Topic: Newly Diagnosed

Hi! My name is Jayne and my husband, Ken (57) was diagnosed with CC in January 2013.  This process began the week of Thanksgiving 2012 with a possible diagnosis of Lymphoma.  After two endoscopic biopsies of a gastric lymph node as well as one on the periportal, the results indicated that lyphoma was not the proper diagnosis and further tests/procedures needed to occur to find the original source of the cancer.  What we did know at that point was that it was already in an advanced stage although he was not having any symptoms.  A third endoscopic biopsy was performed on the pancreas (no tumors in the pancreas), a colonoscopy (negative), and another MRI of the abdomen (liver, kidneys, bladder), his case was shared with the Pathology Board at The Ohio State University, The James Cancer Hospital.  Finally, we received the diagnosis of CC Stage 4 and was referred to Dr. Wu, oncologist at The James.

Ken has had his first chemo treatment two weeks ago and tolerated it very well.  They were only able to give him gemcitabine because the other drug (I believe is cisplaten) causes tinitis which he already has.  They have requested insurance approval of something else (not sure what yet) and we are hoping it will be approved and available for his second chemo treatment this Tuesday (2/12). 

I have so many questions in my head which I try to get down on paper.  I did ask the doctor, the first time we met, what life expectancy is for this cancer and she hesitantly said average is 1 year.  At that point, my brain shut down and I couldn't ask another question.  My first question is, is 1 year with chemo or without?

My husband could not have surgery first due to the lymph node involvement.  My second question is, can he ever have surgery?  I've read your discussion boards and many people have commented that the only way to get a "cure" is to have surgery.

I am thankful I found this website and hope that in the days ahead I can get information from all of you out there who are also dealing with this horrible disease.  I have one really stupid question for anyone or everyone dealing with this:  (Brace yourself) Did any of you drink a lot of milk plus eat a lot of dairy prior to getting this diagnosis?

Living one day at a time!

Jayne

Re: Newly Diagnosed

Hi Jayne,

Welcome to the site. Sorry that you had to find us all and I am sorry to hear about your husband Ken. But, I am glad that you have joined us all here as I know that you will get tons of support and help from everyone here. And please, feel free to ask any and all questions that you have and we will do our best to help in answering them. There are no stupid questions! We can't promise to have all the answers, but we'll do our best to help.

Thanks for sharing Ken's story with us all. I can't share any personal chemo experiences as my dad never had that, but I know others will chip in and share their experiences with you. Please let us know the name of the other chemo that Ken will have when you know what it is. There are tons of posts on the site regarding members experiences with chemo.

As to life expectancy with or without chemo. Please try and not focus too much on stats, we don't really know what will happen do we. We have plenty of members that have lived far longer than they were initially told by a doctor. Personally with my dad, I preferred to focus on the now and not think too far ahead.

My dad couldn't have surgery either due to his CC being too advanced before it was diagnosed and unfortunately that is far too common with this cancer. His tumour was also too close to the portal artery which ruled out surgery for him. But, there are instances of members being originally told no to surgery at first then being able to have it later after having say chemo etc that has proved successful.

Ok, have braced myself for your last question! As to the milk and dairy, no. My dad didn't drink a lot of milk or eat lots of dairy before his diagnosis. He did drink milk and eat dairy, but not lots and lots of it. That is not something that I have heard of before, but hopefully others will also chime in with their thoughts on this issue.

Keep coming back here Jayne, and please know that you are not alone here. We are with you and know what you are going through right now, and we care.

My best wishes to you and Ken,

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: Newly Diagnosed

Dear Jayne & Ken, welcome to our remarkable family but sorry you had to find us. The best advise I can give you is to try very hard to take each day at a time. As Gavin said, we do not listen to statistics! tHEY DO NOT INCLUDE OUR SUPER HEROS. The next thing is that we are big believers in 2nd and 3rd opinions! Make sure that where ever Ken is being treated, that place has good CC experience. As for dairy, my husband was not able to drink milk before he was diagnosed so don't think that has much to do with CC, at least never heard that before. Jayne, listen to your gut! If you feel another opinion is needed...go for it! We are all here for you and please keep us updated.

