Topic: Mom's diagnosis, new member

Hi there - I must say that I'm not sure how I've survived the last 18 months without the support of this amazing group.  I hate meeting everyone under such circumstances but I am already so grateful for you all.  I recently discovered what an incredible resource this is and immediately felt even more hopeful and certainly not alone.  I wanted to introduce myself... I am Sandy, wife and mother of 4y/o boy and 20 month old girl.  I am the daughter to my most amazing, kind, beautiful mom who was diagnosed with CC back in Feb, 2012.  My Mom (Sherry) has truly been a specimen of health all her life, never sick and led the healthiest lifestyle of anyone we know.  She taught PE, health and was a high school coach for 35 years.  She showed no signs of the disease other than a sudden onset of extreme abdominal pain back in July, 2011.  She spent time in the ER where they could find no source of the pain other than a spot they found on her liver that we all of course never knew anything about.  After 7 months of misdiagnosis', debauchery through primary care/gastro docs and over 20+ benign biopsies...they finally got a readable tissue sample and we learned of our most awful nightmare ever.  At that time she was under the care of Kaiser who gave us a grim outlook.  We were told liver transplant and surgery both were not options based on the location of the tumors.  They said that we could try chemo-embolization (TACE) which would just prolong the inevitable and would diminish her quality of life.  They didn't have much to offer at best.  At that point we got second opinions at USC and UCSD, both of which offered much more hope than we were originally given at Kaiser.  They both felt they could do a resection.  We decided to go with Dr. Alan Hemming at UCSD who is an amazing surgeon who specializes in bile duct surgery for malignancies.  He felt he could help but that there was still huge risk.  The unfortunate part was that had we known initially what the spot on her liver was, 7 months earlier, he could have had a much simpler task at hand in the resection.  Prior to surgery she did about 2 1/2 rounds of gemzar/cisplatic with hopes of shrinking the tumors enough to make the resection more hopeful.  On May 15th, 2012 he resected 75% of her liver.  He removed all the tumors and found no lesions in the surrounding lymph nodes.  The surgery was a big success.  However the pathology revealed positive margins in her remaining liver.  She recovered from the surgery incredibly fast and amazed all the docs.  Unfortunately, they nicked her bile duct slightly in the surgery while trying to get all malignancies out and she had a biloma (fluid collection) that had developed in her abdomen.  That prompted a stint procedure whichh eventually led to the placement of an external drain.  Once this whole issue was stabilized with the external drain she had another CT Scan to get a baseline on her recovered state.  They found a few satellite tumors in her regenerated liver (which was somewhat to be expected with positive margins).  At this point, she proceeded with several variations of systemic chemo. 
- 9 weeks of taxotere and xeloda - ineffective
- 6 weeks of doxorubicin - ineffective
- 5 weeks of gemzar and cisplatin - ineffective
- 10 weeks of insulin potentiated therapy with high dose vitamins - somewhat stable in some areas and ineffective in others - but depleted her bone marrow and her platelet count got to zero.  Ugh.

She was hospitalized for 8 days over the 4th of July to get her blood counts stabilized and infection managed.  We are now working again with a wonderful oncology group at UCSD.  They have a new clinical foundation that has been established by top research docs who have come to UCSD from MD Anderson.  They want to do some molecular profiling on the genetic mutations of my mom's tumors with the hope that they find a match to a previously identified gene mutation in which they've had success treating.  We feel very hopeful that this seems like an extremely scientifically targeted attempt to treat my mom.  The fact that she has tried so many variations of systemic chemo with no real encouraging results - this to me seems to be a great way to better understand how to effectively treat her.   One hesitation is the endoscopy where they will get the biopsy.  What is everyone's thoughts on risk of tracking/spreading the cancer cells through biopsy?  It seems as though when they performed so many biopsies on my mom in an effort to find out what was originally wrong (pre-diagnosis), the cancer spread like wild fire at that particular time.  Any thoughts on this whole molecular profiling approach in general? 

