THE JOHNS HOPKINS MEDICAL INSTITUTIONS
Pancreas Cancer Web


RICHIE H


I am a 48 yr old female w/ stage 4 pc in the tail and mets to an abdominal lymph node. I was diagnosed May 2007.

HISTORY: I am a Clinical Laboratory Scientist/Medical Technologist. I was working in a small hospital laboratory at the time of my diagnosis. I started the 'journey' over Easter of 2007, when our small community, nursing home and hospital was involved w/ a Norovirus (norwalk) outbreak. I was involved in the processing of samples and had started w/ the diarhhea Weds. before Easter. A great self medicator, I took some immodium and had no diarhhea after that. I did have extreme stomach pain and some vomiting. By Tuesday, after Easter, I started having a pain in my left back that woke me up at 0200. I would turn on my stomach and felt a 'pine cone' sensation, not really pain, but uncomfortable enough to make sleep impossible. This 0200-0300 awakening continued and I went to a doctor..2 Mondays after Easter. She did a complete blood workup to include a full chemistry panel and CBC. She also did a flat plate of my abdomen. The labs were within normal limits. The Xray showed I was very constipated. She told me to go home, do some fleets see if that helped the pain. The Fleets helped a bit, but the pain in the 0200-0300 was still waking me up. A week later, I wrote everything down and gave it to my family practice doctor's nurse. My doctor contacted me immediately, repeated by labs, included a cardiac profile, EKG and catscan. My father had died at 48 yr, from a poorly placed peritoneal dialysis cath, that caused an aneurism that led to his death.

The labs were normal, but the CTScan showed a 5cm mass in the tail of my pancreas. I was scheduled w/ a surgeon for a consult. We my husband and I visited him, we found out the my family practice doctor demanded a second opinion on the CTscan because she questioned a 1cm shadow in my abdomen.

The following Monday, I had a CT guided biopsy of the abdominal mass. On Tuesday, May 1st 2007, my FP doctor came to my house and told me I had pancreatic adeno. We scheduled an appt. w/ an oncologist I had worked with and trusted and that my FP doctor worked well with.

My family has a few PhD's and medical people and many wanted me to go a larger center immediately. I had my 1st appt. w/ my Oncologist and he told me he would refer me, but would recommend immediate treatment w/ Gemzar as that was probably what any large facility would start me on and wouldn't mess w/ any other protocols.

I did ask for my pathology to be sent to Mayo for a second opinion, just in case it was lymphoma. No need to be reckless. Mistakes can be made.

We started the Gemzar. By the next week, I had a Petscan done and I was able to lay on my back for the 1st time in more than a month! The petscan showed 'hot spots' in lymph nodes around my aorta, abd area and a few things in the liver. For this reason, we did not do radiation because the CA was too scattered.

The third week prior to Gemzar, my labs showed a Platelet count of 30,000. My nausea was nasty, I had weird 'stripes?' up my shins and middle back that were hot, like a burn. I had some mouth sores. We cut the chemo to 75% of the recommended dose and went to 2 weeks on , one off and switched my anti-nasea to Emend.

By July, my FP doctor and Oncologist, suggested if I was still interested in another consult. They set up a referral at Sloan-Kettering in NYC. We called Sloan and they wanted us to continue the Gemzar, but get a new CT on week prior to our trip out there.

Sept. 13, my second CT showed a 50% decrease in the pancreatic tumor. The abdominal mass had shrunk. We went to NYc and saw Dr. Veeech at SK. He did a thorough exam and told me he would not do anything different. Because the gemzar was shrinking the tumor, it would be best to stay on it until the pc developed resistance to it. He also mentioned we could add Tarceva, but it would probably only add about 14 days to my survival. I am looking at quality of life and am not adding the Tarceva. The acne rash looks very painful and I have such sensitive skin, 14 days more, doesn't compute for me.

We were relieved that I was getting exactly what SK would have me on...here on the Prairies of Montana.

I have continued on w/the Gemzar. I had my 3rd CT scan Feb 28, 2008 and we saw more shrinkage...38%, which puts the primary tumor at 1.8cm. The abd. mass is still apparent, but smalled. There is a small mass on the liver, but we aren't sure it's pc and the radiologist and my oncologist don't think it is.

I forgot to add...my Ca-19 levels started at 490, dropped to 180, kept dropping and are now at 16.

Starting in Jan. we bumped up the Gemzar to 110% of the baseline dose. I get about 1350 to 1450. I also give myself Neupagen shots on weekends following chemo.

We did look into cyberknife a few weeks ago. Because I'm doing so well at this time, the radiologist told me the side effects would not be worth the risk. Also, because it would be palliative, not curative, my insurance would probably not pay for it. (about $60,000)

I am relieved I did not have surgery. Professionally, I have seen too many patients lured into a false sense of security by surgery, only to fall to complications of clots and increased mets. For me, the pc in the tail of the pancreas, and the mets, mean microscopically pc cells are already through out my body and while not apparent on scan, they are there. Plus, my insurance wouldn't even pay for my PEtscan.

I have been married to Steve for 25 yrs and we have 2 boys ages 17 and 14. We had been loved and prayed for and supported by our friends and family. The PC has been a blessing of sorts. I have met amazing people and have been able to tell people I love them and let them tell me the same. I have a strong faith in God. I exercise, I laugh, I love.

I know we all are wondering about miracles, etc.,but I think everyday is a miracle. I try not to be overcome by fear and doubt and relish in the taste of a pear, the hug of my kids, the love of my husband, the sweetness of friends and family. $hit happens. God doesn't love you less if you get cancer and He certainly still loves you even if you don't get a 'miracle' cure.

I do updates on carepages.com under richiehamel. This was posted 3-21-08. Good luck to all of you! Richie


Posted 03/22/2008 04:08 am by Richie H
E-mail Address: magenswish@yahoo.com

Return to Main Message List
Responses

No replies on file.


*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.
FULL DISCLAIMER


Pancreas Home | Surgical | Medical | Basic Sci | Docs | Registry | FAQ | Appts | Chat

Feedback | Pathology Home | Oncology Center Home
Copyright © 2020 The Johns Hopkins University, Baltimore, Maryland
Last Modified: 11/11/2002 10:50 am