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: Newly Diagnosed

Hi Jayne (and Ken),

Welcome to this site that is made up of smart, warm, and caring people, both caregivers and those with this disease. Sorry you had reason to find us and I am sorry that Ken and you are going through so much.

I had gemcitabine chemo for 6 months after my surgery and while it wasn't a picnic, it was not as bad as some others.  I am sure others will add their experiences soon to this thread.

I agree with Gavin and Lainy about both second opinions and taking each day one at a time.  If Ken is feeling good, do something fun.  Lay low on the days that he doesn't.  And I got 2nd and 3rd opinions at different points in my treatment which mostly confirmed what I'd been told, but put my mind at ease that I was doing the right thing.

There are so many caring people on this site who will embrace you and answer any of your questions. 

I have no experience with milk as I am lactose intolerant smile

Take care.

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: Newly Diagnosed

Thank you for your quick responses. Some days i feel all alone with this situation. We have four amazing adult children who are ready to be my support as soon as i let them but as their Mom all i want to do is protect them from the pain of watching their dad deal with this situation. I am sure i have totally underestimated them. I am sure the day will come that i will totally rely on them. I will let you know what new drug Ken will get. And i am so thankful for this website.

Jayne

Re: Newly Diagnosed

Hi Jayne and Ken,

Welcome to this site, but I am very sorry to hear that Ken has been diagnosed with CC. My brother-in-law is from Gahanna and he and my sister live in Delaware, Ohio. Small world, isn't it? My daughter, Lauren, is 26 and has CC. She has been on chemo for 16 months and was told she was inoperable when diagnosed. Well, a few weeks ago she was told she now is operable and we are getting ready for her to have her first of two surgeries the end of March!! So don't give up hope. Miracles do happen. I would not dwell on what the doctor said about how long Ken has. Nobody knows for sure. Enjoy every day and cherish time together. For Lauren, chemo has made her feel much better. For your question about dairy, Lauren doesn't drink that much milk. Mostly on cereal. She does love cheese and ice cream though and has eaten a fair amount of that. I hope this helps answer some of your questions. Please ask away. We love talking to and meeting new people. I wish both of you all the best.

Hugs,
-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Newly Diagnosed

Jayne and Ken:
I agree with getting another opinion also. My first surgeon wanted to operate. When they finally came back with the biopsy results, I decided a 3-4 hour train ride to NYC wasn't too much trouble if I could go to someone with more cc experience. Thankfully I found Dr. Fong, who, while taking away my hopes for surgery, told me that I would almost certainly not have survived. So I thank God I found him.
They are coming up with new treatment options every month it seems. I was on gemcitabine and oxaliplatin for 6 or so cycles. Then I couldn't do the oxy anymore so we gave me a break for a while. When the cancer started growing again we tried gemcitabine and Xeloda. That did not work as well on the cc mutations I have. So we tried stereotactic radiation. So far, so good after 7 months. All is calm and quiet.
I call myself the healthiest sick person I know. I have occasional back pain but otherwise I'm healthy. Except for that darned cc. I play poker, sing karaoke, line dance and pretty much don't stop ('cause I don't want it to catch me).
As far as life expectancy, I guess I need to die now... It was about 93% mortality 2-5 years with very little hope without surgery when I was diagnosed. Sorry but I'm not listening. The outlook has gotten much better in the 2 years I've been dealing with this, and I say as long as I stay alive every day is one day closer to finding the cure.
I have been told by my surgeon that I will die with this. I did not say OF THIS.
Positive attitude is very important. Very difficult, but essential.
I did not drink much milk the past 20 years, but I love my cheese and ice cream. I was never told to avoid that. I do try to limit my meats and sugars now.
I wish you all the best and I agree that this site is full of wonderful, caring people and more information than you can process!
Hugs,

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: Newly Diagnosed

Jayne,
Welcome to this wonderful group of people. I am so sorry for Kens diagnosis. I was given six months and it has been two and a half years so don't hang on those words of one year. I live in Akron, Ohio. If you want to pick my brain or chat please feel free to call me at 330-903-6868. I have had several chemos, surgeries and radiation.
Hugs,
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: Newly Diagnosed

