Topic: Daughter of Newly Diagnosed 58yo Mom

Hi all ~

Two weeks ago, my healthy and beautiful 58-year old mother of 5 children (ages 22-33) was diagnosed with Stage IV cholangiocarcinoma with mets to her liver, bone, lung, and lymph. We've been told that neither resection nor liver surgery are possible due to tumors on both lobes, though I wonder if this is really true given the liver's ability to regenerate, and given her strong underlying fitness and health baseline (discussed below). Also clearly not a transplant candidate given the Stage IV. When a scan early this week revealed more bone disease than originally thought, she was rushed into an emergency night-time MRI, and the next day scheduled for neurosurgery to remove her completely diseased (and fractured) C4 vertebrae and surrounding discs, replacing them with a titanium cage to which the C3 and C5 will ultimately fuse. This procedure was successful yesterday, though during it her esophagus incurred a tiny puncture which received 2 stitches so she can't eat or drink for 5 days (currently 115 lbs., 5'4"). Once she recovers from this (2+ weeks?) she'll start a traditional front-line chemo course for CC. (Likely the 2-drug combination of Gemcitabine + Cisplatin (Gem/CIS) though discussions are also being had over FOLFOX, and 5-FU).  One oncologist suggested only palliative care for containment and pain-management, and the other suggests an aggressive "all out" approach to try and kill all the cancer, though all have been careful not to use the word 'cure'.  One of her several UCLA oncologists (this one specializing in hepatology and biliary issues) is consulting with Dr. Javle at HDAnderson in Houston, and they're discussing treatment options. She may simultaneously have radiation to treat some additional bone spots in her thoracic and lumbar regions. Pathology reports, MRI's, PET, CT, upper endoscopies, barium imaging, x-rays, etc. have ruled out the usual primaries (breast, brain, lung, liver, colon). Belief at this time is that the primary is either CC, or it may fall into the range of "3-4% with undiagnosed primaries".

We've recently learned that she was accepted into an anti-PD1 trial, which is not chemo but leads the immune system to fight the cancer. Tissue samples from 2 separate liver biopsies and the C4 vertebral tumor are also being sent to GenenTech and the Caris Foundation for evaluation.

Interesting family history background -- Her father was diagnosed with Stage IV colon cancer at the age of 58 (same age of her current diagnosis), with mets to his liver and lung. He died from these complications at age 59 1/2. His cancer was treated with 5-FU, one of the same chemo's they're considering for my mom's treatment today, 23 years later.  (Is this really the best course? Had medicine not advanced beyond this in 23 years?).  It has been suggested to us children that we be genetically screened for Lynch Syndrome, and/or request routine PET scans in our mid-thirties onward for early identification, should anything exist.  So far, the apparent trend with my mom and her father suggests a genetic predisposition, though his parents lived into their 80's on both sides (both dying of heart issues), her mother is still alive, and her 2 brothers (53 and 55) have no known issues of this nature though are pursuing testing at this time.  Any known links with Lynch Syndrome and CC diagnosis?  So far, doctors are mixed on this.

She has maintained a gluten and dairy free diet, takes many herbal and other supplements (including recancostat currently), avidly exercises, has utilized acupuncture and chiropractic throughout her life, and has always been proactive about her health and wellness (colonoscopies beginning at age 35 - always clear, etc.).  No routine preventative exams revealed any of this; there were no liver enzyme spikes, or other abnormalities. She discovered a lump in her stomach during a Pilates class 3 weeks ago, and her PCP referred her to a specialist which revealed the lump to be liver tumors.  Here we are today.

I guess what I'm looking for from this board are tips, suggestions, advice, help, support, cutting-edge treatments, research, or any other things people who have loved ones with this rare cancer typically seek.  I've never done this before and it's heart-breaking, scary, and sad.  I'll continue to post updates and her treatments, procedures, etc. in case it's of interest or help to others out there.  Thanks and best wishes for health to all.

