Good Morning to All,
This message is posted with a note of concern as I, too, had PC and the Whipple Procedure in May 2003. I had 12 weeks of Chemo and 20 rounds of radiation. None of it was fun; but it proved successful at the time. I have a wonderful endocrinologist (I recommend all pancreatic cancer survivors have an endocrinologist as part of your treatment team - surgeons and oncologist have their own role) But, I agree that the Creon (pancreatic enzymes) works great for controlling diarreha and putting those much-needed nutrients back into your body. If you are like many of us, you are probably B-12 deficient also. I still take a B-12 injection once monthly in addition to my vitamins and other meds.
Last week I was diagnosed with Recurrence - the words none of us want to hear. We knew from the beginning that the pancreatic cancer had mets somewhere in my body because they had found it in lymph nodes; but many MANY tests did not show the disease in any of the major organs. For the past 4.5 years I've been encouraged with Negative Blood Test and good results from multiple (PetScan, CTs, MRIs...etc) scans every 3-6 months. Following what I "thought" was the FLU, I started having some unusual pain in my low back, kidney area. Have NEVER had a kidney infection in my life; but everyone said it sounded like one. So following a standard urinalysis at my primary care office, I was told that I probably needed to follow up with the oncologist (which I was scheduled to see anyway in March) A blood test revealed that my kidneys were not functioning as well as they had been 5 months ago. He ordered an MRI with contrast, and I was informed last week that my Liver has Innumerable tumors which appear to be carcinoid, and that my Kidney may also be affected; but further tests would have to be done. My physician has acted quickly, and over the past 2 weeks I have already had numerous blood chemistry schema and MRI, and Now... TODAY.. I am in Houston Medical Center (doing this from their library while waiting for my 10am appt time) having the 2nd day process of an OstreaScan to identify ALL of the carcinoid tumors in my body. IF the disease is concentrated in the Liver alone; then I've been told an embolization is a treatment option; however, if it appears in other parts of the body; then systemic chemo and possible radiation will be the order of the day.
I am looking forward to ANY correspondence that might give me treatment options that might have worked for anyone who has been diagnosed with recurrence; or specific to liver. With the number of tumors in the liver, it appears there certainly won't be any surgerical options for me this go around.
But, I do want to leave with a Happy Note. I have throughly enjoyed and feel extremely blessed with the past 5 years. My whipple procedure was the perfect option for me at the time - my surgeon was the BEST and we remain good friends. It afforded me 4.5 years of Quality Time with my 2 children and 4 grandchildren. My treatment gave me the opportunity to make it to Retirement age, and still be able to spend time with my mother before her passing in January. But most of all, God gave me a 2nd chance in Life, together with MANY memorable experiences and adventures with my Husband of 2 short yrs (my first husband of 38 yrs died of stomach cancer in Feb of 2003, just 3 mos prior to My diagnosis)......and for ALL of this, and then some, I am extremely Thankful and feel so blessed.
Thank God for our doctors, nurses, and hospitals in the Houston Area... and most of all for our own personal Care Givers - our Family & Friends; without them None of this would be possible. I was told 5 years ago that if you had pancreatic cancer there was about a 4% chance of survival....With the advances that have been made over the past 5 years with all cancer treatment, I am ready to face whatever comes next. Wish me Luck!
Granna-J - 59 WF from Victoria Texas