Hi,
Just a caution note for you. James cancer center is famous for it clinical trials research for patients. so when they present you with clinical trial,especially Phase I or early Phase II clinical trial, think twicebefore you say yes.
get an 2nd opinion from another state like  univ.Michigan for medical oncologist as well as interventional radiologist consult for possible different treatments before you making up your decision for clinical trial in James cancer center.
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: Newly Diagnosed

Kris:

I would love to discuss my husband's situation with you directly.  Could you email me at jaynesmalley3893@gmail.com?  Thanks for all the great information.  He is on Gemcitabine and Carboplaten and so far doing pretty well.  The nurse told us that the carbo will deplete his blood counts which the gem did not do at all after just one treatment.  He did very well for the first three days, then yesterday and today seems wiped out.  He said he's very tired and looks it.

I told him we need to get a second opinion but we started with Ohio Health, had a terrible experience with them and decided to try OSU.  This was all before the official diagnosis of CC.  The James is supposed to be one of the nations top-rated cancer hospitals and in fact on this site is only one of two hospitals recognized as an "expert" in CC.  My frustration is just having anyone to talk to from his team.  I don't reallly want to schedule an appointment but I think that's the only way we can get our questions answered and spend sufficient time with a doctor.  For example, I'd like to see his last MRI scan to see where the tumor is exactly.  He has NO symptoms.  The way this whole thing started was because of some enlarged lymph nodes in the abdomen.  I'm not saying their diagnosis isn't correct, but I'm just wondering why he's not lost any weight, etc., etc.  We are thankful, but just curious.

Jayne

Re: Newly Diagnosed

To PCL1029:

Do you live in Ohio?  Have you had a bad experience with OSU or  know someone who has?  We were offered to have Ken on a clinical trial from the get-go but told to take the long weekend to read over the information sheets and then give our answer.  The day the clinical trial coordinator called they informed us that the clinical trial had been cancelled because they ran out of the study drug.  Honestly, after reading all the possible side effects (5 full pages of them!) I wasn't so sure he should do it.  I felt my prayers were answered when the trial was cancelled.

I'd be interested to see how many out there have participated in a clinical trial and what you learned from it.  I just read about Ginger who did one toward the end and was "the sickest" her husband had ever seen her.  I don't think my husband wants to get to the end of his life like that but on the other hand will do whatever is necessary to live.

So I guess my question is do you think clinical trials are a good thing or something to avoid?

Jayne

Re: Newly Diagnosed

Dear Jayne, I have not heard of this James being a major CC Hospital. A top rated Cancer Hospital does NOT mean they have expertise in treating CC. Have you seen our beautiful long list of Hopitals for treating CC? The one thing we know for sure is that no 2 CC patients seem to be alike. Some loose weight, some gain. Some have pain some never have pain. It's just the biggest puzzle and our best tool to fight is to read, read and read. We strongly suggest 2nd and 3rd opinions as our members will attest to. You are not alone, we are all here for you. Please keep us posted 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: Newly Diagnosed

Jane....the most important thing to remember is that clinical trials are first and foremost research studies. 
The enclosed link will be of help to you.   It is lenghty to read, but it covers anything anyone ever wanted to know in re: to clinical trials.
If you prefer to read up on the different phases of these studies, then scroll down a bit. 
Any questions you may have please don't hesitate from posting on this site.  We are here to help.

http://www.cancer.org/acs/groups/cid/do … 06-pdf.pdf

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

14 (edited by PCL1029 Mon, 18 Feb 2013 05:30:13)

Re: Newly Diagnosed

Hi,
To answer your question, No, I do not live in Ohio.
Had any experience with James ,YES.
I think it is a go to hospital if nothing else works and clinical trial is your priority over current traditional chemotherapy.
What is the name of the clinical trial medication that they are running out off?
What will you do if next time they offer another clinical trial to your husband.?
Knowledge is the key,but you have to read fast,start with Marion' s suggestion,read the link,.