Re: Daughter of Newly Diagnosed 58yo Mom

Dear Aticon, Welcome to our extraordinary family, and know you have come to the right place! Wow, where to begin. First of all Mom's ONCs are doing a good thing by consulting with Dr.Javle for another opinion, as you may have read we are big believers in 2nd, 3rd, 4th opinions. Your Mom sounds like quite the warrior and UCLA is good, so those important things are being done.  I have never heard of Lynch Syndrome, sorry. I feel with your family history it would put a lot of your minds to rest by being genetically screened. Yes, what Mom is going through IS heartbreaking, scary and sad but I feel you are doing everything possible that you can. Is she in pain now? Wish I could tell you more  but others will be along who can perhaps help more on the treatment part of it. Be as strong as you can and try to be upbeat around Mom as attitude can help a lot and please do keep us updated as we truly 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: Daughter of Newly Diagnosed 58yo Mom

Thanks, Lainy. 

As to pain, her pain level immediately after neurosurgery yesterday was a 10+ on the 10 scale. (She had all 5 of her children without anesthesia and has an incredibly high threshold...had been managing it for the bone mets during the prior 2 weeks with just 3 Advil a day, if that's any indication). She was given hydromorphone (Dilaudid) yesterday after surgery, having received some morphine just prior. Then started to feel nauseous so was given something else for nausea. When I left the hospital last night after 2am her pain was down to a level 5, though she didn't think she could sleep with it that high (and didn't, largely due to the oxygen machine beeping continuously throughout the night). Spoke with her this morning and her pain is managed now with no nausea, so that's clearly good. Expect to go back there to visit in a couple hours; she won't be released until Tuesday or Wednesday (5 days inpatient at St. John's...thank heavens for insurance). 

Regarding pain prior to all of this, she'd been walking around the house with a heating pad on her abdomen, and had chronic neck/shoulder pain (which we can now attribute to the liver tumors, and her diseased C4 vertebrae which the neurosurgeon said was so soft, it was like the inside of a bagel (his actual quote, however unmedical - lol). 

She wants to be aggressive with her treatment, and has the most amazing upbeat, positive, optimistic, no fear attitude.  She has an incredibly strong faith, and I know this is all helping her carry through (...mind/body connection).  Her optimism is humbling.  I don't have a fraction of her strength; I've cried myself to sleep every night with all this.

I ordered 25 CC bracelets from the Foundation and now everyone in my family is sporting them in solidarity for her.

Hoping, praying, caring, trying....we'll do anything we can for her.  Thanks, all.

Re: Daughter of Newly Diagnosed 58yo Mom

Dear Aticon,

Hello and welcome the site that you really never wanted to join, but is full of wonderful people and great information.

Wow, you and your Mom have been through a lot in 3 weeks time.  Your note indicates that you are the type that likes to get all of the information you can and make good informed decisions.  That is the best defense against this disease, so you are already armed and ready for the fight!

Dr. Javle is a name I see on this site often and with very positive comments. Sounds like you are doing the right things to take control of the situation and I hope that is giving you a sense of comfort.

I've never heard of Lynch Syndrome but I was tested for all of the BRCAs, Cowden Syndrome and Li-Fraumeni (all were negative).  I have never heard of people getting regular PET scans to detect cancer that they don't already have.  I'll bet there are many pros and cons to this approach, since there are a many false positives for PET scans and it may cause undue stress and further treatment where none is needed.  To be honest, I have had cancer 3 times and have never had a PET scan in my life.  I'll be curious to see what the docs say about that to you.

I hope things start falling into place for your dear Mom and she gets started on a treatment that helps soon.

Please keep us posted on her progress and my thoughts are with you, your Mom and your family.

-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: Daughter of Newly Diagnosed 58yo Mom

Sear Aticon, I must say I will think about eating a bagel now that it has a new meaning! I am glad the pain is coming down. I know when my Husband had his Whipple, Morphine worked best for him. Dilaudid and Fentanyl did nothing but everyone is different. My husband was Sicilian, therefore a staunch Catholic, besides a staunch Sicilian, lol.  (I am Jewish) and his faith did wonders for his attitude which taught me a valuable life lesson.  I have to give you my 'ol Teddy bracelet story: We also had given out bracelets to friends and family, One night a couple was visiting and we took them to our favorite Italian Restaurant and as usual T and I were wearing our bracelets. His friend asked him what the bracelet said, (and as we all know it is very hard to pronounce let alone spell)and T said oh, that's my Cancer.....Angelo Carcinoma! I had to hold my mouth not to laugh, but leave it to Teddy to make his Cancer a Sicilian! I guess we got through everything with some humor thrown in. BTW, of course you have not landed yet from this roller coaster as you have only known for 2 weeks. I promise you that once a game plan is in place the fright will turn even more to fight.

