Topic: New Member - Wife of newly diagnosed

Hi All - I am Carrie and my husband was diagnosed with cholangiocarcinoma in the last few weeks.  He actually found out that he had cancer the day after his 38th bday, April 22nd and then days later we found out it was CC.  He was diagnosed in Atlanta but then we went to MD Anderson last week and received confirmation on the diagnosis.  We are back in ATL and he starts chemo on Thursday.  We have 3 kids who are 5, 3 and 2.  I just wanted to introduce myself.  We are looking into going to Mayo in JAX.  I don't know if that would be a waste after already going to MD Anderson.  I am sure that my husband Travis will be introducing himself soon as well.  We are finding our peace and hope in God.  We are happy to have found this group.  Carrie

Re: New Member - Wife of newly diagnosed

Dear Carrie & Travis, we are happy you found us as well, but sorry you had to. Who did you see at MDA? Mayo JAX is ok but the Mayo in Rochester is the best Mayo. Honestly MDA is one of the best too. I am wondering if you can stay with MDA but take your Chemo where you are. Often times the ONCS from other Hospitals will collaborate with each other  since this CC is such a rare bird. May I ask who you saw at MDA. What chemo cocktail is Travis going to be taking and where is his CC and what Stage. Please keep in mind that you must be taken care of by a Hospital and ONC who are very experienced with CC. So, I am really feeling MDA with chemo at home. Carrie, quite honestly your gut will guide you, if something feels not right it usually is not. We would really need to know a little more, like the questions above to guide you at this time for a 2nd opinion. Your set up for now sounds good if, like I say, you stay with MDA for now. I may change my thinking after finding out a little more and let's see what our esteemed family says. You have come to the right place to learn (knowledge is our best tool) ask, advise or to just let it all out. Much good luck being sent to Travis for Thursday. Be strong and have a good attitude as that is what will get you through.Looking forward to hearing more from you.
I sincerely hope you have a nice Mother's Day tomorrow with those 3 Munchkins. Life must go on as normal as possible. Some normal, yes!

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.

3 (edited by PCL1029 Sat, 11 May 2013 21:56:38)

Re: New Member - Wife of newly diagnosed

Hi,
Welcome to our corner of the CCA world.
The key for 2nd opinions is to confirm whether the diagnosis is correct,and the treatment is appropriate or not for the diagnosis. If  I were you, I will first to check out whether surgery is an option first, if not, then check out whether interventional radiation is possible or not, if not, then oncolog consult and treatment may be the best option.
Surgery is the ONLY possible CURE for cholangiocarcinoma, that is why to seek surgical consult first.  From the above message you wrote, I presumed that your husband's cancer is unresectable and interventional radiation was ruled out too;if so, you have already done your home work by going for a 2nd opinion at MD Anderson for medical oncology consult. In my opinion, I do not think you need additional  consult by going to Mayo in JAX for the same oncology consult to reconfirm the chemotherapy treatment plan unless you have not gotten consult on surgical and radiation.
BTW, is your husband being treated at Emory@ATL ?
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 Member - Wife of newly diagnosed

Thank you so much for your reply.  We saw Dr Shroff at MDA.  She agreed with our local oncologist who we love about the chemo treatments.  Or local guy is a 42 yr old oncologist out of UNC who is full of piss and vinegar, just what we wanted.  Our dr and Dr Shroff both recommended Gem/Cis.  MDA recommended that we do the chemo here in ATL and she was willing to work with our Oncologist.  She recommended the treatment to be every 14 days instead of the 2 weeks on/1 week off.  Travis has 8 tumors in his liver.  1 main (7.6cm) and 7 small satellites.  Then he has cancer in his lymph nodes in his abdominal wall, chest, and pelvis.
 
Glad to know about the Rochester Mayo.  Do you think that we will get any new info there?  We will most likely have to pay out of pocket for that opinion.  We will gladly do so, but as I read the blog it looks like the treatments esp at first don't vary much so I hate to pay to have someone else tell us to do Gem/Cis.  We are meeting with a surgeon on Tuesday at Piedmont hospital as well as an interventional radiologist.  We know that Travis is not a candidate for surgery right now, but we have this doctor who believes in Travis and he wants the surgeons to know us.  We have heard fabulous things about the surgeons at Piedmont and the internal rad guys.  Over the phone they told Travis that they are going to look at him as a 38 yr old father of 3 and not a statistic.  We are happy with our care here in ATL, but we just keep wondering if there is something out there that we might be missing.  I look at the clinical trials.org, but I have to admit I have a hard time knowing what it what.  This is all so new to us. 

