Wednesday, June 29, 2011

FDA Avastin Hearing for Metastatic Breast Cancer News - Terry Kalley Testified at Hearing

Freedom of Access to Medicines is the top resource for all the latest news on the FDA Avastin Hearing!

  • We are currently livetweeting every detail of the Hearing on FAMEDS Twitter.
  • Posting the great number of articles from Media Outlets and having dialogue with supporters on our Facebook Page.
  • FAMEDS has the Patient Protest/Rally Videos, Photos, the Speech Terry Kalley Testified, Slideshow Presented at the Hearing and more content on our Website Hearing Page.

Tuesday, June 28, 2011

FDA Avastin Hearing Peaceful Protest / Rally Video

Video of FAMEDS Founder Terry Kalley Speaking at the FDA Avastin Hearing Peaceful Protest / Rally this Morning, Surrounded by Patients, Suvivors, Family, Friends, Supporters & Media:

Tuesday, June 14, 2011

Avastin Patient Series: Anonymous User

Below is a living example of a Metastatic Breast Cancer Patient Surviving with the Drug Avastin! Check back to read every story in this continuing series!

If you are an Avastin patient or survivor, or family member, we encourage you to share your story! You can remain anonymous as this patient chose to.  Email us with a video or written story describing your journey to

View Her Story:

Avastin Patient Series: Rachel Parrish & Husband Donald Parrish

Below is a living example of a Metastatic Breast Cancer Patient Surviving with the Drug Avastin! Check back to read every story in this continuing series!

If you are an Avastin patient or survivor, or family member, we encourage you to share your story! Email us with a video or written story describing your journey to

Avastin User Rachel Parrish's Story

Husband Donald Parrish's Story

Avastin Patient Series: Shannon's Story

Below is a living example of a Metastatic Breast Cancer Patient Surviving with the Drug Avastin! Check back to read every story in this continuing series!
If you are an Avastin Patient or Survivor, we encourage you to share your story! Email us with a video or article describing your journey to
Shannon's Story

via the South Charlotte Weekly in 3 Parts:

Monday, June 13, 2011

Avastin Patient Series: Carol's Story

Below is a living example of a Metastatic Breast Cancer Patient Surviving with the Drug Avastin! Check back to read every story in this continuing series!
If you are an Avastin Patient or Survivor, we encourage you to share your story! Email us with a video or article describing your journey to

"Twenty four percent of cancer cases in the Kingdom are breast cancer cases making it the leading form of cancer within the country. According to the latest Saudi Cancer Registry report over 10,000 cases of cancer were treated in one year alone. Seeing the effects that breast cancer is having on Saudi society, HRH Princess Reema and Al Bidayah Center decided to collaborate and create an awareness campaign that would educate and allow the average women to make a difference."

The words above should send a shiver through all women and make them want to run soonest and receive a monthly mammogram. Breast cancer is one of the most treatable of all cancers --- IF it is detected soon enough. However, in Saudi Arabia, breast cancer remains viewed as a ¡°woman.s problem¡± and a stigma is also attached to a woman who has had breast cancer. If a woman is young and single and diagnosed with breast cancer, all of a sudden she may be classified as unmarriageable for she is now defective and imperfect. If she is already married and diagnosed, rather than reaching out and supporting her, the husband may instead go out and take another wife who is not deformed. These words are harsh but heard them too many times from women, physicians, nurses and radiologists in Saudi Arabia.

I had a Saudi family member who chose to keep quiet and not reveal to anyone for two years that she had a lump on her breast. Why? She was single and recently engaged. She believed if she brought the subject up she would find herself dumped by the fiance and unlikely to ever marry. Thankfully God was watching over her for she finally had the courage to speak up about this lump after my own cancer was diagnosed. She required a lumpectomy which is removing the mass and then having it examined to determine if it contained cancer. Al humdill.allah, it was not cancerous and this story had a happy ending.

Now I am going to share with some straight talk of my own. I have a terrible family history of cancer, period. Not just breast cancer but other types besides. As a result I was diligent in not only having regular yearly mammograms but doing a self exam of my own breasts each month.

Usually on a Friday night after my shower I would perform a self exam. The self exam allows a woman to understand and know her breasts. Therefore, when she discovers something that doesn.t feel right, she knows something is different and requires additional follow up, such as a mammogram.

