Topic: Husband's journey

Hello I wanted to say hi to everyone and ask for your help. My husband Donald was diagnosed with cc in 2011 . He qualified for the whipple and all cancer was removed, none found in lymp nodes or surrounding areas. He received 6 months of chemo after surgery.And was doing quite well. In September of 2013 he started having severe digestion problems right after eating he would pass gas so smelly it would linger for hours. In November he was hospitalized for acute pancreatitis.Hospital stay was 4 days. No Drs here in Nevada wanted to proceed doing further testing including his oncologist since he had the whipple, and was instructed to go back to the surgeon in Cali. We  finally were given an appt. in March. In the meantime his bilirubin levels are very high, and cancer markers steadily rising. Had a stent placed in common bile duct. Since then he has been very ill. Was hospitalized in March for 2 weeks with cholangitis, peptic ulcer, pseudocyst of pancreas and sepis. Was unable to eat due to all infections. He did well for 6 weeks . Was hospitalized just 4 days ago with symptoms of pancreatitis. Also his stay in hospital was due to abnormal liver enzymes , colitis and superior mesenteric vein thrombosis. Also pre-existing biliary drain was removed and a new 10 French internal/external biliary drainage catheter was placed.   Help anyone else have these problems with CC. Thank- you  .

Re: Husband's journey

Welcome, Darla+D to the best place you can be for CC support. WOW! Your husband has really been through the mill and back! The first and biggest thought that comes to my mind is that he needs to get another opinion and a different hospital. I absolutely cannot believe the Doctors there and my Sister lives in Summerlen always telling me how good her Docs are. Mmmmmm
Where is he being treated in Calif? All of that sounds like a myriad of infections. My husband had an internal/external drain...worked quite well. What are they doing for him now, like in antibiotics etc? As if the CC is not enough. Sending you the best and good vibes that they clear up this stuff once and for all. You are not alone, we are all here for you!

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: Husband's journey

Hi Darla,

Welcome to the board although I am sorry your husband is having such a difficult time.  My sister had several complications during her treatment, sepsis being one of them.  She was very, very sick with septic shock but once that was initially treated she improved.  The sepsis was caused by an abscess on her liver and ecoli infection in her blood.  She was blasted with antibiotics and hospitalised for a month before she was discharged.  They also inserted an external drain to drain the abscess.  Prior to her surgery and for a short while after she had an external bile drain.  It did take switching the antibiotics a few times before they got the right combination for her.  She also had a fungal infection in her blood which threw the doctors but once they picked up on it and got anti-fungal medication it also helped. 

I would insist on further testing.  Things change within a person and sometimes not in a predictable or expected way.  A fresh pair of eyes can also shed new light.

Clare

In the stars now . . . .

Re: Husband's journey

Thank you Lainy for replying. He had his surgery at UCI medical center in California. That is where the plastic stent was placed in bile duct . The  GI doctor there did a number of biopsies and all came back negative , but believes there is a recurrance.  Where no one knows. His cancer markers are going up and down. His oncologist started him on chemo on May 7th. because of rising cancer markers.Was again sent home with Flagyl and Levofloxacin. He is so weak and cannot eat more than a few bites. He is scheduled for another chemo treatment on May 21. I know this is a horrible cancer, but I have a hard time believing that all  that is going on is all because of recurrence.  Cancer markers were 221 on May 7th. Out of hospital on April 5th they were 160 then 190 then  221.

Re: Husband's journey

Husband is being treated here in Las Vegas. First hospitalization was before his first chemo. treatment.

Re: Husband's journey

Darla+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.

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: Husband's journey

Darla+d....are the local physicians in touch with the team at UCI?
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: Husband's journey

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
Lisa

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: Husband's journey

Went 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.

Re: Husband's journey

Hi Darla,

Welcome from another Darla.  smile  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,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Husband's journey

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.

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: Husband's journey

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.

Re: Husband's journey

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

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Husband's journey

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.

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: Husband's journey

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

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: Husband's journey

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.

Re: Husband's journey

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!

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: Husband's journey

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.:(

Re: Husband's journey

Dear 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!

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: Husband's journey

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-e … tion-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,
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