1 (edited by Sfbaybreeze Sun, 18 Jun 2017 12:00:33)

Topic: Walking The Road

Hello everyone – My name is Tilly and my husband, Peter (52), was diagnosed with CCA in March.  I have been following the message board for many weeks now and have wanted to join but things were moving very quickly.  I will apologize in advance for the length of this post but it seems as though the philosophy of this group is to share as much as possible both for feedback and to contribute to the pool of information.  So here goes!

-  Early warning signs in January when he felt a constriction in his chest and they ran all the tests for heart problems (blood tests, treadmill, etc.) and they said his heart was very healthy.  The standard blood panel ordered by his primary doc was fine but in looking back, all his liver function values were at the top end of normal.  In retrospect we think it was his bile duct starting to close with cancer growth.

-  In February increasing nausea and dyspepsia, prescribed Pepcid. He was having dark urine and he mentioned it to his primary but the doctor suggested he might not be drinking enough water.  Frustrating as a missed “catch” but ultimately it delayed diagnosis by maybe 2-3 weeks when…

-  On the morning of March 1st he put on a white dress shirt for work and it was obvious to both of us that he was very jaundiced.  So down the rabbit hole we went!

-  Early March ERCP to place a stent and clear the jaundice.  Late March a Spyglass ERCP for definitive diagnosis of distal CCA.  Referred to a surgeon who recommended a Whipple.  CA 19-9 in the 400’s.  The hospital was very high volume for the procedure, basically one Whipple per week. And his surgeon (we loved him!) was the primary for 18 Whipple’s last year and scrubbed in on many more.

-  Mid-April my hero husband endured a 14-hour Whipple.  They were unable to do a pylorus preserving.  I think the surgery went so long because he was strong and stable throughout and his surgeon was battling hard to get every bit of cancer he could.  Unfortunately: he had tumor on his mesenteric artery that could not be removed.  Fortunately: clean margins everywhere else and no lymph node involvement.

-  Seven days in the hospital basically uneventful but for some scary opioid-induced delirium on post-op day two.  Once they pulled him off the heavy drugs he did fine on IV Tylenol for the rest of his stay.  We went home with a feeding pump (off after two weeks), a surgical drain (pulled after 25 days at home), and learning to manage his diabetes with insulin.  The surgeon feels like he shouldn’t remain a diabetic but we’ve decided it’s not our biggest problem.  CCA is our biggest problem.  He is now nine weeks post surgery and he’s kind of the poster dude for super recovery from a Whipple but he had the advantage of being relatively young and in good health other than the 1,000-pound dragon in his biliary tract.

-  When Peter was about six weeks post surgery we had a consultation with a UCSF Cancer Center gastrointestinal oncologist (Margaret Tempero).  We got this appointment much quicker than we had expected. We couldn’t really call it a second opinion because we hadn’t actually had formal staging done or the referral to an oncologist at our hospital.  Dr. Tempero outlined the Gemzar/Cisplatin first line treatment and said we should have the tumor tested for Micro-satellite instability (which she said our provider should cover) as well as genetic testing/molecular profiling (which she said our provider would probably not cover).  We opted to pay for testing through the UCSF 500 Cancer Gene Panel (vs. Foundation One).

-  There was some debate amongst his care team/hospital tumor board about whether he had gall bladder cancer that spread to his bile duct or bile duct cancer that spread back to his gall bladder.  But his oncologist has said it’s all kind of academic because the treatment protocol is basically the same.  So he’s either Stage IV gall bladder or Stage IIIB distal bile duct.

-  Early June we met our oncologist and, after he had a chance to strategize with the other gastro-oncologists in the group, they recommended the SWOG S0809 protocol (Gemzar/Xeloda; 21 day cycle; 4 cycles; then Xeloda and targeted radiation of the tumor bed for 4-6 weeks).  We do understand that most of the patients in the SWOG protocol had either completely resected cancer (R0) or microscopic traces of cancer (R1) and Peter has visible tumor (R2), but we felt that our oncologist went through a good process in reaching this recommendation and we are on board for trying it.

-  Baseline CT last week showed no metastasis (praise be!); CA 19-9 at 89; Micro-satellite instability didn’t swing our way for going on Keytruda (I had my hopes high on that one).

-  Started chemotherapy this past Wednesday and “so far, so good” as Peter has been saying.

