Husband’s journey
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Darla……these shakes or rigors are difficult to watch and similar to Lainy, I would wrap up my husband with blankets and literally hold him until everything calmed. You did everything right, dear Darla.
You might also want to have the stent card on hand.
http://cholangiocarcinoma.org/biliary-emergency-information-card/
This card is very important and beneficial to not only you, but the treating physician as well. In emergency situations such as the one described, the ER personnel immediately is made aware of the situation.
Hugs,
MarionDear Darla+D, It sounds to me like his bile duct was clogged which causes these horrible blood infections that Teddy used to get. I would put 3 blankets on him and climb on top and his temp would rise to about 103. He could not even standup and I would call an ambulance for ER. An IV of Levequen used to knock it out quickly. I am so glad you have an appt at UCI and will be looking forward to what they say as I am not so sure your DOC/ONC have had much experience with this nasty CC. Hoping for the best!
Very very bad day today. Was able to make an appt. with Doc at UCI, is actually scheduled for June 9th.Husband was not feeling well last night , a little nauseous but no vomiting. This morning I had to go and get my car serviced for the trip was worried about him so I called to check on him. He was very nauseated, and had thrown up bile , but told me don’t worry” I feel better.” When I got home finally an hour later he was in bed, shivering , shaking uncontrollably had the chills and he felt like he had a fever, I knew this was serious, as this is what happened to him in March while in the hospital. I called 911. Diagnosed again with chronic pancreatitis. Did a ultra sound , looks good Also did a cholangiography to check external drain to see if there was any blockage. Radiologist said it looked ok, but changed stent and it immediately started draining bile . His alkaline phosphatase was 1066. The highest it has ever been.
Yea! Good work you are an A Team! There is always something to try until a GOOD ONC says no more options! Your husband is commander of his own Army and it shows he is not ready to retreat!
Happy Memorial Day. God Bless those who have fought and are still fighting and to those whose lives were lost for our freedom. New hope for husband today. After weeks of feeling bad and the sinking feeling he got Friday from oncologist, telling him I can do nothing for you.. You need chemo . He found his inner strength and called UCI Dr himself to make an appt. Hope to hear tomorrow when.
Coming into this a little late but I really would push HARD to get a second or even third opinion…even if you have to travel some. Even when we were so new to this we didn’t know what questions to ask, both our surgeon and our oncologist encouraged second opinions. We decided not to take the time to seek those out because time was of the essence and we both felt VERY comfortable with who we had seen. Go with your gut, if it doesn’t feel right then move on or at least look for more answers. I would be very leery of a doc that diagnosed stage IV cancer just based on labs since there are other things that can make the numbers rise….or combo of things. Just my thoughts.
KrisV
Good, Darla, I feel a tad better. I just wrote on Julie’s post that NO Doctor who is working with cc patients would EVER tell them not to get another opinion. Even the ONCS at big centers who do treat a lot of CC patients understand. This DOC sounds like a big egotist. Like how many patients can he be treating in Las Vegas!!!!!!!!!! I am so happy and also he is not telling you much of anything, there still may be options and like you say if not at least you will have no regrets. You go girl, good job.
Just my opinion, but this does not sound like a doctor I would have much confidence in. Hope things work out. Let us know how things are going.
Darla
Thank you Lainy and Darla . I did make a few calls and also got online and sent info request for an appointment. Hope to know something by Monday. These two oncologists work at the same cancer center but different locations. Hope this is not going to be a problem.Our current oncologist said today after my husband asked if he could admit him to the hospital he has privlages to and he said NO……. He does not do that , Then said you have cancer you need chemo. I almost fell out of my chair !!! Also asked him if he was communicating with Drs. in Cali he said no don’t need too. I know with a second opinion we may get the same or worse news but for peace of mind it is needed.
Darla+D, sorry to hear this but again I must say I feel a 2nd opinion is in order ASAP. We never like it when the ONC gives us a feeling he is not trying anymore! We have had members in stage IV who have done well. NO ONCs have to take in to consideration many other things besides tumor markers. Scans, and etc. I am really sorry but cannot stress enough to see another ONC.
Hi Darla,
Welcome from another Darla.
Glad you have found us, but sorry you had to. It sounds like your husband has really had a lot to deal with. I agree with the others that a second and maybe third opinion is needed. Hope you can get some answers soon. Take care.Hugs,
DarlaWent to see oncologist today.Cancer markers up again from 221 on May 7th to 374. Husband weighed 143 today . Lost 8 pds since last hospital visit. Today Dr. said he has stage 4 cancer .. first we heard this in 6 months. Just said needs chemo now. IS it normal for docs just to go my cancer markers. Am I just in denial so sad today.
Darla,
I am so sorry to read all that your husband has been through. I agree with Lainy that a second opinion is in order. Have they done a PET or Ct scan recently to see where a recurrence could be? I will be praying for your family.
Please call me if you want to talk 330-903-6868
Peace
LisaDarla+D and thank you Clare as you reminded me that Teddy also had an E-Coli infection after his Whipple. Very tough but I would still feel better with another opinion in Las Vegas. Teddy also used to get blood infections like 2 X a year and the ONC knocked them out with an IV of Levaguin. Its a hunt and peck ordeal but I am more comfortable with an aggressive Doctor.
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