In my own case, it was June 2008 and I was performing my regular self exam when I felt something that reminded me of a hard marble inside of my left breast which I had never felt before. Being married, I asked my husband for his opinion and he agreed that something was there. The next day I went in to National Guard Health Affairs where I worked and a day later was able to have a mammogram performed. Ironically the lump which I discovered was not cancerous but the mammogram indicated deeper areas in the breast which were only detectable by a mammogram that were of concern. As a result, biopsies were ordered. Initially local biopsies were attempted which did not require a surgical procedure. However after no success, I was informed I would need a lumpectomy which is a surgical procedure to go into the breast and remove the tissue from the area of concern and have it analyzed by a pathologist.

I was told that I had Stage O, DCIS breast cancer. Because of family history and the composition of the cells, my breast surgeon told me I must have a mastectomy. I was scared and surprised by the news but at the same time ready to follow my doctor.s recommendation. On 01 July I underwent six hours of surgery at National Guard Health Affairs where I had a mastectomy followed by immediate reconstruction. What I mean by immediate reconstruction is that after the breast surgeon removed the breast, a team of plastic surgeons moved in. The plastic surgeon took tissue and skin from my abdomen and used it to create a breast taking the place of the one I had just lost. This was a good decision for me because when I awakened from my surgery I did not feel a sense of loss of a body part or incomplete, which is a common feeling that some women have. Because of this more invasive procedure, it took about three months for me to fully recover.

During this period my Saudi husband was always by my side. He even took a full month off from work to help me and care for me. His mother (dear Mama Moudy) traveled from Makkah to Riyadh and stayed with me in the hospital as my caretaker. She continued to stay with us at our home after my discharge until she was satisfied I could easily manage again on my own.

I belong to a large extended Saudi family. I had no qualms showing my female Saudi relatives what my reconstruction looked like. I shared with them all the importance of mammograms. I answered any questions they had. I was not the least bit shy in imparting information to them and wanted to educate and encourage them all on the importance of mammograms. NONE of the Saudi women in my family with whom I spoke had ever had a mammogram due to fear of the unknown and fear of pain. I could not tell them enough that the mammogram saved my life.

I was recuperating and healing nicely. I also have to acknowledge that I enjoyed my new flat stomach thanks to the reconstruction. Life began to get back on track. I resumed working. Ramadan came. I was very joyful to be cancer free and recovered. I was put on Tamoxifen and instructed to have a mammogram every six months for my right breast for the first few years. My doctor also suggested that it would be in my best interests to be pro-active and have a hysterectomy as a prevention against uterine or ovarian cancer due to my family history. I agreed with the suggestion and was placed on a waiting list for the procedure.

I felt like a bomb struck us in late October 2008. My precious beloved husband, Abdullah, began to feel ill and his lymph nodes were literally protruding prominently from his neck to his groin. We started out at King Khalid Hospital and eventually arrived at King Faisal Specialist Hospital. After some excruciatingly tense and stressful weeks we received an answer. Abdullah had t-cell acute biphenotypic leukemia. He was admitted to King Faisal Hospital and immediately started on a chemotherapy regime. I ultimately took a leave of absence from my job and literally moved into his hospital room with him and became his full time caregiver. Sadly after two regimes of chemotherapy his leukemia was not responding to treatment. By this time it was early February 2009.

While Abdullah remained in the hospital due to a pneumonia which resulted from his chemotherapy treatments, I received that phone call reminding me that there was an opening for me to have my surgery, the hysterectomy. Since this was viewed as an optional pro-active surgery I knew if I did not follow through with the opportunity it could be months before the next opportunity arrived. I was at National Guard Health Affairs for five days remaining three days were the longest days and nights I had ever spent, just waiting to be discharged so I could return to my husband.

It was a trying conflict. I was released but my doctor was stern that I must take time to recuperate before staying at the hospital with Abdullah. I managed for one week with short visits before I moved back in with him in his hospital room. He was my husband and I insisted on being there to take care of him, calm him, reassure and pray with him during the dark hours of the night. He was also back in a regular room at this time, too.