Travis is totally symptom free.  He went in to the ER for kidney stone pain and they found the liver tumor and the large lymph nodes.  The kidney stone pain is gone and he has no other pain except that he says he can occasionally feel the tumor.  No pain but rather awareness. 

Have you ever seen chemo get the cancer out of the nodes?  Also they told us that his CA19-9 levels were at 91,000???? Have you ever heard of that?  We asked if it was a typo and they said no.  So crazy! 


Thank you to anyone for their advice!  I am pouring over everyones entries and trying to learn from other peoples experiences.  It is nice to see others out there like us. 

Travis's story is at www.concretefaith.org.

Re: New Member - Wife of newly diagnosed

Also, the Interventional Radiation has not been ruled out at all, but because the cancer is in the lymph nodes they want to run the chemo cycle right away.  In the mean time we will be discussing different direct therapy and preparing for round 2.  Hopefully he will respond well to the chemo so we are able to try the other treatments.

Re: New Member - Wife of newly diagnosed

Carrie, a very important reason for other opinions is for another eye that may see things differently. And for validation so that you can feel good that you did it all. BTW for an opinion from Mayo MN or possibly  an opinion from NYC just Fax or email need to gather all LABs and Test and send them to an ONC at one of the NYC  Hospitals (just sugggesting) and/or Mayo, MN.  The ONCS are very good about this as things have progressed that way. They understand they are dealing with a very rare and strange Cancer.  If you should  seek another opinion in NYC some of the Hospitals are NY Presbyterian, Dr. Kato, Sloan Kettering or John Hopkins. Gee, Cindy I feel like we just had a Saturday night date! Get some sleep and we look forward to a report on what you end up doing.

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 Member - Wife of newly diagnosed

welcome.

my husband is 44 with CC--in his liver, lymphs and lungs.
he was diagnosed in March of this year.

we have had two opinions (locally) and were told he will never be a
candidate for surgery because he is stage 4, and because the cancer
has left his liver.

he has just finished his first round (2 weeks on, 1 off--9 weeks total)
with Gem/Cis.

he tolerated the chemo EXTREMELY well (other than fatigue) and is
still working, living life, etc.

I would love to hear if other Drs consider surgery for CC patients
where it has spread---we were just told its not an option.
(and unfort. we dont have the resources financially to travel
for other drs/opinions.--that's just a fact and NOT a pity party!) smile

Re: New Member - Wife of newly diagnosed

Hi Bompie, just wanted to step in and say, you don't need to travel to get another opinion. If there are any Hospitals you might prefer to go to for an opinion, just gather your husbands results from Tests and LABS and send them to a Hospital/ONC you feel good about and they will give you an opinion. They are very good about this. MDA in Houston, Mayo in Rochester, MN, John Hopkins, NYC, Sloan Kettering and NYC Presbyterian, Dr. Kato. Hope this can help at least to verify for you that the treatment he is getting is agreed to from someone else.  Best wishes and hope you have a good Mother's Day with those 4 Munchkins.

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 Member - Wife of newly diagnosed

Dorien,
Marilyn's tumor was the size of a football and now is the size of a grapefruit.  Her four months to live has turned into at least 14 months and we might be able to resect if we can get it down to a golf ball size.  Richard started with a grapefruit and it shrunk and just had surgery and it went well and his outlook has been extended.  The point is to never give up.  I don't know what "in the lungs" means, but he is fighting, so you keep fighting too.
Sam

Re: New Member - Wife of newly diagnosed

Dear Sam, I am so happy to hear of Marilyn's "shrinkage". Wishing her continued success on her treatments. That is great news. You really gave me a chuckle with your descriptions. Love it! 3 1/2 years ago I had another rare stomach cancer and the ONC told me it was the size of a cantaloupe. I guess fruit is the front runner on all our descriptions.  At least it works for us. Tell Marilyn Happy Mother's Day and I am looking forward to our next fruit. Would love to hear apple!

