Topic: New to this Nasty Disease

Wow, am I fortunate to find such a sight.  Mom, 77 years young, was diagnosed 10/17/13, Stage 3/4 - 25mm marker at the bifurcation of the liver bile duct with a PLBN tumor in the pancreatic duct.  From what I am reading she  doesn't appear to be as advanced as the majority of you.  They gave us an extremely grim prognosis, but after reading your stories of strength amoung yourselves and/or your family members you have given me some fresh air to breathe in, thank you.  She had to have a stent placed which became occluded immediately so a Y metal mesh stent had to replace it.  She will start her 3rd round of Gemzar/Cisplatin next week and then repeat scans soon after.  Her blood work is looking better as we go along.  I was most concerned about her ALKP being elevated for so long, but after reading DukeNukems post, I'm feeling ok about it.  Her bilirubin had been extremely high which has affected her short term memory, they say that that is permanent.  We take it day by day because each day is truly a gift.

She is Doctoring in the Mayo System out of Rochester, MN.  We live in Austin, MN - which is 40 minutes from Rochester - fortunately the Doctors come to Austin, she has a great team.  They have been extremely accessible and informative.

Re: New to this Nasty Disease

Welcome, TIvers to our fantastic family we are glad to have you but sorry you had to find us. You have done all the right things as Mayo Rochester is one of the best. GEM/CIS seems to be the cocktail of choice to start with. She is in good hands. I am not sure anyone on here has had shortness of memory, at least I cannot recall (am not being funny).  I know our brilliant family will be coming aboard soon to help. It does sound like she does have a FAB team. Until more respond here I want to wish you luck and also to have a Healthier and Happy New Year and welcome, you have come to the right place.

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: New to this Nasty Disease

Hi,

You are in good hands at Mayo Clinic.

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: New to this Nasty Disease

Tivers....I would like to follow Lainy and Percy and welcome you to our site.  It is best to take this disease one day at a time and it seems that this is what you are doing already.  I wish for the current treatment to show promising results for your Mom.
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: New to this Nasty Disease

I'd like to add my welcome to the others and say I am sorry you had a reason to come to this site. 

I went to the Mayo in Rochester, MN, for a 3rd opinion a few years ago and say Dr. Grothy, who was very nice.  Your Mom could not be at a better place for treatment.

Best wishes
-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: New to this Nasty Disease

Yes, this is a good site to help you through. Sounds like you've got your Mom at a great place for treatment. Marion's advice to take this "one day at a time" is good because it's too hard to predict and can be a roller coaster. These seem like canned sayings but I really understand now why people with serious conditions use them! Best to your dear mother.
Willow

Willow

7 (edited by TIvers Sat, 28 Dec 2013 13:19:05)

Re: New to this Nasty Disease

My mom is my best friend.  We have been fortunate to be able to travel together and spend quality time over the years, so this is not going to be an easy adventure for me.

I don't know how many other Clinics/Hospitals offer this, but Mayo Clinic has an App that I've downloaded to my phone.  I am able to view my moms records, in ALL areas, right in the palm of my hand.  It has been extremely helpful for me to be able to get results for within 20 minutes of a blood draw.  Obviously I am on her records as an information release contact.  It might be helpful for other people to ask their facilities if they offer such a service.

Her is her history:  1973 perforated malignant colon polyp, removed 12 inches of colon, mesenteric tissue and affected lymph nodes, no follow up treatment.

1979 removed a contained ovarian cyst, malignant cells observed, no follow up treatment.

She has had routine colonoscopies every 3-5 years since 1973.  Only once has she had a clean-no polyps- on her colonoscopy.

When we met with Dr.  Law to get her results from the first ERCP, he told us that their findings were Cholangiocarcinoma. This type of cancer is a metastatic type cancer usually stemming from breast, lung(?) and colon.  Another Dr. We met with said that since it has been this long and the colon cancer back in "73" was a T1 lesion, he didn't feel that this is where it came from.  Our family history has very little cancer within it.

In looking at her pathology reports from past years I came across a report for her 2/2008 colonoscopy.  In the report it states that there was a polyp removed and pathology finding were positive for Tubular Adenoma.  I asked her ONC if this was substantial and I was told no, that they are two different types of adenoma cells.  I can understand this to a point, I do have some training in cell morphology.  I come to the conclusion that "Things happen for a reason", I have not been able to figure this reasoning out yet, probably never will.  All of this, sounds like in everyone's situation, happens so fast and there are no real big flags that anyone can put up, except for the loss of weight, nausea and decrease in appetite prior to turning jaundice and itching.  Mom turned yellow and icteric with in a 24 hour time period. 

