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Old 01-06-2009, 08:46 PM   #1
ameraumi
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Our journey - DH has Pancreatic Cancer

I have shared a few PMs with Marsha and a few other DISers and I thought it would be good for me to come out of the woodwork.

DH was diagnosed with Pancreatic Cancer on Sept 30, 2008.

He started out with stomach pains, stone colored bowels, and dark urine. I made him go to our local hospital on Sept 27th because of the pain. It was only then I noticed he was jaundice. I never noticed it at home, so I do not know if it was the lighting or just me totally missing it. An ultrasound should there was a backup in his gallbladder so they wanted to do a CT scan to see if there were stones. At this point we thought he was facing surgery for his Gallbladder. They ruled out Hepatitis, which was my first fear. After the CT was done, the surgeon came in to tell us he was wanting Mike transfered to IU Med Center in Indianapolis as he had a mass on the head of his pancreas.

He underwent a GI scope and sure enough, the tests came back positive for cancer. It was staged a T4N1. There was some uncertainty on if he could have surgery as the tumor had wrapped around a vein and it looked as if it had touched the artery. His new surgeon ordered a more Hi-Def CT scan to see for sure and by the grace of God it was NOT touching his artery. He went into surgery on Oct 3rd to have a ******* done as well as vein reconstruction. They removed one of the jugular(sp) veins from his neck and replaced it where the compromised one was. They also removed 13 lymph nodes and 8 had traces of cancer in them. The surgeon said he was confident he removed all of the tumor. His cancer was considered Stage III.

He healed quickly from surgery and within 7 days of being under the knife he was home without any drainage tubes. We had so many people, all across the US, praying for him and I believe it was the power of those prayers that brought him home so quickly. He had some set backs as he tried to do too much too soon and pulled a back muscle.

He was asked to take part in a clinical trial for GI-4000, a new drug being researched for certain mutations of PC. This is a series of 4 shots and would be done on top of the Chemotherapy. He chose to go this route instead of Chemo/radiation. He did not have a good feeling about radiation and wanted to help someone in the future if it did not help him now. The bad thing is, the trial is double blind, which means no one knows if he is getting the real drug or a placebo.

He started Gemcidabine (Gemzar) on Nov 26th. He will have 6 cycles, 3 weeks of chemo then one week off. On the off weeks he sees his Oncologist and then do the trial "drug". He was one of the few that sees a side effect of vomiting, but so far the anti-nausea drugs help.

We did find out last week that his CA19-9 marker was higher and they need to do a CT scan to see why. It could be nothing, or it could be that the cancer is back. I am glad they are being cautious and doing the scan now, but it does set my nerves on edge.

We could use a few more prayers if you have them to give. I would love to be able to post our journey along the way if you do not mind.
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Old 01-06-2009, 08:59 PM   #2
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Prayers said and will continue.
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Old 01-06-2009, 09:32 PM   #3
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I will be keeping you in my thoughts.
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Old 01-06-2009, 09:45 PM   #4
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Prayers are on the way.

Please post your journey when you can.
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Old 01-06-2009, 11:21 PM   #5
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Prayers for your dh. I know cancer turns your life upside down. I was diagnosed 12/9. I am having surgery thurs.

I think it helps to have a supportive spouse which from your posts you are exactly what your dh needs.

My dr. says cancer makes up its own rules. Some of my tests for the rare cancer he thinks I have seem to come back normal. They will have to wait for the biopsy and mine has already spread to the lymph nodes. So I will have to fight a little harder.

I am thinking about a clinical trial too, my dr. mentioned it since my cancer does not respond well to radiation or chemo, so I think I will have to do the radiation.

The dr. says having a positive attitude helps and I also have a great deal of faith which brings me alot of peace and comfort.

Blessings to your dh and your family, I thought I read on another post that you had 2 ds., we have 3 ds and they are 17,19 and 21.