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 Member - Wife of newly diagnosed

Hey Carrie,

It sounds like Travis and I share a common path. I'm a 37 yr old married man with two girls (4 & 11), I was too recently diagnosed with stage 4 CC at MD Anderson Houston. The tumor started in my bile duct and spread to my stomach & lymph nodes.  I saw Dr. Shroff (may 1st) as well who recommended Gem/Cis, however since I only have one kidney, my local oncologist here in Orlando (Dr. Zakari of Florida Hospital) decided to change the chemo combo from Gem/Cis to GEMOX (easier on my kidney).

I just started my 1st chemo last week. I will also be going to Mayo Jacksonville this Friday for 2nd opinion.

Yeah, I'm still learning this cancer, the terms and wordings, lots to learn. This website discussion board is incredible. Don't be shy to post messages & questions.

Feel free to personally to get a hold of me or my wife Jamie, thru private message here in discussion, good luck to u and Travis,
Jason

Re: New Member - Wife of newly diagnosed

Hi Carrie,

Welcome to the site. Sorry that you had to find us all here and I'm sorry also to hear about Travis. But glad that you both have joined us all as you're in the right place for support and help, so expect lots of both from all of us here.

Not much really that I can add to what's already been said, but I wanted to join the others in welcoming you here. I came here after my dads diagnosis in 2008 and it was the best thing that I could personally have done. I agree with getting the second opinion as well and if it was me then I would be seeking one as well.

I hope that you will both keep coming back here and feel free to ask any questions and if we can help then we will. I know that your head will be spinning right now with taking everything in, but the better informed you become the better the decisions you will make. Please know that we are all here for you, we care.

My best wishes to you and Travis,

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: New Member - Wife of newly diagnosed

Thank everyone for the welcome. 
Jason - It sounds like we are a week behind you.  We just missed you in Houston:).  I will be very interested to find out what they say at Mayo.  Did it take long to get an apt?  I just filled out the apt form on line yesterday.  If you don't mind sharing what they say it would be so helpful. 
As I said before we see a surgeon and internal radiation team this week.  I know that Travis is not a candidate right now, but we are praying as you are too I am sure that the cancer reacts positively to the chemo.  Maybe some day he will be candidate for resection.  I have read quite a few posts so I don't remember if you have symptoms or what brought you in to find the cancer.  Travis was kidney stone pain which he has had many times in his life.  I only wish that he had a kidney stone 6 months or 1 yr ago so we could have caught this before it spread.  Can't look back, but it's hard not to think that way.  Anyway, I hope that maybe you get some helpful info at Mayo.  Let us know what they say. 
Thanks,
Carrie

Re: New Member - Wife of newly diagnosed

Also, Bompie - Travis is not candidate for surgery now, but I will let you know what the surgeons here say.  Meaning what there requirements will be to get him to a resection.  We know it is a shot in the dark and that no one would operate on him now, but we can pray:).  I'll keep you posted.

Re: New Member - Wife of newly diagnosed

Carrie,

For many people, my dad included, their first symptom and sign that anything is wrong is jaundice and the yellowing of the eyes and skin and that horrible itching that can accompany the jaundice. My dads CC was also deemed inoperable at diagnosis and he had a stent inserted to clear the blockage in the bile duct which cleared up the jaundice followed by PDT as his treatment.

My fingers are crossed that Travis's chemo works very well for him and that he will be able to have a resection at some point. Thats good also that he doesn't have any pain right now and pain is certainly something that should be controlled if it becomes a problem. My dads pain was able to be controlled with paracetamol at first then with codeine based pain meds.

Stay strong and keep coming back here.

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: New Member - Wife of newly diagnosed

Like Gavin's dad, I immediately experienced jaundice and constant stomach dull pain in early April this year. I checked myself into MD Anderson of Orlando and was told that I had a bile duct blockage; they were unsuccessful in placing a stent thru the blockage which is why I ended up in MD Anderson Houston (better hospital & doctors).  After placing the stent in and doing a biopsy of tumor in my stomach lining, Dr. Vaunthey of MD Anderdon (im sure you saw him too) said that the cancer was inoperable and chemo was best course of action.