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: Daughter of Newly Diagnosed 58yo Mom

Hi Aticon,

The medical paper linked below describes the link between Lynch syndrome and CC.

Hereditary Pancreatic and Hepatobiliary Cancers
http://www.hindawi.com/journals/ijso/2011/154673/

Here's the relevant paragraph from the paper:

3.2.1. Specific Diseases with Inherited Predisposition for Bile-Duct Cancer

In a cohort of 472 patients from 15 different families with HNPCC, cancer of the biliopancreatic tract was seen in 18 patients, 11 (79%) of which were confirmed as arising in the biliary tree or ampulla of Vater [87].  Despite a >9-fold increased risk of bile-duct cancer in patients with HNPCC [88], routine screening for bile-duct cancer has not been recommended [89], owing in large part to the difficulty in detecting these cancers and their rarity.

HNPCC refers to Lynch syndrome. This paragraph answers two of your questions:

1. Lynch syndrome dose raise the risk of bile duct cancer.
2. Routine screening is not recommended.

My wife's tumor got tested for Lynch syndrome after her surgery. The result was negative.

7 (edited by PCL1029 Sun, 07 Apr 2013 08:09:27)

Re: Daughter of Newly Diagnosed 58yo Mom

Hi,
"We've recently learned that she was accepted into an anti-PD1 trial, which is not chemo but leads the immune system to fight the cancer. Tissue samples from 2 separate liver biopsies and the C4 vertebral tumor are also being sent to GenenTech and the Caris Foundation for evaluation..
And since your mother has been gone thru a lot of surgical treatment,and the successful  outcome of chemotherapy for CCAis around 20%  with side effects that can diminish the quality of life substantially for your mom a lot.
My suggestion  base on your statement above will be immunotherapy since your mother qualified for. The only worry I will have is the pneumonitis side effect caused by this treatment and the grade 3 diarrhea  is of my concern too. But ,overall, it seems the benefit will  outweigh the risk.
The anti-PD1 trial looks promising (please read the link below.)

http://www.nejm.org/doi/full/10.1056/NE … cleMethods

The message I got yesterday from the hepatobiliary symposium about using immunotherapy is encouraging for CCA patients like your mom and me .Of course I am not a doctor but a patient of this disease too.

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: Daughter of Newly Diagnosed 58yo Mom

Hi Aticon,
You and your Mom have had a lot thrown at you in three weeks. My oncologist, at The Cleveland Clinic, also consulted with Dr. Javle at MD Anderson. Tiffany from this group sees Dr. Javle and she said he is wonderful.
Sending prayers
Lisa

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: Daughter of Newly Diagnosed 58yo Mom

Hi all ~ haven't posted since my original, and there are some updates to share about my Mom.

After recovery from neurosurgery to remove the diseased C4 vertebrae (bone/spine has been her primary metastasis from CC), 10 rounds of daily radiation targeted on the C4 region was completed. Side effects were minimal, just some moderate nausea that was easily controlled with Zofran, and a mild sore throat (frontal region of the C4 treatment site).

Then chemo began (Gem/Cis) - suggested regimen was 6 cycles initially, and Mom made it through 5 before electing not to complete the 6th. Side effects included daily, constant nausea which Zofran didn't help with a bit; inability to keep food down resulting in weight loss; no appetite; GI distress; abdominal tenderness; body aches and flu-like symptoms; sleeping difficulties; vein pain which prompted the installation of a collarbone port; numbness in left toes/ball of foot and calf; etc. Nonetheless, her attitude has been steadfastly positive and upbeat -- and remains so.

On Monday, 7/8 she had the first round of follow-up tests (xrays, PET scan, etc. etc.) since diagnosis 3/21, spinal surgery 4/5, radiation 4/25-5/7, and first cycle of Gem/Cis chemo (5/13-6/28). We all had high hopes for improvement, but results conveyed in appointment 7/9 with primary biliary oncologist showed a "mixed bag". Generally, new lesions or an increase in size. Several have decreased in size or stayed the same. Continued mets to spine showed several that need immediate attention (L7, L10, L11, Sacrum, Sternum, Thoracic areas, etc.). One is pressing on the spinal chord. New symptoms include upper back skeletal pain, difficulty rising/getting out of bed, pain when turning/twisting from the waist. Gem/Cis was doing something, but barely.  Suggested switch to either [1] palliative care, or [2] different chemo regimen (FOLFOX). She's a fighter and is not in the mindset of palliative care at this time, so we're switching to FOLFOX and setting up a new chemo regimen. Appointment with radiation oncologist 7/10 included new tattoos/setup to begin new (second) round of radiation today (7/11).  Will include 15 cycles, with simultaneous chemo.

