Confusion over report

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  • #89420
    jnetsirk8
    Member

    Thank you everyone. Lots of information to look into and digest. I appreciate all of you and thank you for sharing.

    White counts were up today so I did have chemo today- round 3 done!

    Thanks again,
    Kris

    #89419
    marions
    Moderator

    esa…..our website offers information on the clinical trial mentioned by you.
    http://cholangiocarcinoma.org/professionals/research/clinical-trials/

    We have not heard from you for quite some time now and hope that you have recovered nicely from surgery.

    Hugs
    Marion

    #89418
    esamolytz
    Member

    Kris, I live in the Twin Cities. Prior to my resection, I participated in a clinical trial using gemzar and cisplatin in standard doses, with low dose radiation added with the intent of amplifying the effects of the gemzar. It may be worth looking into – the surgeon is Srinevas Reddy at the Virginia Piper Cancer Institute (part of Abbott Northwestern Hospital). Oncology is provided by the Minneapolis office of Minnesota Oncology (located across the street from the hospital).

    I can look for a link if you’d like.

    I wish you the best of luck.

    Elaine

    #89417
    crissie
    Participant

    My dad was treated at Mayo. Palliative care means they don’t think they can cure the cancer. That is what they think or have experienced.

    The doctors told my dad that he would have 6 month without chemo and 1 yr with chemo. He did have to get his stent replaced about every 2-3 months and he did not have surgery. They were correct with his diagnosis although they could not really determine if he had leukemia also…I guess in the end they decided he did also have chemo.

    #89416
    lainy
    Participant

    Julie that would be St. Louis Jewish Hospital and Dr. Chapman.is right! And you keep saying you have Chemo brain!!! Rather than Chemo brain blame it on talking baby talk all day!!! LOL

    #89415
    iowagirl
    Member

    Kris…Thanks for the additional information. You are certainly at one of the big centers and one that deals with CC. As Lainy told you, that is where I had my surgery and ongoing followups.

    First: Would you mind sharing the name of your oncologist and surgeon?
    I was seen by Dr. Domingo, on fellowship in oncology….and as such, probably not the first line doctor I should have had….but my case was very clear cut once I was seen…surgery….everything with clean margins and no mets, so it is simple followup scans and labs with the adjuvant chemo I had here back at home. I came to really appreciate Dr. Domingo, who is extremely sharp and compassionate, an unusual combination in the medical field. However, his fellowship will be ending soon after my next set of scans in Nov, so I will be looking for another Mayo oncologist to follow my case.
    There is a Dr. Gregory Gores there at Mayo who is extremely knowledgeable about CC and I would probably start there for myself as a possibility, though I suspect I would get one of his fellows under him with Dr. Gores overseeing everything. You might consider having your file looked at by Dr. Gores .
    MD Anderson …..Yes…one of the best in CC…and there are 2 or 3 Drs there who specialize in CC….and one keeps coming up all the time. Somebody here help me…I can’t remember his name (chemo brain has attacked me again). From everything I hear, he is very open to consults and deals with trials as well.
    St. Louis…..again…can’t remember the name of the hospital, but the Dr. is Dr. Chapman. While he has developed liver transplants for some patients who qualify (you and I don’t because we have intrahepatic)….he is another guy who really rocks when it comes to knowledge about CC and I think if you send your scans , etc to him, he will evaluate maybe without you going there.

    BTW…..I live in Marion, Iowa, (connected to Cedar Rapids) and am just 3 hours from Rochester and probably about an hour and a half or so + from where you live if I have the location of your town right…….just south of the Twin Cities? We always joke about Marion/Cedar Rapids being the Twin Cities of Iowa. :)))

    Julie T.

    #89414
    katrina
    Participant

    The only true cure for now is when it is resectable (can be removed by surgery). Many doctors use chemo or radiation to weaken it, slow its spread beforehand if there is time). Many oncologists I hear aren’t getting these patients into surgeons. They take for granted that the surgeons won’t be able to help. I recommend a surgical opinion. My surgeon, Dr. Jeffrey E. Lee, Chief of G.I. surgery, woudl be a great one. Their procedure is to ask for an appointment asap from him. They will ask for some of your records and scans to re-evaluate. Then they will let you know if htey think they can help or see you (your condition) in person. They may take it to the Tumor Board to get everyone’s assessment (radiology, oncologist, etc) to get a second opinion from them. Dr. Javli here is an oncolgist who does a lot of work with our cholangio and is involved in research and trials. Their department was the one that wanted gene testing to see if I was a candidate for the Phase II BGJ398 trial which has shown some hope of large reductions in the past. Only people with a FGHR gene alteration would be helped by this one. It is a pill form but you still have to comet here weekly so it may be better to find that trial closer or where you have family for mid-week housing.

    #89413
    marions
    Moderator

    Kris….physicians use a variety of staging systems. As a patient, you are entitled to explanations, hence I recommend your adding this to the list of questions to be asked in the upcoming meeting.
    After all, you are the patient with this cancer, and you must be part of the decision making process and therefore must be informed so that you can make educated decisions.

