An amazing chain of events occurred last week that I am still processing. As you know I was not able to get Ipilimumab for my latest treatment. For those of you who don't know, Ipilumumab is an antibody that activates the body's immune system to fight melanoma by inhibiting the cytotoxic T lymphocyte-associated antigen 4 (CTLA-4) molecule. CTLA-4 is a molecule on T-cells, a type of white blood cell that plays a critical role in regulating natural immune responses. The presence of CTLA-4 suppresses the immune system's response to disease, so blocking its activity stimulates the immune system to fight the melanoma. I am hoping that after taking a Chemo Cocktail and Braf Inhibitor this month, the "Ipi" drug as it is called, will be through Internal Review Boards and available in Chicago.
So why am I amazed. Simply put because of YOU. For the first time in five years of fighting Melanoma, I was told I could not get access to the optimal treatment choice for my current situation. My response was to ask for help. You have no idea how many of you and your friends and associates rallied for my cause. We're talking hundreds of contacts made. I am still blown away by the magnitude of what you all tried to do for me last week. If anyone doubts that we are a "capable" people, they should be blessed with what I witnessed. Calls, emails, direct conversations circled the bloody globe last week in search of Ipilimumab. Bristol-Myers Squibb was contacted up and down their organizational chart. YOU all put this into action and I am truly humbled.
Please know that I hold no ill will toward BMS or the FDA. I understand how Internal Review Boards work. I understand how new manufacturing protocols must be approved. I also know a lot of Melanoma patients need this drug and that I would never want to displace someone already in line. Rather than dwell on what was not available, my sights are on encouraging BMS and the FDA to drive hard on the due diligence necessary to find out if Ipilimumab is a viable control for Melanoma. There is no time for finger pointing. People's lives are on the line and I for one intend on seeing my son graduate from high school on June 6th. Two days ago marked my fifth year living with this disease.
In gratitude to everyone who rallied on my behalf, I send out a wish of good health to all.
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2 comments:
Hi Susan,
Thank you for the update on your treatment and the response to your request for help with Bristol Meyers. As the quote from Hillary states "It takes a village" and it really takes a global village. We are all thinking of you. Enjoy your trip to Florida next week.
Take care,
Ginny
Dear Susan:
I was happy to hear that your "Spring Break" in Florida went well and that the weather co-operated to provide you all with some richly deservered, quality time together.
Everyone who has been following your remarkable journey was as disappointed as you must have been, that the last treatment did not go well. We can only hope and pray (and rest assured that there are prayers aplenty being said for you, your family, and your doctors) that the current treatment holds the line and that Ipilimumab will be available for your use when this treatment is completed.
God bless you and give you guidance in your efforts.
Sincerely,
Connie Beran
Venice, Florida
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