Radiation oncologist is at St. John’s (Santa Monica).  Primary oncologist is at UCLA, who referred her to the Norris Cancer Center at USC since he’s limited only to UCLA programs.  Met with a doctor there this morning to look at her case and see what he thinks.  Will report back.

Thanks for ongoing interest and concern.

Re: Daughter of Newly Diagnosed 58yo Mom

Dear Aticon, I am so sorry that your Mom is having to go through all this and truly hope this new chemo and the radiation will help. She is a real warrior! Thank you for the update although I wish it had been better news. You mentioned she is losing weight, are you using any nutritional drinks like Carnation Instant Breakfast. Vanilla was my Teddy's favorite and I would blend in fruit, usually a banana. One drink can take the place of any meal. Also instead of full meals have her 'graze' on food all day...a bite or 2 here or there. Comfort foods work well. You are an amazing daughter on a journey no one wanted. Please keep us informed and Be Strong!

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: Daughter of Newly Diagnosed 58yo Mom

Hi Aticon,

Thanks for giving us an update on how things have been going for your mum. She sure has been through so much and what a fighter she is! I too wish that you had better news to share with us I so hope that your mums new regimen will work well and hopefully it will be a bit easier on her as well, and I will certainly be keeping everything crossed for the best possible results too. Please let us know how everything goes and you know that we are here for you.

My best wishes to you and your mum,

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: Daughter of Newly Diagnosed 58yo Mom

Hi,
Base on your lasts report, the best treatment is you can joint is the " TIL trial at NIH in WashingtonDC area. And it is free.


http://www.cholangiocarcinoma.org/clinicaltrials.htm

I think your mother had go thru a lot of the chemotherapy, her body might take a bog toll already,unless she still want to fight to the last battle without realizing  their are always limits in everything including medical treatinment. Quality iof life is some sometimes Better than quantity.
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: Daughter of Newly Diagnosed 58yo Mom

Percy, I so agree with you. When we were given the 'final' prognosis for Teddy he was almost 78 and had CC for 5 years. He chose quality over quantity and we never regretted it. He had an aborted Whipple after 4 hours of surgery, then a double e coli infection while healing and 3 weeks later the real deal. He had complications while healing and after flying back to Phoenix from Milwaukee where everything occurred, he went in to rehab for a month because of a leak from the surgery. Then it was a constant change of bile tubes for 2 years, then the CC recurred and bent his right ureter and he had a stent for that and he had radiation and Cyber Knife and on and on. He made his own choices and I felt he could not have done more. He had a ton of faith and a gazillion tons of attitude and zero complaints the whole 5 years. I agree that it is very important to know when one has done the best they can it is up to the individual to decide and conquer. You know I always send my love to you, you are some kind of special man!

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: Daughter of Newly Diagnosed 58yo Mom

Hi, Lainy,

I can tell my body is not as strong and  cannot tolerate the medicine as when I was young.
I just hope that during my life time ,things can improve such that at least we ,as chemotherapy patient can suffer less. Thru better treatment.
I will honestly say, if coming down to the last choice, I will sure I will open a Chinese restaurant to compete with you Ted's Italy ones.
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: Daughter of Newly Diagnosed 58yo Mom

Percy, Competition??? NEVER, not with you! And anyway if the Chinese restaurants were not open Christmas Eve where would all the Jewish people go to eat???? You really cracked me up on this one!

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: Daughter of Newly Diagnosed 58yo Mom

Funny, Percy! I love Chinese food! But you'll have to compete with the Mexican restaurant my Dad just opened..he makes a mean chile verde!

Willow

17 (edited by PCL1029 Mon, 15 Jul 2013 10:33:48)

Re: Daughter of Newly Diagnosed 58yo Mom

Hi, ladies,
Since I feel a bit stronger today( energy wise). And I love hot Mexican food.
Ted's Italy restaurant is of course 4 stars, but Chinese restaurants are famous in cutting price and give out free egg rolls which just cause a dime to make.
  If not enough, I will add a couple fortune cookies , how' s that.
Thanks for praying for me. And give me big hugs.
It was tough the last few days, lack of energy ,a bit shortness of breath,but no pain and no N/V.

