1 (edited by LisaS Tue, 08 Oct 2013 18:18:44)

Topic: On the whole, I've had better weeks

While I've participated in lots of forums over the years - photography and health/fitness come to mind, this is one I never thought I'd be participating in.  Frankly, before this past week, I'd never heard of cholangiocarcinoma.

So, I just turned 56 last month.  I would have said I was in the best shape of my life.  I just got back from Nashville, TN to do a 100k charity bike ride.  I was feeling pretty great.  I went to a wedding the following Friday and saw my beloved college roommate, who mentioned my eyes looked yellow.  I came back, called my internist last Monday, said I thought I should get in that day and I did.  Since then, life has been a blur of alphabet numbers of tests and meeting new doctors.

I've had a blood work, a CT scan with contrast, an MRI/MRCP, a colonoscopy (had a routine screening one in February), an edoscopy, an endoscopic ultrasound, a meeting with a medical oncologist and two more tests scheduled tomorrow and a meeting with a surgical oncologist.

It's cholangiocarcinoma, but we're still trying to figure out staging, size, resectability, treatment options, etc., etc., etc. 

I don't mind saying I am scared.  I'm used to being very active, I have small grandchildren I want to see grow up.  I am lucky that other than, pardon my language, F&#(@&@^(-in cancer I feel fine.  I don't have pain, but I'm very anxious. 

I'm trying to learn what I can.  I want to make the most informed decisions I can.  I want to read the stories of hope.  I want to have a life ... a good life ... I'm sure every single one here can say the same. 

I am very fortunate to live, literally, down the street from a very good hospital, but if there is a better place, I want to know that. 

I'm trying to figure out how to break this to my elderly parents and my son.  My parents lost my little brother (their youngest son) two years ago, at 48, to something else completely unexpected.  I am hoping to know more by end of the week to tell them. 

Anyway, just wanted to say hi.  I was really glad to see a support forum, because this sure feels pretty alone right now.

Impatient patient.

Re: On the whole, I've had better weeks

Hi Lisa
Sorry you joined this site as well:). Best of luck with your diagnosis and am praying it is localized and resectable for you!
BJ

Re: On the whole, I've had better weeks

Thank you.


In the meantime, it is just me, or is the itching driving anyone else nuts???????

Impatient patient.

Re: On the whole, I've had better weeks

I also had the itchies that drove me nuts!   Cholestyramine (Questran) helped a little. Works by binding to the bilirubin and preventing it from depositing in your skin.  Benadryl also works for some.
Bj

Re: On the whole, I've had better weeks

Welcome to the club but sorry you had to find us.  Please keep us posted on your treatment.

Take care,

Susie

Re: On the whole, I've had better weeks

Well, Lisa, welcome to the family. Keep us posted on all the particulars with your CC. The itching can be expected due to the elevated bilirubin levels. Are you jaundiced too? Quite often those go hand in hand. My husband was lucky and while he looked like someone colored him with a yellow highlighter, he never got the itching even when his bilirubin levels were off the hook before his drain was placed.

We are in the Seattle area so we are getting treatment there with a wonderful surgeon and oncologist. Which center are you at? There are some really good ones out there and if we weren't so happy here we would be doing some traveling.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: On the whole, I've had better weeks

Dear Lisa, welcome to the best little club in the world that no one wishes to join. When my husband was DX he was totally Jaundice and the ONC said, "You are really, really yellow". Not knowing the gravity about what was to come I said, "Teddy , you know I don't like you in yellow". We found a wonderful cream over the counter at CVS & Walgreens called Sarna. It is a miracle cream and took the itch right away. Cool showers helped as did ice bags too. With that said, of course you are scared, who ever heard of CC, can't even pronounce it let alone spell it! I hope they come up with a DX and treatment plan quickly so you can feel more normal again and get rid of the itch! What hospital will you be going to for treatment?  One of the very best is MD Anderson in Houston. I promise you that once a DX is official and a treatment plan is put forward your fright will turn to fight. You have come to the right place for support as we are one close knit family! Questions? Ask away. Need to vent? We have broad shoulders. Looking forward to hear more from you. P.S. Try to read up on CC as knowledge is our best weapon to fight this crazy Cancer. Also use our search engine at the top by typing in any word and lots of posts will appear on that subject. There, I think I am done for now. I tend to get long winded on the key board! P.P.S.S. Sorry, wanted to say my Sis in Law lives in Ft. Worth.