If you’ve read this far, thank you for reading this far!  I will do my best to keep the community updated on how things are going for us.  In following this board as a guest for the last few weeks I have been so impressed with the folks who post to the site.  Survivors, caregivers, and surviving loved ones have shown remarkable bravery and compassion, and given caring advice and guidance.  I’m sorry that my husband and I have been detoured onto this difficult path but I was glad to find you all on the road.  Blessings and thanks to everyone!

"Instructions for living a life. Pay attention. Be astonished. Tell about it."  -- Mary Oliver

Re: Walking The Road

Thank you so much for sharing the details of your journey so far.  I appreciate the info and feel that it helps me with my journey as well.  I am so glad your husband has responded well to his treatments so far.  Congrats on the Whipple!!

Re: Walking The Road

Dear Tilly,

Sorry you were detoured here, but we're very happy to have you join us.  And, you are so correct with the details helping.  I have seen questions on how long recovery takes from a Whipple. and your post gives valuable information to others.  It also gives a waning about the risks of over medicating with the opiods-  we went through this with my father and it took several days to get out of his system.

Just curious; are you in the medical profession? 

We look forward to the updates and wish you r husband great success.

Best wishes,
Catherine

Not a medical Professional-  just someone who got caught up in this lousy disease.

Re: Walking The Road

Tilly....welcome to our special group.

Happy to hear of Peter's speedy recovery from surrgery. He has many things working in his favor, he is strong, has a great wife advocatinge for him and he is tended to by a fantastic healthcare team.  Excellent.

Very few cholangiocarcinoma patients present with  Micro-satellite instability, don't think  it encompasses more than 5% of all CCA diagnoses.  And, we don't really know yet the outcome of those placed on keytruda with this alterations. 

So, the alternative options makes perfect sense in that one could  expect a great response to  Peter's  R2 macroscopic residual tumor.

Thanks for joining in and please continue to engage with us - we are in this together.

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: Walking The Road

Hello Ladies- Thank you all for your warm welcome.  Catherine, in answer to your question: I am not a clinician but I am a medical librarian.  I've worked in both academic and hospital medical libraries since the late 1980's.

When my husband was first diagnosed I couldn't bear to do any research once I looked at the five year survival rates for this cancer.  Even though I could think of a number of logical reasons not to let the percentages rule Peter's fate, I was terrified.  One of my best friends said to me, "Don't play the numbers game.  How do you know he won't be in that percentage that survives beyond five years?"  It can be very hard to kick fear out of the driver's seat.  Some days are better than others but at some point I decided to put my librarian hat back on my head and start searching.  I have colleagues who are amazing super searchers and I wouldn't put myself in that category but I keep plunking away at it.  I'm hoping I can contribute in some way to the knowledge base of this board.  All the best, Tilly

"Instructions for living a life. Pay attention. Be astonished. Tell about it."  -- Mary Oliver

Re: Walking The Road

Tilly,

I knew the medical jargon came much too freely for you to be new to it.  You have already contributed to the knowledge base and I have a feeling you will do so even more in the future ( I'll thank you now for it in case I forget later).

If we had only looked at the stats and prognosis docs gave us, Mom might not have bothered trying the chemo, and then we wouldn't have been able to go on to other treatments.  My Mom is not the norm, but she is not the only one who is doing much better then the ONCs said at diagnosis. 

In May 2014, extended family all met in FL for a last hurrah for Mom-  they said she had a year.  Today we spent the afternoon shopping and went to lunch.  It's hard, but try to find the balance between reading the journals/stats, but then assume that many more are now surviving towards the upper end - or even longer- than the studies report.  I'm pretty sure my mother's survival through Y90 hasn't been captured in the stats. 

Take care,
Catherine

Not a medical Professional-  just someone who got caught up in this lousy disease.

Re: Walking The Road

Thank you for sharing your story and joining our forum Tilly.  It takes determination and courage.  I remember when I found this forum, and was happy to know there was a population going through the same.  I took the plunge and joined at a time when all this information was new to me.  I didn't even know we had bile ducts, as you can see knowledge from step one.  I went through the same emotions as everyone, panic, sadness, worry, hopeless, and kept coming across poor statistics and interacting with some doctors was not favorable.  I had to swim through the muddy waters of the unknown.

What I have learned so far, which is based on my mom's individual case and having to go with my beliefs.
I believe the cause of CC is a high inflammatory state.
The standard chemo of gem/cis does not work for everyone and with the major side effects can make certain patients like my mom who has chronic anemia worse. (we had to turn down chemo)
Need more immunotherapy treatments, and patients should be requested a molecular test from the beginning not when the condition gets worse.
Unfortunately oncologists are extremely limited with what they can suggest and this needs to change.