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: Daughter of Newly Diagnosed 58yo Mom

Percy, I am so happy you are feeling a little better. Don't rush anything. I LOVE Chinese Food and like I said NO COMPITITION between you and Teddy. You will do very well because there is no where else to eat on Christmas Eve!!!!  Teddy just told me he added his famous Calamari Marinara and Octopus Salad to his menu. UGH to me but his Grandkids LOVE it! They all have his recipes. Take it slow and easy and feel better.

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: Daughter of Newly Diagnosed 58yo Mom

Hi,
Thanks Lainy.
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: Daughter of Newly Diagnosed 58yo Mom

FOLFOX regimen is going ok. She's tolerating it MUCH better than Gem/Cis. Have been told FOLFOX is the new standard of treatment for CC. Far fewer side effects. Radiation is going ok too - just some esophageal soreness from the pass-thru on the sternum treatment. Continued abdominal distension which looks odd pretty much continuously. Food cravings are limited just to comfort foods, soup mostly. There was a chance this radiation round could be reduced from 15 treatments to 10, but new X-rays taken last week prompted the full 15 to be taken after all.

The USC doctor asked for blood tests showing tumor markers, which hadn't been ordered since original diagnosis in late March. At that time, tumor markers were 248. Bloodwork last week showed reduced tumor markers down to 134 so clearly something has been working, though its unclear if that's a result of the neurosurgery or an indicator of the chemo efficacy.

Quality of life is pretty much as normal right now; days are just peppered with dr. and treatment appointments. No real prompt to stop aggressively pursuing treatment at this point. She still has strength, hope, optimism and a great attitude. As do we.

Re: Daughter of Newly Diagnosed 58yo Mom

Aticon,
There have been people who are stage IV and have still ended up with transplants so don't lose hope.  I too, go to MD Anderson but have a different Dr. than Javle but am currently trying to switch to him.  I feel like he would be way more aggressive in treatment than the one I have.  My current Dr. Is just doing the whole palliative care right now and that's not good enough for me.  I have a son to raise.  Y'all are in my payers.  Take care.

Re: Daughter of Newly Diagnosed 58yo Mom

Action,
I hope all the best for your mother as I got the same situation with my mother , she is 58 years old too and she never visited the hospital before except for giving birth to 6 children until mid of past June where we took her to ER thinking the yellow skin is caused by gallstones.
Same to you I was shocked for the diagnosis and then about limited options we got although for the past two decades I have heard a lot about progress in the treatment of cancer but it seems companies keep concentrating on those with higher percentage of patients.
I keep praying to god to keep my mom alive until some miracle could happen and some new development in the treatment of this disease could evolve for the best of humanity and you should not loose the hope because compared to my mom who do not have the opportunity to join clinical trials in small country like Jordan you could do that in the states.Y'all are in my payers.  Take care.

Re: Daughter of Newly Diagnosed 58yo Mom

Hi everyone -- just thought I'd give another update on my mom's condition, since I haven't posted in awhile.

Chemo regimen of FOLFOX continues.  She tolerates it reasonably well, but it makes her very cold and very fatigued.  A walk around the block with the dog zaps all her energy reserves.  With every other chemo infusion she requires a 10% strength reduction because of low hemoglobin, and she has had 1 blood transfusion due to low levels.  My sister (blood type match) has begun banking blood.  Mom has begun losing her hair; not in chunks, but it's very thin now in comparison to her norm.  Her doctor gave her a prescription for a human hair wig (couple thousand dollars! yikes!).  I'm planning to get it for her birthday.  Due to almost constant digestive distress, she's on a completely vegan and gluten free diet now (no meat, dairy, soy, or gluten) and she juices regularly.  Weight appears low to me (she was already very thin to begin with), but does not appear visually jaundiced or yellow, so that's reassuring. 

