February 16, 2010 at 12:28 am #35649gavinModerator
I just want to say that I completely agree with everything that Pam says when she talks about a notebook, making notes and having a list of questions ready to ask in meetings with doctors etc. I attended all my dads apps with my dad when he met his specialist, onc and his GP, and I forgot to ask some of the questions that I wanted to ask, especially when we met with the specialist. And if I had a list of questions ready to ask then that would have made things so much easier.
Pam also makes another excellent point about how it is easy to forget things when we are under stress, and that is so very true. But I would also like to add to that and say that it is also easy to forget things to ask when we have received good news in meetings with doctors. This happened once with my dad in that his jaundice came back in the weeks leading up to an app with his specialist. Then all of a sudden it cleared up before we had the app with the specialist, and during that meeting he told us that he was very happy at how dad was doing and that there was no jaundice. Now we were so very happy to get this news and I forgot to ask the questions that I had planned to ask regarding the jaundice.
My best wishes to you and Marc,
GavinFebruary 15, 2010 at 8:25 pm #35648cherbourgParticipant
a couple more things….
Get yourself a notebook and carry it with you. Jot down any questions that flit across your mind so you can ask them at the next appointment.
Get in the habit of asking for copies of lab results, scans etc. and file them in your notebook. I even had a spot in my book to save receipts for lunches, parking and travel expenses since these are all tax deductible.
Take notes while at the appointments.
Most importantly ….. DO NOT LEAVE THE APPOINTMENT UNTIL ALL YOUR QUESTIONS ARE ANSWERED OR ADDRESSED.
It’s easy to forget when you’re under stress. This notebook idea saved my sanity and I’m in the medical field. (In fact I diagnosed my Mom’s CC.)
You are already doing so many things right. Give yourself a hug and a big pat on the back!
Hugs to you and Marc!
PamFebruary 15, 2010 at 6:34 pm #35647gavinModerator
Welcome to the site, although I am sorry that you have to be here. And I am sorry to hear of Marc’s diagnosis. We know how you feel right now and yes it is a shock when you hear this news. My dad was diagnosed in summer 2008 and his CC was deemed inoperable from diagnosis and I went through the same feelings that you are now. It may not seem like it right now, but the shock will wear off and then the fight will start and Marc will need you to be strong for him.
As you can see, everyone here will be here for you both so please come back often and ask any and all questions that you will have as you will get a load of support and advice from us all. I was my dads carer during his fight and everyone here helped me so much and I know that you will receive the same support. As Lainy says, it is not easy being the carer, but please try and stay strong and don’t give up hope.
My best wishes to you and Marc,
GavinFebruary 15, 2010 at 4:11 pm #35646lainyParticipant
Jeff, take a deep breath now as you are doing all the correct things. The B.R. will come down now and then the chemo can begin. Have you had any time to think about that second opinion or MD Anderson? I believe it was our Kris who has said, Cancer is not a sentence it is just a word. Please keep your hope and spirits up and take care of yourself, not easy being the Care Taker.February 15, 2010 at 3:49 pm #35645jeffgriederMember
YesFebruary 15, 2010 at 2:01 pm #35644walkMember
Sorry you had to find this site. There is lots of good info here and good folks to answer questions.
Two things I found worthwhile, though my father was not a candidate:
-Percutaneous Hepatic Perfusion (PHP) at the
You may also want to check the FDA site for other trials, younger and stronger people are typically more apt to be considered.
JanFebruary 15, 2010 at 1:30 pm #35643kristinParticipant
We are so glad you found us! This group is the most helpful, supportive, amazing bunch of people in the world. And knowledgeable– any question you can think of, someone here can answer.
I agree with what others have said about getting a second opinion. I know it all seems overwhelming now, but there is no standard treatment for this disease and different doctors have different approaches, and it really is worth getting another point of view. If I hadn’t insisted on also seeing a radiation oncologist when I had my recurrence, I honestly don’t think I would be alive now.
Please let us know how we can help you. We’re all sending tons of good wishes to you and Marc!
KristinFebruary 15, 2010 at 1:24 pm #35642lainyParticipant
Dear Jeff, Welcome to our Family and we are so sorry you had to find us. The emotions you are feeling are very “normal” from hearing the DX. Honestly the more you can read and skim our posts as well, the more informed you will be to fight and when that fight starts and a game plan is in place the emotion subsides and the fight begins.
I agree also with everything said before me, not going to wear you out with reading on and on. Just want to tell you for now, that you have one of the best Cancer Centers right in Houston, MD Anderson. Please keep us posted and feel free to come visit often to rant, rave, ask or advise.February 15, 2010 at 1:11 pm #35641cherbourgParticipant
Just wanted to weigh in and echo all that was said above. We are sorry you and Marc had to find us but now you have a data base of information backed by caring, compassionate people that know what you are going through.
I would like to add there is a search function at the top of the page you can access for questions, posters etc.
I would also strongly recommend that you follow Marion’s advice on getting the medical power of attorney. Also make sure that Marc lists you on all of the HIPPA forms that need to be signed. This will make it easier for you to have access to all of his medical records.
Take a deep breath, and get ready to fight. Just remember you are not alone and we’re here for you and Marc every step of the way!
PamFebruary 15, 2010 at 4:01 am #35640marionsModerator
Dear JeffFebruary 15, 2010 at 3:04 am #35639mlepp0416Participant
So sorry to hear about your partner’s diagonosis of CC. Welcome to the best little site on the web and I’m certain that like me, you did not want to ever hear the word Cholangiocarnicoma. In early 2008 I had never heard the word before.