All I can say is that we pray a lot, and put our trust in God and her team of Specialists from here on out.  She is a fighter and continues to do so.  I gave her the website address yesterday, she's not sure yet if she wants to read what other people have to say - quite yet.  I told her that the stories i have read have given me HOPE and encouragement about her condition.  She said yesterday as many of you have that "no one has a specific expiration date".  If that doesn't tell you she's ready to fight, nothing will.  Thank you all for your kind words and support.

Theresa   

When we sat down with h

Re: New to this Nasty Disease

Theresa, your Mom sounds like a true fighter. Thanks for the information about the APP. You are right this is not an adventure for the weak or faint of heart! We compare CC to a roller coaster ride, so many ups and downs. I have never heard that CC stems from breast, lung or colon. I thought it was mostly  from the liver or bile ducts which include the gall bladder and duodenum. I know it can met to lung, colon, bones etc. Yes, some things happen for a reason but like an ONC once said its a toss of the dice with CC. We do not yet know what is causing it or why. So, we take each day at a time and get through it the best we can. You never know how strong you are until "strong" is the only choice you have!

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: New to this Nasty Disease

Theresa....I have been told that some people have a susceptibility for cancer but as of now we don't have the answer as to why this occurs.  Cholangiocarcioma is rare and no early detection methods are in place; that is why you see the majority of cases diagnosed with late stage disease.  Rare cancers don't receive the attention such as the more common cancers with the hope that research for those cancers will lead to answers for us as well.  Well, it is my opinion that we have not benefitted very much in re: to our disease.  Anyway, dear Theresa, I do believe, as the others have mentioned, to search out physicians "very" familiar with this cancer is one of the most important steps to take. 
Hugs to you
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: New to this Nasty Disease

Theresa, welcome to our family. It's a tough road, but this is the best group of people! When it comes to information, answers, options, I think this is the best place to hear about most everything, from medical to patients point of views. We can also get silly... It helps with the stress sometimes.
It's great that you have so much info at your fingertips. Sloan Kettering has all blood work online, but as of April hadn't gotten other records online yet. It was supposed to happen.
As far as attention to cc: I hate to say it, but thankfully there's been a few famous people diagnosed lately... Maybe that will help.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: New to this Nasty Disease

Well, tomorrow we get the results of her Scan done this morning.  Please keep "Alice" in your prayers for healing.  I will check in tomorrow afternoon with news.

Re: New to this Nasty Disease

Will do Theresa.  Good thoughts and prayers for Alice coming your way.  Will be waiting to hear about the results and hoping for the best.

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: New to this Nasty Disease

Absolutely, dear Theresa.   A tidal wave of good wishes is heading your way.
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: New to this Nasty Disease

We have encouraging news, the tumor is shrinking with no new lesions noted.  Her blood work came back "fabulous" as her Doctor put it.  The Doctor will now be consulting with her GI/Cholangiocarcinoma specialist on whether or not she will be a candidate for localized radiation.  I asked what the new measurement was on the tumor and I was told that it's not as visible or dense as it was before and therefore could not get a good measurement on it, but that it was considerably smaller.  She is having some neuropathy of the toes and finger tips, so they are lowering her Cysplatin a bit.  I'm still on the cautious side with the decisions made, but I feel I need to be an advocate for her, to an extent, in the end it is her decision as far as how much she wants to go thru.  I feel she'll keep fighting-with prayer and treatments- until she can't.  Thank you all again for your kind words and prayers.  I'll be keeping you informed through out this journey.

Theresa

Re: New to this Nasty Disease

Theresa,  That all does sound encouraging.  Hoping it will continue.  smile

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: New to this Nasty Disease

Fabulous blood work is great news. Shrinkage is great news. Sounds like she is just behind me time wise on looking at localized radiation to kill of the tumor.  We'll have to compare notes.

Best,

Lisa

Impatient patient.

Re: New to this Nasty Disease

Theresa....fantastic news.  Can't wait to hear the updates.
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: New to this Nasty Disease

Theresa, YIPPEE on the fantastic news. The only thing that would please us more is more good news the next round! This is just wonderful.

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: New to this Nasty Disease

Mom is on her 8th treatment this week and handling Chemo well.  She has labs, radiation therapy consultation and evaluation appointments set up in Rochester with her specialist on February 17.  I'm sure there are questions I need to ask but I have no idea what I should ask.  I know treatments will be daily for 5 weeks and will take approximately 10 minutes once set up.  I should probably ask what technique they will use like "cyberknife". Could you all help me in what I need to ask?  Her overall health and outlook on all of this is positive, plus she has immense faith.  She continues to gain weight and is adding more daily tasks weekly.  She is also a childs advocate in the county, which has kept her mind sharp and her drive strong.  She has a few cases coming up that will finalized with forever homes - adoptions - which gives her the utmost satisfaction in difficult cases, this is where she gets her will and drive.  So any information or questions I need to address would be greatly appreciated.  I keep all of you in my prayers, you have given me such strength.

