recently diagnosed

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  • #40437
    devoncat
    Participant

    Sally what wonderful news. Information is key with this cancer. It is good that you are taking the time to research and find out more. Surgery is the only known cure for cc so if she has a shot at it, imo that seems like the best shot.

    Brachytherapy gets good results too, and my bestfriend who is an oncologist really wanted me to have it, but I did not qualify for it. If you search the forum for brachytherapy there should be lots of information.

    Kris

    #40436
    sallypa
    Member

    my sister has been told that she can have surgery for her tumor at u of penn. it is such good news since up to this point our only choice was chemo, embolization and than pray the tumor shrinks so that surgery can be performed. we are very hopeful but still seeking more opinions. we contacted the mayo clinic but she is not acceptable for the liver transplant program. i was just reading about brachytherapy which seems promising. does anyone know anything about this.

    #40435
    Bazel
    Participant

    Sallypa,

    Like many people who have learned a loved one has been diagnosed with cc you are scrambling to learn as much information as possible.

    Others have provided good feedback on second opinions and you have put the wheels in motion which is good. As you learn more about cc you will come to understand that no two cases are the same and therefore treatment can vary widely. I am on this site as my dad had cc so my thoughts come from the viewpoint of a family member.

    I have read multiple accounts of people having chemo after being told surgery is not an option then be eligible for surgery once a tumor has shrunk some as well as folks who start out with surgery and follow it up with chemo. My dad started on Gemzar only. Moved on to chemo-embolization (which he had really good results with) and then went on to a Gemzar/Xeloda chemo mix. With this all said, I would say that starting chemo can only benefit your sister as a broader review of her case takes place and an overall game plan is devised. Gemzar/Cis in general has low reported side effects from what I have read on this site.

    It sounds like a plan is coming together

    #40434
    sallypa
    Member

    thank you nancy we have sent my sisters records to sloane kettering as well as the mayo clinic and u of p. we did get a little good news today. we have a meeting on weds and were told the surgeons now think that they may be able to shrink the tumor with chemo and radiation and than be able to do surgery. we are praying that when we talk to them on weds they will explain this better and it will be the break we need. it is the first bit of good news we have had since we got this terrible news.
    thank you marion as well i will try to contact dr jenkins in boston.
    your help is greatly appreciated.

    #40433
    nancypkeen
    Participant

    Hi Sallypa,

    So sorry to hear about your sister. PLEASE get her to go for a second opinion. My husband was given the dreaded news that he needed to get his finances in order because he had six months to live because of his CC. We went to Sloan Kettering in New York for a second opinion and they took a whole different look at his cancer. He had a resection by Dr. Jarnagin and we loved him. I would highly recommend him for a second opinion.

    Hugs,
    Nancy

    #40432
    gavin
    Moderator

    Hi Slittle,

    Welcome to the site although I am sorry that you had to join us all, but glad that you did. Can you give us any more information at all about your husbands condition and where he was diagnosed etc? I agree with Marion about getting another opinion and consulting with specialists who have experience in dealing with CC. I came here back in 2008 when my dad was diagonosed and you are also doing the right thing in coming here and seeking more information about this. The more information you can find out about all of this the better informed you will be.

    I hope that you will keep coming back here as you will get a ton of support and help from us all. And please feel free to ask a load of questions that you will have and we will help if we can. Please try not to think the worst and stay as positive as you can. We are all here for you.

    My best wishes to you and your husband,

    Gavin

    #40431
    marions
    Moderator

    Hello slittle…..and a very warm welcome to our site. I am sorry to hear about your husband. Where has your husband been diagnosed? Have you consulted with other specialists? Has a liver transplant been ruled out? With this disease I believe, you would want to have the professional opinion of physicians “very” familiar with this cancer. Another very important aspect of dealing with this disease is to empower yourself with knowledge. This site and its members gladly will help you along. But most of all please, do not give up hope. Your husband may very well respond to one or the other treatment options available to Cholangiocarcinoma patients. I am sorry that circumstances have lead you to our site however, I am happy that you have found us. Please, continue to reach out. We are here for you.
    Best wishes,
    Marion

    #40430
    slittle1127
    Member

    Hello – My husband was just diagnosed with CC. We haven’t seen an oncologist yet but have an appointment scheduled for Thursday. My concern is that there are “innumerable” tumors in the liver and one is 12cm x 12cm. That doesn’t sound good to me. I am thinking he is at an advanced stage. Any information you can provide would be welcome. Thank you.