Abdullah.s doctor told us the only chance Abdullah had of increased survivability was to undergo a stem cell transplant. King Faisal is the busiest hospital in the GCC region which performs such transplants. However the manner in which they are performed in Saudi Arabia is to isolate the patient. The patient is in a room with large glass windows. Visitors (to include family) are NOT allowed inside the room. Instead, communication is via the window and use of a telephone. This is done to ensure sterility as the patient has no immunity at that point and can not risk being submitted to any kind of germs. Abdullah, on learning the protocol, told me it would kill him to feel caged up like a prisoner. Therefore, we decided to travel to MD Anderson Cancer Center in Houston, Texas for him to be treated.

We left for the United States on 04 March 2009. After one night in Washington, DC, we arrived in Houston the evening of 05 March. Abdullah.s program began on 06 March. He had to undergo numerous tests and exams. In order to maintain the remission he was in when he departed Saudi Arabia, he was immediately started on another round of chemotherapy. The familiar routine began again. I moved in to his hospital room to take care of him. Thankfully at the beginning of the journey we had his brother with us. His brother was going to be Abdullah.s stem cell donor as he was found to be a perfect match! He was with us for one month while he underwent standard procedure for the donation of his cells. In the meantime, preparations continued for Abdullah.s stem cell transplant. Abdullah.s second birthday occurred on 01 May 2009 when he received his stem cell transplant. I was with him in his hospital room along with his medical team. He and I held hands and let the tears fall freely down our cheeks while he received the most beautiful gift of life from his brother. For the next several months Abdullah had his ups and downs which is common with transplant patients. I cherished the moments by his side and taking care of him.

In June 2009 I underwent my own comprehensive set of tests and exams for my one year period post mastectomy. I was found to be cancer free! I was told to continue taking tamoxifen and come back in one year for the next annual exam! Woo hoo!

By October 2009 Abdullah was doing very well and we anticipated returning soon to our home back in Riyadh. Abdullah.s primary physician told me that it was okay for me to leave Abdullah on his own and fly to Charlotte, North Carolina to FINALLY meet my new Grandson! I left in high spirits.

I arrived in North Carolina feeling .blah. and exhausted. I attributed the feeling to having been a full time caregiver since October 2008. My son, however, insisted that I get checked out by a doctor. The doctor in turn, on learning my history, sent me off to have various tests which included MRI and PET scan. Three days later the results were back. MY cancer was back. I had gone from zero cancer in June 2009 to classified as a stage 3C inoperable. My breast cancer had metastasized to the lymph nodes and above the supraclavical area. My bottom dropped out again. How could that happen and in such a short time? I had to break this news to Abdullah. When I called him, I knew immediately from the tone of his voice that something was terribly wrong. I put aside the news I had to deliver to find out what was wrong.

It still feels so imaginable even as I write these words now but he learned during what was hoped to be part of a ¡°check out exam¡± for our return to Saudi Arabia that his own leukemia had returned. Both of us would need to undergo intensive aggressive treatment and at the same time. We each would require a care giver. With both of us still in a state of shock by how our lives had changed yet again, we decided that I would remain in North Carolina where I had family and he would remain at MD Anderson with his team of doctors. His eldest daughter would come from Saudi Arabia to become his caregiver.

Life changed so quickly for both of us. Each day revolved around tests, treatments and procedures. Abdullah.s body was now resistant to chemotherapy. He began a clinical trial. I learned that my body had been resistant to Tamoxifen and I was started on an aggressive chemotherapy regime consisting of three different types of chemo. I had to undergo a total of six treatments three weeks apart. After my first treatment I was hospitalized for a week. I was feeling miserable and out of sync with my world and my life. Abdullah was feeling the same. He was not responding well to the clinical trial. By mid-January 2010 we were both still in the midst of our own treatments. Abdullah.s team of doctors told us that Abdullah was now at the point where he had to make a choice. They could no longer do anything for him. The leukemia had literally taken over his body and critical organs were beginning to fail. He could either remain at MD Anderson where he would be made comfortable or if he wished to return back to Saudi Arabia via a medivac flight while he was still able to travel, those arrangements had to be made ASAP. Naturally Abdullah wanted to go home to say those final goodbyes and die at home, in the land where he was born and which he loved.

