany Caudill, 720-848-0392.
The free lung cancer tumor testing is also taking place at:
*The Brigham and Women’s Hospital *Dana Farber Cancer Institute *Emory University/Winship Cancer Center *Moffitt Cancer Center *Johns Hopkins/Sidney Kimmel Cancer Center *MD Anderson Cancer Center *Mass General Hospital Cancer Center *Memorial-Sloan Kettering Cancer Institute *National Cancer Institute *UCLA/Jonssen Cancer Center *University of Pittsburgh Cancer Institute *University of Texas-Southwestern Cancer Center *Vanderbilt-Ingraham Cancer Center.
At the Targeted Therapies Meeting, the one thing that I heard over and over was about different mutations that tumors possess and how they are working on blocking these mutations to stop tumor growth.
So, lets back up. How do we know which mutation our own tumors possess? It is not done routinely and is not part of what the pathologists looks at when examining the cells to make a diagnosis of adenocarcinoma or squamous cell lung cancer. It is not the same test as gene amplification–that just tell us if the gene has reproduced excessively; however it doesn’t tell us if it has actually mutated. The actually gene mutation test is specific, and takes up to two weeks to perform. It doesn’t take a lot of tissue– and can be done on paraffin block tumors. The gene mutation testing needs to be done at a certified lab specific for gene mutation testing.
They are finding out different things about different tumors. For example, the EGF mutations have a part that is actually deleted. exxon 19 and exxon 21. ALK gene fuses with another gene.
What does all this mean for patients? One thing that I heard over and over was that the gene mutation testing does not eliminate treatment, but it help prioritize treatments. For example: Many people who are EGF gene mutation negative still may have benefit from taking Tarceva. However if a patient’s tumor has the exxon 19 deletion that patient most likely will respond to Tarceva. There is still alot we don’t know, but we can use the knowledge we have to help guide us to know what therapies might work best for us.
So who should have their tumors tested?? EVERYBODY WHO HAS LUNG CANCER. This is something all the doctors were saying- we have enough information now that we can design treatment based on gene biology of the cancer.
I just returned from Santa Monica. California. I attended the IASLC 10th Annual Targeted Therapies in the Study of Lung Cancer. At this meeting, leading researchers and oncologists talk about new and upcoming therapies for lung cancer.
The advances made in the last decade leading to even newer possible targets and treatments are truly exciting. I remember when this meeting was much briefer, and most the talk was focused only on EGFr. Now its multiple genetic mutations and things like ALK fusions, and irreversible TKIs, and vaccines used to treat lung cancer. For a patient forced with facing a personal battle with lung cancer, these new treatment options offer hope. Hope not reflected with current statistics on lung cancer.
However, the best part of this meeting was what LCFA was able to accomplish. Our first Career Development grant, in conjunction with IASLC, has closed the application process and the grants are now in the review process! I’ve had the privilege of reading through all the grants and WOW, I’m encouraged by the number of good, exciting researchers that have applied. Grants came in from around the world– and while I’m not qualified to evaluate the science of the grants–I can tell you, I am excited just thinking about the work happening!! My only regret is not being able to fund all the young researchers.
Another exciting part of what LCFA was able to do, was put together a New Advocate’s Training Day! We brought in about 15 new advocates who have expressed interest in learning more about lung cancer research and helping with LCFA’s activities and mission. And I was equally impressed with the high caliber of the advocates that came to join us! They were educated, eager and full of great ideas for LCFA! Four top scientists in the country came to our Training Day presenting highlights of their work and the latest news regarding lung cancer research.
I came away with inspiration and a strong desire to do more. To have another Advocates Training Day and do more to raise even more funds so that we can fund more research. Any time I have the opportunity to see and work face to face with Kim and David (Co-Founder’s) is always a great, recharging time; however this time was exceptionally special because of the upcoming grants and the ability to work with new advocates.
I just returned from Washington where I had the extraordinary honor and opportunity to be a part of the decision-making process for lung cancer research funding. I was nominated by Lori Monroe (LFCA co-founder) as a lung cancer advocate (and stage 4 lung cancer survivor) to be a consumer reviewer for lung cancer research grant proposals submitted to the Department of Defense (DOD). After submitting an application, writing an essay and completing a phone interview, I was appointed by the DOD to become a consumer reviewer. I had the interesting challenge of balancing my being a physician with my now being a consumer reviewer.