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: On the whole, I've had better weeks

Thank you all.  I am a lawyer by training (and nearly 30 years of doing that), so gathering information is embedded in me (and my husband is also a lawyer, so we might be slightly obsessive over getting info, although not a bad thing in this case). 

I live, literally, within 5 minutes of Baylor Hospital and the new Sammons Cancer Center.  I was talking to a friend who is an RN in a smaller city in Washington State and she was stunned at how fast all this has happened, so I realize I'm in a good place and my primary care physician (internist), GYN, gastrointerologist (for routine colon screens) all said my medical oncologist and this new surgical oncologist are both 'da bomb.' 

It's a lot to absorb, though.


Yes, the jaundice was my symptom (well, the itching, but I didn't realize that).  Thank God my college roommate noticed and said my eyes looked yellow.  I laugh and say that I look like my toddler grandson was let loose with the magic markers (or at least the yellow one) and scribbled on my eyeballs.

Well, I'm gonna try to get some sleep.  I had a really hard time sleeping last week, but I have not had any qualms about accepting my internist's offer to give me a Rx for something to help me sleep. 

Must be at Baylor early for this body scan.


During the past two years, I have often referred to the lost sibling club as the sucky club no one wants to be a member of, but I guess that's true here too.  Still, I believe there is strength in numbers and knowledge and, since this is so rare, if we aren't on the forefront of making noise about it, who will be?

G'nite,

Lisa

Impatient patient.

Re: On the whole, I've had better weeks

Lisa just want to add one thing. You will want to know if your ONC and the Hospital you end up for treatment at are well up on CC and have treated more than a few CC patients. Very important that they have the experience! Most Cancer Centers like Cancer Centers of America or Sammons may not have treated a lot of CC. Night!

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: On the whole, I've had better weeks

Lisa....I too would like to welcome you to the club mentioned.  None of us want to be here, but given the circumstances, we are happy to have found each other.

Lisa, Baylor sees a substantial amount of CC patients hence, I expect you to receive an accurate diagnoses.  The physicians work closely with MD Anderson therefore; this represents an additional plus for you.

Make sure to retain copies of everything and anything pertaining to your diagnoses including; physicians reports, blood tests, Scan results, etc.  Good luck and please keep us posted.  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: On the whole, I've had better weeks

Hi,
For more personalized treatment options in the future, please ask if they ( the medical oncology) can use your tumor tissue to get a '" next-generation gene sequence" done for you for future specific treatment plans .
This was recommended to me by 2 medical oncologists, and it seems to be the trend for the top institutions which are in the forefront of treating cancers.
I am a patient of ICCA for 54 months since Dx.
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: On the whole, I've had better weeks

Lisa,
Let me add my hello, too. It's a bad way to meet people, but you won't find a better group! There is so much support and help here. And I agree, it's a "sucky club" but I have met some great people! And strong!
I am amazed at how quickly you got all this done! You did in one week what took 1-1/2 months for me in Feb-March 2011. No wonder your head is spinning.
Unfortunately, we do call this a roller coaster ride. It has many ups and downs. I tried to handle it, but eventually looked to medicine to help with nerves and depression. I have since taken myself off those drugs, but I don't know what I would have done without my Xanax!
It sounds like you have a great team working with you, and that is a very important thing. I wish you well with the next few days especially, and will send prayers for "operable".

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: On the whole, I've had better weeks

Hi Lisa,

Welcome to the site. Sorry that you had to find us all here and sorry to hear what you are going through as well. But glad that you've joined in with us all as you are so in the right place for support and help, and you'll get loads of each from everyone here. My dad's first symptoms were also the jaundice and the yellowing of his eyes and yes, the itching drove him nuts as well. He had a metal stent fitted and that cleared up his jaundice quickly along with the itching too.

You say that you and your husband may be slightly obsessive about getting info re everything to do with CC, good! The better informed you are the better the decisions you will make when it comes to treatments and everything to do with all of this so please learn as much as you can. I know that everything happens so fast at first and yes, your head will be spinning with it all coming at you from all directions. Ours was too after my dads diagnosis and that took over 3 weeks to get the full diagnosis.

