Topic: One more addition to group

The day before Thanksgiving we got the news that my wife needed to go to KU Med, a  NCI-designated Cancer Center, for some tests as her doctor spotted a mass in her liver.  Went to Liver Transplant department for more tests early December and was told she had Intrahepatic Cholangiocarcinoma, was non-operable for either transplant or removal of the 5cm tumor that was in both left and right lobes.  All liver functions and blood tests looked good.  Met with the Interventional Radiologist there and he described the proposed procedure of Selective Internal Radiation Therapy and then Trans Arterial Chemoemobolism.  Met with Oncologist who seemed lost and he felt chemo was only possible due to size.  Told him that Radiology had already submitted to BCBS so he called Radiologist and acknowledged he was wrong.  Insurance approved and we had mapping and stunts inserted last week and are waiting for scheduling. 

Seems to have gone slower, but decisions have been made and no time to check for alternatives.  Have not been given any documentation and the above is from memory and piecing things together using Google.  No mention of Proton Beam Irradiation, but KU Med doesn't have it.  Other than the Proton Therapy it looks like the same as Anderson would use.

Wife rests most of the day, getting up for 3-5 hours most days.  Eats little but likes Smoothies which I slip in some Protein Hemp. 

Are we going down right track or are there any suggestions?

Re: One more addition to group

Dear GSKELLY, welcome to our extraordinary family but sorry you had to join us. You are doing everything right but the only suggestion I would have is that you don't close the door to 2nd and 3rd opinions. If you have the Cancer Center put all your wife's tests on a CD you can send it out to a "BIG" Hospital. I guess I like when a Doctor can admit he is wrong but then it leaves me wondering if I am in the right place. As for eating, instead of bigger meals have her 'graze' all day on small stuff and protein shakes work well. I want to wish you the very best and I know others will post their thoughts soon. BTW I was born and raised in KCMO! I remember Shawnee Mission!

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: One more addition to group

Since you are closer to St. Louis than Houston, Barnes/wash U is a good place for a second opinion. Dr Chapman there came highly recommended to me by others on this board and, even though I was diagnosed with extraheoatic cc here in Dallas, I sought a second opinion from him. He was in agreement with my doctors here, which, while it wasn't happy that none of them felt I was a surgical candidate, made me more comfortable with the chemo treatments I'm doing.

Best of luck to you both as you  wade your way through what is confusing/frightening/frustrating.

Impatient patient.

Re: One more addition to group

Also want to welcome you to the club no one wants to belong to but are very glad to have found.  I agree that it seems you are doing all the right things.  Also feel a second and maybe third opinion is warranted at this point and that Barnes/Wash U in St. Louis would be a good choice. 

Wishing you and your wife the best on your journey.  Let us know how things are progress. 

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: One more addition to group

Yes, you're on the right track. Yes, go ahead with multiple opinions even if you're proceeding with the SIR spheres. This would be to ask what next steps may be suggested (do other experts agree chemo embo should be next step?). How soon after sir rad would they start the chemo embo? Glad you got in board with interventional  radiologist as soon as they said "non operable". You never know, the tumor may shrink enough from these treatments to allow surgery.. It has happened to several on this board. Is it just one tumor?.. Really depends on individual case, whether mets are outside liver (like in nearest lymph nodes), how agressive the surgeon is and how confident they are of getting it all. This cancer has a high recurrence rate, so they don't jump into surgery lightly. Do you mind sharing: What is your wife's age and general health other than the CC? What were the symptoms that took her to Dr initially? Did she have any known risk factors such as PSC (primary Sclerosing Cholangitis) or other GI issues? Did she have a biopsy? Ask now, early on, about genetic testing of a sample of her biopsy if possible, to look for mutations and bio markers that may help her qualify for clinical trials down the road.
Sincere best wishes to your wife and my empathy to you for having to be here in the first place.
Willow

Willow

6 (edited by jathy1125 Tue, 28 Jan 2014 18:52:26)

Re: One more addition to group

GSKelly-Welcome and sorry you had to find us. I am an almost 5 year CC survivor due to my hero Dr. William Chapman at Barnes-Jewish in St. Louis MO. I can not tell you enough how important a second opinion is, our cancer is very rare, very complicated and that leads to many opinions. I will be heading to Florida next week to spend time with another CC survivor who was given no HOPE by two major cancer centers on the east coast, but found my story and contacted Dr. Chapman and he was able to do a resection!! I can not say enough about the heart and soul of this doctor. I do know he is very phone friendly and will give you answers quickly, because he knows time is not our friend. A second opinion can only validate what you already know, or give you HOPE. Dr. Chapman and I just did a video for Barnes and you can watch it at www.barnes-jewish.org/patient-stories/cathy under patient stories. I also keep my story posted at www.catherinedunngan.com
Please feel free to contact me if you want to tall or if I can help, jrdunnagan@gmail.com or 618-567-3247.
Lots of prayers for HOPE-Cathy

