1 (edited by AppreciateHelp Tue, 16 Aug 2011 12:22:36)

Topic: Local Recurrence Post Whipple Surgery 14 months...

What is the options when cholangiocarcinoma reoccurs in the "surgical bed" area POST Whipple surgery 14 months ago, and after having had 5 months of chemo including GEMZAR and some 5FU; and 25 radiation treatments?  PET scan has three "HOT" areas NOT located in an organ but the "surgical bed area."  We were told surgery is difficult; that radiation (25 txs done before) is maxed out, so what chemo treatment plan are we now looking to have?

Re: Local Recurrence Post Whipple Surgery 14 months...

Hello appreciate and welcome to our site.  I am sorry to hear of the recurrence something not uncommen and reported frequently on our site.  The radiated area may present to be a problem in regards to further surgery and my best advice is to search out another, professional, opinion with a physician treating a high volume of patients.  Please, tell us more.  Our fantastic members will help you along.
All my best wishes,
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: Local Recurrence Post Whipple Surgery 14 months...

Thanks for your reply.  I am new at ALL this posting-never done before.  My husband and I just received the news of his cancer re-occurence today.  We have a 2nd opinion set up today with another local facilities' onocologist.  And actually, we don't discuss treatment options with his CURRENT onocologist until THURSDAY.  I'll post results for each and if anyone can provide information with regards to what we are now facing, send it out way.

Re: Local Recurrence Post Whipple Surgery 14 months...

Hi,
I am a patient of cc for 2years.
Some times hot spots may mean just inflammation of the area of concern,
Can you get a MRI with contrast to confirm it or get a 2nd opinion of radiology consultation from another institution to confirm the findings?
Depend on what kind of CC,intrahepatic Cc or ductal cc (ie: Hilar); treatment plans  and choices will be different. My guess is that your husband has ductal CC,so besides chemo therapy,PDT or clinical trials will be other choices.
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: Local Recurrence Post Whipple Surgery 14 months...

Hi AppreciateHelp, welcome to our wonderful family but sorry you had to join us. My husband had a Whipple and 3 years later the CC returned to where his duodenum used to be. He never had follow up chemo or anything after surgery as 5 doctors told him it would not help. When the new CC showed up where he had his surgery already, we did have Cyber Knife done and it served well for another 2 years. For Cyber Knife the CC must be under 7 cm and not spread.
I am very glad you have another opinion set up and please let us know what they say. Where is you husband being treated? Stay strong and keep us posted, we care.

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: Local Recurrence Post Whipple Surgery 14 months...

Hi Appreciate,

Welcome to the site. Sorry that you had to find us all and I'm sorry also to hear of your husbands recurrence. As Marion has said to you, recurrence is not uncommon here and I am glad to hear that you have got a second opinion lined up for your husband. I hope that you will get some good news from this visit.

I am glad that you have joined in with us here as you will get a load of support and help from all of us, and please feel free to ask any questions that you have and we will all do what we can to help in answering the. And please let us know how your husband gets on with his second opinion appointment.

My best wishes to you both,

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.

7 (edited by AppreciateHelp Fri, 02 Sep 2011 20:29:28)

Re: Local Recurrence Post Whipple Surgery 14 months...

Can anyone tell me if they have used "Probiotics" DURING chemotherapy to assist with side affects?

HISTORY:  During 2010-January 19, 2011 my husband completed his first 5 months of chemo treatment following Whipple surgery.  During this chemo time, he had stomach spasms/cramping/gurgling and trapped gas feelings which could be quite severe.  These symptoms were NOT relieved by using any over-the-counter meds.  A prescribed med called Hyoscamine 0.125 worked initially but then it's effectiveness faded out.  On our own, when the symptoms persisted after COMPLETION of 5 months chemo, we tried DIGESTIVE ENZYMES and they helped.

NOW, because my husband's cancer has recurred and he is once again receiving chemo for perhaps 6 months duration (GEMZAR and CISPLATIN), the above stomach symptoms have returned.  We had his annual VA appointment today,  and discussed using PROBIOTICS instead of digestive enzymes, and were advised to purchase a probiotic with 10 strains.  So I did:  "Ultimate Flora, 30 billion active culters with 10 probiotic strains." I gave him one today and he has had none of the stomach symptoms so far!  He's done great.  I just hope it continues...

But then I started thinking...
-Can a PROBIOTIC interfere when taken ALONG WITH CHEMO, and,
-If his WBC is at 2.1 now are there any reasons not to use PROBIOTICS???
I'll call his onocologist's office on Monday, but I really welcome any imput from this website! THANKS!

Re: Local Recurrence Post Whipple Surgery 14 months...

My husband never took probiotics and strangely I can't as they really upset me. I can't recall any discussion here about using them but I would certainly ask the Doctor first. Also go to our Search Engine at the top of the page and type in probiotics and see if any posts come up on the subject. After Teddy's Whipple the doctor told him he would be on a digestive med forever and he was on a prescription for Prilosic. Digestive Enzymes are excellent after a Whipple as they help the Pancreas do it's job. The digestib e system is never the same after a Whipple but it can be helped. If the pain persists I would call the ONC.
Best of luck and 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: Local Recurrence Post Whipple Surgery 14 months...

Appreciate....only the oncologyst will be able to answer the question regarding the probiotics, but the results for your husband are quite terrific. 
Please, keep us posted.
Best wishes,
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