I so wanted to have a final goodbye with Abdullah where I could touch his face, hug him, kiss his eyes and top of his head, even smell his scent. My doctor understood my desire and an all out effort was made to make this desire a reality. A private pilot through Lifeline pilots was identified who would transport me via his own plane to Houston and back. By that time my own immune system was virtually non-existent and I was highly susceptible to infections. I could not fly via commercial aircraft. The co-leader of my breast cancer support group was going to accompany me and care for me during this trip. In preparation I underwent blood and platelet transfusions. Sadly, in spite of all these efforts and plans, my body would not cooperate. I was in too weakened of a state to travel. Abdullah and I had to say goodbye via Skype. We kept that conversation positive, upbeat and full of smiles in spite of knowing it would be the last time to see each other. After that call I hung up and howled and cried like a banshee. Abdullah passed away two days later on 08 February 2010. God rest his soul.

Life did go on. I still had to get through my own treatment. I finished chemotherapy. After a short break to let my body rest, I started radiation therapy in April. I had eight weeks of radiation therapy. Throughout this whole period and even now, my heart continues to yearn and grieve for Abdullah, the love of my life. However, I know Abdullah would want me to fight and stay positive.

I finally finished radiation therapy in June. I was still tired and had remaining side effects from both radiation and chemo but looked forward to regaining strength. I decided to remain in North Carolina where I could see my Grandson grow up. I began my search for a job and new career in order to support myself. I learned that I can plan all I want but life will surprise me.

It is standard for anyone having had cancer like me and after completing therapy to have follow up tests. I underwent a PET scan and bone scans last week. Additionally, my own oncologist is the only one in the area who performs a circulating tumor test which is a blood test that indicates whether cancer cells have entered the blood stream. The scans indicated areas where new cancer had developed and the circulating tumor test was off the wall. I now have Stage 4, incurable breast cancer which has spread to the bones, lung and abdomen areas. My doctor told me that the cancer is a slow moving aggressive cancer, hence it is among the cancers most resistant to chemotherapy. Of course this means I am back in active and aggressive treatment. The past two days I have been scurrying like a racehorse in preparation for the new regime. I begin daily radiation treatments on Monday targeted on the bones. I will be started on infusion therapy which will target the lung, abdomen and rest of the body. I further require infusions to help build up bone strength.

There is no guarantee on how much time I have. My doctor has a plan for me and I will follow his instructions. Rather than dwell on how much time I have, I live each day to the fullest. I guess if you think about it, the only sure guarantees in this world are that once you are born, at your time, you will also die. I am making sure all my affairs are in order. I am sharing my story so candidly to reach out and help those who need a wake up call to perform self exams, to get a mammogram, ensure that your life is being lived in the manner you wish to remembered, correct any wrongs and have peace with yourself and your faith.

Wednesday, June 8, 2011

Avastin Patient Series: Sherry's Story

Below is a living example of a Metastatic Breast Cancer Patient Surviving with the Drug Avastin! Check back to read every story in this continuing series!
If you are an Avastin Patient or Survivor, we encourage you to share your story! Email us with a video or article describing your journey to

My name is Sherry Potter.  I live in rural Oklahoma 8 miles south of Ponca City, Oklahoma.  I am the mother of two children, five grandchildren and am going to be a great-grandmother in mid August.

I worked for Conoco Oil Company for many years as a Sr. Property Analyst in the Real Property Division until 1994 when the company went through one of its many downsizings due to the economy. That was devastating, as you believed it would be until the age of normal retirement and I had many years to go before then.

This event, along with several other personal tragedies, put me in a state of severe depression for which I received treatments but was unable to cope with life on a daily basis.  My mind just could not process information correctly.

I was diagnosed with metastatic breast cancer in March of 2005 only after I changed doctors as the first one totally ignored my complaints and refused to order any tests, as they were 'expensive'. It took the new doctor less than three weeks to determine my condition. She told me that it took about three years for me to be in this condition, stage 4 MBC and if it had been caught earlier, I would have had a much better prognosis. 

As it was, I was given just a few years and to date have far exceeded that time frame. All the doctors who are involved in my treatments have expressed their amazement that I have survived this long.  I owe it to their treatments and investment in me as a person and my strong faith in my creator, as well as the many prayers made on my behalf.

Few words can evoke fear in a person as hearing the words “you have cancer”.   Your mind goes into shock as you try to digest all the implications and what it means to you, at least mine did.  You are bombarded with information that, as a layperson, overwhelms you and the one thing that you anchor yourself to is your doctor.  You put your trust in his judgment and recommendations for your treatment.