My husband Tom was diagnosed in Mar 2008 and had a liver resection in June 2008. After a long recovery (he had a bile leak) every thing appeared to be going well. We had a great spring, summer and fall of 2009. In Nov 2009 he started to turn yellow. Another reoccurrance of a 2.5 cm tumor in the middle of the remaining biliary tree, involving the hepatic artery, so it is inoperable.
Tom’s bilirubin level started climbing and when the VA oncologist that was assigned to him at the Iron Mountain VA in Iron Mountain Michigain saw his scan, he told him to go home and get his affairs in order. When I questioned about Chemo and/or radiation he said “It would not help”.
We got 2nd and 3rd opinoins and so should Marc! Never take no for an answer! No one has an expiration date stamped on the bottom of their feet (or on their butt).
Tom also did not have any warning signs! The only indication that there was anything wrong was that his liver enzymes were elevated (they were normal three months prior) We are lucky in the respect that I carry private health insurance for Tom and didn’t have to rely on the VA. After six weeks of dealing with the VA docs changing his diet and just checking his blood work, we sought out civilian docs who diagnosed him.
Tom’s liver resection was actually done at the VA hospital in Milwaukee Wi, by Dr. Teresa Quinn – a wonderful Doctor and I would recommend her to any Veteran.
The oncology team at the VA missed the mark as far as I’m concerned, because they said with clean margins he did not have to have any chemo. However all of his new docs are now saying that if he’d had the chemo after surgery he may not have presented with a new inoperable tumor.
After the VA doc told him to go home and get his affairs in order, we got to work KICKIN’ this cancer! We are currently getting treatment at the Vince Lombardi Cancer Center in Green Bay Wisconsin.
Tom’s bilirubin level climbed to an all point high of 24.7 but he did not suffer any of the side effects such as intense itching or brain confusion. His docs are amazed. He underwent 28 radiation treatments and his 2.5cm tumor has now shrunk and most of his bile is now getting to where it needs to be rather than into his external drain bag.
Have they done an ERCP to see if they can stent Marc’s liver? Does he have an external drain to drain off the excess bile (which will bring down his bilirubin level)?
Have radiation treatments been discussed as a way to shrink the tumor? This did work in Tom’s case (YIPEE) Tom just started on chemo yesterday (Xleoda).
Has Marc sought a 2nd opinoin? Does he have health insurance? If so, please get 2nd and 3rd opinoins.
I know the shock that you are going through, been there, done that. As my husband’s caregiver, I know a lot more about this cancer than I ever wanted to know. I’ver been on the roller coaster ride with Tom now for 2 1/2 years and I want to get off, but I also want to be the person that he can count on to always be there for him.
This last ride has taken a toll on his body. You can read more on his story under my login name mlepp0416 (My husband and Cholangiocarcinoma)
The early detection IS very difficult with this disease unless one is on a cholesterol lowering drug. Every one should have their liver function tested and many more cases would be caught early and many more people would have successful outcomes.
Was Marc ever in Vietnam? In any Asian countries? We have been learning that many Vietnam vets are now being diagnosed with CC, but the VA is not willing to consider this cancer as a service connected disability. We need to get that changed and the more veterans that get this cancer and the more that put in for service connection the better it will be.
Go with God, prayers from Wisconsin are coming Marc’s way.
KEEP KICKIN’ THAT cancer.
MargaretFebruary 15, 2010 at 3:01 am #35638darlaParticipant
I am glad you found this site, but sorry you needed to. Everyone here knows exactly what you two are going through and how you are feeling as we have all been there. You have come to the right place for help, support, advice and anything else you need. The people here are all so helpful and caring. It is like having another family. All here for each other. Please keep coming back and let us know how Marc is doing. This is the best site for getting help and information on CC. Do some searching and reading and ask whatever you want. There is always someone who can answer your concerns. And sometimes you just need to vent. We are here to listen, too.
Take care Jeff and try to be cautiously optimistic. I will be thinking of you and Marc and hoping for the best.
DarlaFebruary 15, 2010 at 2:10 am #3196jeffgriederMember
My name is Jeff Grieder and my Domestic Partner of 10 years, Marc Mecklenburg was diagnosed with Cholangiocarcinoma this past week. We are still in shock as only three weeks ago he appeared as healthy as can be. He is still in the VA Medical Center in Houston Texas. The tumor is 7×6 centimeters so it is not operable. His bilirubin is still fairly high and they are doing their best to bring it down so that they can start Chemo as soon as possible. I am doing as much research as possible and find it very hard to be optimistic from everything I have learned so far. Though the Oncologist says it really depends on how the tumor reacts to the first Chemo treatment.
I am so disappointed that early detection is so difficult with this disease. If we could have found this early on he could have been a candidate for surgery. But the tumor is already too advanced. I still canFebruary 15, 2010 at 1:55 am #35637tstewart4128Member
hi Jeff.. im sorry you had to join our group. My mom was diagnosed in November 09 with a inoperable klaskin tumor with mets to the liver and lung. She is currently on a chemo cocktail of gezmer/clisplatin and is on her 4th round. Im know things seem really bad at first, especially when you start reading things online and its definitly a rollar coaster but you will find alot of good news and good messages on this board. My mother is doing fairly well with her treatments and seems to be responding to the chemo which will open other doors for other types of treatment. Although there is no cure at the moment, you will see that you need to take it day by day. There are new trials all of the time and maybe raising awareness for this type of cancer is something that we all need to do so that early detection can be something that happens more often! Jeff – I am still in shock, my mom is 63 and was healthy before she turned yellow. She lives next door to me and just moved to Florida a few years ago to watch my kids grow up.. i wake up every morning and pinch myself and hope this is a just a nightmare. I totally understand where ur coming from. We are here for u and please look through this website.. it has helped me get through so much these past few months. We are with u all the way!!! Keep us posted.
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