This is just a brief overview of my experience, and I understand how difficult this condition is as I continue this journey.  It was rough at the beginning of diagnosis, and I had to get it together and help, even if it's just to control symptoms. 

Working together in this group ,we can and will see changes.

Re: Walking The Road

Hi Tilly, and welcome to our group.  I am not very familiar with Distal CC (my husband had Hilar CC), but we also live in the Bay Area and initially had medical insurance through a large regional HMO that did not have much experience with Cholangiocarcinoma.  We also consulted with UCSF, and ultimately changed health plans so that my husband could undergo a resection with them.  That was two years ago, and the surgeon at UCSF saved my husband's life!  The entire team there is beyond outstanding- can't endorse them enough. 

We also were disheartened when we looked at five year survival rates for this disease.  Through this board, we learned that you can't assume that those statistics will apply to your individual case. Remaining positive and making the best decision based on the information/situation occurring at the moment has huge benefits- it allows the patient to get the best treatment available.  Plus, increasingly, new discoveries and treatments are surfacing. Many of these are promising.  We have many patients on this board that are living happy, productive lives with this disease as a chronic condition. A number are also living with NED!

I wish you didn't need to be on this board, but am glad you found us. Please keep us posted on your husband's progress, and of course, reach out for help whenever you need.

Debbie

Re: Walking The Road

Hi Tilly and Welcome.  Thank you for outlining your husband's diagnosis and treatment.  You did an excellent job and many will come after you (unfortunately) who will benefit from your post.  I was diagnosed  in Feb of 2014, with intrahepatic CC and had a resection of my liver, so I am not familiar with your husband's surgery very much, but I am aware of Whipples.  Glad to hear that he recovered so well.   I am currently NED...again as of last August, after having a second resection for a recurrence after about two years and another recurrence 7 months later (August).  I'm currently falso fighting MDS (as a result of the adjuvant chemo....a rare side effect....but I am in remission from that, though we don't know for how long...it will eventually fail).  There have been many dark days since 2014....but I am enjoying my life as God gives it to me.....and celebrating  my grandon's 6th birthday this weekend.  I use to be a cake decorator....so SI will be once again making him a special cake....this year...a tornado cake.  LOL   He LOVES weather stuff!  Last year was the Saturn V rocket cake ....because he was into space related things and rocketry.  There IS life after CC.  I don't know how long the MDS  and CC are going to let me stay around., but I'm not going to miss a moment God gives.    Hang in there.

"Just for today, I can get through anything."  I'm a cancer survivor, not a doctor.  The opinions I state are my own, based on my personal experiences.    As always, talk to your doctor about your concerns and treatment.

Re: Walking The Road

Thoughts and prayers are with you every day Julie (Iowa girl)-  I do have to admit i kind of cringe on how creative you can be even with this crappy disease.  With the nice weather forecast, we will order pizza and hang out on the deck this weekend.  We will be celebrating Mom's 77th bday-   a milestone the doctor's said we would not reach.  And, it will be a Carvel Icecream cake smile

Love and hugs,
Catherine

Not a medical Professional-  just someone who got caught up in this lousy disease.

Re: Walking The Road

Thanks again for all the welcome messages.  It does seem like there are two main surgery tracks for those who are able to have surgery -- liver resection for intrahepatic CCA and the Whipple for extra hepatic/distal CCA.

It is amazing how the little pleasures of life can seem huge post-diagnosis.  Yesterday we went out to lunch at one of our favorite restaurants.  I was so grateful that he had a good appetite going into his second week of chemo and we had a lovely time.  So far handling chemo OK other than some hives that popped up on his knees.  Blessings and best to all!  Tilly

"Instructions for living a life. Pay attention. Be astonished. Tell about it."  -- Mary Oliver

Re: Walking The Road

Happy to know you are takig advantage of the beautiful weather.  Lainy used to remind that  "live is for the living. Peter and you have gone through alot, enjoy.   
BTW:  I live in the San Francisco Bary area as well. 

Wanted to mention that the cholangiocarcinoma hilar region is treated with surgery as well.  It's a   combined liver and bile duct resection.
Here is an article explaining in detail:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1357124/

Hope you and Peter can get out this weekend as well.

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