January 8, 2018 at 3:14 pm #96401positivityParticipant
Thank you for joining the board, and the more people we get the better for understanding this condition. I am not here to give advice or tell you the road you need to choose, but give you my experience. I highly believe you should be your own advocate and if you are unable have a family member or someone close to you. It is a tedious process and sometimes the person who is going through this does not have the energy to schedule appointments, research doctors, make decisions, or even make the effort to learn about this condition.
CC is a very challenging condition and can differ for many as far as location, how aggressive, and how you will respond to a treatment. If possible genetic testing is important so you know there are more options than the standard gem/cis. My mom has the same which is perihilar CC, and it is tough from what I have experienced. Have you had stent placements?
She did not have treatment based on her individual unique health conditions. I had a hard time with limited choices, so we just did symptom control. Again, there is no easy day and we take it day by day. Check into clinical trials as that can open doors for many if something works. The most important is finding a doctor who you feel comfortable with and is able to work with you. Sometimes that can be a challenge as some are not very assuring and have a one track mind. I recommend a few opinions if that is possible for you. Again, look into what your body can tolerate as far as treatment and ask about success rate by the doctor giving examples.January 8, 2018 at 11:46 am #96400gavinModerator
Welcome to the site. Real sorry to hear what you are going through with everything but am glad that you have joined in with us here as you are around people who care and know how you are feeling. And of course, we will all help as best as we can. We do not have all of the answers but as I said, will help when and if we can.
You reached out to Rick and he got in touch with me to see if I could help with your questions on the mechanics of the board and how it works. So please, if you have any specific questions then ask away and I’ll do my best to help.
As to the threads on the boards, yes everyone in the community can see the posts whether they are logged in or not. To reply to a posting in a thread, all you have to do is scroll down to the bottom of the page and type a response to any post in the text box then hit submit and it will be posted on that thread. The most recent posting on a thread will be at the top of each page of that thread. Eg – once I finish this message and hit submit it will go to the top of the page and everyone will see it. Then if someone else posts on your thread then that will go to the top and mine will be the second post on the page. I hope that helps?
People do not have to reply to a post to read them, anyone can read them. You can also message soemone directly if you want to as Mary has said to you. It is all quite easy once you get the hang of it! But please, do not be afraid to ask for help on anything board related, there are no silly questions!
That is great that you are looking to attend the annual meeting in person and I know that you will get to meet a load of people there. And no doubt you will get a lot of answers in person for the many questions that you no doubt will have.
As I said, I am real glad that you have joined us all here, but of course wish you didn’t have to be here. And I know that you will get the support from everyone that you have been looking for. Keep on posting and know that we are all here for you Mark.
My best wishes to you,
GavinJanuary 7, 2018 at 9:10 pm #96398
Thanks for your update.
You asked about the mechanics of the board. What you post is seen by all readers. If you want to reach out to a specific board member, there is a private message function which you can access by clicking on the “send a message” button under the board member’s user name on the left-hand side of the message.
There is a huge variety of experiences with this cancer, so by posting so all can see your message, it is more likely someone who has experience with your area of concern will see and can answer.
Gemcitabine with cisplatin is a common first-line treatment. The biopsy and genomic testing your doctors are recommending is certainly the wave of the future now that precision medicine is becoming a mantra for cancer treatment. If you are concerned by the high cost of potential off-label medications, please be aware that some (not all) pharmaceutical companies offer financial assistance to qualifying patients, so that is worth checking out on the company websites.
Whether to have a second opinion is up to you. There are merits to this with a complex cancer. Reflecting on postings on this board, some examples of reasons for pursuing a second opinion have been (1) to be absolutely certain whether or not surgery is an option and (2) when needing to choose among treatment options, e.g., if there are multiple clinical trial options.
Your family members are spot-on correct in my humble view in encouraging that you take a strong role as self-advocate. I felt like having this rare cancer sent me back to school, as I had to acquire a lot of information to look into treatment options, and to deal with medical professionals I encountered who have not seen many patients with my cancer.
