Topic: Cholangio friends, hear me….

Hello to everyone,

I would like to introduce myself and reach out to you for advice.  KrisV, I have been reading some of your posts + many others and find a marvellous network of support among you.  This is our case: my husband was diagnosed with un-resectable CC (Nov 2012) a devastating news.

He has undergone almost a year of Gem-Sis. Tolerated quite well, his condition was considered "stable" till CT in December 2013 showed tumor/s growing. Changed to Zeloda (Capecitabine) 1500mg x 2 daily x 2 weeks with one wk of rest.  Very hard on his body, fatigue, nausea, lack of appetite. Since he started, he has developed infections for which he had to be hospitalized and was given different types of antibiotics for what it was thought to be "bacterial" infections.

Left hospital two weeks ago and started another cycle of Zeloda (while he was still taking oral antibiotics). Now the same pattern is developing: cold feet, chills, uncontrollable shaking, fever (38-39 C).  We are suspecting these symptoms may be related to the high dosage of Zeloda rather than to bacterial infection.

My question is:  has anyone experienced this type of reaction to Zeloda, what is the dosis you have been taking? What is your advice?

I am feeling discouraged and tired.  Thank you for any comments you can provide.
RoseT

Re: Cholangio friends, hear me….

Rose....welcome to our site.  I am so sorry to hear of your circumstances.  I am wondering whether the symptoms you are describing (shaking, etc.) are related to the Xeloda?  From what we have seen on this site and from what I have experienced personally, it may be related to disease progression.  But,  only the physician will be able to make that determination, hence I would get in touch and explain the situation. Have the CA 19-9 been watched and is there a rise in numbers?  Assuming that the last CT was done in Dec., another scan may be ordered for clarification.
I am so glad that you have found us and wish for others to share their thoughts with you as well.  Please, stay in touch - we care.
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: Cholangio friends, hear me….

Hi Marion,

Thanks for your quick response.  Yes, another CT scan was done yesterday and we are meeting with ONC on Monday and will discuss with these issues.  I am not familiar with the CA 19-9?
Tnx
Rose

Re: Cholangio friends, hear me….

Hi Rose,

Fatigue, nausea and anorexia are listed as common side effects of capecitabine (Xeloda), but infections don't seem to be commonly reported.

Table 4 of this paper reports the incidence of various side effects. 

http://www.ncbi.nlm.nih.gov/pmc/article … po=42.5000

My understanding is a 20%-25% dose reduction of xeloda can reduce symptoms.  Your oncologist will know best about that though.

Hopefully you can figure out what is going on,

Jason

5 (edited by marions Wed, 26 Feb 2014 22:27:14)

Re: Cholangio friends, hear me….

The CA 19-9  is a simple blood test that measures the level of antigens.  On it's own this test is not given much credence however; physicians like to take it in account with CT results and patient's symptoms. Good luck, Rose.  Please keep us posted.
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: Cholangio friends, hear me….

Dear Rose welcome to our extraordinary family and I am sorry to hear about your husband. My husband never had chemo but, he used to get "blood infections" and the symptoms were like what you described. High fevers and chills that could not be stopped. Honestly, I would put 3 blankets on him and I would lay on top and it didn't help. When I would see these symptoms start I would call the ambulance (he would get to weak) to take him right to ER. He  spent a few days in the hospital with an IV of Levequin. His ONC said this type of infection needed a blood culture that would take a few days but in the meantime they did start the Levequin and it would work every time. Once, he said Levequin  would kill any infection. What I am thinking is your husband may be getting these infections. Just another twist on things before you see the ONC. Give yourself some rest, this is a long Journey. 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: Cholangio friends, hear me….

Does he have biliary drains?  Mine are an apparent constant source of infection. Since October, I've had 4 tube changes, always preceded by fever spikes and sometimes nausea. I've had a few of those 'your teeth are chattering because you are so cold even though you are under tons of blankets' moments.  Once, my husband was running the hair dryer up and frown my body while I was under the covers. It's a wonder he didn't catch it on fire it got so overheated.

Bottom line, while I can't speak to the med you specifically asked about, there could be other reasons for constant infections. Has your oncologist considered working with an infectious disease guy?  I now have a multi-disciplinary team, which includes an infectious disease guy, plus a nephrologist because I got so dehydrated I sent my kidneys into a tailspin.

