Discussion Board Forums Introductions! New member — Wife recently diagnosed with ICC

Viewing 15 posts - 31 through 45 (of 56 total)
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  • #72310
    thebompie4
    Member

    Jason

    I just copied and pasted your info to my husband in an email–

    i’m curious HOW they now the cancer cells are dead as opposed to living?

    We are scheduled to start a RE treatment and it seems like its not a good
    think if the liver tumor is mostly dead (it has shrunk by 66% and that is
    a GOOD thing).

    I hate being at the hands of drs who know so much and i feel like we
    know SO LITTLE….sometimes it’s very frustrating.

    my husbands life is, quite literally, in their hands. ugh.

    No one has said a word to us about dead v living cancer in his liver.

    #72309
    jules1982
    Member

    Thanks for the update Jason, it has given me much hope for my mum!

    #72308
    snowbird
    Member

    Jason…. thank you so much for all the detailed information. It sounds like Andrea has been given the best news ever. From all that I’ve read elsewhere, if you can get by without a re-section or transplant, you are better off. It almost seems like after surgery, cancer spreads to other areas more often than without surgery, not to mention all the risks involved with surgery and recovery. You two have definitely done everything possible with all the opinions you’ve received. It is so encouraging to hear your story. Again, thanks for taking the time to share.

    #72307
    kris00j
    Participant

    Jason,
    I know you think no transplant is bad news… But think of the GOOd news! Shrinkage… Only visible cancer cells are dead cells… That scores very, very high in my book!
    Yes, I understand the frustration of not being operable… I wasn’t, then I was, then I wasn’t. That was harder than the first “wasn’t” because I had been given hope. But ask Lainy, en11, cawler, mcwgoat… Etc. and they will tell you I look healthy. Not operable, but not sick. Most of the cancer cells in my body are dead, too. I will take that every day over active cells!
    Keep on being a great advocate and you will find an outcome you both can LIVE with.

    #72306
    lainy
    Participant

    Wow, Jason you and Andrea have quite a story and it is so informative and I think helpful for others as well. You are some great advocate and Andrea must be a wonderfully strong lady. You not only made what you have been going through very understandable, I think you are helping others with your journey. I agree dead Cancer is the best kind! If this keeps up you never know what one of the ONC’s may suggest. I am in awe of the 2 of you. Sending you the best ever and so much good luck to you!

    #72305
    jscott
    Member

    Hi Snowbird,

    A lot has happened since that last update. True to form, it has been a rollercoaster. The news is mostly very good, and for that I am thankful.

    Since being diagnosed, Andrea has been doing Gem/Cis cycles. She just finished her 8th 3-week cycle. So for us, the rollercoaster has not been in the realm of treatment, but rather in the changing view of what might be next, and how it might all unfold.

    Andrea has had two follow-up CT scans (one after 3 cycles, and one after 6 cycles). Both scans showed substantial shrinkage. After the second scan, we decided to cast a wider net and get formal 3rd/4th/5th opinions from the big cancer centers in the area / country.

    UCLA
    We first got a consult with Dr. Finn from UCLA. I had identified UCLA early on in the process as one of a few institutions with a transplant program that included ICC. The tumor board at UCLA had actually informally reviewed Andrea’s case after each of her three scans. The news was negative after each scan — Andrea was not currently a transplant candidate. The purpose of the meeting with Dr. Finn was to better understand the rationale.

    Based on the discussion with Dr. Finn, UCLA does do ICC transplants, but no one is a transplant candidate initially. He explained their philosophy as cholangio is either “good biology” or “bad biology.” If you had good biology, a transplant was a possibility. “Good biology” wasn’t a biopsy test, but rather was defined as stable / chemo sensitive cancer for 12-18 months. Essentially, if you have longer term control of the cancer they will consider a transplant.

    This actually sounded pretty good since early indications are that Andrea’s cancer seems to be “good.” However, Dr. Finn was not bullish in Andrea’s case. The team at UCLA had noticed that lymph nodes near the liver had shrunk across scans. Lymph node involvement was a deal killer, and their best guess was that lymph nodes were involved. The bar would be very high to convince them that the lymph nodes were not involved (a negative biopsy would be helpful but not necessarily conclusive).

