Re: New member,Any advice or positive support appreciated

My journey continues.   The latest pathology results from my second ERCP indicated adnocarcinoma tumor cells found.  Meeting with the surgeon Monday 4/22 for consultation and surgery now scheduled for April 29th.  Brigham & Womens received many patients from the Boston Marathon bombings so things have been topsy turvey with them and my surgery was pushed back as it should have been.
My heart goes out to all the families impacted by those terrible acts.
Will keep you posted as things progress.  A group of my grandchildren arrived to cheer me up yesterday with a bouquet of daffodils (16 one for each grandchild) and some homemade get well cards.  Mission accomplished!  Lucky guy I am!

Re: New member,Any advice or positive support appreciated

Alan, April 29th is a good day! Glad you got that scheduled. Grandkids are the best!
You are indeed lucky to have 16! I have 6, 5 boys and 1 Princess, the youngest still at home (other 3 from here in College). Thursday is date night, me and Brandon who is 16. When I was in the hospital for 2 weeks in February he came to see me of his own accord. I said, "Brandon, Grandma never wanted for you to see me like this" and he says,  "Oh thats ok Grandma, I just wanted to see your cute face." Then he would lay across the bed and say, "You are going to be fine, just fine". Alan, isn't that what life is all about!! Keep busy with those munchins and the time will fly and then the surgery will be all over with great reports.

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: New member,Any advice or positive support appreciated

Hi Friends,

Just wanted to give you an update. My dad had the whipple yesterday. After almost 8 hours, he was out and the good news was all went smoothly. No surprises!  They got clean margins on the first cut. Now we are in the recovery phase. They already had him up walking today. Crazy!  Just praying all continues to go just as well and no complications.  Thanks for all the amazing support and kind words! So appreciated! Best Chris

Re: New member,Any advice or positive support appreciated

Dear Chris a big YIPPEE for your Dad. My husband's also was 8 hours and I could not believe when they had him up the next day. No reason the recovery should not go well also. Have patience though as its a slower recovery than most others. Wishing him a comfortable and hassle free recovery! YEA ! Keep us posted on how he is doing.

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: New member,Any advice or positive support appreciated

This is great news Chris. I am so happy for you and your family. Best of luck with the recovery however am sure your father will do well!

Re: New member,Any advice or positive support appreciated

Great news, Chris. It is crazy how fast they want the patient up and moving. It is the best thing for them, though. I wish your dad all the best with his recovery.

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: New member,Any advice or positive support appreciated

That is great news about your dad Christine!! Thanks for sharing it with us all and I hope that his recovery goes just as smoothly with no complications at all. My fingers are crossed for that!

Best wishes to you and your dad,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: New member,Any advice or positive support appreciated

Chris,

So happy to hear that your dad had his surgery and is doing well.  Thank you for the update.  Tell him to take it one day at a time and stay on top of the pain meds.  Walking is key, as is staying hydrated.

Keep us updated!
-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.

34 (edited by marions Sun, 05 May 2013 21:14:03)

Re: New member,Any advice or positive support appreciated

Chris...wonderful news.  Seems that your Dad is right on schedule including the walking up and down the hall.  Remember that each day brings him closer to going home. 
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: New member,Any advice or positive support appreciated

Hello again friends,

Thanks again for all the kind words. So far so good on the surgery for my dad.  Tomorrow will be a week post op.  We hope him to be home by the end of the week. Just in time for his 70th birthday... God willing!  I still can't believe how things progressed so fast.  They have him up walking 4 times a day right after, amazing. There have been very few hiccups, so we are considering ourselves very lucky. He is being a trooper. So proud of him!  The big day was when he had a poop. smile I was just wondering if anyone had any advice on diet post op or any other helpful information once he is home.  Still taking it day by day.... Thanks so much! Chris

Re: New member,Any advice or positive support appreciated

Chris, good to hear Dad's update! The food is very curious. After Teddy's Whipple his tastes changed like crazy. His love was chocolate and he no longer wanted  sweets. Take  it easy at first starting with comfort foods. Nothing fried or spicy. Teddy liked homemade chicken soup, jello, buttered noodles, Oatmeal, eggs (like omelettes and toss in some cheese), and his body and wants will change again and he will let you know what he feels like. No caffeine. He had decaf tea hot and cold. You might also try some nutrition shakes daily or in place of a meal at times. Teddy loved Carnation Instant Bkfst the best. Actually Vanilla and I would blend in fruit usually banana and this is very nutritional. It ok to play it by ear. The worst that can happen is something is made and they change their minds and don't want it. Sounds like Dad has a good start and he is going to be fine. Congratulations to another Whippler.

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: New member,Any advice or positive support appreciated

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

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: New member,Any advice or positive support appreciated

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!!

Re: New member,Any advice or positive support appreciated

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! Chris

Re: New member,Any advice or positive support appreciated

Christine,
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.
Willow

Willow

Re: New member,Any advice or positive support appreciated

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

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: New member,Any advice or positive support appreciated

Hi Christine,

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.

Hugs,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: New member,Any advice or positive support appreciated

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!

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.

44 (edited by Christinepalm Sat, 29 Jun 2013 11:25:11)

Re: New member,Any advice or positive support appreciated

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 sad  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, Chris

Re: New member,Any advice or positive support appreciated

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 … 198#p57198

God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: New member,Any advice or positive support appreciated

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 hes

Re: New member,Any advice or positive support appreciated

Thanks for the information! Truly appreciate any and all!

Re: New member,Any advice or positive support appreciated

Hi All,
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! Chris

Re: New member,Any advice or positive support appreciated

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.

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: New member,Any advice or positive support appreciated

Chris....our Eli answered a post similar to yours today.  You may want to take a look:
http://www.cholangiocarcinoma.org/punbb … p?id=10322
You are right in that things just continue to drag on, but there is a light at the end of the tunnel. 
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