I hope you are still considering attending the Cholangiocarcinoma Foundation annual conference at the end of the month.
Take care, regards, MaryJanuary 7, 2018 at 7:26 pm #96397
Rev. Wayne –
I was interested to learn that you also have had 3 different cancers. I was wondering if you have ever undergone testing to see if your cancers are the possible result of a genetic problem such as either of the BRCA mutations? I’m not sure if this would have any bearing on your treatment but if a mutation is found it may be something that other family members should be tested for so they can be better prepared for their increased cancer risk. I couldn’t agree with you more regarding the outstanding care one receives at the Mayo Clinic. I’ve thus far been most impressed. Thanks for your input regarding my situation. I wish you nothing but the best and if I can find a way to get to the Utah conference in February I would really like to meet you.
– Mark –January 7, 2018 at 7:14 pm #96396
Let me start by saying I’m not quite sure how these discussion board threads work (even though I’ve made a couple of entries). When I reply to this, who all sees it? Is it just the people who have replied to my initial post or is it the whole community? I’m assuming that at least those of you who have replied to my initial post will be notified of this so I’ll respond accordingly.
Anyway, my wife and I returned late Friday night (1/5/18) from the Mayo Clinic. During this latest day trip we saw a Gastroenterologist, a Medical Oncologist, and a Radiation Therapy doc. What we learned was this. The Gastroenterologist wasn’t that helpful (see previous post). He basically advised me that I needed to do my homework and choose a treatment regimen that I was comfortable with. The Medical Oncologist along with his Intern (Fellow) was the most informative. The Fellow (I assume this means he is working on some kind of Fellowship and is assigned to the doc) did a very thorough job of learning what I knew of my cancer situation and filling in any gaps that I left. My cholangiocarcinoma is of the Perihilar variety and consists of one tumor about 2.2 cm in size. While relatively small, it is positioned in such a way as to have been determined inoperable once the surgeon opened me up and got a better look. The surgeon saw no indication that my cancer has spread. Several lymph nodes that were removed and tested were clear. My gall bladder was removed and was without any sign of disease.
After the Fellow left to discuss my case with the medical oncologist (Dr. McWilliams), they both returned to inform me of the plan they though would best address my case. Unlike what I was told initially, they didn’t believe I would be best served by having chemo in conjunction with radiation. They want to first try a chemo regimen consisting of one infusion followed by a second in eight days, then a week off repeated until six months elapse. At the end of this period they will evaluate me to see if radiation is also needed. The chemo will consist of gemcitibine and cisplatin. I understood them to say that this chemical compound was best suited to someone with the BRCA2 genetic mutation that I have but I’ve since read many posts on this site and other on-line articles that say that this is now the standard protocol for initial treatment of this disease. I also learned that because of my BRCA2 situation I might at some point be a candidate for one of the PARP Inhibitors but that they have not as yet been approved for this type cancer. As such it would unlikely be covered by insurance and if I were to choose to pay for it myself the cost would be $10,000.00 a month! They also want me to have a biopsy of my liver performed to determine if the cancer I have has undergone any kind of genetic change. I have returned home to Michigan to have this treatment administered here locally. Does any or of all of this make sense to those of you who are further along in the treatment process? Is it worthwhile to continue to solicit other opinions while undertaking this treatment plan? I’ve been advised by some well meaning family members that I need to continue to be my own health care advocate and talk to people at the Cleveland Clinic and other cancer centers to see what they have to say. Am I in danger of just unnecessarily complicating things? As always, I look forward to hearing from anyone with an opinion.
Peace.January 5, 2018 at 12:42 pm #96388WmeiselParticipant
Dear Mark ,
Hope things start making a litel mores sense and the path forward becomes more clear. I dont knokw about waiting to start your chemo, ( I waited about three months due to a number of road blocks and looking back , I wish i had started right away) but I think going to the annual conference is a great idea. I will be attending and plan to get there early and stay late. I didn’t ask to be part of this group, but since i am , I figure I shoudl give it my all. I have never met anyone who has this so that will change the last week of January.