    Palliative intent chemotherapy – This is a vague description and often times cause great concern to patients and caretakers alike. This is what I have learned:
    1. Curative resections are just that – patient is cured from this disease.
    2. Those patients resected but left with residual disease are treated by means of chemotherapy, radiology and/or a combination of both or other biological, immune therapy(still under investigation) or non biological agents. This is called “palliative intent” meaning that the patient is unlikely to be cured, but feasibly he/she can achieve disease remission. This is where I think of it as a “chronic disease” in that patients may become resistant to a drug or treatment (maximum benefit) and then move on to another form of treatment.
    3. The term – Palliative Care – is somewhat confusing, but for the intent of this conversation, patient’s symptoms are addressed in various ways i.e. pain medication, radiation, psycho-social care, etc. in other words: everything designated to preserve quality of life.

    Having said that, palliative care should be part of patient care at all times for patients undergoing treatments as well as for those focused on symptom control only.

    Please take a look at the below link:
    http://palliativedoctors.org/faq

    To further help you understand this cancer, the following link will be of great help to you:
    http://cholangiocarcinoma.org/newly-dx/

    I hope this helped.
    Hugs
    Marion

    #89412
    lainy
    Participant

    Kris, you are catching on, saying Chemo is a good thing and we always use the word HOPE!

    #89411
    jnetsirk8
    Member

    Hi Lainy –

    I am about an hour and a half from Rochester. A town called New Prague. Fortunate we have a Mayo hospital here as well, so will be heading there shortly to hopefully get chemo today – never thought I would be saying “hopefully” and “chemo” in the same sentence!

    Will check back in later today. Thanks ~ hope you all have a good day.

    Kris

    #89410
    lainy
    Participant

    Kris, thank you for clearing that up with us and know that you are at one of the best places to be for CC care and treatment. I feel that just for peace of mind you might want to send all your reports to another Hospital such as MD Anderson in Houston who may feel you are on the right track anyway. Julie, who answered you first, had her surgery at Mayo and continues to be treated there. Sorry, but weekends are kind of quiet around here and I am hoping you get a few more thoughts on your subject. Where is out-state?

    #89409
    jnetsirk8
    Member

    Thank you Julie and Lainy,

    Just to be clear, I DID have surgery and a large tumor, my gall bladder and 4 lymph nodes were removed, 3 of which were cancerous. My surgery took place at Mayo in Rochester, MN. My post surgery scans and then biopsy were also done in Rochester. My primary oncologist is out of Mayo Rochester as well. I live out-state MN, so I have a local oncologist who over sees the administration of the chemo. I am scheduled to go back to Rochester for another set of scans after 6 chemo treatments.

    Where the heck does one go for a 2nd/3rd opinion? I realize there are options, but again, would appreciate input what others have done. I know I can call Rochester and talk to my primary, which I plan on doing, but before doing so, I wanted advice from you folks.

    Thanks for this board – it took me a while to post, but I have been following various threads for a while now. I appreciate all the information.

    Kris

    #89408
    lainy
    Participant

    Dear Kris, welcome to our remarkable family and the best place to be for CC support. I agree with Julie and I would definitely get a 2nd opinion, we are big believers in 2nd and even 3rd. Where are you being treated? Below is a site you may find helpful:

    http://cholangiocarcinoma.org/newly-dx/

    Please keep us informed of how you are getting along as we truly care.

    #89407
    iowagirl
    Member

    Kris….I hope that someone else will be coming along soon to give you more info, but I will try to answer your questions. Other board members…feel free to add anything to this or correct me if I am wrong.

    Stage IV B means that the cancer has spread from the localized area of your liver to a more distant area of your body…and in your case…the lymph nodes of your esophagus area.

    Palliative intent chemotherapy means that they are doing chemo to lessen the symptoms of the cancer and hopefully slow it down, but they don’t feel it is stopable or curable.

    What else to ask your oncologist….I’m not sure…but someone else may come on board with some insight for you.

    If I saw those three words, “Paliative intent chemotherapy,” I think I’d be running fast for 2nd, 3rd, 4th or more opinions.

    Has your oncologist not mentioned trying to get into a clinical trial since surgery could not be done and chemo thus far is showing progression? Why not? THAT is one question I would be asking for sure.

    If you don’t mind sharing…where are you being treated? One of the really, very, very important things about treating this cancer is finding a doctor and a big medical center where they are very familiar with this rare cancer and regularly treat it. There are many good hospitals….and great doctors….but they don’t necessarily have the expertise you need.

    Julie T….aka Iowa Girl

    #11609
    jnetsirk8
    Member

    Hello my friends ~

    I hate that we meet fighting this awful disease, but I have battled weight and met great friends through Weight Watchers, and then went through the death of my husband, and met great people through my grief process. So I feel confident I can find friendship and support through this group as well.

    I was diagnosed this spring with Intrahepatic Cholangiocarcinoma. The hope was to do surgery and get that softball tumor out of me. Well, the cancer had spread to lymph nodes – Stage lVA. So after recovering from surgery, new scans were done and the cancer had also spread to lymph nodes in the esophagus area. I am undergoing chemo, but that has not been easy either, mostly because I have a very low white blood count – ANC is like ‘critically low’, so couldn’t even do my third treatment this past week.

    So, I have a few questions for those who may be able to help. I noticed in the notes, my oncologist said I went from stage IVA to IVB – no one has communicated what this means. I would appreciate any insight into this, and what questions I should ask. Also, his last notes said ‘palliative intent chemotherapy’. I have an idea what this means, and I know this is serious stuff, but again, any help you can provide will be appreciated.

    I read books and review ‘things to ask your oncologist’ before every appointment. But apparently that is not enough. Praying for you all and thanks for any insight into my situation.

    Kris

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