Topic: Elevated CA 19-9 in setting of PSC

I just spend the last 4 days at Mayo/Rochester after a local bloodwork showing CA 19-9 of 5632.   Tests at Mayo included MRCP, abdominal ultrasound, Endoscopic Ultrasound, and ERCP.  All results are in except for the FISH staining from ERCP.  They have not been able to establish the diagnosis yet but strongly believe it is present.  I was sent home for the weekend and will be getting called back by Dr. Gores next week to discuss course of action.

There is some blockage of cystic duct as it did not fill on the ERCP, but nothing showed up here that was significant on MRCP, US, or EUS.  This is where they think the cancer is.  I haven't been able to find any information on how to treat CCA in the cystic duct and in the setting of PSC.  Any suggestions or recommended reading out there?

Both Dr. Lindor and Dr. Gores at Mayo believe that this is an early cancer, but aren't sure how to proceed.  Dr. Gores has mentioned both Whipple and Transplant protocol - but has not decided on the course of action yet.  I think he is waiting on pathology from FISH/ERCP.  I'm terrified of this - I have a 2 year old daughter and a wife that is 7 months pregnant.  I can't bear the thought of dying on them!

If anyone has experience with cystic duct CCA and treatment options, I would appreciate your feedback.  I wish you all a great deal of strength to battle this horrible, horrible cancer.

Rick

Ulcerative Colitis 1990, Stage 0 colon cancer and subsequent colectomy with J-pouch in 7/2005, PSC 7/2005, Klatsin CCA 8/2009

Re: Elevated CA 19-9 in setting of PSC

Welcome, Rick, to the best little club in the world that no one wishes to join. You are at one of the best hospitals with the best doctors. Not sure about the Cystic Duct.  My husbands was in the bile duct valve and he had a Whipple 4 years ago this month. He is now 77 and doing very well. It is always so scary when the diagnosis is first given. After all who has ever heard of this? Please try to read up on this as much as you can as to be fore warned is to be  for armed. We have a search engine at the top of the page.Honestly, soon the fright will turn to fight and then you become your own best advocate. Everybody is different with this monster so no one really knows for sure that they may only have months to live. Don't think that. Instead try to program your mind to have HOPE  and your spirit to have ATTITUDE. Please let us know what the doctors say and feel free to visit here often to ask, vent or advise.

THANK YOU FOR LOVING ME! Teddy ~In our hearts forever~ATTITUDE is EVERYTHING

Re: Elevated CA 19-9 in setting of PSC

Rick,

Welcome to the site.  I don't have the answers for you, but you have come to the right place and I am sure someone will be here soon that can give you some good advice.  I am so sorry that you have a need to be here, but this is the best place to be for advice & support concerning this awful, relatively rare type of cancer. There are a lot of wonderful people here all willing to help when & where they can.

Please let us know how things are going for you.  I can only suggest being cautiously optimistic. As one of the great people on here always says,  "attitude is everything".  You have so much to live for.

I will be hoping for the best for you & your family.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Elevated CA 19-9 in setting of PSC

Hello Rick and I'm sorry for what you're going through. I've heard great things about Gores and Mayo. While I can't address your question, I just wanted to welcome you to the site and send wishes of strength right back at you. I'm sure you'll get more feedback to this thread in the near future.

Tess

Re: Elevated CA 19-9 in setting of PSC

Hi Rick;
Sorry I don't have any info for you on cystic duct cc but I also am going to Mayo, have been since Oct 07. If there is anything I can do just let me know. It is a really good sign that they have found whatever type it is early. I am going to pray that it is not cc. You have 2 very good reasons and soon a third to fight whatever this is. As others have said attitude it really important. You have much to live for. Just remember to always keep hope alive and a fighting attitude. Just my opinion. Again let me know if I can help in anyway.
Take care and God Bless,
Jamie

Re: Elevated CA 19-9 in setting of PSC

Hi Rick    good luck with your diagnosis and treatments whatever they turn out to be.It must be very worrying for you with the young family
                                  kind regards  Janet

Re: Elevated CA 19-9 in setting of PSC

Hi Rick,

My spouse's CC presented itself at the junction of the cystic duct and the hepatic duct. It squeezed the cystic duct causing the GB to expand and the pain of that stretched bladder triggered GB laparoscopic surgery.  In the prior two weeks, Mary had 4 ERCPs at two different hospitals with two different doctors, stents were placed BUT the ERCP path reports were negative. The presumptive diagnosis was CC but there was no justification for further work. Then, the GB pain became so great something had to be done. The pain went from feeling fine to level 10 in about eight hours. 