As you go through chemo and the various radiation therapies, you try to prepare yourself for the possible side effects about which you have been warned but there is no way to know how many you will experience or if you will experience them at all. Each person is different and reacts differently to each medication.

I began taking Avastin on May 8, 2008 and have taken the infusion every three weeks along with other drugs prescribed, first Taxol, now Xeloda.  My subsequent pet scans have shown little or no growth at all and I know that Avastin is one of the primary reasons for my longevity. I personally have had no significant side effects from the Avastin.

It is imperative that all options be available to you and your doctor.  The course of treatment should be between your doctor and yourself, not a panel of people, most of whom are without medical backgrounds, to presume to know the best course of action for your particular kind of cancer and how you react to those medications.  The recommendations of your doctor are based on your test results and these determine the course of action that your doctor feels will best serve your individual needs.

When you limit these options, you take away a critical tool in the fight against cancer.  It is a battle, a battle for your very life.  This would be akin to sending persons into battle without the primary weapon to defend them.  If it were you facing this battle, you would want and expect to be able to arm yourself with the best defense possible.  Hope and a positive attitude work in tandem with the medications.  You cannot take that hope away from people who already suffer greatly.  Ask yourselves if you really have the right to do so.

Productive citizens who have worked all their lives had no choice but to pay into Medicare and we also have no choice at age 65 but to be enrolled in Medicare.  We have the expectations that we will be served with the best possible medicines and treatments that are available.  If you limit one, what is to stop you from limiting or eliminating others?  We see this in socialize medicine in the EU and wonder if this is to be our fate.  That upon a certain age, we are deemed no longer 'cost effective' and do not deserve treatments of any kind.

If you goal is simply to save money, then you should first look to the fraud and wasteful spending that plagues Medicare and Social Security.  You should look for ways to save money that does not endanger the lives of people who are already facing a death sentence by denying them possible life extensions and maybe even a potential cure in the immediate future, if they can live long enough to be able to utilize it. Miraculous breakthroughs are happening all the time and give hope to those who have catastrophic illnesses.

The Europeans have approved Avastin for use for MBC with Taxol, have recommended its approval with Xeloda, and begs the question, which system is looking bad right now?
It is actually quite simple, look in the mirror and ask yourselves this one question:  If it were you, what would you want for yourself?

Monday, June 6, 2011

Avastin Patient Series: Anne's Story

Below is a living example of a Metastatic Breast Cancer Patient Surviving with the Drug Avastin! Check back to read every story in this continuing series!
If you are an Avastin Patient or Survivor, we encourage you to share your story! Email us with a video or article stating your journey to

Anne's Story
Hello. I am currently on Avastin. I appreciate your efforts to help me and thousands of other breast cancer patients. Here is my story -

I was initially diagnosed on July 21, 2006 with IDC stage 3A, grade 3, ER/PR+ HER2-. I was 36 years old. It was recommended by my oncologist and breast surgeon that I have chemo before surgery in order to gauge my response to treatment. I was scheduled for 6 rounds of dose dense TAC (taxotere/adriamycin/cytoxin) to be given once every 3 weeks. I was told this was first line and the most aggressive approach. With my breast lump palpable, we were able to get an approximate measurement at the start of each therapy session. At first, there seemed to be some shrinkage of my tumor. Then, before my 4th round, my oncologist was aghast to realize my tumor had grown. We went ahead with my 4th chemo cycle and scheduled my modified radical mastectomy immediately. The pathology came to prove the suspicion - my cancer was unresponsive to TAC.