I am so exhilarated after returning, as I got a window into the future of lung cancer research ….and the future is quite bright. In fact, my prediction is for exponential growth in the understanding, treatment, and life expectancies during the next few years. The direction we’re headed is towards ‘personalized medicine’, where individual characteristics of your tumor are identified and treatment targets the tumor cells specifically. This will be a huge improvement from traditional chemotherapy where both healthy and cancerous cells are affected by treatment. The ramification of this is less toxicity, fewer side effects, and more manageable disease.
2009 was the first time in history the Department of Defense appropriated dollars for lung cancer research. The first question I usually get is what does the DOD have to do with medical research? If you really want to know….here goes! In 1993 President Clinton was besieged by over 2 million signatures on a petition to do something about breast cancer. President Clinton looked to the DOD as a funding vehicle and indeed Congress declared a “War on Breast Cancer,” funding billions of dollars towards breast cancer research since that time. Great progress and discoveries were enabled by this research. In later years funding was given to other cancers including ovarian and prostate cancer. This is the first year lung cancer is included. I asked why this is finally happening, and the answer I received is that it has all been a result of advocacy efforts. The squeaky wheel gets oiled, and organizations such as LCFA are starting to be heard. Practically nothing gets funded without an advocacy or lobbying group in Washington. Breast cancer, HIV and prostate cancer are direct evidence of the power of advocacy. When I was in training, HIV was a death sentence. But through ACT-UP and other advocates for HIV, it is now a disease that although not cured, is being managed successfully. The death rate has plummeted and life expectancies continue to increase.
My role was to review research proposals and look at them in a unique way. Specifically, I was asked to put on my lung cancer “consumer” hat and not my physician cap. I was asked to look at the relevance of the study and the impact of the research on lung cancer patients, survivors, and family members of these patients. I thoroughly reviewed 17 proposals and wrote an impact statement for each study. Upon arriving in Washington, I met up with other consumer and scientific reviewers in a panel of 10, and went through the proposals one by one, grading each proposal from 1-10. All voices were heard and everyone contributed. I truly believe those studies which held the most promise and merit, with the greatest impact to the lung cancer community, were eventually chosen.
Post Script: It has already been decided to reduce the money appropriated for lung cancer research to go from 20 million to 15 million in 2010. This should be our call to action for our advocates. The Veterans’ Administration spends over 350 million a year in treating smoking related illnesses, let alone all the toxic fumes and other carcinogens our smoking and non-smoking soldiers are exposed to. Once upon a time the DOD handed out cigarettes to our troops and many veterans became addicted to cigarettes. One would think that the DOD shares some responsibility in caring for our veterans. We need to lobby our Congressman and Senators to reverse course and add additional monies for lung cancer research. It’s an investment that could pay huge dividends in reducing health care costs through prevention and early detection. Health care reform you can believe in.
Michael
Dr. Michael Weitz is a stage 4 lung cancer survivor, an ER Physician, an advocate representative on LCFA’s Scientific Advisory Board, and lives in the San Fernando Valley in Southern California with his wife Janice and their three delightful teenage sons.
My husband has endured six rounds of chemotherapy consisting of Carbo, Taxol and Avastin from the beginning he was told he was a stage four and if he was able to gain “stability” from chemotherapy that, in itself is a milestone. Well, the tumor didn’t just stay “stable” (meaning that it did not shrink or grow during chemotherapy) but it turned into scar tissue! When he was first diagnosed the primary tumor was a whopping 6cm. Now it’s dead!
We believe so much of this success comes from the Avastin. This drug is a “tumor-starving therapy”. In order to survive, grow, or spread, tumors need a continuous supply of oxygen and nutrients, which they get by creating their own network of blood vessels. This process is called angiogenesis (an’-gee-o-jen’-i-sis). Avastin is thought to work by blocking a protein released by both normal cells and cancer cells that helps cause angiogenesis. This protein is called VEGF and is produced throughout the life of the tumor. By controlling the growth of blood vessels, Avastin can starve your cancer of the nutrients and oxygen it needs to grow and spread.