The path report from the GB removal was negative in the GB and the cystic duct.  However, one of the several lymph nodes presented cancerous material so a liver trisegmentectomy was scheduled.  On May 11, they removed 80% of her liver and did a Roux en Y to connect her stomach, remaining liver and intestines together.  That path report confirmed CC throughout the liver and also reported inadequate margins for the CC.  As of this week, she is completing her six weeks of chemo and radiation therapy.  Then she gets a break and we decide on further chemo at the end of September.

The bottom line is simple. The external tests never confirmed the presence of CC. The GB and cystic duct were clean. It was the lymph node from the GB resection that confirmed the cancer. 

Feel free to peruse her story on our website. www.lamey-hughes.com

Re: Elevated CA 19-9 in setting of PSC

Rick;
Just wanted to know how you are doing? When are you going to be at Mayo? Have you found out anymore on a diagnosis?
Take care and God Bless,
Jamie

Re: Elevated CA 19-9 in setting of PSC

Hi Rick,

Hope you received my reply to your e-mail request.

24/7/365 here anytime you need to discuss CC, and just about anything else.

Raye

I'm a passenger on planet Earth and God is driving.

Re: Elevated CA 19-9 in setting of PSC

Rick,

Welcome, you certainly do have a lot to stick around for and you will have a lot of people pulling for you here, we are a one for all, all for one kind of crowd. We are all hoping that your test results present the best possible scenario. Thinking about this cancer can be very stressful, I don't have any advice other than to focus more on what your body is doing and telling you than what the research says. I am guessing you are younger so that is in your favor. Keep us posted.

Patty

Re: Elevated CA 19-9 in setting of PSC

Thank you everyone for the replies so far.  And thank you Raye for sharing your story and info through e-mail - I will probably be getting in touch with you sometime soon.  Here is what I have done and what I know so far:

The FISH staining from the 1st ERCP came back negative, so they brought me back for another few days at Mayo and did a 2nd ERCP.  This time, they found cancer with the FISH staining at the bifurcation (Klatskin) - and they also saw a slight changing in narrowing versus the ERCP 2 weeks prior.  They also believe that the blockage in my cystic duct is benign and a result of either my PSC or related benign blockage.

Based on this information, they believe that I am a candidate for the Mayo Protocol with radiation/chemo/transplant.  So, I will be returning on Sept 8 for full transplant evaluation and if that goes ok (praying hard!), then the following week I start 3 weeks radiation followed by 24 hour brachytherapy and then chemo every 2 of 3 weeks until transplant.  There are lots of hurdles left though:  Insurance approval (this is a relatively new protocol and I've heard stories about insurance denials), verification that there is no mets by staging laparoscopy, passing the transplant evaluation (I'm not as concerned about this), finding a live donor (if I wait for deceased, it could be too late), and then surviving the transplant.

I am not managing as well as I would like, although I am putting up a strong front for my family.  I have a fair amount of RUQ pain, probably from the occluded cystic duct, and some back pain as well - this concerns me that maybe the CCA is more involved than we realize, and I have a fair amount of fatigue as well but this is possible from my primary sclerosing cholangitis.
I desperately want to believe that the Mayo protocol will work for me and that I won't be excluded, but I know that I have to remain patient for awhile yet.  This might be the hardest part.

Anyways, that is the update on me.  I'm sure I will be around much more now that all of the testing and consultations at Mayo are done for the next 1.5 weeks.  Thank you all for your comments.  If you are interested, I have setup a caringbridge website at:  www.caringbridge.com/visit/rickkamp which I am using to chronicle my journey.

Rick Kamp

Ulcerative Colitis 1990, Stage 0 colon cancer and subsequent colectomy with J-pouch in 7/2005, PSC 7/2005, Klatsin CCA 8/2009

Re: Elevated CA 19-9 in setting of PSC

Thank you for the update, Rick and I am sure you know by now that you could not be in any better facility then where you are. The rest will all fall in to place.
I don't think we could classify you as normal if you didn't have the feelings you are experiencing. Please come around often and keep us posted. We all care and are sending out lots of prayers to you and your family.

THANK YOU FOR LOVING ME! Teddy ~In our hearts forever~ATTITUDE is EVERYTHING

Re: Elevated CA 19-9 in setting of PSC

Rick.

I'm here buddy if you need information on the transplant evaluation and things that you will go through. Sorry to hear you have such pain as my CC was painless, thank God.

I was more of a severe liver patient though because of CC and underwent cholangiograms by the dozens ( really) which ended up painfully exhausting after my radiation treatments. It was a long road but all worth it Rick.

If you need to talk or get info. I'm here anytime.

Raye

PS  You will BE a good candidate for a transplant.

I'm a passenger on planet Earth and God is driving.

