My husband is 48 and had whipple surgery on 1-29-08

 

On 2/25/2008 TessG wrote:

Kristi, My husband is 53 and had his Whipple at the University of Kansas Med Center on January 15. He was diagnosed in December and is stage 3. We, too, are dealing with wound issues, some nectroic tissue had to be removed last week so he has two open areas that have to be tended (one about three to four inches long and the other is about two inches long) but he's doing OK with that. When you mentioned that chemo would have to be delayed due to your husband's wound, it reminded me of what our oncologist said when we met him for the first time last Friday. I was very concerned that chemoradiation would be delayed due to the open wounds (one of them is quite deep) and he said it was not necessary to wait, that yes, a lot of people do receommend delaying chemo if there are wounds but he does not believe that the patient who is otherwise healthy will be damaged by starting therapy with these kinds of wounds. He actually said he thought that philosophy was crap--and at that moment I knew I was going to like this guy. We just have to follow the same precautions we are now--avoid large crowds (as if he'll want to go hang at the mall anyway!) and use lots of hand sanitizer. You may wat to press your oncologist a little bit to see if he might relent and allow your husband to go ahead and start treatment sooner rather than later.

 

TessG,

Thanks for the info.  I will definitely try to push the issue of chemo/radiation.  My husband is just too weak right now and has lost so much weight, he cannot eat well either, even the supplemental drinks he is struggling with.  He doesn't seem to be mentally ready, and he had said at one time he wasn't going to do treatment, then another day he says he will.  The diagnosis is new and it is hard to take it in on some days as I am sure you know.

Thanks again for your information, this is great advice.

Kristi

I am praying for you. We are so lucky that my husband is recovering well from the surgery. He eats everything (but in smaller amounts) He does have the bloating, gas and stomach discomfort but these things seem to be manageable for him. Of course, your hubby just had his on the 29th so he probably just needs a little more time to get better.  It is so hard to take this one day at a time but I am starting to learn how to do that. Please make sure to take care of yourself so that you can continue to advocate for your husband. Some days are better than others. Feel free to send me a private reply if you want to "talk." I could use a "Whipple" friend myself!

I forgot to mention--I understand about the mood changes too. I have them and so does my husband (Robert, by the way) Mine is in an extreme state of denial at the moment. He actaully told me the other day that he doesn't have cancer. So I asked him why is he going to have chemoradiation and he said it was just a precaution. The two of us can be sitting in the same room with a doctor and he hears something completely different from what I hear. I was actually very angry with him because of his denial and I felt like I am the only person in this relationship who understands the seriousness of this. But then I finally realized that if he is happy in his "I don't have cancer" state, who am I to deny him that? (This of course happened after I asked him point blank if he intends to fight this or not because I feel like I have a right to know) After our conversation, I feel much more at peace. I was able to tell him how worried I am and now I feel less worried. I've decided I am not going to protect him from my feelings (but I am not going to smack him in the face with them either!). I am rambling--sorry!

Hi

 

I was diagnosed with Ampullary cancer in 2005 and had a whipple in Nov 2005 in Calgary Canada. I was told that they had taken everything with a wide margin.

12 months later I had digective issues and after testing I was told it had returned and they must have left some cancerous cells in me. The onclologists in Calgary told me there was nothing they could do for me and I should accept the fatal consequences.

 I then flew to M D Anderson in Houston for a second opinion. they offered me a double chemo treatment that they have had a 50% succes rate with in re-occurring ampullary cancer. I am on the fourth treatment of chemo and the tumor marker has dropped from a high of 158 to 48. The specialist in Houston advises me that this is a positive sign that the double chemo is working and I am confident I WILL beat this.

 My message to everyone facing this is to NEVER accept a first opinion or one they dont accept and seek a second one.

Thank you for letting me share this with everyone

 

John

My mom had small cell ampullary cancer, which is a little more agressive than regular ampullary cancer.  Ampullary cancer is not pancreatic cancer, but is so close to the pancreas, it usually invades that as well. When small cell cancer is involved, the type of chemo given is for small cell, not chemo for regular ampullary cancer. My mom had the whipple, was clear, the cancer came back in the liver. She had irinotecan chemo, which got rid of the cancer for 7 to 8 months, she was actually feeling great, but then the cancer came back.  It came back on the liver, and above the liver. She tried other chemo's but they did not work.  She passed away 2 1/2 years after the surgery.  However, I do think she would be alive today if her cancer had not been the type of 'small cell' cancer. You see, there is no cure for small cell cancer, so hang in there and don't give up.  BY the way, for all of you that do have loved one's with ampullary or pancreatic cancer, there is a group called Pancan that is pushing for more money to fight this type of cancer. Look it up on the internet, and support this group for research!  We need to find a way to test for this type of cancer for early detection.  This cancer is overlooked, we need to find ways to dectect and treat this cancer that silently kills. The group doesn't need money, it needs you to write to your representatives that go to Washington. It is really easy, they have form letters, you just sign your name. Do it for your loved ones!!

Hi,

This is probably a dumb questions but I would like to know the name of the test that measures the alkaline level. I had read a lot about this and would like to find out about my dad's ph level but this is not measured during regular lab tests.

Thanks!

Normally it is called  Urinalysis or " UA".  You can ask any lab to check urine for PH.  Another urine test called BladderCheck helps also.

 All the best

Fiaz

I am curious, what type of ampullary cancer do you have - adenocarcinoma or small cell?  What stage were you told you were at after your first surgery?  Did you do any chemo or radiation at that time?   What kind of medicines with double chemo are you getting now?

brotzdesart,

John has adenocarcinoma, Stage 4, no chemo or radiation prior to surgery and now we are getting ready to start chemo and radiation for the first time here in about 3 weeks or so.  John's tumor was located in the bile duct which blocked the liver functions causing him to itch and be jaundice.  He currently has a wound healing from the inside out, due to infection and 103 fevers for 6 days post surgery. 

Kristi 

 

John,

 If you check this site again, I would like to know what stage cancer you had in 2005 and what kind -adeno or small cell etc.  I would also like to know what type of drugs you are taking in the double chemotherapy you are receiving now.

On 2/29/2008 Hutchie wrote:

Hi

 

I was diagnosed with Ampullary cancer in 2005 and had a whipple in Nov 2005 in Calgary Canada. I was told that they had taken everything with a wide margin.

12 months later I had digective issues and after testing I was told it had returned and they must have left some cancerous cells in me. The onclologists in Calgary told me there was nothing they could do for me and I should accept the fatal consequences.

 I then flew to M D Anderson in Houston for a second opinion. they offered me a double chemo treatment that they have had a 50% succes rate with in re-occurring ampullary cancer. I am on the fourth treatment of chemo and the tumor marker has dropped from a high of 158 to 48. The specialist in Houston advises me that this is a positive sign that the double chemo is working and I am confident I WILL beat this.

 My message to everyone facing this is to NEVER accept a first opinion or one they dont accept and seek a second one.

Thank you for letting me share this with everyone

 

John