I feared recurrence but was assured "it was all in the bucket" and all I needed was to have the recommended radiation and take Tamoxifen. They told me since I was ER+, the hormonal medication was even more important than the chemo anyway. I agreed and began to recover. About a year after I finished "active" treatment, I was having shortness of breath with tremendous pain. I went to the local ER and was given a CT scan to check for embolism (I had a clot after my reconstruction a few months earlier). None was found. What they did find was a 5.6 cm tumor in my mediastinum and multiple smaller masses. Tamoxifen had failed to protect me. I had radiation to the tumors and followed up with what was supposed to be 6 cycles of abraxane/carboplatin/avastin – 3 weeks on/1 week off beginning in July. On September 19, 2008, I was found with No Evidence of Disease. The tumors were gone! I had completed 4 cycles in November when my oncologist suggested I stop to give my body a rest (the carbo was really tough). For maintenance, I would have my ovaries removed and go on another type of hormonal drug, Femara. Seven months later, a small lesion was found on my liver. A follow up MRI showed it to be a benign hemangioma… this diagnosis was proven false in December, 2009. A new CT scan showed the mass had enlarged to 2x4cm and there was another smaller one. Both were cancer. My oncologist immediately changed my hormonal to Aromasin while we weighed my options. It was decided I would go for a liver resection then follow up with chemo. I was told this would be my best chance at survival. After finding a willing surgeon, a consult, and pre-op procedures, it was 6 weeks before I went for the surgery. When I woke up, I thanked the surgeon… he said "don't thank me yet, your liver is covered with cancer. There are uncountable lesions on all quadrants of your liver as well as multiple sites around it. Your cancer is inoperable. " It would need 4 weeks to heal before I could begin any sort of chemotherapy.

In this time, my husband and I prayed for a miracle. In March, 2010, we changed oncologists where I had updated scans – including a brain MRI which showed 4 small lesions. Also, the situation in my liver was dire. It wouldn't be long before my liver began to fail. I was given SRS radiation to my brain lesions and then began xeloda/gemzar with avastin. After 2 cycles, my PET scan showed No Evidence of active Disease. TWO CYCLES! We had received a miracle! I completed 6 rounds doing 2 weeks on/1 week off and finished in August NED. I have remained on Avastin (with faslosex) for maintenance. My most recent scans in earlier this month continue to show No Evidence of Disease. I shudder to think what may become of me if Avastin is taken away.

Wednesday, June 1, 2011

Sign the Petition to Save the Avastin Women which will be Submitted to the FDA June 28, 2011!

I hereby urge the President of the United States of America, the Congress of the United States of America and the Commissioner of the Food and Drug Administration to act immediately to protect women with metastatic breast cancer (MBC), an incurable disease that kills 40,000 women per year.

We the People petition you to grandfather access to the drug Avastin for the current 17,500 patients, as well as protect their private insurance and Medicare coverage for Avastin. Without Avastin, women will die and without keeping their coverage intact through private insurance or Medicare, the drug will be unaffordable for most.

We further insist that you find ways to keep Avastin on the market for all patients who can benefit from its safe usage. We beg you to allow further trials for Avastin following FDA guidelines and to encourage further research to determine genetic markers for women who might benefit from Avastin.
We also implore you to explore ways to improve the FDA's drug approval process without reducing the safety of drugs reaching market.  The quicker patients have access to safe drugs, the more they can be helped.

We appeal to you to adopt common-sense approaches to allowing drug companies to donate drugs to people in need on a compassionate use basis.  Drug companies are restrained in donating on a compassionate use basis because of uncertainty of corporate and personal liability. This uncertainty must to be removed to help the needy.

We are a civilized society that values life. We also cherish individual freedom and the right of a patient to choose her medical options with her physician. By acting on this, you will confirm our belief that Life, Liberty and the Pursuit of Happiness is an inalienable right for all, including the seriously ill.

Support FAMEDS By Joining the FDA Hearings Protest!

Protest at FDA Hearings on Avastin

Freedom of Access to Medicines plans to hold a peaceful protest outside the FDA hearings on Avastin on June 28th, 2011.

The location of the June 28-29 hearing will be the Great Room on the FDA White Oak Campus located at 10903 New Hampshire Avenue, Silver Spring, MD 20993. For more information about the White Oak Campus, please click on this link:

Avastin Protest Sign Up:

Support FAMEDS by Donation - Less than a Month Left!

This grassroots initiative to save the Avastin women need, can only succeed with your generous support.
Please support us if you believe strongly that:
  • Life is supremely precious and that we cannot consign women to premature deaths because a government agency refuses to act rationally and responsibly
  • We should not deprive women of the right to choose their life-saving medicines with the advice of their doctors
  • Life, Liberty and the Pursuit of Happiness are worth defending, especially for those in need of our support in the hours of their greatest need
  • Government should not interfere in the most intimate aspects of a person’s life and their most precious individual liberties by trying to make life and death decisions best left to patients, their families and doctors
  • We need to send a loud message that limiting access to medicines that work safely for some is the wrong path for America
We thank you for your kind consideration in fighting for the Avastin women. Today the Avastin women, tomorrow a different medicine that you or your loves ones may need.
If you or a loved one has cancer or previously had cancer or another serious illness, you probably never gave a second thought to access to these critical medicines used to treat the condition. Imagine if you found a medicine that worked successfully for you but then were told by a government agency that in fact the drug did not work sufficiently well on average, so that you would be unable to use this drug.