    #40428
    marions
    Moderator

    Sally…..here is the number for Julie Doyle. She is the administrator for Dr. Jenkins, Lahey Clinic, Boston. Dr. Jenkins has much experience with this cancer and may very well look at your sister’s records.
    781-744-5304
    Good luck. Please, let me know if I can be of more help to you
    Best wishes,
    Marion

    #40429
    sallypa
    Member

    i just looked into dr gamblin. he is no longer at the university of pittsburgh. on july 1, 2010 he went to the medical college of wisconsin. i hope i can contact him there. does anyone know if you start chemo will other hospitals be willing to give you second opinions and treatment.

    #40427
    ashley
    Participant

    SallyPa.
    I’m very sorry to read about your sister. Since she is in PA, DR. Gamblin at UPMC ( U Pitt) medical center comes to mind. If you would like to email me ( I don’t see your email listed to forward you the info), I can provide more info to you on how to reach him. I initially emailed him because I had read about another member of this site whose husband was operated on by Gamblin when other docs would not. I later learned through this site that he has done brachytherapy, what seems like a promising treatment for CC that is normally only seen as part of the mayo transplant protocol.. so I definitely think he works outside the box and would be great for a second opinion.
    Ashley
    ajackson0@snet.net

    #40426
    sallypa
    Member

    thank you all for your help. is there any chemotherapy you feel is the best for the tumor that my sister has if we have to go that route. i see that the two she may be taking are the standard practice but maybe there is something better. also how bad are the side effects. we are sending her records to the mayo clinic as well as sloane kettering. hopefully someone will have a better answer. also the drs want to start chemo this week and that doesnt leave time for second opinions. i have read where once treatment starts other hospitals or drs wont interfere. do we have time to wait for other opinions.

    #40425
    gavin
    Moderator

    Hi Sallypa,

    Welcome to the site, although I am sorry to hear of your sisters diagnosis but I am glad that you have joined us all here. Like you, I had never heard of CC until my dad was diagnosed back in the late summer of 2008 and his diagnosis seemed to come out of nowhere. His CC was also deemed inoperable for similar reasons to your sisters, too close to the portal artery. But please do not let this put you off getting a second or even third or fourth opinion.

    I know this is all happening so quickly and you have to take in so much information in what is a very stressful and tough time for you all just now, but you are doing the right thing for your sister in finding out more information about CC and what it involves. Please keep coming back here as you will get a load of support from us all and we will all help you as best we can. The more information you have the better informed you will be so please, feel free to ask as many questions here as you want to.

    I know that your head is probably spinning right now, I know mine was when my dad was diagnosed. But I know that you will feel better soon once your sister has a plan in place as to what to do about this. We are all here for you.

    My best wishes to you and your sister,

    Gavin

    #40424
    kentuckyjack
    Member

    Hello, Sallypa: I’m just a fellow-cholangiocarcinoma sufferer diagnosed in Jan-Feb 2010, and I’m sorry to hear of your sister’s diagnosis.

    Looking at what your’e asking for in your last posting, I can say that it is possible that I am alive today because I sought a second opinion. Yes, cancer may keep growing until successfully treated, but a second opinion may have saved me FROM surgery.

    My first offer of surgery came from a general surgeon at a local hospital with a cancer center, but the surgeon was not a specialist in liver surgery. Friends and family guided me to another hospital with a National Cancer Institute affiliation and a relationship with a medical school. The chief of the relevant department reviewed my case and eventually decided that I was not, after all, a candidate for surgery, because the tumor had vascular involvement and was just too large to get out with what they call “clear margins.” I’ve taken several months of chemotherapy instead, and the tumor has shrunk, and now I’m being scheduled for a radiation procedure.

    To access a list of major cancer centers, look on the bar on the discussion boards page, and you’ll find them listed under “Newly Diagnosed” which is towards the left right next to “Home.” Several people have said that Mayo Clinic is the very best, as they have the most experience with bile duct cancer. But there are several other cancer centers with advanced expertise in dealing with bile duct cancers. The board members and senior members can help you further in this area, I’m certain.

    God Bless you both!

    -Tom

    #40423
    sallypa
    Member

    my sister lives in philadelphia, pennsylvania, USA. we are trying to send out her records to different hospitals and cancer centers in hopes of someone being willing to do surgery or a transplant. i dont know if the drs are rushing the chemo or not. i am afraid that while we are looking for a second opinion she will be getting worse.

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