With Love
Theresa

Re: New to this Nasty Disease

Theresa....such great news.  It would help to know beforehand what type of radiation will be used for your Mom.  I suspect it to be IMRT - intensity-modulated radiation therapy.  It is a type of 3-dimensional radiation therapy that uses computer-generated images to show the size and shape of the tumor. Thin beams of radiation of different intensities are aimed at the tumor from many angles. This type of radiation therapy reduces the damage to healthy tissue near the tumor.

Your Mom might know the exact type of radiation or her physician's office may know. 

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: New to this Nasty Disease

If it is IMRT, as Marions noted, that is different than cyberknife. If you go to http://www.radiologyinfo.org/mobile/en/ … m?pg=imrt, there is a good explanation, including a video. As my doctor explained, he is recommending IMRT for me (mine actually starts 2/17) because it is not as precise as cyberknife. These cc tumors have 'tentacles' for lack if a better word, so they want to make sure they don't miss parts of it.  Or so I'm told.

Impatient patient.

Re: New to this Nasty Disease

Thank you both for your input, gives me a place to start.  They've only been saying "localized radiation", not what type yet, and Dr. Pitot and the Radiation Specialist will decide which will be most beneficial, I'm sure.  We probably won't find out until 2/17/14 while we are there.  I will definitely look at this website so that I can educate myself before this meeting.  Lisa, I talk to mom about you a lot just because you both are so close in the time frame.  I had told her, because she asked how old you were, that I thought you somewhere between 45 - 55 just by in how you write.  I was not to far off, was I?  56 I believe is what I saw.  I will also look on this website in the treatment area to see if there is any other info that may be beneficial.  The way this IMRT sounds, it's sounds almost foolproof, nothing is though.  As we are at her meetings on the 17th, I will be thinking of you as you proceed.

Take care & I'll be checking in again,
Theresa

Re: New to this Nasty Disease

Hi, Theresa,

I turned 56 in August, although I like that you think I write "younger.". I thought of 56 as young. And, I thought of myself as super fit. In fact, the week before I was diagnosed, I did a 100k charity bike ride in hilly Nashville.  In hindsight, I complained a lot about how awful the food was all weekend at the hotel and I'm guessing now it really wasn't that bad and that it was the beginning of my tumor making itself known. The jaundice came a few days later and progressed fast.


In reading back through your earlier posts, How high was your mom's bilirubin?  Has it come down?  Mine was high to start and I looked like a waxy banana (according to one doctor), but it has dropped constantly since I got my PTC drains and so far, knock on wood, is well within normal range (0.3).

Impatient patient.

Re: New to this Nasty Disease

56 is young as I am 49 and my husband is 56 as well.  Moms appetite was not good either, she said things didn't taste good and that her coffee tasted bitter.  I noticed that she had a different scent, body wise and halitosis.  Her Bilirubin was at a 21 high.  Since her 2nd ERCP and two metal stints placed, her Bilirubin is down to 0.6 as of last Thursday.  Her color was a golden yellow, her house is neutral-brown colors so her color was not noticed until she stepped outside.  Sounds like you have a very knowledgeable team working for you.  They did mention drain placements to mom if the stints didn't work, now I have a resource to go to if need be.  I think moms overall exercise, healthy diet and healthy living has helped in this journey so far.  She dropped 15# which put her at 108#.  Not an ounce of fat on her in the beginning and now nothing to spare, but like I mentioned she has been gaining.  I've been thinking of doing a run of some sort myself as my husband and i are very active, work wise and fitness wise.

25 (edited by LisaS Tue, 28 Jan 2014 15:53:23)

Re: New to this Nasty Disease

I dropped 20#'s early on. My low was 113. At my normal 130-135, I had muscles. I definitely had cyclist legs (and was darn proud of them).  I am working on getting them back.

God, I hope I don't smell bad. I know the dang external drain bags stink to high heaven, but I've been able to cap off my drains and not wear the bags other than rare circumstances.

I'm glad your mom is gaining. I've put on nearly 10 of the 20 I lost, but it's taken several months and I had to resort to eating stuff I normally wouldn't touch (another Girl Scout cookie anyone). I was just reading the threads on nutrition and I was having trouble with weight (or desire) eating as cleanly as I used to do regularly.  In fact, my doctors (and even the dietitician at Baylor) have told me to eat anything that tastes good at this point - that I have a "get out of jail" card, so to speak.  My radiation oncologist said ...and I quote "I don't care if you come in here everyday with a Big Mac and a beer" he just wants me to add at least 5 lbs before I start radiation and hopes I'll be mad at him because "my pants don't fit." 

I'm trying to come up with some run/walk/ride idea as well. Why should the big cancers get all the attention?  And have all the fun?


Ps, yes, if your mom needs drains, ask away.

Impatient patient.