One patient with glioblastoma still alive nine years later
by happy2balive on Wed Dec 12, 2012 02:10 PM
Since my whipple surgery on 4/27/11 I have an intermittent dull ache that comes and goes. This time the episodes are happening more frequent. I had bloodwork the end of November, it was normal and ca19-9 was (9).
My next scan is scheduled for January 8, and my last one was in May. They moved me up to every six months so this will be the time. Has anyone with recurrence had these symptoms and how do you know something is not right? I read and hear about post whipple pain and nausea and my symptoms have not been that bad. When do you know to act upon them? Perhaps this is something that we all have to live with but it is scary.
Please let me know since I am getting so anxious and don't want this to ruin my holidays with my family.
by rose108 on Wed Dec 12, 2012 02:25 PM
I still experience abdominal pain 2-1/2 years post whipple. I think we tend to forget that they touch all of our insides and did quite a bit of rearranging. When I mention pains they remind me that I probably have scar tissue from the surgery. I know it is scary, but living in fear all the time is just as scary.
I think you are doing just what you should be doing. Visiting your doctor on a regular basis and having scans as needed. I think we are in for a lifetime of changes and learning to go with the flow.
Try not to worry (I know it's hard) and enjoy each day the best you can. Wishing you and yours a happy holidy season.
by zelda1 on Thu Dec 13, 2012 08:50 PM
my mum has it all the time 16 months after wipple. she also gets high temps and rigors form time to itime and no one can explain. i dont want to scare you but we have been living with this and there is no explaination . there is a wipple surviror group on face book that i found really helpful
by MisterMet on Thu Dec 13, 2012 10:12 PM
Happy2balive….if my experience is any indication, please don’t let your post Whipple pain ruin your holidays. I’ve been told that living with pain and a return of cancer are mutually exclusive. I was diagnosed on September 11, 2009 shortly after my fiftieth birthday. My Whipple was successful, a cancerous tumor was removed and I underwent treatment for the next 9 months. That was called the sandwich treatment and it consisted of 3 months of chemotherapy (Gemzar), 7 weeks of radiation/chemotherapy (5FU) finishing up with 3 months of chemotherapy (Gemzar). By the time I had my last treatment, I literally crawled into my Oncologists office feeling that I had been pushed to the absolute limits of my human endurance.
I had been experiencing considerable abdominal pain after my surgery so Oxycontin was prescribed. A couple weeks after my last treatment, I stopped taking Oxycontin and was ready to start living life to it’s fullest. I was under no restictions except for an abdominal hernia that came about as a result of the surgery. That has since been repaired. It wasn’t long before I discovered that the abdominal pain was not going away. I had various levels of pain on an almost daily basis. I took to calling these pains the octopus that lives inside me. Seems like I’m constantly massaging my abdomen and when someone noticed, I would say “the octopus is a bit cranky today”. Sometimes the pain would put me to my knee’s for a few minutes and a couple times it was like a bomb went off in me and I was actually hospitalized.
To summarize some of the salient points of how my life is affected, I would include the following items:
Lastly, I have found that as much as “post whipple pain” can be lumped into a general category; I have four distinct types of pain. The first is what I previously referred to as the cranky octopus which varies from pain level two to ten, second is a full feeling after eating (regardless of what’s eaten or portion size) that causes distress. Sometimes even a cup of cereal or yogurt feels like I just had a huge Thanksgiving feast, third is if I get too active over a period of time, my hernia repair flares up causing excruciating pain where the mesh and tacks are and last is what feels like the bomb going off that is so painful I can’t describe it as I almost lose my mind when I’m under it’s hold.
I have spent considerable time trying to find others that suffer from this disabling condition. It appears though, that between the small number of survivors and small number of chronic pain sufferers within that group, there would be too small of a control group to even think about doing any studies. It does cause me to feel quite alone at times and to sometimes question my sanity. If I wasn’t blessed with an incredible group of supportive people within my family, friends and co-workers, it seems that life could really become unmanageable.
by happy2balive on Thu Dec 13, 2012 11:59 PM
by bushy on Sat Dec 15, 2012 09:32 AM
I to have serious post whipple pain for 27 months They have recently found on the CT scan that I need surgery for a double hernia they call it incisional hernia I have been complaining for 2 years and it showed on the CT over 12 months ago they have just picked it up on a recent CT however the pain is very bad especially if I bend or stretch or walk,they are not sure if the surgery will stop the pain, if not pain management, I am on a few different tablets now so I will go to surgery with a positive attitude and hope its successful you are not alone with being a new person after whipple but the alternative does not bare thinking about at least we who have had surgery are lucky considering many can't have surgery
by bestfriendmom on Mon Dec 17, 2012 03:47 PM
My mother had the whipple in 1/19/2012. Her cancer metastatis to her liver after being NED for several months. I know that she has had pain in her abdomen on and off since the operation.
When the cancer came back we could tell something was very wrong. It was very different from what she had felt in the past. We both had a gut feeling that something was't right. You have an appointment scheduled in a few weeks, I would enjoy the holidays with your family and try not to worry about until they are over.
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