New member,Any advice or positive support appreciated

Hi Christine,

Yes you are so right about the rollercoster and how it sucks, big time! My dad was offered PDT or chemo as his treatments and he chose PDT over the chemo as that would give him a better quality of life and that is what he wanted. I know that this is a tough decision to make and everyone will have different reasons for the decisions that they make. I always said to my dad that I would support him 100% in whatever decisions that he made and also told him that he should do whatever it was that he wanted to do for himself. Stay strong.

Hugs,

Gavin

Dear Chris I really can’t say much about Chemo as 5 Docs said no for Teddy but then that was 8 years ago. He survived 5 1/2 years without it however, CC did return 2 X in the same place. He then had radiation then Cyber Knife. This is probably one of the biggest questions there is, to chemo or not. As we approached the last 6 months the ONC offered Palliative chemo and Teddy asked him how much time it would buy him beyond the guesstimate he gave of 6 months and the ONC said about a month. Teddy then decided no more. I personally think that a 2nd opinion may help those making this big decision. I do think your Dad’s ONC laid it out fair and square by telling him that his protocol would only increase his chance 15%. It’s a real tough decision but one your Dad needs to make and the family must support his decision. BTW Teddy took 3 days to decide. Hope Dad is coming along nicely from the surgery. Please keep us posted.

Hi,
Normally Chemotherapy will be started 6-8weeks after surgery.

Adjuvant chemotherapy after surgery is relatively ineffective but most of the oncologist will get you father a 6 month treatment if he can tolerate it.
It seems FOLOX(5FU+oxaliplatin) is a reasonable choice the same apply to CAPOX (capecitabine+Oxaliplatin); By some unknown reason 5FU or capecitabine works better for extrahepatic CCA than intrahepatic CCA.
If your father’s kidney function is normal.( serum creatinine 1-1.4) or CRCL>50,then the standard GEM/CIS regimen will be ok too.
But at this time, I believe either FOLOX or GEMOX(gencitabine+oxaliplatin)will be fine since most of us at old age will have some kind of kidney problems.
Remember please, I am only a patient like your father and not a doctor.
Listening to your choices offered by the oncologist,asking questions about the above regimens and make a choice( after a day or two thinking about it).
Attach below is the link about most of the chemotherapy used for CCA,their side effects etc.

http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=57198#p57198

God bless.

Dear Christine, unfortunately these infections can go with the territory. Teddy also had one. They are annoying and after one has already gone through so much it is yet another trial and can take a little time to heal. PLEASE STAY POSITIVE and remember Patience is the word for the day! Let us know how Dad is progressing and Be Strong!

Christine….so sorry to hear that. These abdominal surgeries have a tendency to surprise the biggest and the strongest so, definitely, this is a bump in the road. Your Dad has been through so much already – before he knows it – this too will have passed. Sending tons of good wishes his way.
Hugs,
Marion

Chris….many mile stones happen post surgery – poop included. With the newly plumbed intestinal track, your Dad may have to ease into certain foods and possibly avoid others.
Things we watched for:
regular bowel movements –
Creon (pancrelipase)or other brand of enzyme to help aid in breaking down fats, proteins and carbohydrates. (Whipple procedures (pancreaticoduodenectomy) have a tendency to cause enzyme deficiecy)
diet high in protein
watch out for the fats – it can go right through him
flatulence – one of the most common side effect post surgery and beyond
small walks – increase duration with time
The healing process varies from person to person however; each day is better than the last one.
Those were the major things; others may have much more to add.
Wishing for continued success,
Hugs,
Marion