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Pancreas Cancer

The 'New Norm' Facts was posted 05/27/2014 01:09 pm by Mary Y - PA
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I came here in February 2005, a week after my surgeon broke the news to me that I had Pancreatic Cancer, and, if I wasn't eligible for the Whipple, I had at the most six months to live.

After several blood tests, X-rays, 2 ERCPs, MRCP, CT Scan, MRI, Fine Needle Biopsy,Ultra Sound, EUS, Stress Test, EEG and EKG, it was determined that I was eligible for a Whipple, but all the tests, with the exception of my CA19-9 were 'inconclusive'. I didn't want to believe him even after all these tests as all we knew for certain was that I had jaundice, which was fixed with a stent and my CA19-9 was at 444. I felt fine and didn't have all the other symptoms associated with PC. At the beginning of April, my wonderful, dear surgeon called me and said 'I just KNOW for sure you have Pancreatic Cancer, I can't explain why besides the jaundice and elevated CA19-9. I have scheduled you for a Whipple on Wednesday April 13th; BUT I will do a Laparoscopy before the Whipple just to make 100% sure that a) You do have PC, b) it didn't spread. Please put your life in my hands and I promise you I won't let you down'. On 4/13/05, I had the Whipple followed by 5/FU, Radiation and 4 cycles of Gemzar (100 minute infusions).

I looked for answers here on certain recurring problems BUT every Survivor here said that they were adjusting to the 'New Norm'; hence this post.

Pancreatic Cancer IS NOT CURED by the Whipple or Distal. There is an 80% recurrence rate. While the Survivors that I have contact with appreciate the reprieve we've received, quite a few of us deal with the following on a daily basis:

1. Food disagreeing with us causing us to double over in pain. It doesn't matter if you are a 1 year or 10 year survivor. We are constantly challenged by what we eat. One day our system will accept the food without any problem but the next time, we will become nauseous or double over in pain. A lot of us use a food diary hoping we can find a rhyme or reason for this.

2. Flatulence and stored gas problems. We can go for days without passing gas and wherever it decides to stockpile itself becomes extremely painful. OTC meds do not work and until it comes out, without warning, it hurts like hell.

3. Diarrhea or Constipation - Get used to being surprised. You can have the trots for a few days and then absolutely nothing for the next few days. I used to be on OTC stool softeners, now I'm on Prescription Meds. Intestinal obstructions do happen and require trips to the hospital at least a few times a year.

4. G.E.R.D. or more affectionately referred to as acid reflux is quite common. Some Survivors get it so bad that they could swear that they are having a heart attack.

5. Ascites. Some of us have had a bout with ascites up to a month after receiving their last cycle of Gemzar, predicating a trip to the hospital to be drained (paracentesis).

6. Mystery pains. Please understand that doctors know very little about PC. Although the pains are very real, they haven't a clue, so they'll 'suggest' that these pains are all 'in our head'.

7. Blood clots. PC DOES cause blood clots. Most of the are small and pass without incident. IF, however, one leg or foot or ankle begins swelling, there is a good chance we have a blood clot.

8. Fatigue. Survivors are quite frequently held hostages by fatigue. Our guess is that we are lacking necessary vitamins and minerals that are no longer processed normally by our system. Naps are required to combat this.

9. Insomnia. All of us wish for a good full night's sleep. At most, we'll get a couple of hours and then play catch up during the day.

10. Depression. All of us suffer from depression. We want things to go back to the way they were before we were dx'd with PC. We're tired of being sick and we get a good dose of Survivor's guilt every time we read of someone's passing.

11. Good Days v. Bad Days. Granted, even healthy people get bad hair days. We get bad body days. We can't eat because everything we see, smell or taste gives us an upset stomach or makes us nauseous. Fatigue is so bad, we drag ourselves out of bed wondering if we'll have the strength to make it back to bed and depression hits.

Caregivers, the biggest problem that ALL PC Survivors encounter is that unlike other cancers, we are NOT cured and by referring to our on-going issues as the 'New Norm' is perpetuating a myth that we are getting better. OUR caregivers and loved ones seem to think that at our 5 year anniversary we are cured and do not believe us primarily because PC is compared to other cancers. I hope this helps future Survivors. Please, please live each day to the fullest and appreciate everyone and everything around you. Knowledge IS Power and Prayer IS Strength and each and everyone of you remain in my thoughts and prayers!

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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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