Newly Diagnosed
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Hi Jayne, I thank you for your kind words. What type of CC does your husband have? My husbands is Intreheptic. I understand from this website that he may not show any symptoms like the jaundice with this type of CC. Not sure this is helpful to you but there may be a clinical trial starting in a few months at Mass General- Dr Zhu. Sloan may have one starting. We are waiting to hear back from both centers. There is something called a K-ras mutation and if he has this he may be a candidate for the Sloan trial. Have you heard of this or Cell Path? They suggested that as well, from what I understand (not covered by insurance) it is a blood test that they put in 10-15 petri dishes with that many different combinations of chemo to see what your personal blood responds to. Has anyone suggested this or what the next step is for your husband. We will find out the cancer markers on Tuesday (whether he is responding to Xeloda). CT scan will be after he completes 3rd round of pills. Trying to stay positive, Susan
Jane…just wanted to mention that we also have a blog section to which you can add the Caring Bridge site. Only if you are so interested in doing so of course.
Hugs,
MarionI’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,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
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
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.
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.
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.
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,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.
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.
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.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.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/documents/webcontent/003006-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/viewtopic.php?pid=57198#p57198
this is the link for the manufacturing side of the clinical trials regimen suggestion.
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=70877#p70877Last but not least, I am only a patient and not a professional doctor for this disease.
God bless.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/documents/webcontent/003006-pdf.pdf
Hugs,
Marion
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