7 (edited by PCL1029 Wed, 29 Jan 2014 09:35:43)

Re: One more addition to group

Hi, Glen,

May I ask what age is your wife?
You mentioned she have tumor in both lobes? if this is true, will the IR (Radiologist) do the procedure for the whole liver or segmental?that means one lobe at a time to minimize the radiation toxicity to the liver and do SIRT a few weeks later to allow the liver recover more ,then do the other lobe. It is much easier for the IR to do the whole lobe as one procedure. it save time and money, but you can ask above concern to them and let them tell you professionly and medically.
In general, young patient can take a bigger dose of radiation by SIRT on both lobes, but if the patient's liver functions was  abnormal to start with and his/her age is not young(ie: >65,just an example and not a scientific figure), then make your concern known to the doctor  especially the patient have other health issues(ie: hypertension,diabetes lung and  thyroid issues.) co-exist with the cholangiocarcinoma at the same time of the procedure. So the doctor will be more cautious and will monitor the patient more closely .
My point is the older the patient the longer and harder it takes to recover.

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: One more addition to group

Cathy thank you for sharing the video with us it was just fabulous! Dr. Chapman does look like a very kind man and girl, you are adorable! Very good video. Loved the picture of you at your daughter's Graduation!

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: One more addition to group

Wow, amazed at rapid response and questions. 

She is a young and active 63 and had been in good health other than poor circulation in the legs, "PAD",  treated with medication.  No symptoms other than weight loss, which she attributed to retirement as a CPA meaning less stress and candy.  In November she started having pain in right side which she attributed to lifting and moving 'stuff' for her mother.  No liver problems and all functions seemed fine.  I believe they performed a needle biopsy at the Kidney Clinic.  Both labs are involved, and doctor plans two sessions a week or so apart.  She is reluctant to ask for 2nd opinion at this point. 

I think I covered the questions.  Thanks

Re: One more addition to group

gskelley....this site is comprised of the most wonderful, kind and caring individuals.  The quick response to your posting is one of the attributes so much appreciated by all.
Good luck on the procedure and please keep us in the loop. Side effects (if any) are discussed in the "Adverse Reactions & Side Effects" section of our site.

But, please don't hesitate from reaching out for questions that may come about and you would like to receive responses to. 

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: One more addition to group

Just read the post from Jason Scott, which quoted Dr. Greg Gores of the Mayo Clinic at last weeks ASCO GI - Practice Guidelines for Intrahepatic CCA
Conference in San Francisco.  "There was an interesting discussion on TransArterial ChemoEmbolization (TACE) and TransArterial RadioEmbolization (TARE). He suggested these as FIRST LINE treatment when resection is not possible for ICC."  He felt gene sequencing results for ICC, which divided ICC into "Proliferation class vs Inflammation class" was helpful as the types of mutations associated with each type were different.  He thought this would be important for treatment soon. 

Made me somewhat relieved plus the fact that our radiologist attended.  I guess the target is always moving, however.   But the St. Louis connection will be used at the appropriate time.

Re: One more addition to group

Gskelly,

I want to add my welcome to the rest.  Sounds like you are doing the right things, as others have said. 

There is always someone (usually more than one) that has the answer to any question posed here.  Come back often and ask all the questions you have.  We are here for you.

-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.

Re: One more addition to group

Hi,

Your wife is in good hands especially if the SIRT will be done in 2 sessions to lower the risk of radiation toxicity to the liver.

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: One more addition to group

Been busy and haven't kept you up with events.  Wife had mapping and then 1st treatment of SIRT three weeks ago.  Held her over as high heart rate and low blood pressure, which is not uncommon for her.  The pain has increased ever since and today had 3 liters of fluid taken off her mid section in hopes of alleviating some of the pain.  She looks pregnant with swollen ankles and feet, although has lost 20 pounds to 110.  They have put off the next treatment for two weeks hoping she will regain strength.  She is very weak and can barely get out of bed.  Thinking of taking her to Barnes in St. Louis shortly.  Multi Disciplinary Team seems dysfunctional as not much information being dispersed.

Re: One more addition to group

Dear GSKelly, I am sorry to hear what your wife is going through but I do know this.....you can do NO wrong by taking her to Barnes! In fact I would do that and soon. Otherwise you are doing all the good and correct things. So much of this is hunt and peck. I hope you get in sooner than later and get some good news you can use for the fight! Jus6t a reminder to have her graze during the day for nourishment and protein shakes are good too. 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.