At this time the most apparent "symptom" is really her ever-increasing abdomen.  Fearing this was ascites (fluid build-up) which would need to be drained, and which would be symptomatic of the early stages of organ failure, she received scans to determine how much fluid existed.  These scans showed that there's virtually *no* fluid, but it's instead her extrahepatic tumor that has grown to 10cm in diameter (larger than an adult fist; about the side of a grapefruit) and is causing her belly to protrude.  On her already slight frame, this makes her appear about 4 months pregnant.  About a month ago, the weight of the tumor caused her stomach to collapse.  As a result, she no longer feels hunger pangs, and needs to remember to eat at traditional times.  She also gets full very quickly since her stomach is so compressed by the tumor.

So the question became, what to do about this tumor?  It's huge and growing.  Her interventional radiologist suggested a procedure called Y90.  This is apparently a liver cancer therapy that consists of millions of small glass beads containing radioactive yttrium-90 being injected through a catheter into sites that are immediately local to tumor growth.  The beads emit localized radiation, which is more effective and more targeted than low-dose external radiation therapy.  The beads kill the tumor tissue, while preserving the healthy liver tissue.  It's pretty genius, really.

The last couple of months have been spent battling with the insurance company over coverage denials for the essential Y-90 treatment that was recommended by her medical team (interventional radiologists, nuclear medicine, primary oncologist, etc.).  Talk about stress!  At long last (and on the 3rd and final appeal attempt!) she was finally approved for the Y90 treatment (hooray!).  Preparation required her to be off chemo for at least 4 weeks leading up to the treatment date.  During this time she had various tests and scans to "map" the blood vessel pathway which the millions of small glass beads containing radioactive yttrium-90 would be injected into.  Blood vessels leading to her pancreas and stomach were cauterized to prevent the beads from traveling there.  A "dress rehearsal" procedure was done 2 weeks ago where, after many hours of blood vessel mapping, beads containing contrasting dye were injected along the pre-determined pathways and deposited near the intended tumor sites.  She was then scanned to see if the beads were positioned properly and where they needed to be.  Everything looked correct, so the "real" procedure was scheduled for 11/14 (last Thursday).  It was a success!  The medical team advised that the procedure went "text book" well, and they positioned the radioactive beads exactly where they intended to.  This is an outpatient procedure, and pain was managed with Versed.  Soreness from the catheterization (entry is up through the main artery in the leg/groin area) lasts for about 2 weeks, so she's still quite sore, but has already observed belly size reduction due to the necrosis of the tumor tissue.  This is of course wonderful news; the treatment appears to be working so far.  The tumor tissue is supposed to continue dying off over the next few months, and she'll be scheduled for resection surgery around February.  (She was determined to be unresectable a few months ago, so this is truly meaningful progress).

Another update: the results of her genetic sequencing report indicate that she has NO abnormalities among the current 'known' mutation pathways.  However, she's still going to be tested for Lynch Syndrome to rule out a genetic predisposition to colorectal and/or GI cancers, given her father's diagnosis of colon cancer at age 57 which brought about his death at age 59 1/2 (his had mets to liver and lung).  Will advise more on that once the results are in.

I held a fundraiser at work and we raised $2,500 for The Cholangiocarcinoma Foundation, which was great for bringing awareness to bile duct cancer.  The mother of one of my colleagues was also recently diagnosed with this very disease, which certainly seems to suggest that incidences are rising.

My mother's attitude remains resolute, happy, positive, upbeat, grateful, thankful, calm, and hopeful.  If attitude is everything, she's nailing it!

Will post again once I have more to say; this about brings everything current with my family's situation.

Hang in there, everyone!

Re: Daughter of Newly Diagnosed 58yo Mom

Dear Aticon I am over the moon and then some with how everything has been going now for your Mom. What absolutely great news. When you look for a wig be sure to check out some major Cancer Hospitals as many have Gift Shoppes for Cancer Patients and have just adorable wigs. I bought one a year ago from a professional place and never likes it. Cost me 300.00. Finally gave it away and went to MDA here and got an adorable wig for 60.00. How wonderful of you to have a Fundraiser and 2,500.00 is not to be sneezed at. We sure can use that, thank you so much. I would say the way things are going your Mom is going to have a wonderful Holiday season. I just need to give Mom a huge YIPPEE!

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: Daughter of Newly Diagnosed 58yo Mom

Dear Aticon,

So happy to hear about the outcome of your mother's treatment.  While it sounds like she had her fair share of discomfort (as the doctors call it!), the outcome sounds so positive! Congrats!!  keep the good news coming.

-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.