July 17, 2013 at 6:23 am #70691gavinModerator
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.
GavinJuly 17, 2013 at 3:50 am #70690
Chris….our Eli answered a post similar to yours today. You may want to take a look:
You are right in that things just continue to drag on, but there is a light at the end of the tunnel.
MarionJuly 17, 2013 at 12:32 am #70689lainySpectator
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.July 16, 2013 at 11:08 pm #70688
We got the protocol from my Dad’s oncologist.
Gemcitabine for 12 weeks, 3 weeks on 1 off and then 28 days radiation.
Does that sound about right?
They also told him it would only increase his rate from a 50/50% chance by 10-15%, so giving him a 65% r.
The Cancer roller coaster continues and it sucks!
Thanks so much! ChrisJuly 6, 2013 at 2:21 am #70687
Thanks for the information! Truly appreciate any and all!June 30, 2013 at 11:11 pm #70686cristerrySpectator
Hi, Chris. My husband was diagnosed last July. He is being treated at roger williams medical and cancer center in Providence. We have a lot of faith in his cc team.
Dr. Katz. Oncology surgeon
Dr. Vincent Armenio chemo oncologist
Dr. Assanah oncology interventional radiologist
Dr. Stainkin (sp). Radio embolization.
Hope this hesJune 29, 2013 at 8:39 pm #70685pcl1029Member
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.
God bless.June 29, 2013 at 4:17 pm #70684
Hi all..sorry so long to write! It’s been quite the road for my dad but he is hanging in there. My dad ended up having a leak at one of the reconnection sites but just yesterday got his drain out after 7 weeks in. Now just hoping for no infection again. He is getting stronger every day! With the drain now out, he is going to get a bit stronger and ready for the next phase. Chemo!
I was just wondering if any of you chemo experts had any opinions or thoughts about certain protocols. He has yet to sit down and meet with the oncologist but any info, thoughts, input is greatly appreciated. Again, really appreciate all your excellent information, well wishes, thoughts etc. Cancer just sucks! Also, Just one other question…can anyone in RI or MA recommend a great oncologist who specializes in CC. Just gathering some opinions…..Thanks so much!
Thanks, ChrisMay 15, 2013 at 2:23 pm #70683lainySpectator
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!May 15, 2013 at 1:23 pm #70682gavinModerator
Sorry to hear about your dads infection. I hope that his medical team get this sorted asap so that your dad can motor past this bump in the road. I know that both you and he are bummed about this right now, but stay strong and positive and he will be over this bump very soon! Please let us know how things go for your dad.
GavinMay 15, 2013 at 4:18 am #70681
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.
MarionMay 15, 2013 at 4:15 am #70680willowSpectator
Sorry to hear of your Dads complication. Yes it is difficult to keep morale up with such a serious condition. From what Ive gathered on this blog, abscesses after abdominal surgical procedures are fairly common though they are definitely serious. Sounds like your Dad is being agressively treated and hopefully this can certainly be viewed as a “bump in the road” (though thats easier when looking at that bump in the rear view mirror! Please pass on a hug to your dear Dad.
WillowMay 15, 2013 at 4:01 am #70679
Hi, Unfortunately my dad has had a complication. He is back in the hospital with an infection. Abdominal absess! He is currently on triple antibiotics and they put the drain back in. He is really bummed about this. I am trying to say it’s a bump in the road which I hope it is…. but morale is low, so any positive input appreciated. Thanks os much! ChrisMay 12, 2013 at 1:49 pm #70678bonnie5Spectator
I was not a candidate for the Whipple procedure but here very good results from those that have had it. As for diagnosis the best most thorough but expensive test is a PET scan. It is a highly radioactive procedure Cat-scan but can see a lot more and can tell Dr.’s exactly where the cancer is. It is not invasive, no pain and gets you good information!!May 6, 2013 at 3:31 am #70677
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,
- The forum ‘Introductions!’ is closed to new topics and replies.