Sorry to say, it's a constant battle with these nagging 'smaller' issues that takes such time and energy.

Wishing you both success in getting to root of issue.

Lisa

Impatient patient.

Re: Cholangio friends, hear me….

Marion, Jason and Lainy,

Thanks so much for your feedback.  Everything helps to understand better how to manage this desease.

Jason - thanks for the link, I will read it.  When we meet with ONC on Monday, we are leaning towards discussing a dose-reduction and see how it goes from there.

Marion - major markers to monitor my husband's condition normally are: billirubin, platelates, neutrophils, WBC, HGB and so on.  Perhaps they are doing this test, but we have not discussed it its level.  If not done, I will ask.

Lainy - your husband's "blood infections" follow the same pattern as mine's.  Three times I rushed him to ER; urine & blood test (culture) were done + chest x-rays, ultra and CT scans.  1st time he was even put in isolation due to possible contamination......you know, Lainy, it is all so distressing! Everytime, they start him on Piptazo (Amoxicillin/ clavulanic intravenus and/or + piperacillin/tazobactan), last time they added Banco just to rule out a possible infection which was not detected the previous times; three days after he is fine and he is discharged. Everytime is works exactly the same.  Everytime the discharge note reads differently.  1st time pneumonia; 2nd time cholangitis, 3rd time (don't remember).  Nothing was found in blood cultures.  For this reason we are leaning towards the comment Jason made - dosis of Zeloda may be too strong.......I hope it is this.

Thank you all.  It is indeed great to be able to get ideas about other cases and also been able to talk about our concerns.

I am also praying for all of you.  Un Abrazo.  Rose

Re: Cholangio friends, hear me….

Hi Lisa,

Thanks for the info.  Yes, he has a "metal stent".  First time,  it was thought stent was blocked and infection was due to that; after subsequent CT ONC said stent is not blocked.  Original stent which was placed did not work and he has had this one since December 2012.  Lisa, these smaller issues are day in and day out which requires attention and YES they drain you.  It pains me terribly when he goes into the "uncontrolable shakes", his entire body is shaking, I hold him tight but nothing helps....and then of course the fever spikes and we rush to ER.   

I am pushing water/juices comsumption to max. 

Good point: infectious disease expert, we will mention to ONC.

Thanks so much. Un abrazo.  Rose

Re: Cholangio friends, hear me….

Rose, 

Can't add much to what has already been said, but want to welcome you to the site and hope to hear that things are improving for you husband soon.

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: Cholangio friends, hear me….

Welcome to the site and so sorry you had a reason to come here.  I am not sure I can add to what others have said, but wanted to welcome you and say hello.

-Randi

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: Cholangio friends, hear me….

Rose, I'm sorry you had to find this site, but you won't find a more helpful, compassionate group of people!
I was on Xeloda, and do not recall the bad symptoms being symptoms of the drug. Tiredness, possible nausea, red and sore hands and feet, dizziness, and a few other side effects.....
I will say, however, that since having the pump and port placed in my body, I had 3 blood infections in the first 6 months or so. The symptoms were what you described. I was admitted to the hospital 2x with blood infections, and was given Levaquin. My fevers were between 101-104 and the chills were unbelievable!
I wonder if the metal is causing his body to have infections?
This is definitely a concern to bring to his onc's attention. Maybe lowering the Xeloda will help... Possibly they are signs of another problem.
I hope you get good, clear answers on Monday. And that the medical team has a plan in place to combat these issues.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Cholangio friends, hear me….

Hi i also am from  ontario and just wondering if you had a appointment at princess margaret. My father had srbt radiation after his klatskins tumor returned 1 year later.
marco

Re: Cholangio friends, hear me….

Rose -
Welcome to the best little family ever. As you have already seen we have all gone down this road together.
To me the symptoms sound more like infection rather than a side effect of the medication....although sometimes when a person's white count gets too low you can get neutropenic fevers which is just simply related to the white count being too low. I would really worry about infection in the blood even though he is on antibiotics.....sometimes they can be treating the wrong bug. We had that once with all of my husband's hospitalizations for infection. I would doubly worry about it with stents in since that does seem to be a source of infection.....we haven't dealt with that one yet but who knows.
I would ask lots of questions of the oncologist and maybe you can even get an infectious disease doctor involved....that's what we had to do and it helped a lot to have someone who only dealt with infections on board.
Good luck and keep us posted.

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.