I hope that you keep coming back here. Please stay in touch and let us know how things go for you. We are all here for you and will help as best as we can. We know what you are going through and we care.

My best wishes to you,

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: On the whole, I've had better weeks

Lisa, and to copy others, "welcome and sorry you had to find us". I am a CC survivor, I am almost 41/2 years cancer free. I have an amazing story to share and keep it posted at www.catherinedunnagan.com under the telegraph link. There is HOPE.
I also like most showed no symptoms, and only went to doctor because my neighbor made a comment about all my bruises and sores on my legs. I had been so itchy, but it was summer and we own a lawn care business and thought it was allergies!!! I also like you, ended up with a doctor who did my first ERCP procedure and with in 5 minutes had a diagnose and game plan, my only HOPE was a transplant and once again one of the 2 place that had this trial was 20 minutes from my home, Barnes-Jewish Hospital in St. Louis MO. under Dr. William Chapman care. Thank God for neighbors and college roommates for saving our life!!
The most pro-active thing you can do is have the best most aggressive doctor, who knows all the CC treatment options. Make sure transplant is discussed and considered and option or not, by a doctor who believes it is. Many doctors have reservations about it. Do not accept a diagnose you are not comfortable with, get second and third opinions if necessary. I personally know my hero, Dr. Chapman has changed several people's diagnose for the better. Our cancer is very rare and needs the best doctors. This site is a blessing and well of information for getting through this "nightmare"!!!
Call (618-567-3247) or email if I can help.
Lots of prayers and HOPE-Cathy

Re: On the whole, I've had better weeks

Dear Lisa,

I'd like to give you a message of hope-  we are still relatively new to all of this, so I don't know if I'm out of line offering, but today is a good day- so I'll risk it.

Our daughter, 29 years old, had some jaundice and itching (yes, maddening) and her doctor ordered an MRI on January 2.  She had a biopsy on January 7, was diagnosed with cholangiocarcinoma on January 9, and we went to Sloan for a second opinion where she had a resection on January 16.  They decided that because she is so young she would follow with 4 months of CIS/GEM. The whole experience was such a whirlwind that at times I literally felt dizzy. We learned a language we never wanted to learn and had an experience we wouldn't wish on anyone, but we met extraordinary people along the way.  Please seek out the very best hospital you can- people who are very experienced with this cancer.

As for your parents- having our  be daughter be so sick was terrible beyond description.  For them to go through this a second time- unimaginable. I hope you can find the right words, although I'm not sure they exist.

We don't know what the future holds, but our beautiful, strong, brave resilient daughter is back home now with her wonderful husband of two years and their puppy.  I hope her story helps you to feel optimistic as you navigate your way through this process.

Best wishes,

January

Re: On the whole, I've had better weeks

Hi Lisa:

I am so sorry to hear about your diagnosis, but am pleased that your team of physicians seem to be moving so quickly with your case. I spent too much time with my community doctors at the beginning, which slowed my diagnosis. Once I got to an academic medical center with knowledge of the disease things moved very quickly. It sounds like you're in a good place.

The itching was my first symptom and, for me, the worst. They may do an ERCP on you and place a stent, which should give you good relief. For various reasons, that was only partially successful for me, and I've had somewhat elevated bilirubin during the entire two years I've been fighting this cancer. Two different physicians tried the usual treatments of cholestyramine and antihistamines with no real benefit. My hepatologist at USC put me on Rifampin. It is considered a second-line treatment for pruritis in these cases, but even so few physicians seem to know about it. He has a number of end-stage liver disease patients on it successfully, and it has been 100% effective for me. No itching! Anyway, if itching continues to be a problem, it's something you could ask about.

Best wishes to you as you proceed toward treatment. You will find great wisdom and support here.

Mark

Re: On the whole, I've had better weeks

Thank you all for the replies!  I had a friend tell me last year, while she was battling a brain tumor, that in times of tragedy, special people come into your life for a reason.  That is true. 

I expect to be an active participant in this forum.


