1 (edited by linamize Mon, 26 Aug 2013 20:02:18)

Topic: high infection

I don't really know wat stage my cancer is. I had so much bad news enough I didn't ask about it. I have blockage almost all over the biliary tree. I have 8 internal stents n two intra-external drainage. It hasn't spread any where I believe not even to the lymph nodes, but too bad due to none stop infection I haven't been able to do anything but radiation.
At first only a mass was found with the gall bladder n the surgery made me very very sick due to blood infection. The blockage of bile ducts was discovered late n I was very weak that they put me on hospice for two month. After two month I insisted on trying something because I gained little energy. They decided to give me radiation n little chemo unfortunately the infection got worse. Regardless stenting n drainage.
I heard a good news earlier today, radiation is working well n is shrinking the tumors
I heard a discouraging news before that, I have many bacterias that developed resistance to most of the antibiotics n I am left with three possible antibiotics.
any body have a suggestion on wat I should do? I don't want to give up yet, it was so bad begin in hospice for two month I want to die trying with hope if that's wat it takes.

Re: high infection

Dear Linamize, welcome to our remarkable family, sorry you had to find us. I have one thought and that is with all the stents you have is it possible that one or more is infected and needs to be replaced? I am assuming they are plastic stents and if they are they need to be changed like every 6 weeks to 3 months. Wow, I never heard of anyone having so many stents. My Teddy used to get like 2 big infections a year and the ONC would put him immediately on Levequin, an anti biotic. The ONC said that Levequin would take care of any kind of infection and it sure did. May I ask where you are being treated? Have you thought of getting another opinion?  The good news is that the radiation seems to be working and that is a GOOD thing. Please keep us posted on your progress and I am wishing you the best.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: high infection

I am in mgh hospital, yes my stents are replaced every 5 to 6 weeks. The GI ERCP Dr told me total of ten stenting is unheard of.  As of the antibiotic I will mention that to the infection disease Dr hoping it will work. Thank u for welcoming me, I look forward to learn more.

Re: high infection

linamize....I too would like to welcome you to our site.  Mass General sees quite a few Cholangiocarcinoma patients hence, your doctor's statement regarding the unusual amount of stents resonates on this site.  So good to know that you are responding positively to the radiation treatments.  I wish for continued success and please continue to share more with us. 
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: high infection

Hi Linamize,

Welcome to the site. Sorry that you had to find us all here and I am sorry also to hear what you are going through right now, you really have so much to deal with at the moment don't you. I am glad though that you have joined us here as you're in the right place for support and help and you will get much of each from everyone here.

I too have never heard of someone with so many stents in place, my dad had only the one metal one in place to deal with his bile duct blockage and that worked quite well for him. Unfortunately infections are very common with this cancer and I hope that your doctors can get you on some antibiotics that will help with these infections. Please see if your docs can get you on something new here and let us know how that goes for you.

That's really good news about the radiation working for you and I will be keeping my fingers crossed for this shrinkage to continue. I assume that this treatment will be continuing for you? Perhaps if your docs can get to the bottom of these infections and deal with them then they would be able to try something like chemo again for you. Have your doctors talked about surgery of any kind or have the ruled that out just now due to the infections?

Please keep coming back here. We will help as best as we can for you. We are here for you and we care.

Best wishes,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: high infection

Thank u for the warm welcoming, I really appreciate.
Gavin, as of surgery I think,I qualify for living liver donor or liver transplant only but due to my really bad reaction on my first surgery to remove gall bladder n the tumor there, all the doctors believe I can't go to surgery.
My hope is if radiation works very well n infection is controlled to start chemo, if I can go one week with out high fever. Fingers crossed with Gods grace I might.
I am glad I found this group

Re: high infection

We're glad that you found us as well Linamize! Although we wish that you hadn't had to find us of course. Let's stay positive here and focus on your radiation working well and hope that that will lead to further treatments becoming available to you. My fingers too are crossed for you on no high temps and control of your infections right now. And please remember that you are not alone in this, we are here with you now.

Best wishes,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: high infection

Hi Linamize,
My mother had 2 internal stents and one external stent.  She also had numerous infections and was in the ICU one time with sepsis.  After the sepsis, that's when her condition worsened.   The infections took a toll on her. increased weakness, loss of appetite, muscle mass,etc... I think the infections ultimately lead to her passing rather than the cancer itself.  She could not have the metal stents because  of the narrow passage. The internal plastic stents continued to clot off due to sludge, resulting in infections. It was awful. She too was on IV ATB at home.  We were torn because without the stents, the bili levels, ammonia levels would increase, but with the stents, infection... it's a tough situation.

Anna