Brandon will be staying on Avastin as a “maintenance” therapy for an indefinite amount of time. He will receive it once every three weeks intravenously and the process will last about 30 minutes. This is so minuscule compared to the cards our family was initially dealt this past summer. Keep fighting the good fight, my husband is proof that this beast is beatable!
Thank you so much for writing and your kind sympathies. We have had an interesting few months. Not long after losing dad to lung cancer, our shop was broken into and a lot of tools and equipment was taken, including Matt (my brother) and my laptops we keep in the office. I am sorry to say I lost everything including pictures of our event. Let me tell you a little about it though, because it was a great night.
We planned it for November 5th and it was really a struggle to pull it off, we found out a few days before that the city was not going to let us use the fire station after all, but we already had signs made and posted and radio announcements done. So I called the local community center and asked if they had space for us and they did but it cost 100 dollars an hour. So I thought that was out, but on Nov 6th the community center called back and said they had received calls from the fire chief, the police chief and just about every fire fighter in the city wanting to know if there was anything they could do to “donate” the room to me for the night and they came through and said yes. In fact, they were so touched by how much dad meant to this community they offered to host it for me every November as long as I did the event. I was thinking all would be well. I just had to get the word out about the change of venue, so I spent all day making new signs that directed people to the center.
Well the next morning on the 7th, dads kidneys failed and his breathing became very labored. He was no longer conscious except rare moments when he managed to open his eyes. His hospice nurse told us he was “actively dying”, what a stupid phrase, but I understand what she meant. So I called my best friend Veronica who been helping me with this all along and told her she may be on her own that night and of course she was more than willing to do it. I also called Target because they had arranged to have several volunteers come help us as well and I wanted to make sure that they were still coming.
I have to tell you that I worked at Target as a team leader for 7 years before I quit to help our family business, and my mom worked there as a front end leader for over 3 years, so Target is like a second home to us. When I explained what was happening to dad, the 4 volunteers they had arranged turned into 17 including the store manager Jay and most of his executive team. I was so touched. They went around to everyone in the community center (guys playing basketball, girls doing yoga, everyone in the pool, and invited all of them to come in and support us) I ended up going to the event as well, because it seemed like the only thing I could do to make a difference at that point. We had the fire department come over (I should mention that my brother Matt is a firefighter, so they have been with us from the beginning) and so many people from the RV parks who knew dad and all of our family and friends. All of the firemen painted their thumb blue and they wore white cancer bracelets along with their red 911 ones.
When Dad was in the hospital, there was a garden that he would have us wheel him to and drink his coffee every morning. On the wall of that garden was a saying by Ralph Waldo Emerson that said “What lies behind us and what lies before us are tiny matters compared to what lies within us.” We passed that wall everyday and could not help but realize that the very best moments in life come from within us, we create those memories, but at the same time, the very worst battles of our life can also come from within us.
We put that saying on a large piece of white glitter paper and surrounded it with luminaries’ that spelled out help us shine a light on lung cancer. It was a great way to set the tone for the night and started so many conversations. It gave people a quiet peaceful place to share their stories, and as glad as I am that we gave out so much information that night, I am also glad we accidentally found a way to share some of the emotions involved in dealing with such a disease.
Besides the people at the community center who came in there was not much attendance from the general public, but I think the sudden change of venue did not help. All in all though I bet 150 people came out, we gave away all of our materials and even the photo copies the community center let us make. I met 3 people who are currently battling lung cancer and family of another 5 or 6 who had lost someone to lung cancer, including one of our Target volunteers and one of our firemen. It was a great night and when the Director of Activities from the community center stopped by as we were cleaning up, she had several offers for me that were left at the front desk. One, from the manager of Tunex (who was playing ball there) said he would do anything we needed to for next year, he will send people out to clean people’s car lights (shine a light) anything we can think of, he will make it happen. The community center and Target will help again anytime and so will the fire department. Then we have Matt and my RV and Marine shop and my mom’s scrapbook club, all willing to do more events.
