Bile Duct Cancer

FamilyforJohnC

Bile Duct Cancer

Hi All.

So about 4 weeks ago my father was taken to the hospital for having an elevated heart rate.  The ER team struggled to lower and stabilize the heart rate.  He is a relatively healthy 68 yr. old despite being an asthmatic and having Crohn's Disease.  After they had his heart stabilized, they diagnosed him as having an irregular heartbeat.  His magnesium and potassium levels were quite off which the team struggled to stabilize.  The doctors tested & explored only to reveal he had some cysts in his kidneys along with lesions on his liver.  The lesions were malignant but no source of the primary was located.  Long story short he will begin Cisplatin & Gemcitabine this Friday morning.  He just had a pet scan completed and we are waiting for the results.  Looking to be Bile Duct or Gallbladder - advanced stage 4.  I find strength and hope by reading some other survivors stories and hope I can continue to update this with good news moving forward.  Being his 37 yr. old son and not the patient, I cannot fully understand what he is going through but I know this is the most scared I have ever been in my life (and not much scares me).  All of his loved ones are searching for hope, strength, and positivity anywhere or anyway we can.  I wish you all the best of luck and admire and respect the courage and strength you survivors and family members of survivors have.  Please don’t ever stop fighting because these forums and sites give the strength and ammunition we need to keep fighting. 

Thank you!!

AApan12

jquirk4444 said:

Lipitor

Don't know if there is any connection but my wife was on Lipitor for high cholesterol for about 10 years and was diagnosed with bile duct cancer in March of 2015. She went to Dartmouth-Hitchcock  (Hanover NH) in May of 2015 for resection. Upon exploration they found that resection was not possible, which I have since learned is almost always the case. We went for a 2nd opinion with a surgeographic at Dana-Farber (Boston). He concurred that resection was not possible. We have heard that resection is the only proven cure. She started chemotherapy at Dana-Farber (Londonderry NH) in June of 2015. The chemo is a gemcitabine/cisplatin combination. She is still on this treatment. There has been no considerable improvement in her condition. She has developed neuropathy, supposedly due to the cisplatin, and is losing feeling in her extremities  (particularly her feet) which makes her very unstable. I do not see where this regimen is going to provide any long term benefits. Has anyone had a similar experience with this drug Combo? Also, are there alternative treatments which anyone has heard of?

My mother was also on Lipitor

My mother was also on Lipitor for quite awhile before being diagnosed with Bile Duct Cancer. Could be a coincidence though, not sure. She had her tumor removed and was given Cisplatin as a chemo treatment which also gave her the neuropathy. However, she did not experience it as bad due to her not wanting to continue with the chemo because of all the symptoms. She did the least amount of treatments she was allowed but it did nothing. The cancer returned. I remember her doctor stressing that if she experienced any of the symptoms of neuropathy as bad as you are describing that she tell him right away. He never said what would be done though!

djohnson56

FamilyforJohnC said:

Bile Duct Cancer

Hi All.

So about 4 weeks ago my father was taken to the hospital for having an elevated heart rate.  The ER team struggled to lower and stabilize the heart rate.  He is a relatively healthy 68 yr. old despite being an asthmatic and having Crohn's Disease.  After they had his heart stabilized, they diagnosed him as having an irregular heartbeat.  His magnesium and potassium levels were quite off which the team struggled to stabilize.  The doctors tested & explored only to reveal he had some cysts in his kidneys along with lesions on his liver.  The lesions were malignant but no source of the primary was located.  Long story short he will begin Cisplatin & Gemcitabine this Friday morning.  He just had a pet scan completed and we are waiting for the results.  Looking to be Bile Duct or Gallbladder - advanced stage 4.  I find strength and hope by reading some other survivors stories and hope I can continue to update this with good news moving forward.  Being his 37 yr. old son and not the patient, I cannot fully understand what he is going through but I know this is the most scared I have ever been in my life (and not much scares me).  All of his loved ones are searching for hope, strength, and positivity anywhere or anyway we can.  I wish you all the best of luck and admire and respect the courage and strength you survivors and family members of survivors have.  Please don’t ever stop fighting because these forums and sites give the strength and ammunition we need to keep fighting. 

Thank you!!

FamilyforJohnC

How is your Dad coming along? 

Kiwi79

Hi.

Hi there. FamilyforJohnC, your story sounds similar to mine. I'm 38, my Dad is 69, relatively fit and healthy. He went in for a blood test thinking his increase in blood pressure medication was causing side effects and his crazy elevated liver levels meant further testing.  A couple of weeks later and he is having stents put in tomorrow, and starts chemo on Monday.

On the upside, the cancer doesn't seem to have gone past the bile duct and liver. On the downside, the mass on his liver is too big to remove and hence we need chemo to shrink it before he can get it removed.

I'd love to hear if chemo has worked for many folk on here- the stats don't read too well on that front.

Also not loving the New Zealand doctor who believes if the chemo doesn't shrink it, then there's no other option. I've been reading up on new treatments- from liver transplant to light therapy to radiation options to new ways of giving chemo that work alongside embolization. 

 

Any information would be greatly appreciated. Thanks in advance from a distraught daughter.