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:
Showing posts with label Women. Show all posts
Showing posts with label Women. Show all posts
Tuesday, June 28, 2011
Wednesday, June 15, 2011
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 Terry.Kalley@fameds.org
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 Terry.Kalley@fameds.org
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 Terry.Kalley@fameds.org
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 Terry.Kalley@fameds.org
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 Terry.Kalley@fameds.org
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 Terry.Kalley@fameds.org
Shannon's Story
via the South Charlotte Weekly in 3 Parts:
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 Terry.Kalley@fameds.org
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 Terry.Kalley@fameds.org
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 Terry.Kalley@fameds.org
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.
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 Terry.Kalley@fameds.org
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.
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.
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