Even without public attendance it was an inspiring night and well worth our time and effort. I am so glad it came together and can’t wait to do something else hopefully sooner than next November. I am totally open to new ideas. I would love any tips on what to do next and I would also love to do something in Salt Lake City. I met a few people at the Huntsman Cancer Institute that I bet would help if I asked. As soon as we get back on our feet from this break in, I want to keep working with you to raise awareness. I just need a little guidance, but I will definitely be at your service.
If our family would have been asked a year ago, what month represented lung cancer awareness, we would not have been able to tell you. Well, it’s November and that will forever be engraved in our young family’s minds. Three months ago my 29yr old husband was being treated for what our family doctor thought was pneumonia. Two weeks later, the cough persisted and a ct scan was performed. We fell to our knees in despair upon the results. A 6cm mass had been found in Brandon’s left lung as well as malignant fluid surrounding it. Not only were we told that Brandon had lung cancer but that he was in stage four of this disease. Within one day, our lives were forever changed.
The moment after we were told the diagnosis, I mentally removed myself from the conversation and visualized myself standing on a stage looking at a room full of people listening as I told of our journey and how we made it. Now I know this was such an odd time to be practicing visualization techniques but, to this day I know that it wasn’t me doing this, it was God showing us the way!
Of course, after I returned to our, oh, so very scary reality, I went home and puked my guts out, I asked God why and how and what about my two babies? They need their daddy. I don’t know how to teach my six year old son Eathen how to throw a football and I am definitely not great camping material. Did God forget about us?
After two good, solid weeks of utter grief, I snapped out of it and went into action. I “googled” all sorts of concoctions, trying to locate survivors. I thought there must be some out there. There were, just not as many as I had hoped to find. That is when realized my calling.
This was never the path we would have chosen for our family, but this is where we are and this is what we have been called to do. At some point, I made a silent plea with God. I begged him to let me keep Brandon. Let him be “living” proof that there is always hope when determination exists. I asked him to allow us to pay this experience forward and continue to help others in creating awareness and striving for the cure!
So far, Brandon has completed five chemotherapy treatments consisting of Carboplatin, Avastin and Taxol. He has showed a wonderful response thus far. After his third treatment, a pet/ct scan was performed which revealed that the mass had shrunk 30% and the level of cancer activity in his body has decreased by 50%. We will continue to fight until we have declared victory against this disease!
Biomoda`s Patent Portfolio Continues to Expand ALBUQUERQUE, N.M.–(Business Wire)– Biomoda, Inc. (OTCBB: BMOD), an Albuquerque-based cancer diagnostics company, announces that it has received notice of allowance for a U.S. Patent protecting the proprietary formula for the composition that binds to cancer cells which is utilized in Biomoda`s screening assay for the early detection of cancer. The U.S. Patent entitled “Method for Making 5, 10, 15, 20-Tetrakis (Carboxyphenyl) Porphine (TCPP) Solution and Composition Comprising TCPP,” describes the new formulation of the Biomoda assay trademarked under the name CyPath. “This patent basically gives Biomoda a lock on the `recipe` for the TCPP Labeling Solution,” said Biomoda President John Cousins. “Our formulation moves beyond the original work done on TCPP at Los Alamos National Laboratory and incorporates the cutting-edge science we are doing in our own lab.” TCPP is the foundation for several Biomoda product lines and medical diagnostics. The company`s first product, an in-vitro test for the detection of early-stage lung cancer, is currently in Phase II clinical trials. Study volunteers provide deep-lung sputum samples to be screened for cancer cells with the CyPath assay in the Biomoda lab. Results are compared to CT scans and Pap stains read by independent radiologists and cytopathologists, respectively, to confirm accuracy. Biomoda is seeking Food and Drug Administration (FDA) approval of its cytology-based screening technology as a Class III medical device. Multi-site Phase III trials, the final step before FDA approval, are scheduled to begin in early 2010. In addition to U.S. patents (6,838,248 and 7,384,764), Biomoda also holds patents for its proprietary technology in several foreign countries. Biomoda (www.biomoda.com) is a cancer diagnostics company focused on the development of accurate, inexpensive and noninvasive tests for the early detection of cancer in large populations. In addition to its first product for lung cancer, diagnostic assays for cervical, breast, colorectal, bladder, and oral cancers are targeted for development
