April 24, 2013 at 6:47 am #70984marionsModerator
crissi….we have reports on low white blood counts, but only one speaks of a high white blood count. The upcoming biopsy will shed a light on this puzzle. Good luck and please keep us posted.
MarionApril 24, 2013 at 1:18 am #70983
Crissie, I feel it is not how long one lives as we have many that have already beat the odds they were given, BUT to me it is to try and live long enough for more new treatments and we are getting there. Like Percy said not that long ago, we could very well be just 5 – 7 years away from new and better treaments, that is what we strive for plus the Miracles we have seen on this Board. All that will lead us to a possible cure. Attitude, HOPE and Miracles a winning combo.April 23, 2013 at 11:51 pm #70982
My dad is getting a second stent put in. His WBC are high and they can’t figure out why. He is not presenting as a “normal” CC patient. They did an ultrasound of the liver, pancreas, kidney, gallbladder…all look good but they say it is uncurable. When they replace the stent, they will do another biopsy.
I have to say…Mayo is not wasting anytime. They have had him in for tests everyday. They said they can ‘surpress’ the cancer but not cure it.April 20, 2013 at 12:31 am #70981
Crissie, you can talk to me or post or email all you want. I know you feel as though you have been hit in the stomach with a baseball bat. I promise you that no matter what the ONC decides, once a game plan is in place the fright turns to fight. You must try to be very strong as it is the only way to get through this and the best way to keep Dad’s spirit is for him to see your strength. Actually my husband, Teddy even inserted a lot of humor. Again do not say no to another opinion. We have had quite a few people who were told pretty grim news but another pair of eyes saw it differently and this can happen. After you get all the news all you have to do is get copies of his Tests and Labs and fax them to another ONC for a 2nd opinion. I don’t think one ONC has ever said no. All you have to do is click on my name to the left and all my contact info is there. Be strong! You never know how strong you are until “strong” is the only choice you have.April 20, 2013 at 12:03 am #70980
He went to Mayo for his second opinion. Since he is closer to the hospital it is the best bet for him. We don’t know much at this point. They tested his bone marrow. His WBC is very high so they are worried that he has lymph node involvement. I keep telling him that we are at the best place…that these docs he is seeing are specialists. I also tell him that we can be mad and I am mad as hell.
He sees an Oncologist and a Hematologist on Monday. Hopefully we will have more information at that time. It is so taxing for him. He has lost 10 pounds and just emotionally it is a drain.
If it works out I would like to see him, with my daughter, the first week of June. I told him we will work around the chemo if necessary.
Thank goodness I found this sight. I have no one to talk to.April 19, 2013 at 11:30 pm #70979RandiParticipant
Welcome to the site and to this wonderful community but sorry you had a reason to join us. You will get lots of support and information here from people who have had real experience as both patients and caretakers. The information you find on the web is often inaccurate and frightening and my experience has been that this cancer is difficult to predict because of the small number of people who get it compared to other cancers.
I am a 3.5 year survivor of stage 2b extrahepatic cc. I had surgery and a 6 month round of adjuvant chemotherapy (Gemzar), which while no picnic, was not horrible. I had a stent placed before the surgery and it really helped with the symptoms (itching, yellow skin, etc.).
If you post more information about your dad’s specific situation, I am sure you will get some answers to your questions.
Please keep us posted.
-Randi-April 19, 2013 at 9:46 pm #70978
Dear Crissie, welcome to our remarkable family, but sorry you had to join us. We have a search botton at the top and just type in Stents and up will come lots of Posts with stent info. My husband had stents for 5 years and had them changed every 3 months. The stents are mainly to keep the Bile flowing. I agree with Clare in that reading and believing everything is true on the Internet will scare one more that we could. I would suggest, if Dad will talk about it, and talking is good, tell him about our site and ask some questions for him so that we can give you better advise.
What do the ONCs mean at Mayo that the stent would only be good 2 months, I have never heard that before unless they meant it had to be changed every 2 month. Where is his CC located. There are many choices for chemo and everyone has different reactions. Please get another opinion. We are big believers in 2nd and 3rd opinions. Where does Dad live. Tell Dad and for you also, we try to give a ton of hope but need to know a little more to be helpful. A big key is that 2nd/3rd opinion. I do know that seeing a Grandchild is the best RX! Know that you have come to the best place to be for this and please keep us posted.April 19, 2013 at 8:37 pm #70977claremParticipant
Welcome to the forum. I am sorry that you have had to find it but now you are here you will got a wealth of advice and support. You must have so many questions flying around just now.
Someone more experienced than me will be along soon but yes, stents can be replaced. I don’t want to fire more questions at you but does your dad know how extensive his CC and what the doctors plan is?
The statistics can seem very frightening but there are many variables to this cancer and what you will find here is lots of hope, positivity and credibility to the information. Be careful what you read on the internet – some of it is not the most accurate information. I found this site after 2 months of being on the internet for information. I wish I had found here first.April 19, 2013 at 7:18 pm #8246
My dad, 66, was diagnosed with this last week. He is going to Mayo in Rochester, MN. His WBC is high and the previous doctor in Minneapolis said the stent would close in 2 months and it is agressive.
Do they replace stents? I have read that he may only have 6 months to a year. How awful is the chemo? I am trying to plan a time to see him with my daughter, 6.
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