Prayers for your dh.
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Old 01-06-2009, 11:52 PM   #6
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Thinking of your family and sending lots of positive vibes from 'down under'. Don't forget to take time out to look after yourself, it can be a tough job caring for someone that is unwell.

Lots of Koala cuddles

Trish
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Old 01-07-2009, 05:44 AM   #7
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Amy:

We have spoken privately, but I just wanted to say again that I will keep you and your husband in my thoughts and prayers.

Marilyn
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Old 01-07-2009, 06:21 AM   #8
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Amy...

I am glad you posted and you know that you can pm me anytime.. As I said to you in pm, I am 4 years out so I have been there done that. Each person responds differently to chemo and so I can share how Tom responded and you can at least know how he did. Tom never got sick from Gemzar or gemcitabine.....he was one of the lucky ones. It is the standard treatment for PC, it did not work for Tom, but others it has worked for..

So, anyhow, keep in touch.. I have him and you in my thoughts.....take care, stay strong, each time you scan, it is so scary, try to stay strong..

Marsha
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Old 01-07-2009, 07:22 AM   #9
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Amy of course you will be in my prayers. Please keep us posted on his progress! I love your positive attitude! Remember to take care of yourself!
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Old 01-07-2009, 07:37 AM   #10
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ameraumi, I will keep your family in my prayers.
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Old 01-07-2009, 08:13 AM   #11
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Thank you all!

I know we will be on pins and needles the next week. Today is Mike's CT scan and then we will see the Oncologist on the 12th. I am praying it is jus a fluke and there is nothing wrong.

It has been tough on me trying to schedule time off as I run a home daycare. His dad is semi-retired and has been taking him to a lot of his treatments, as is my dad and other family members. You know it is that guilt factor right now, I want to be with him every week yet we have to have my income to survive too. I am trying to find someone that would come in and sit with the kiddos on the days we have to travel to Indy, but so far no takers. It is either not enough hours or not willing to be here all day.

Mike is supposed to check in with me later so as soon as I hear something I will check in.
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Old 01-07-2009, 08:27 AM   #12
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I am glad his and your family are there to help. Let them! Don't feel guilty or bad about it! I too run an in home day care so I totally understand how hard it is to get time off.
Do you belong to a church, club or even a Bunko group? Maybe they could help you. Also check with your neighbors and the parents of the kids you watch. Good luck. In my prayers!
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Old 01-07-2009, 01:44 PM   #13
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I know exactly what you are going through and the rollercoaster of emotions involved. Some days are better than others, sometimes you can forget what is happening for a few hours, but it never leaves you.
I am thinking of you, and your times ahead.
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Old 01-07-2009, 02:34 PM   #14
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Prayers heading your way. Coming here and posting about it may not change things either way but the power of any comfort you will find on this board may help to get you through it. WE are all hear to listen.
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Old 01-07-2009, 08:27 PM   #15
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Well we are now in the waiting period until Monday. It is going to be a long 5 days.

Everything looked good today and the RN we are working with was very happy with his labs. WBC are low, but not low enough to really worry. He is just so tired and has slept since the minute he got home. Good new is no vomitting so far. That in itself is a great thing.

Our family is actually going thru 2 cancers right now. Besides Mike, we also have my Granny. She was breast cancer free for 16 yrs and it came back last year. The local cancer center has been treating her terribly and I talked her into going to Indy for a second opinion. She went today and I am so glad she did! It turned out her type of cancer thrives on hormones and she was creating too much (I believe that is how mom explained it). The drs here never once mentioned that to her! So she will be on a med to lower the hormone level and then they will see her in 6 wks to go from there.

So here Granny is with Stage IV cancer and Mike with Stage III. It has been a roller coaster ride for all of us. My mom does not show emotions so I feel like I have to hide some of my feelings with her. I was never really close to her so I rely on my friends and Mike - but then I do not want to worry Mike too much.

I do appreciate hearing from you all. If anything this will be a good place for me to vent and air my feelings. Thanks!
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Another trip to come sometime...
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