    UCSF
    We next had a consult with Dr. Kelley at UCSF. The reason for this consult was to get their thoughts on the short/intermediate term treatment plan. Andrea’s blood counts are drifting down, and we might need to take a chemo break and/or change treatments for a while, so we wanted to get more thoughts on what would be the right next steps.

    Given our UCLA experience, we were definitely interested in their thoughts on lymph node involvement. Initially, they had an indeterminant view. The lymph nodes did show slight shrinkage, but they might have been swollen as an immune response rather than cancerous. However, after their team review, they also came back with a view that the lymph nodes were likely involved…bummer.

    Radioembolization
    Up to this point, the general plan had been to do Gem/Cis until it “stopped working” (could never pin down if this meant stable or shrinking) or until the side effects were intolerable. After that, the treatment recommendation was radioembolization. I had done some research on radioembolization, and had some concerns about the whole-liver procedure suggested by Stanford (see other posts for more info). Since UCSF does radioembolization also, we decided to get a second opinion from them.

    We learned a lot about the procedure, and found out that UCSF recommends a sequential lobe instead of a whole liver treatment (like most everyone else). We would probably have the procedure done at UCSF, except…Andrea is “not currently a good candidate!” Here we got really good news. According to both interventional radiologists (at Stanford and UCSF), Andrea’s scans indicate too little viable cancer to warrant RE. In fact, the UCSF doc said “all I see in the scan is dead cancer”

    With RE, you need blood-hungry cancer active in the liver to make the process work, otherwise you are just uniformly irradiating the liver (instead of selectively irradiating tumor).

    So that is pretty much the current state of things. We are feeling great that Andrea’s cancer seems very sensitive to chemo. We are shocked that only “dead cancer” is visible. At the same time, we are bummed that the prospects of a curative transplant seem to have faded.

    Andrea’s next scan is in the middle of October. MD Andersen (Dr. Javle) is doing the scan and will be reviewing the case. Hopefully the chemo will stay effective and a promising long-term strategy will appear…

    Jason

    #72304
    snowbird
    Member

    Hello, Jason. I am wondering how your wife is doing since you haven’t posted for a while. My husband, Ron, was diagnosed with ICC just 6 weeks ago. Your situation sounds very similar to ours. I do the research and Ron (age 59) works on healing. I know exactly how you feel about making the right decision – it’s hard for me too. So far, Ron has had 2 Gem/Cis treatments and is on the same regimen – 2 weeks on, 1 week off. After the 1st treatment, there was noticeable shrinkage and the ONC was impressed. Ron has been told all the same things as you guys – no resection, no transplant, etc. Both lobes are involved with one large lesion measuring 10+cm. We too are hoping for enough shrinkage so that a re-section is possible. Godspeed!

    #72303
    jscott
    Member

    Quick update

    Dr. Kato regarding resection:
    Dr. Kato reviewed Andrea’s images and reports, but was unwilling to resect. The main issue was the number of sattelite leasions. He didn’t think he could remove all the cancer and leave a viable liver behind. He also thought it would not be helpful to the prognosis to have surgery, but leave behind a number of cancer cells.

    Dr. Chapman regarding a transplant:
    Dr. Chapman actually reviewed Andrea for resection and transplant. Andrea however is not a candidate for either. Similar concerns as Dr. Kato for the resection. For the transplant, I found out the Dr. Chapman is following the Mayo protocol. As such, he does not consider a transplant for ICC. I asked his assistant if they had ever done an ICC transplant. Her answer was “We have never knowingly done an ICC transplant, however, we have done some transplants that we found out was ICC after the transplant occured.”

    For now Andrea is getting Gem/Cis and is reponding well (shrinkage the last two scans!) We are still hoping surgery becomes an option at some point in the future.

    Jason

    #72302
    holly22a
    Member

    y-90 was always in the mix, although in retrospect I may be the rare person who has a bad bone marrow reaction which has been difficult. Every case is completely different, but yes, resection without intent to “cure” is out there. Definitley lowers the tumor burden. I’m back to little guys in the right lobe, little tumors I wouldn’t have even thought about before.

