kvolland

Steve –
Welcome to the best little family no one wants to be a part of. Surgery is the best thing you can hope for and since you have one and getting ready for another you are miles ahead. It is shocking to hear those words….I am a nurse and didn’t even know what it was. I looked it up just like everyone else and found this wonderful family.

We will be here for both of you. And sending positive thoughts for both of you.

KrisV

You know that just cracked me up. We have made decisions that way too. Gosh, I really don’t want to call right now…..we know they will make us go in and now’s not a good time. The worst times was when my son abscessed after his surgery and HE wanted to wait until later in the afternoon to call so he could finish something up. I let him.

Temps seems to be part and parcel of this disease process. Mark’s GI doc said that in his case it was to do with narrowing of the surgical connection between his liver/bile ducts and the small intestine. Causes the small intestine contents to pull/back into the liver/bile ducts. They wanted to put a stent in but that too increases the risk of infection so we declined.

Hope your temp stats down so you can watch the playoff game.

KrisV

Julie –
I am glad that you persisted and are getting some attention. Out ONC says anything over 100 can be the sign of a problem. Mark had three different times that he had that problem after surgery. The first time was three days after his first port was put in. He ended up in the hospital for 5 days. By the third time they pulled the port but they believed it was actually a GI source which seems to have cleared itself. He went from Sept to April with no problems then a couple of weeks ago it popped to 101.7 but they never found the source.

I will say that Levaquin (levofloxacin) has been our best friend over the last few months. We have a long-term prescription from the ONC for it. As soon as Mark creeps a temp then we start it. Used it for an upper respiratory infection and once for a sinus then the last time for the unknown temp in April.

Also you can run a low-grade temp if you are dehydrated. Usually in the 99-100 range for most people.

I also wonder about the interventional radiologist that put in you port. We have had two of them and I have seen many placed and they have always been placed by a surgeon under light, general anesthesia. I wonder if there was a reason for that.

Hope things turn out well for you.

KrisV

Julie –
So sorry you had a bad day. I understand how you feel and like Lainy said it just means you are normal. The grandson therapy should work wonders, I know my grandson therapy helped bunches over the last year.

Here’s to today being a better day.

KrisV

Lola –
I know you said they switched to Oxycodone, is it the form with Tylenol in it like Percocet or Roxicet? If it’s NOT one of those then you may trying giving her some Tylenol 3-4 times during a day. The narcotics work in the brain to change your perception of the pain so you have pain but don’t care. The Tylenol works out on the area where the pain comes from. If her pain med has Tylenol in it then don’t double up.
I would also do as Lainy said and give her a small pillow to hold against her belly to splint the area when she coughs, sneezes, laughs or moves around.
Also gas can be an issue. Something like Simethicone (Gas-X) can help break up the gas bubbles.
Give the surgeon or ONC a call to see if there is anything else to do and if you should be worried.

KrisV

Hi Vince –
Welcome to our little family. Many of us have been in the same boat with making that decision. My husband was diagnosed in May 2013 with perihilar CC with surgery in June 2013. His tumor was 2 x 3 x 2 with one positive node out of seven and clean surgical margins on the second try.They did find some invasion along the nerves and lymph system too. We opted to do 6 months (12 treatments of Gemcitabine/Oxaliplatin) then just finished 25 doses of IMRT with 5FU infusion. We chose to go that route based on our ONC recommendations due to the concerns over spread.
Our doc said he basis his recommendations on four questions: How big the tumor was, clean wound margins or not, any metastasis and the differentiation of the cancer (how much the cancer cells are like the original cells). According to him they considered his rather large, clean margins but on second try, positive node and moderately differentiated so that was two for chemo, one so-so and one against it.
We went for it because my husband wanted to give every chance there is to beat the cancer and not have it come back. But not to say that there are times he wished he has skipped it all….especially right now since he is ill from the chemoradiation he just finished.
Hope this helps.

KrisV