Re: Elevated CA 19-9 in setting of PSC

Well,  I guess it's about time I wrap up this post with the final diagnosis information.  In the middle of September, during my transplant evaluation for the Mayo Clinic protocol, we discovered what we had hoped we would not - metastasis.  Everything was going SO WELL with the protocol and all of the physicians on that team believed I would be a good candidate for the potentially curative protocol, so we were absolutely devastated.  After 3 MRCP's, 3 ERCP's, 2 Ultrasounds, a bone scan, an endoscopic ultrasound and a whole bunch of other misc. tests it all came down to a CT scan that showed the "lumps and bumps" in my peritoneal cavity.  This was a shock since the radiologists believed the MRCP's would have been more accurate at detecting them and those showed up as clear.  I had a laparoscopy done the next day to confirm the findings on the CT scan which revealed extensive peritoneal and ommentum mets.  I spent a few more days at Mayo to recover from that procedure and then to have a final ERCP with a metallic stent placement (it is my understanding that these are permananet and need only to be dilated every 6 months or so).  I was sent home to pursue a regimine of gemzar and oxaliplatin for pallative/life extending therapy. 

I'm currently 7 weeks into chemo and I definately feel rotten while recovering from it and feel much better when I have an off week.  I'm currently awaiting results of some tumor marker tests and at the end of November I'll probably have another scan to determine if we will continue chemo or not.  It's a hard decision to go forward with the chemo and take away some quality of life if it doesn't give me back some quality and quantity.

Meanwhile, my wife had our 2nd child (a baby boy!) 4 weeks ago and we're trying to patch things together at home.  I've gone on disability leave for SSDI and must wait 6 months before anything starts coming in from that.  Thankfully, my wife can still work part time and bring in some income, but it is a big burden on her to work and also care for the entire family.  This is just a crummy situation all the way around.  Due to my prior illness (primary sclerosing cholangitis), I was never able to get life insurance, either - so I don't have much that I can leave for my family after I pass. 

I guess I'm feeling a little bit blue today and wishing that there was a "way out" of this situation.  I'd like nothing better than to grow old with my wife, to love her and provide for her, and help to raise our family.  Instead, I'm sickly and at times am a burden.  It's embarrassing to admit how I feel today because my Christian faith tells me to trust and obey - and to know that we will be provided for.  Forgive me for my shortcomings today!

The point of this post was just to wrap up the thread and let anyone who was looking for info on the Mayo Protocol to know how things turned out for me.  My case isn't typical - the majority of people who are admitted to the transplant protocol will be able to complete the protocol and for those who do there are excellent long term survivals.  But, in the hope that the protocol offers, keep it in the back of your mind that it doesn't ALWAYS work out.  This cancer is so difficult to find sometimes that it doesn't work out the way that everyone wants it to.

God bless all of you who are battling this disease.  For those of you with mets (anyone with peritoneal/ommentum?), do you have anything you can share on prognosis?  None of my physicians really seem to want to give me a timeframe.

Rick

Ulcerative Colitis 1990, Stage 0 colon cancer and subsequent colectomy with J-pouch in 7/2005, PSC 7/2005, Klatsin CCA 8/2009

Re: Elevated CA 19-9 in setting of PSC

We are so very sorry to hear about your turn of events, Rick. You have every right to rant and rave and I am sure all is forgiven from Heaven to Earth and in between! To chemo or not to chem is a personal decision and like you, I would wait to see the results from this last 7 weeks. In the meantime congratulations on your new son! A beautiful little blessing. Sending prayers and thoughts your way and hoping for a better report to come.

THANK YOU FOR LOVING ME! Teddy ~In our hearts forever~ATTITUDE is EVERYTHING

Re: Elevated CA 19-9 in setting of PSC

Rick,

I am sorry that you have gotten such disappointing news.  I agree with Lainy that you have every right to how you are feeling and then some.  Congratulations on your new little boy.  There is not much anyone can say or do at this point, but know that you and your family are in my thoughts and prayers.  I also will be hoping for some better reports in the future.

Lots of Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Elevated CA 19-9 in setting of PSC

Rick...I am sorry to hear about the current developments.  Everything appeared to be going so well for you.  We have several postings on this board regarding expected transplantations which then had to be halted due to negative test results.   Until others have a chance to respond to your question you might also want to enter the word "peritoneal" in either of the 2 search engines; the google search (right hand side, top of page) or the search function on top, middle of page.  It will lead you to several threads discussing peritoneal spread.  Also, the peripheral neuropathy, a possible side effect of Oxiliplatin (Eloxatin) has been discussed and some helpful tips and hints may be of use to you. 
I have been reading your blog and enjoyed the pictures of your lovely family especially the one's of little Carter. Congratulations.
I am wishing for your treatments to show positive results real soon.
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: Elevated CA 19-9 in setting of PSC

Thank you all for the feedback and for the encouragement.  Today's been a tough day.  One of the guys that was going through the Mayo Protocol with me and whom I had the pleasure of getting to know quite well during those weeks and months got his call for the transplant last week and is finally cured of his PSC and likely the cancer.  I just got an email from him today and I'm so happy for him - but at the same time upset that I can't be on the same path and be around for many more years to care for and live with my wonderful family.  It was a real tear jerker for me to get that email today.  I'm so happy for my friend and his family and so heartbroken for mine.

