Discussion Board Forums Introductions! Newly Diagnosed

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  • #75802
    kris00j
    Participant

    I forgot. My surgeon is Dr. Yuman Fong. I LOVE LOVE LOVE him!! He is the main reason I stayed at Sloan Kettering so long.

    #75801
    snowbird
    Member

    Thank you, KrisJ & Lainy.

    #75800
    kris00j
    Participant

    Judy, Dr. K sees more than 50 patients a day. On average, I saw the team (who are great) and they asked all the pertinent questions… How are you feeling?, bathroom issues?, dizzy?, nausea?, etc… Then they went over it with Dr. K. She then would come in and either say “everything looks good. We will continue.” Then exit. Or “there’s a problem.” It everything was good, she was an 8 second onc. If there was a problem, she might be a 10 min. onc.
    I always attributed her lack of compassion to the fact that she pretty much deals with patients with a poor prognosis. Many of her patients are sick. I figured she didn’t want to get to know anyone when many of her patients don’t last a year or more….
    I started to feel that she lost interest in me after the pump proved too hard on my body. So I eventually changed to another facility where I love my onc! It is so refreshing!
    Good luck with your decision. I am not trying to sway you one way or another, but be prepared for Dr. choi’s description to be politically correct.
    Take Care,

    #75799
    snowbird
    Member

    Thanks for the replies. Yes, this is the pump Dr. Choi was talking about. He also mentioned Dr. Kemeny. While Dr. Choi has great respect for her intellect, he insinuated that she wasn’t much of a people-person. Dr. Choi told us that Dr. Kemeny sees 50 patients a day and only spends 10 minutes with each one. There is a surgeon in Tucson that does this surgery also…. but he’s quite new at it and says it sounds like one would want a very experienced surgeon for this.

    Yes, we are definitely enjoying the AZ winter. We are so blessed to be able to spend our winters here!

    Take care!
    Judy

    #75798
    kris00j
    Participant

    Hi, yep I have the pump but I no longer use it nor do I have Dr. Kemeny anymore. I am so glad to read of good results! And you must be enjoying being away from those ND winters!!
    If you check my name you can find a topic about the hepatic liver infusion pump. You can also call and ask me anything you want to know about it. And I will tell you this… I LOVE LOVE LOVE Dr. Fong (my surgeon), but don’t miss Dr. Kemeny at all. She is brilliant but unfeeling.
    Briefly… It is a pretty major surgery, with restrictions for the rest of my life. No baths, jacuzzis (anything to raise body temp), running, scuba diving, etc…
    The treatment is easy. 5-15 min. to empty and replace fluids in the pump. Maintenance is every 8 weeks. While getting chemo, it is every 2 weeks. If you can get the pump working, the chemo used is really really strong, so it kicks butt! Unfortunately for me, it proved too toxic for my body. There are others that could handle it, though, and got wonderful results.
    Call or email me and I can give you more info. Entail is kris00j@gmail.com and phone # is 267-625-9873.
    I hope this helped a little.

    #75797
    lainy
    Participant

    I believe that Kris, our Moderator has or had that Pump and Doctor.

    #75796
    mcwgoat
    Participant

    Hi Snowbird,

    I’m being treated at Sloan Kettering and I think I know the pump you’re talking about. It’s not part of my treatment but I’ve heard about it through Sloan. If we’re talking about the same thing, it’s called Hepatic Arterial Infusion (HAI). There’s a medical oncologist at Sloan, Dr. Nancy Kemeny who’s office may be able to direct you to the surgeon who does it at Sloan.

    If you go on the Sloan website (MSKCC.org) you can look up Dr. Kemeny’s contact Info.

    I hope this helps.

    Peace,
    Mary

    #75795
    lainy
    Participant

    Welcome back Snowbird. Is it not beautiful here! I am glad to hear Ron is doing so well as you know we love the word Shrinkage and the word Stable.
    If you ever feel inclined to meet up somewhere in between let me know. In the meantime enjoy Ron’s good report and the weather. Thanks for updating us.

    #75794
    snowbird
    Member

    It’s been a while since I’ve updated Ron’s status. Before we left ND in late October, Ron’s ONC did a new CT scan. This was after only 5 chemo treatments of Gem/Cis. The scan indicates that the chemo is definitely shrinking the large tumor (now 8.2 cm), down from 10 cm from the original scan. The other small lesions have remained stable or shrunk some. This sure was great news. Although we have been happy with the treatment so far, this ONC gave us very, very little hope of Ron ever having surgery or any other treatment, other than palliative chemo. On Oct. 28th, Ron saw his new ONC in AZ for the first time, Dr. Choi at the AZ Center for Cancer Care. And wow, what a difference in attitudes! He specializes in hepatic cancer and stated that he’s had 4 patients with CC in the past. He mentioned all kinds of treatments that he will offer Ron in the event that he will need them. Our heads were spinning when we left his office. Instead of being told that Ron might live another 5 years, we were told that NO ONE comes into this world with an expiration date and he will do anything he can to keep Ron alive and feeling good.

    We were very impressed with Dr. Choi. He came highly recommended from my hematologist here in AZ and I can see why. The infusion lab is much different from what we were used to back in ND. Now I know that they spoiled us back home! Here there are no volunteers that bring you snacks, soda, water, ice cream, etc. At the AZCCC infusion lab, it is a community setting where all patients pretty much sit around the oval shape of the room. There is no privacy, no personal tv/headphones, and no way to dim the lights in your cubicle, which is what it was like in ND. Ron doesn’t seem to mind and maybe he’ll meet some new friends this way. Both places take good care of him so no complaints with this part.