http://www.cancer.org/acs/groups/cid/do … 06-pdf.pdf

If I remembered correctly that your husband were on Gem/carboplatin and it works, stays with the regimen that works  until otherwise.The oncologist can order  and give your husband packed cell and platelet transfusion and injection to boost your white counts.This is a general rule for me on taking chemotherapy.If Gem/Carbo lost its efficacy;ask the oncologist switch to other regimen .Side effects of tinnitus is not on oxaliplatin but may cause hearing loss.so there is a trade off on that if platin had to be added.Oxaliplatin is the 3rd generation of the platium .there are many traditional chemotherapy like 5FU,Xeloda,if gemcitabine don't work. there are other agents and the oncologist  can often add targeted agents like Avastin,sorafenib,Tarceva ,cetuximab,panituzumab .and cediranib to the regimen to see which one works better.
If all these regimen attempt failed, then I will consider clinical trials if time is running out . Below are the chemotherapy and targeted agents and regimen that have been used and proved to be useful for CCA. You may also check whether the clinical trial drug that Ohio State offer is on the master list of drugs development for CCA-- the second link-(this shopping list is more or less like the  list for researchers and clinicians to decide for which  clinical trials they want to start or  the clinical trials that just had started.(before Phase I?)
As a rule of thumb,if a clinical trial can go thru phase I and II and reach phase III, new drug approval by FDA will not be far behind for that study if no unexpected things pop up along the way.
this is the link for chemotherapy regimens
http://www.cholangiocarcinoma.org/punbb … 198#p57198
this is the link for the manufacturing side of the clinical trials regimen suggestion.
http://www.cholangiocarcinoma.org/punbb … 877#p70877

Last but not least, I am only a patient and not a professional doctor for this 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: Newly Diagnosed

Jayne, I was initially diagnosed as an unknown primary. I had 3 biopsies with 4 different results. One actually had two things they thought it might be. I went to Sarah Cannon in Nashville where they specialize in unknown primaries. Because of the unknown diagnosis and the fact that I had tumor markers that matched up with one of their Phase 1 studies,  I actually started on a study as my first treatment choice.
Reading all the paperwork is scary with side effects but that is true with every treatment out there. You just need to figure out with the help of your doctors and 2 and 3 opinions what works best for your circumstance.
I had no specific cancer to treat ..so at least the study I tried matched my tumor markers. Initially I showed improvement but then plateaued so I stopped that and am now on 16 treatments of gem/cis. My experience on the study drug was a positive one...they worked with me and my symptoms and once I plateaued we knew it was time to move on.
No matter what choice you make a good CC doctor will stay on top of it with scans and will be ready to offer new suggestions of treatment if need be.

Re: Newly Diagnosed

Hi Jayne, I am a new member as well and am relating to your situation. My husband was diagnosed with Intrahep cc in October 2012 at least that is when they realized it wasnt just a spot on his liver and that her had stage 4 cc. He is healthy and no one would know (in fact other than our closest, no one does know and I am living 2 separate lives)
He had another issue 2 years ago so he was having CT scans and that is how it was found. He has had 3 rounds of gemi and oxy and the CT scan showed it grew and it wasnt working. We are now on 2 round of Xeloda. We will not know results for 4-5 weeks. But to address the milk issue. My husband is a huge milk drinker. Not sure how this relates to cc? We are going to Mass General and Sloan this week for our 2nd and 3rd opinions. I am concerned that they will tell us there is nothing more to do than what we are doing already. Other than being tired you would never know he has this horrific diagnosis. Your story motivated me to come "out of the closet" to share my story and seek help. Thank you.

Re: Newly Diagnosed

Oh, my Dear Susan, this CC is way too much to carry alone! I am so glad you came out. The hardest job in the world is that of a Caretaker and you have gone it alone too long. There is nothing to hide and the more support you have the better you will do your part. I am also extremely happy that you are going to that next opinion. I really don't think dairy has anything to do with CC. I strongly believe that some of it can be caused by bad fish, Sushi, as in Asia there are so many more cases of CC which may come from a Parasite called Liver Flukes and is found in raw fish. My husband had served in Korea and I truly believe that is where his CC came from. You are so on the right track now and we are all here to help. Bittersweet, but we really make for a great family! Now that you took the plunge or shall we say opened the door please stay in contact with us 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: Newly Diagnosed

Dear Lainy, Thank you. I have had your support over the last few months but just didn't post but Janey's story was so close to home. This website is wonderful as well as the brave "family members". I just didn't know where to begin. I am so alone here. My husband is just not ready to tell our friends and my 2 daughters know as much as they need to know at this point. I will let you know how we proceed with the next 2 appointments and if I learn anything medically that can help someone else.