I did have the forsight to ask my oncologist for some adavan last week to help cope with some of these bad times - but that's not really working so well today!  I guess I'll keep fighting and see what happens.

Rick

Ulcerative Colitis 1990, Stage 0 colon cancer and subsequent colectomy with J-pouch in 7/2005, PSC 7/2005, Klatsin CCA 8/2009

Re: Elevated CA 19-9 in setting of PSC

Rick....your feelings are well understood and much shared certainly, by me.  I am hoping for you to respond well to the current treatment or, another one if needed.  We have seen this cancer retreat or, at times, just stay dormant and that is my wish for you also.  Hope and fight. We are with you, all the way.  I wanted to point out that we have a great psychologist on this site who has been helpful to many of us needing some clarifications or for questions we have a difficult time finding an answer to.  His name is Dr. Giles and he can be contacted by clicking on his link.  You will find it on top, in Patient Support.   He is always there for us just as we are always there for each other.
Much love coming your way,
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: Elevated CA 19-9 in setting of PSC

Rick,

First, congrats on the new baby. They are such little blessings. Second, I am so sorry for your news. It must have been a real blow to your entire family. Be good to yourself and stop worrying about what you might leave your family. You are still with them now, making the memories and wrapping everyone in your love. That is what is important. I am sure if you asked your wife she would agree.

I am not sure, but I think I have the same metasties as you. I havent been given a time frame either, to be fair, I didnt ask and dont want to know. For me it would be like counting down the clock at new year except it is your life. I prefer to remain in ignorant bliss. I have said everything I needed to say to people, I have let me wishes be known and now I am living life, not waiting for death. But perhaps, you would handle the news better than I.

However, I will share what my oncologist told me when I asked about radiation....he said that was for pallative care and we havent gotten that far down the road. So if they are still hoping (not much hope, we all know) that the chemo can get rid of the nasties for me, why not for you? Is there a reason they dont want to surgically remove them? I know that some doctors dont hold with removing metastesis, but I do wonder why not. They remove them in the lymph nodes, why not other places in the body? Anyway,  I am lucky in that my team does surgically remove them but only if they can get them all.

Hugs.
Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Elevated CA 19-9 in setting of PSC

Yes Rick,  I too understand your conflicted feelings of joy & happiness for your friend's success with fighting this disease and the sadness & questioning of why our situations could have not had a better out come.  I am so happy for those on this board that are doing well, but only wish we had been as fortunate and that more on here could be given more hope.  Keep fighting Rick as none of us knows what the future holds and a positive attitude can't hurt.

Love,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Elevated CA 19-9 in setting of PSC

Hi Rick, Firstly congratulations on Carter - your photos show a lovely family group. I am so sorry to read of your ongoing problems. I have only just caught up with your thread - I did have a cystic duct tumour, which I think appeared as a klatskin tumour- looks like the opposite way round from yours. Just goes to show cc is very individual in it's modus operandi!

Be kind to yourself, enjoy your little ones & enjoy the good days with them. Keep fighting & if you feel the need to rant & rave - this is just the place!

Very best wishes, Val

Re: Elevated CA 19-9 in setting of PSC

Rick,

I am sorry to hear this news. You are indeed allowed to feel a little blue over this news, and you are most definitely allowed to get angry and shout if you like. I am keeping my fingers crossed that you get some better results from your tests at the end of the month.

Congratulations on the birth of your son. I hope you can try and enjoy the time with him and your family just now and keep on fighting. And as Darla points out, a positive attitude can't hurt.

My very best wishes to you and your family.

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: Elevated CA 19-9 in setting of PSC

Dear Rick,

Congratulations on your new son! What a blessing to have this new joy at such a difficult time.

One thing that helps me is the thought that we never know what will be discovered on the medical front. When Lance Armstrong was diagnosed with testicular cancer, there was no good treatment for it and most patients didn't live long. He tried a new treatment that was totally experimental, and it cured him and became the standard treatment. Now most people with that cancer survive and do well (even the ones that don't go on to win the Tour de France!) Just a hopeful thought.

Please keep us posted on how things are going for you. We care, and we're always here for you.

Best wishes to all of you--

Kristin

Peace, hope, and healing to all!