I too have had my care done at Mayo. Amazing place , but human. I found that the team approach means that there might be more than one voice, openiions and direction . This can be both helpful and confusing. What i did find helpful was relying on the doctors that I have the greats rapour and confidence. That has helped me
Sounds like you are doing pretty well all things considered. I have found that staying active and working have really helped me from falling to far into the darkness. Hope you find something that works for you .
Blessings, Rev. WayneJanuary 3, 2018 at 4:37 pm #96380
I am sorry your visit to the gastroenterologist was not more productive. My guess is the subsequent meetings with the oncologist and radiation doctor will be more action-oriented and give you options for a path forward.
My impression reading this board is that this cancer is highly variable and the range of treatments out there reflects that CCA manifests itself a little differently in each case. Your doctors will try to tailor your treatment to your particular circumstances, and will take your own views into account. The fact that there are different treatment approaches in no way suggests that doctors are unclear how to manage it. You may, however, want to consider seeking a second opinion, which is generally a good strategy when facing a complex illness.
Take any survival numbers thrown at you with a HUGE grain of salt. This cancer is so rare that there just aren’t very good numbers to make any kind of prediction with. Your CCA seems to have been caught early (no nodes and no spread) and you are being seen at a major cancer center with good experience. These factors bode well for you.
It was a great suggestion that you consider coming to the Cholangiocarcinoma Foundation Annual Conference. It is an opportunity to hear the latest from the leading doctors and researchers, and to meet other patients. The information on the conference is available on this website. I hope we will see you in Salt Lake City.
Let us know how your next round of consults goes.
Regards, MaryJanuary 3, 2018 at 3:20 pm #96379
Hi Rev. Wayne, Mary, Catherine, and others –
I was very happy to hear from all of you. I have so much to learn and so much to ask that I fear I’m at risk of being seen as a pain in the behind. I hope you all will bear with me.
I’m once again at Mayo and just came back from a very unsatisfying consultation with a Gastroenterologist (Dr. Gores). While I’m sure he is eminently qualified and well-meaning, I left his office feeling empty inside. I think my wife felt the same way.
Essentially he told me that no one has the best answer about how to address my cholangiocarcinoma problem. He said that I would be unable to find any 2 doctors in the world, let alone at Mayo that would agree on how I should be treated and therefore I should do whatever I’m most comfortable with. He said that my particular version of the disease (Perihiliar – sp??) does not respond well to either chemo or radiation. Gem/Cis only extended life expectancy by 3 months and radiation therapy would produce collateral damage to the bile duct that would result in infection after infection and make it difficult to maintain stents that work. The one positive thing he said was that because of my BRCA2 condition I would possibly respond well to PARP Inhibitors (I still need to research this).
I will have consultations on Friday with the radiation and chemo docs. I am not sure what I should tell them about my meeting with Gores or what questions I should have for them. I’m feeling pretty down right now and don’t look forward to being taken further in that direction.
One suggestion Dr. Gores had for me was to attend the national conference in Utah this February and delay my treatment decision until after that. Does anyone think that is worthwhile to do?
Any advice will be most appreciated. Thanks.
PeaceJanuary 3, 2018 at 12:39 pm #96378WmeiselParticipant
Heartbreaking Sorry you are going through this like so many of us. I too am on my thrid cancer. No trophies for this triple crown other than the gift of another day. I too went to Mayo and had the gift of Dr . Nagorney and his team YEs I bleive you got the best there is and will contiue to have that care. Because I live in NewJersey Im doing my radiation and chemo out at University of Penn but still stay in touch with the good people at Mayo. I am doing the protocal that is being widnley proposed the cap oral twice a day for 14 days and the gem ( infusion on day 1 and day 8) will do the radiation after four cycles.. Its not fun but I have been suprised that I have not felt worse I know Im only a sneeze away from all that changing.
Glad your daughter found us. Keep the faith and keep in touch there are a lot of us out here that are prepared to walk with you and each other as it should be.