    #72301
    willow
    Participant

    Jason, you’re a great husband and approaching this with logical and sound steps. My sister (50) has ICC and a young child (9) but won’t consider opinions outside if as tangoed docs simply because its too stressful for her to second guess her docs decisions and feels it may delay current tx. She chooses to focus on other things in order to stay positive. While her husband is supportive, he is not a scientifically minded person and seems to use the distraction method of coping as well. plus he is very busy running his business, taking care of their son and going to ally sisters appointments (45 min from home). seems like Im the one delving deeply into all aspects if this disease every day, searching for answers and ideas and what to expect. especially interested in the various treatments to control the CC. Docs have good reasons to do certain tx on some and not on others…a lot depends on location of tumors, health of pt, behavior of that particular mutation of CC etc. For example, they think my sisters cancer is a combination of CC and hepatocellular carcinoma. Also, the cancer can mutate so may respond to a particular chemo in one part of body but not another. For some, CC is very slow growing snd others seem to have an aggressive form. So much research still needs to be done!
    No longer do I expect her to be “cured”; simply my wish is to control the CC and for my sister to have as many quality years with us as possible. She was diag in late July of last year and was never a resection candidate. Gem Cis Chemo, y90 radioembolization of liver tumors and now Xeloda chemo again. Went from stage III to Stage IV in that time, few symptoms aside from fatigue that isn’t bad. Had trouble w low platelets while on Gem Cis.
    Anyway, the way you’re approaching this is same way I would…and it’s great to let your wife focus on the treatment and simply enjoying family life.
    I Will definitely add you and your wife to my thoughts and prayers for success in reaching the goal of shrinkage, a resection and remission. Stay strong and know you are not alone.
    Willow

    #72300
    marions
    Moderator

    Great job, Jason.
    Hugs,
    Marion

    #72299
    gavin
    Moderator

    Hi Jason,

    Glad to hear that Dr Kato now has all of Andrea’s info, scans etc and my fingers are crossed for some good news here for you both. Dr Kato has much experience with CC patients and has treated some our members. Stay strong and please keep us updated on everything, and remember that we are here for you.

    My best wishes to you and Andrea,

    Gavin

    #72298
    jscott
    Member

    Quick update:

    Well the CT scan was with contrast. I have contacted Dr. Kato’s office. They now have all of Andrea’s information including the CT and PET scan disks. They said it might take a week or two, but Dr. Kato would review the files. I sure hope that Dr. Kato sees some potenital in her case.

    Best,

    Jason

    #72291
    lainy
    Participant

    Dear Jason, just a note to tell you that you are doing a FANTASTIC job. Please do not question yourself, we all do the best we can and nothing is to be gained by wondering or looking back. This is a rare and scary monster and I found that your gut will not steer you wrong. Listen to your gut, it is usually right. Your idea to divide and conquer is the best. Andrea should not be using her energy on those things anyway and I feel an Advocate may see things through clearer eyes. There is no such thing as a bad call with CC, it has it’s own mind and everyone responds differently to all things CC. You have been doing the best thing by reading and learning as much as you can as knowledge is our biggest tool to fight with. BTW, I see nothing in your Posts that make me feel you are in denial as mentioned in your 1st Post. I see love and good intentions. Please keep us posted as we truly care.

    #72290
    jathy1125
    Participant

    Jason-Welcome and sorry you had to find us. I am a CC survivor thanks to a liver transplant. I will be 4 years cancer free on Friday!! I have an amazing story to share and keep it posted at http://www.catherinedunnagan.com under the telegraph link. There is HOPE.
    My miracle who saved my life twice is Dr. William Chapman at Barnes-Jewish Hospital in St. Louis MO. Dr. Chapman help develop the Mayo protocol and is the most kind, loving doctor. The one reason I am metionning his name is because last year I was honored to be invited to a lecture/ reception for him and what he talked about was getting more ICC patients into the transplant program and how they were making great strides and including some. I could fill books about this man and his heart. We have a gentleman who lives in Hawaii and flew his wife all over for treatment and believes if he had found Dr. Chapman sooner she would still be here. Dr. Chapman also is very phone friendly. We just had a young women have her life saved by a doctor who did his fellowship under Dr. Chapman and he calls him his HERO!!
    One of the miracles of my story is I grew up in California (Sunnyvale) and was very whiney about living in Midwest and it turns out the one place that could save my life was 20 mins away!! Boy did God shut me up!!
    Please call (618-567-3247) if you would like to talk or need anything
    Lots of prayers and HOPE-Cathy

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