FAMEDS operates as an extremely lean organization so that your dollars go to the cause, not to big overheads. There are no salaried employees as all work is performed on a voluntary basis. This grass roots approach to volunteerism is designed to eliminate any potential conflicts of interest.
Donations will be used primarily for the following purposes:
  • Promoting the mission of FAMEDS and the plight of the Avastin women.
    • This includes development and maintenance of the FAMEDS website, blogging, Tweeting, Facebook , LinkedIn and other social media activities
    • Writing and placing articles for publications in newspapers
  • Educating the public, politicians and others of the Avastin issue
    •  This includes travel to key constituencies, printing documents, etc.
    • Outreach to talk radio, TV and other media
  • Pursuing legal options to protect the Avastin women and reform the FDA
    • Legal action is extremely expensive, especially against any federal agency

Tuesday, May 31, 2011

FAMEDS Featured on Detroit's ABC Affiliate WXYZ Channel 7 News

FAMEDS Founder Terry Kalley is Interviewed about his fight against the FDA in order to continue Avastin use for Metastatic Breast Cancer Patients, including his wife.

Friday, April 29, 2011

Oncologists, Doctors, Physicians Assistants, Nurses and other Health Care Professionals

Please share your thoughts with your colleagues as you bring a medical perspective to the issue. It may help the discussion if you indicate your background and medical qualifications, i.e., are you a breast cancer oncologist, a nurse, a PA in breast cancer treatment, etc.?

Influential groups such as the NCCN have continued to call for Avastin to remain as an option for metastatic breast cancer treatment, despite the FDA’s move in the opposite direction. Who’s right and why?

Is the FDA doing the right thing in protecting patients or can patients and doctors decide on the benefits and risks themselves?

What course of action should the FDA and Genentech take with regard to Avastin?

How will this affect your pledge to the Hippocratic Oath, if you are forced (for insurance of other reasons) to pull a drug from a patient when it is working for them and they may have few if any alternatives?

Cancer Patients using Avastin for Metastatic Breast Cancer, Their Family and Friends

Are you a current Cancer Patient Using Avastin to fight Metastatic Breast Cancer? Or are you a family member, friend or supporter? It may help if you indicate your connection to Avastin.

Share your thoughts on all aspects of Avastin from medical success to what you feel about the FDA’s position to move Avastin off label.

Tell us what you think about the FDA not allowing the patients or their advocates to speak at the FDA hearing on June 28th & 29th in Silver Spring, Maryland? Do you support Freedom of Access to Medicines with its planned peaceful protest outside the Avastin hearings?

Are you angry? Are you sad? Are you scared? What do you really think and feel?

What’s going to happen to the Avastin patients & what else can we do to help them?

Concerned Citizens from the Left and Right, Lawyers, Activists, Tea Partiers, Libertarians

The issue of the FDA potentially pulling the Metastatic Breast Cancer Drug Avastin off-label is an action that affects both Democrats and Republicans. It raises deep fundamental concerns regarding our rights to Life, Liberty & the Pursuit of Happiness.

Is this government interference in what should be the most individual of choices or is this the government looking out for the best interests of the public?

Is this related in any way to Obamacare or a completely unrelated matter?

Do you see this as another step against a woman’s right to choose?

Or is this the ultimate threat to right to life?

FDA Employees, Pharma and Bio Employees, Medical Advocacy Groups, Patients with Serious Illnesses, Other with interest in the Medical Community

Please comment and share your thoughts on the issue of the US FDA taking the Metastatic Breast Cancer Drug Avastin off label.

Is it the right decision or could it be handled differently?

How will this affect drug development in the U.S.?

Do you fear that this will slow development of other drugs for other serious illnesses?

What does this mean for our economic competitiveness in pharma and bio?

Is the FDA too harsh in its dealings with drug companies or does it need to crack down further on dangerous drugs reaching market?