I had two tests this morning - a chest/lung test of some sort (got to find out exactly what) and a whole body scan where they injected some radioactive dye. 

I meet this afternoon with the surgical oncologist.  My medical oncologist (I went by to get his report to read, myself, before meeting the surgeon) was less than encouraging about resection/transplant.  But, we'll see.  My surgical oncologist is the surgical director of the pancreas and living donor liver transplant groups at Baylor.  I've very fortunate to live where I live, as this is (I think I mentioned) literally down the street from me.  Here's his bio link:  http://www.baylortransplant.com/surgeons/goldstein.html

So, I'm still waiting ... but expecting more pieces of this puzzle to fall into place quickly.

Lisa

Impatient patient.

Re: On the whole, I've had better weeks

Lisa you have the security and comfort of knowing you are at a great Hospital with great ONCs. AND you have a great attitude.  We are so proud of this site as we have the most caring and loving family the world over. When my Teddy was DX August of 2005 the people on this site got me through his 5 1/2 years and as of today I am totally addicted and just can't stay away. Actually just over a week ago I announced I needed to tend to some of my own problems and could be off weeks/at least a month. Well, that lasted 5 days and I was back on. We love it when our members pitch in as somewhere someone has advice to give to help a family member. I am anxious to hear what the DOCs say.

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: On the whole, I've had better weeks

Just a quick note to say that the meeting with Dr. Goldstein was not the news we hoped.  I liked him - he is a straight shooter, but my tumor is not resectible and is just over the size to be eligible for transplant.  He has some options, but they don't seem all that great to me.  I'm trying to calm myself down to go through the notes, figure out if I think I should get a second opinion (they want to get me in Friday or Monday for a something-or-other-procedure -- sorry my brain is working at half speed right now).  So, I have to make a decision fast.  Trying to gather the strength to go tell my parents the news, which I've held back until we had a plan.  This is going to be hard.  I'm the one who had to go wake them up 2.5 years ago to tell them my little brother had died.

Ugh.



Lisa

Impatient patient.

Re: On the whole, I've had better weeks

Oh, Lisa, I'm sorry. I so wished for better news! And I don't envy you for your upcoming conversation.
As for your options: there are so many and more every day. Keep strong and you WILL get through this!

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: On the whole, I've had better weeks

Lisa,

Lots of support headed your way.  Best wishes with your treatment.

Susie

Re: On the whole, I've had better weeks

Lisa, the important thing is there are options. If the tumor is just over the size why can't they use Chemo to bring it down or can you not have chemo if you want a transplant. Lisa, please think about another opinion, this is too important not to. Personally I would take a jaunt to MDA in Houston. About telling your Parents they may already think something is going on and to bring it out will give you all a relief/release. Wishing you the very best. Sending tons of hugs!

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: On the whole, I've had better weeks

Lisa -
Second opinions are always the best thing and I would second having MDA do that. I have heard nothing but good about them since joining this site. And just because they say no right now does not mean it will always be no. I have always said that there are new things on the horizon constantly with medicine and sometimes the answer is just over that horizon for you. You never know.
Hang in there and keep us posted.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: On the whole, I've had better weeks

Hi Lisa,

I am a little late to this thread, but wanted to add my welcome to all the others.  This diagnosis is so devastating and seems to sneak up on otherwise healthy strong individuals.  The good part is healthy strong individuals can handle all of the treatments better.

Itching was my first symptom, then came the white stools and dark urine.  The itching kept me up at night and I used ice packs to try and help.  I had a stent placed which relieved the itching.  I was eligible for surgery and had a Whipple followed by 6 months of chemo (Gemzar).

I echo other people's suggestions about getting a 2nd opinion.  Doesn't mean you change doctors, but it does help with decisions about treatment to get more than one opinion (I got 4!!).

Hang in there Lisa.  You sound like you are a strong person in general and that will really help with all that you are facing.

Take care,
-Randi-

my email address is: randi.barrell@gmail.com if you have any questions for me or just want to talk.

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: On the whole, I've had better weeks

Lisa,
Sorry for the late welcome. You have found a wonderful group of caring and loving friends in this site. I am a three year survivor. If you would like to talk about any of the treatments I've had please call me at 330-903-6868.
Lisa Craine

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