We continue to be extremely positive and hopeful.  Mom has the best attitude around and has so much fight to give and still smiles so much everyday.  We have certainly learned to enjoy every minute together no matter what and wow, all this really makes life seem so delicate and fragile.  Never in my wildest dreams could I have ever imagined this situation for my courageous mom.  I am so grateful for our amazing family and friends along with our new CC.org family.

Re: Mom's diagnosis, new member

Hi,

Since your mom had surgery done not long ago(May 15, 2012); I think they can use the "pathology tissue block" that identify the tumor as cholangiocarcinoma to do the" next-generation  gene sequence"  ;NOT just doing  the chemotherapy agent sensitivity report but the WHOLE gene sequence. The only disadvantage of the paraffin tissue block is it is/maybe not as good as Fresh tumor tissue.
Since your mom has most if not all the level 1 and 2 chemotherapy agents used and find not effective; the next logical step is targeted agents therapy and that will be best to have a road map to guide the oncologist to use the most effective targeted agents to treat you mom. and in this case,"The next-generation gene sequence" is the road map . It save time and expenses to find the effective treatment rather than like the chemotherapy experience that your mom had--- try this, if not work ,then try a different one . and that is the reason you mom should have the "next-generation gene full sequence" done to guide treatment plan.( but please remember, I am only a patient for 53 months of this disease and not a doctor. I am 63.)

Other arms of treatments like interventional radiology ,such as  RFA,Chemoembo,IRE,microwave ablation and radioembolization for intrahepatic CCA, and immunotherapy such as anti PD-1 or PDL-1.

Keeping uptodate knowledge about this disease and new development is important too as well as treating this disease as chronic disease is also a good
way to deal with this roller-coaster disease.

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: Mom's diagnosis, new member

Sandy...welcome to our site.  I so much agree with you in staying positive and hopeful; there is much to figured out yet.  In re: to the genetic profiling; it is the future and to some extent the present of modern medicine. You would want to ask the oncologist:
"With this cancer type, what are the benefits of molecular profiling and what is the risk with the procedure?"
I think these two questions will evoke some good answers. And, I am sure that others will come along real soon to share their thoughts with you also.
So glad that you have found us - we are here to help and share and stick together like glue.
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: Mom's diagnosis, new member

Dear SandyC, welcome to the best little club in the world that no one wishes to join. Wow, your Mom has really run the gamut from A to Z. She sounds like an absolutely wonderful person and I can tell that by the wonderful daughter she raised! I can't add anything medically as my husband had a Whipple and never had chemo. Percy is a great giver of great Medical advice, he hears of things while after 8 years I am still saying to myself, cholangiocarcinoma, WHO? Mom's attitude is great and that is half the battle. I would print off Percy's post and take it to the ONC and see what he thinks.  Don't yell at me, Percy! Sandy stay very positive and always HOPEFUL! Please keep us updated as we really 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: Mom's diagnosis, new member

I am curious about the 10 weeks of insulin potentiated therapy with high dose vitamins, was that done at UCSD or by a Dr of natural medicine?

I have read other's posts saying that biopsies can spread the cancer, but that is just what I've read.

Sorry to hear what your mom has been going through.

take care,

Susie

Re: Mom's diagnosis, new member

Thanks everyone so very much for your feedback and of course the encouragement.

Lainy, I will most certainly print off Percy's response and detailed info and take that with us to our oncologist appt tomorrow. Great advice.

Susie, she did her 10 weeks of IPT at a clinic called Euromed in Phoenix, Az.

Marion, thank you so much. Will def ask those two questions.

One thing I forgot to clarify about her details are that she was 62 at the time of her diagnosis and that hers is considered intrahepatic cc.

Thanks again everyone!

Re: Mom's diagnosis, new member

Sandy, my daughter's boyfriend has Lymphoma and went to Euromed and after spending $50,000 out of pocket for IVs of Vitamin C the Cancer returned a year later! Is your Mom in Phoenix?

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: Mom's diagnosis, new member

Hi Lainy,
I'm so sorry to hear about your daughter's boyfriend.  My mom is not in Phoenix.  They are in Huntington Beach, CA (Orange County area).