I did see Dr. Rosenburgy, GI oncology surgeon in Tampa, this past Friday for 2nd opinion, and he gave same recommendation; do the chemo. I did ask him about any possible radiation treatments and his response was that the tumors in my stomach lining can't be treated with radiation (he said radiating stomach lining is not straightforward like breast cancers or lungs) .  I'm still going to Mayo clinic anyways this upcoming Friday for 2nd opinion.  I called Mayo clinic on May 3rd for appointment and they scheduled me on 17th (2 weeks), which is why I went ahead and started chemo, I didn't want to keep waiting around.

Feel free to ask more questions at anytime,
Jason

Re: New Member - Wife of newly diagnosed

Hi Carrie and Travis,

I just wanted to welcome you to this site, but so sorry you had to find us. My daughter, Lauren is the one with CC. She is 27 now and was diagnosed at age 25. As long as you are questioning things, I would keep on getting opinions until you are satisfied. We are in the minority, I think. We were confident and happy with the surgeon and oncologist we met from the get go. It probably didn't hurt that my daughter and her husband work at the facility we go to and they knew the surgeon and how good he was from personal experiences. Lauren will be having the second part of a two part resection this coming Wed. and she was told she was inoperable at first also. She has been through many different chemos, Theraspheres, and was finally ready for surgery!! So, don't give up hope and try and keep a positive outlook. This cancer is compared to a roller coaster often on this site. it is so true. Sometimes things look great and other times things can't get much worse, but we are all here to help one another. I wish you and Travis 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: New Member - Wife of newly diagnosed

Lainy--

Thanks for that info (sorry to threadjack orig thread--)
did NOT know we could send info off to other dr's.

That is good to know since travel is not an option!

Treysam--GREAT news on "shrinkage!"

"in the lungs" means that the cancer has spread to my husbands lungs
as well--

he had his first PET scan thursday- after 9 weeks of treatment!

Re: New Member - Wife of newly diagnosed

I am sorry to hear about your husband however you have definitely come to the right place. I spend a lot of time looking through various posts to see what has worked for some and what others are trying.

From other people being treated at MDA I believe you have definitely gone to the right place to seek advice.

I have read your posts and website and am just inspired by your faith and courage. Your have a beautiful family and I wish all the best for you.

Not being an oncologist I can't give advice however am happy to pass on what we are trying with my father whom has stage IV metastatic CC.

He is currently on chemotherapy (in the middle of second cycle so very early days). He is doing a trial with GEM/CIS and panitumumab (the drug being tested in the trial).

On top of this I also give him vitamin D twice daily ( tested his vitamin D levels and they were low likely due to malabsorption after his whipples  operation). From an alternative / natural medicine side I also juice a bitter melon daily (tastes terrible however do a search on this site for this Asian fruit and you will see why I thought we might as well try it)

Other than that we do not routinely try alternative meds or herbs and everyone is right in that you should check with oncologist first. Many oncologists seem not to like high dose anti-oxidants with chemotherapy as it may make chemotherapy less effective hence I am wary of these.

This morning at church I prayed for your family so just know that even someone in Australia praying for your family

Re: New Member - Wife of newly diagnosed

Rain - Thank you so much for your info and thank you for taking the time to read our posts and blog.  Thank you most of all for your prayers from Australia!!!

Re: New Member - Wife of newly diagnosed

One last piece of friendly advice. If possible suggest you  ask for genetic testing for chemo-sensitivity so that you have more information possibile. i believe MDA do it via a company called Foundatione One

Re: New Member - Wife of newly diagnosed

They are sending his biopsy to Foundation One this week.  Thank you!  We will take any advice:).

23 (edited by marions Mon, 13 May 2013 20:04:00)

Re: New Member - Wife of newly diagnosed

We must know that that science has not identified a gene for this cancer in fact, we lack even a basic understanding of the cause or underlying molecular mechanisms of this disease.
Tests can however predict good or poor responses to tumor receptors; for
example: mutations in the KRAS gene predict poor response to EGF receptor (EGFR.) 
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 Member - Wife of newly diagnosed

Hello All, I just want to add my prayers and support to all of you just starting out with this crazy ride. Thought its horrible at any stage of life, I especially have deep reserves of compassion for you with young children (like my sister). It's so hard to stay "normal" and upbeat and patient with the kids when you're in this extremely stressful time.  Like many have said in the last on this site, it does get easier to manage (the anxiety I mean) when a plan is in place.
Peace, Willow

Willow

Re: New Member - Wife of newly diagnosed

In the "past" I meant...not "last"

Willow