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.