    Dr. Choi mentioned something that I’ve not heard of before….. perhaps some of you have??? He said something about a Dr. at Sloan/Ketterling in NY has invented some type of pump that they surgically place in the abdomen. He mentioned that there are only 3 doctors in the US that have been trained to do this surgery. One of those doctors is in Tucson, but Dr. Choi said that it is a very touchy surgery and he would recommend going to S/K if we would opt to have this surgery. He mentioned something about “finances” so I’m sure the procedure is not covered by insurance. I am going to have to ask more questions about this next time we meet. We were just so overwhelmed with everything he was telling us at that first consultation that neither of us could remember what it was called. He talked about emobilization, radiation, etc.

    Ron has been doing quite well with the Gem/Cis treatments so far. Last week after we flew from ND to AZ he ended up having nausea for 3 days, before he had his next chemo treatment (last Friday) and he’s been good ever since. He’s been fighting a head cold for about 10 days now and is almost over that. This really threw him for a loop. It seems that he feels great on days 1-3 or 4 of chemo and then exhaustion sets in. So far he has never experienced any jaundice but he has some itching on his lower extremities. So overall, he’s handling the cancer and chemo quite well. His liver enzymes are normal now, but the CA 19-9 is still quite high. Hgb has been staying steady around 9.0. He’s had 2 shots to boost his WBC count and platelets haven’t been affected so far.

    Dr. Choi’s plans are to continue the chemo treatments for 4 more weeks with one week off in between and then do all new scans, including a PET scan. Then we’ll see what he has in mind. Could be a merrier Christmas than what we expected!

    #75793
    lainy
    Participant

    Hi Snowbird, sorry I saw your other post first so now I will try to answer this one. YES, we have had members DX Stage IV had chemo and were able to then have surgery. We have learned not to listen to time frames as we were not born with expirations dates stamped on our feet. One needs an ONC and a Hospital who are experienced in CC. Like I said we have had members in Stage IV who did get surgery after chemo.
    We always urge 2nd and 3rd opinions. We never know how long the treatments take as it depends on Scans to guide the ONC and then it is his decision. One learns to be very patient with CC and you must be very strong!
    I am in Gilbert the other side of Phoenix but it doesn’t matter if you care to meet we can meet 1/2 way. I am not familiar with ONCs in the Sun City area. Downtown is not that far with our wonderful expressways. Let me now if I can be of any further help.

    #75792
    pcl1029
    Member

    Hi,
    Tobe honest,since you husband ,Ron, had tumor involvement in both lobes of the liver. The best answer to question #1 is to get rip of the small tumors in one lobe by RFA ablation if the size of each <3cm each and the number is no more than 3-4 tumors. It is possible that if the systemic chemotherapy works well, you may not need the RFA treatment and , the little tumor will be gone too and become clear of tumor of the one lobe. If that will be the case, and your big tumor is shrink big enough too because of the chemotherapy works, then resection may be possible after they try to regenerate bigger your healthy part of the liver; and that ,I think will be the best outcome.
    For question#2, the answer is no.
    For queation#3,for adjuvant chemotherapy usually will administer till tumor progression or untolerable side effects occur. In general, 6month to a couple years with chemo breaks in between.
    God bless.

    #8929
    snowbird
    Member

    Hello Everyone! I am so glad that I found this website. My 59 year-old husband, Ron, was recently diagnosed with Stage 4 inoperable Cholangiocarcinoma, which has spread to the liver. There was no other presence of cancer in the body according to all the scans. One lesion on the liver was 10 cm on the original scan with several smaller lesions on the other lobe. It took nearly a month to determine the origin of the cancer and finally a regimen of chemo was started this month. Before chemo was started Ron was nauseated most of the time, smells bothered him, he suffered from pain, and lost 15 lbs. After his 1st chemo treatment he felt great. Pain and nausea are rare. We live in a small rural area in ND and are seeing an Oncologist in Bismarck, ND, whom we have a lot of faith in. However, he is telling us that the cancer is not curable and chemo will only prolong Ron’s life for 2-5 more years, unless of course he can get his cancer into remission. Dr. was impressed how much the lesion shrunk after only 1 treatment. If blood levels continue to look good, Dr. may increase his chemo treatments to once a week for 3 weeks with 1 week off, instead of the present 2 weeks on, 1 week off. It seems to me that since the cancer was not found in the lymph or anywhere else other than the liver, Ron’s chances of survival should be higher than average. Dr. did refer us to Mayo Clinic in Rochester for a 2nd opinion but Mayo wants Ron to go through 3 months of treatment and have new scans done before coming to Mayo. In 5 weeks we’ll be leaving for our winter home in the Sun City, AZ area and will need to start with a new oncologist. None of our doctors in Bismarck are familiar with any oncologists in the Sun City area. Does anyone in this Forum know of a good hepatic oncologist in this area? Here are some other questions I have:
    1. If the treatments shrink the tumor enough can a resection usually be done?
    2. If the treatments are successful is it necessary to get another opinion?
    3. How long do patients usually undergo chemo treatments as in Ron’s case? Months? Years?
    Thank you in advance for any feedback. I’m learning a lot reading everyone’s topics. Godspeed!

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