Re: Newly Diagnosed

Susan: I am so sorry to hear this. Who are you going to see at Sloan? Dr. Kemeny is a brilliant doctor but I would not recommend her to most people. Her personality is nonexistent. Unless you are looking at the option of the liver infusion pump, you wouldn't see her anyway.
Dr. Fong is my surgeon and he is a "person". Not just a doctor. He talks to you and explains things. I love him. Sloan is a great research hospital, which is why I go there. Can I ask where in New Jersey you live?
God bless,

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: Newly Diagnosed

Susan, I just thought of something. When you go for your new appointment, it might be a good time to let slip in front of the ONC how you feel so alone in this and that you are going to need everyone's strength so that you can do what needs to be done. It is so hard just being the Caretaker and perhaps the family just needs that tiny jolt to realize you are not Super Woman. I believe that nothing in life changes unless we take control and change it. Yes, yes I am a controlling person but It got us through almost 6 years of this. Hey, I am a nice, I hope, controller~! I believe that all family, especially children have a right to know. No one should have to look back later and doubt what they could have should have done. It will make all stronger to have a fighting team. I am so with you.

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: Newly Diagnosed

Thanks Lainy, It is easier right now while we are sorting things out, drs, etc not to receive all the calls but I agree with you that I cannot go on much longer with this facade.

Kris, Thanks for the dr recommendations. We are seeing the Saltz team not Saltz but someone under him at Sloan. I think her name is Dr Reidy and at Mass General we are seeing Dr Zhu.

Re: Newly Diagnosed

Susan, sorry one more hint, with me its always one more hint. I would not take any calls on Teddy even from his kids.  BUT every night I had an e mail go out to all family and friends telling them what kind of day he had and what if anything was new. Handled....all in one e mail and the thing is they all really understood. My energy too had to be saved for him. I understand.

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: Newly Diagnosed

First, I want to thank everyone for their comments on clinical trials.  Just the words, clinical trial, is scarey enough but then to feel totally uneducated about them only makes it more terrifying.

Second, Susan, I am so glad you decided to share your story.  I have already found that these people are the best and ready to educate and support. Who better to talk to than people who are there or those who have been or are caregivers.  I realize every person is an individual and may respond to chemo differenctly, but to be able to ask questions and get honest answers is so helpful.

As far as not telling people, I want as many people praying for Ken as possible.  We have great faith in the One great healer along with using what's currently known in the medical community.  Sometimes life is just hard and no fun at all, but it's all life.  Ken has felt the love of people that he works with (he works with a man who is Chinese and committed to healing him with Chinese herbs), family, friends who live out of state, etc., etc.  They have not been "nosey" and asking too many questions, but just making sure that we know we are in their thoughts and prayers.  That alone makes dealing with this a little bit easier.  I have started a Caring Bridge account for Ken which allows me to post entries as I want and anyone can go to that site and check it.  They can then post a response.  It's so easy and a way to keep people informed without me having to email everyone.  I also don't feel like I have to respond, unlike if someone emails me.  I was hesitant at first to establish the account because the only people I knew who had an account were either at the end of their lives or had already passed.  I was encouraged to go ahead for no other reason than because it was so easy to do and keep people informed.

Please continue to use this site for questions or just support.  I look forward to seeing you in these discussion boards.

Jayne

Re: Newly Diagnosed

The trial drug that Ken was supposed to get but the study was cancelled was an oral drug AZD2171 that was to be given along with cis and gem.  As I said before, they study was cancelled (it originated from Case Western Reserve and OSU was participating with them) because they ran out of the study drug.

Jayne

Re: Newly Diagnosed

I'm sorry to hear that Jayne. You or the docs will find something else I am sure. Just keep the faith and be proactive!
I'm probably not proactive enough, but I'm not sick on the outside so I'm torn between kicking it when it's down and possibly having worse consequences or riding the good times out until I need to do something. It's a hard decision to make...
I also have a caringbridge account. I couldn't handle the 40+ emails all the time, so if they wanna know, they gotta go there! I also post brief messages on Facebook.
God bless,

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.