Rev. WayneJanuary 2, 2018 at 4:21 am #96374middlesister1Moderator
Welcome to our site. I’m very sorry to hear you’ve already had to go through cancer treatments, but it sounds like you are now a well-educated patient. Since CC is so rare, it’s very important to get opinions from a multi-disciplinary team who are familiar with CC, and you have that covered. My mother was DX in Nov. 2013 and also had the unsuccessful surgery. If we could do it over, it would have been easier on her to go straight to chemo/radiation, but until they were in, they thought they’d be able to remove it. At that point, her doctor told us that this disease did not go into remission. However, she did 3 cycles of Gem/Cis and then 2 Y-90 radiation treatments which gave her 3 years of treatment-free life with no evidence of disease (NED). We’re hoping her doctors come up with a plan to put it back into remission.
Let us know how your visit goes today.
CatherineJanuary 1, 2018 at 10:24 pm #96373
Welcome to our discussion board. Please take a look throughout the Foundation website as there is a wealth of good information for patients and their families.
Please also use the discussion board search engine, for example, to turn up other patient experiences with the treatments you will be having.
Your frustration having a new cancer to contend with is understandable. CCA is a rare one, which creates an additional challenge in finding information and experienced medical caregivers. It sounds like you are in good hands at Mayo. The team approach you described is ideal for this cancer. It is a hopeful time with many new treatments being developed and tested. You may wish to ask your medical team about clinical trials and also if they recommend that you have further genomic testing done.
I hope you have a good meeting at Mayo. Please keep us posted.
Regards, MaryJanuary 1, 2018 at 1:06 pm #96372
Hi All –
My name is Mark Groesbeck. I’m a 66 year old retiree who lives in southeast Michigan with my wife, daughter and son-in-law, and their twin 16 month old girls. I’m a father of four daughters and a grandfather of seven (3 boys, 4 girls). I was diagnosed with cholangiocarcinoma back in September of 2017. This is my third cancer. I’ve previously been diagnosed with prostate (9 years ago) and breast (1 and a half years ago) cancers. As you may have guessed from my Username (Brca2 Boy), I have the misfortune of being predisposed to certain cancers because I carry the BRCA2 gene mutation. Increased likelihood of prostate and breast cancers due to the mutation are well known but this CC form of this disease I’ve come down with has come as a shock. As far as I’m concerned, I still attribute it to the BRCA2 mutation.
I’ve undergone surgical, radiation, and hormone therapies for the two previous cancers and am currently recovering from an unsuccessful attempt to do a resection of my liver to address the CC. Apparently the tumor was discovered to be so interwoven with a major artery in my liver that the resection wasn’t possible. I’ve been fortunate enough to receive my care for this disease at the Mayo Clinic. The surgery was performed by Dr. David Nagorney, a recognized expert in this surgical procedure. I am frustrated by the outcome but pretty confident that I wouldn’t have had a different result anywhere else I may have gone for treatment. The surgery was just over a month ago on November 30th at the Methodist Hospital of Mayo Clinic in Rochester, MN. My care while there was outstanding.
Tomorrow (Jan. 2nd, 2018) I return to Mayo for consults with a team that includes Gastroenterology, Chemotherapy, and Radiation Therapy specialists. Hopefully when I leave there I will have a treatment plan mapped out that my local doctors in Michigan will be able to carry out for me. I’m just about back to feeling normal after having been cut from sternum to navel in the unsuccessful surgical try. I’ve had radiation before with some fatigue as the only side effect. But I’m not looking forward to chemo. The good news (thank God there is some good news) is that the tumor is relatively small and the lymph nodes that were removed during surgery all tested clean. In fact, the surgery failed to disclose any evidence that the cancer has spread anywhere. Still, I remain very worried. My youngest daughter found this website and made me aware of it. I’m hoping it will provide the kind of support I’ve been looking for. I look forward to a long association with all of you who are a part of this forum and who share in this difficult journey.
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