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Pancreas Cancer

Reply was posted 10/28/2013 04:38 pm by Anonymous
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Hi Heather,

They told my wife the same thing 2 years ago on July 7, 2011 when diagnosed with inoperable stage 4 adenocarcinoma pancreatic cancer with metastisis to her liver.

Many factors with regard to your Mom's current health that will ultimately dictate whether or not a 3-6 months of life left to live is appropriate for her. Everyone is different and the biggest problem with healthcare professionals today is they are driven by statistics.

Most oncologists will begin treating this type of diagnosis paleatively meaning to keep the patient as comfortable as possible during what they understand to be 'only a few months left to live.' Our primary oncologist did just that when she first suggested treatment for my wife. She is an oncologsit who understands cancer in women and NOT a pancreatic specialist. She prescribed a traditional form of treatment with the least amount of side-effects to keep my wife comfortable which included Xeloda a pill form of chemotherapy in conjunction with radiation.

My wife and I on the other hand wanted to explore options from a much higher institution of learning and research in pancreatic cancer and met with professionals at UCSF, where research and studies specifically with regard to treatment for later stage inoperable pancreatic cancer had been ongoing for more than a decade or two. Because of my wife's physical condition and age at the time of diagnosis, UCSF offered two clinical trials and FOLFIRINOX. We chose folfirinox, the most aggressive form of treatment which consisted of 4 lethal drugs administered in a 48 hour infusion through a port and began treatment in August of 2011. I doubt very seriously my wife would be alive today and in remission had we chosen the initially prescribed treatment of Xeloda and radiation.

Folfirinox, while toxic and with the risk of causing death upon it's first infusion became the perfect match for my wife and her body. She tolerated 19 session in 10 months without a break and after the first six months of treatment, the 5cm tumor on the body of her pancreas reduced in size to a mere 4mm AND the two spots measuring approximatley 1cm each on her liver disappeared and never returned. After an additional 4 months of treatments her CTscan in June 2012 after 10 months of treatment gave her her first NED reading showing No evidence of new or progressive metastatic disease and No tumor recurrence.

All treatment was stopped in June 2012 and never resumed treatment. It has been over one year now and my wife continues to be in remission with stable quarterly CTscans and monthly blood work to measure liver panels and CA19-9. Here is the thing, had my wife told me 2 years ago 'Honey, they are telling me I am not going to live more than 3-6 months without treatment and only possibly extend my life but a few more months with treatment and I just don't want to suffer anymore, I don't want to lose my hair, I don't want to experience the side-effects of treatment but just let me have the best 3-6 months left.' I would have respected her wishes and you all know where we would be today, I would have been a widow for over a year now.

So I'm hoping your Mom has the strength and capacity allowing her the options to fight this horrible thing and prove medical sciences wrong, like my wife did. You know, her team of healthcare professionals can not explain why she is alive today and why she continues to thrive without treatment going on 17 months now. They just shake their heads in disbelief when told she is in the gym 5-6 days per week performing cardiovascular, strength endurance and weight lift training 3-4 hours daily.

JeffB

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*DISCLAIMER: This page is an unmoderated forum, and the opinions expressed herein do not necessarily reflect the viewpoint of The Johns Hopkins Medical Institutions. Patients are advised to consult their personal physicians before making any medical decisions.
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