Diagnosed with IHCC at 29-years-old

Discussion Board Forums Introductions! Diagnosed with IHCC at 29-years-old

Viewing 14 posts - 16 through 29 (of 29 total)
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  • #93668
    nykason
    Participant

    Thank you, Twinnz and Spokane. I’ll be rooting for Mr. Spokane and Twinnz. I hope that he tolerates chemo and that it’s effective.

    I had chemo today and my lab work showed that my liver enzymes (bilirubin, ALT, AST, alkaline phosphatase) are all in the normal range. They have been that way for the past 2 sessions, so I’m grateful for that. I don’t think my lab here in MI tests for CA-19 or CA-125, because it never shows up on my lab work. However, my blood work from Md Anderson last month showed that my CA-19 was <1 and my CA-125 was in the normal range. I don't really know what all these numbers mean in the grand scheme of things, but I'm thankful. My AFP last month was 9. I'm continuing to tolerate the chemo pretty well. I am keeping an eye out for any hearing loss or neuropathy. I also gained more weight. Yay! I never thought that I'd be happy to gain weight. Haha!

    #93667
    spokanemom
    Participant

    Thank you so much for sharing. I am also new to this. My husband is 42 and our children are 10 & 13. He has been in the hospital 4 weeks today after an unsuccessful surgery. I look forward to the next step of chemo, also Gemzar and Cisplatin, but we want to get a second opinion at a major medical center. His tumor has not been tested for mutations yet and I just got the form from Foundation 1 to ask the oncologist to fill out. Keep us posted!

    #93666
    twinnz007
    Member

    April keep up the positive attitude and what more reason than your 3 beautiful children and lovely supportive husband. This is definitely a horrible disease but we are not defined by our diagnosis. I’m new to the discussion board as well. We will keep fighting together

    #93665
    nykason
    Participant

    My oncologist is Dr. Varadhachary. I’m definitely willing to look outside of Houston for a hotel. Thank you! Best wishes to you as you continue to fight!

    #93664
    bgmat48
    Participant

    April, Who is your oncologist at MD Anderson? Mine is Doctor Kaseb. I have been fighting CC since May 2015. Was on Gemzar/Cisplatin chemo and now on Gemzar. You may want to check out hotels outside of Houston for your next appointment, I live 38 miles north of Houston near Conroe and it takes me less than an hour to get to MDA. All the very best xx

    #93663
    nykason
    Participant

    Thanks, Catherine! I’m hoping to have a good outcome like your mom.

    #93662
    middlesister1
    Moderator

    Dear April,

    I am so sorry you were diagnosed with CC, but as others have said, you are having good results already and it is apparent that you have a husband who is there to support you.

    The good news is that over the last few years we have seen many advances in treating CC. My mother was also inoperable, but doing well 3 years after diagnosis. I looked forward to hearing about your continued success.

    Take care,
    Catherine

    #93661
    marions
    Moderator

    April…shrinkage with the current treatment is excellent news. You are doing great and already have lined up the next course, if and when it becomes necessary to do so.
    Keep it up, dear April, we are rooting for you.

    Hugs and a special hug to your little ones,
    Marion

    #93660
    nykason
    Participant

    Thanks, Debbie!

    Thanks, Marion! And yes, my oncologist here in MI had my tumor tested and it appears that it will respond to a chemo pill should the gem/cis stop working.

    #93659
    marions
    Moderator

    April…No apologies needed, we don’t have restrictions on the lengths of postings in fact, we welcome it. I can’t add much more to what already has been set, but wonder whether molecular testing had been done on your tumor tissue?

    Hugs
    Marion

    #93658
    debnorcal
    Moderator

    April,

    Welcome to our discussion group and thank you for sharing your experience. I agree you are doing all the right things – being treated at a top cc facility, taking care of yourself, and staying positive. I hope to see continued shrinkage in your future posts.

    Debbie

    #93657
    nykason
    Participant

    Thank you, Lainy! My kids definitely keep me on my toes, haha. Fortunately, I haven’t experienced any fatigue like I used to before my diagnosis. I will definitely provide updates as they come.

    #93656
    lainy
    Participant

    Dear April, welcome to our remarkable family and the best place to be for CC support. Please remember some very important things you have mentioned: You are at one of the top treatment centers there is for CC at MDA. You have age on your side and yes, you have put on your pink boxing gloves for your beautiful family. I am so very sorry for all you have gone through but your attitude will get you far.
    Had to chuckle when you said you exercise as I can’t imagine any more exercise than chasing after 3 munchkins.
    Congratulations on the shrinkage as shrinkage is one of our favorite words. We will also be looking forward to your next scan results! Love your name, April as that is my birth month!
    Below is a site you may find helpful and please keep us updated on your progress as we truly care. BTW writing things out as you did can be very cathartic.

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

    #12839
    nykason
    Participant

    Hi everyone, I was diagnosed with stage 4 IHCC in August. After going to the ER at a local hospital here in Michigan on 8/10/16, I was diagnosed with liver cancer on 8/13/16. My husband insisted that I go to the ER after he got home from work that night and I hadn’t eaten anything all day. I tried to drink water and eat some grapes throughout the day, but I couldn’t keep them down. I threw up twice the day. I also had severe abdominal pain and right shoulder/side pain. I had also lost a lot of weight. After having my 2 younger children, my weight stayed around 135 lbs at 5’8″. I dropped down to 116 lbs. My PCP shrugged it off due to me breastfeeding.

    I noticed some shortness of breath when I would sing songs to my youngest child. I would also wake up with a really dry mouth some mornings that I attributed to my son nursing all night. I now think it could’ve a been a symptom of the cancer. I’ve never had jaundice or itchiness.

    I went to the ER thinking iwas dealing with a hernia. An ER doc, my PCP, and a surgeon all confirmed that i had a hernia. When I got to the ER, I was given morphine for my pain. When I didn’t really respond to it, the medical staff was worried. I gave a urine sample and it was clear that I was dehydrated. I had an ultrasound done and that’s when they noticed the masses on my liver. I had an x-ray that night as well. My CT scan was done the morning of 8/11 and I had a MRI after I was diagnosed. I also had a liver biopsy done which ultimately confirmed the cancer diagnosis on 8/13. I was devastated when I got the news. All I could think about was my 3 babies (6, 4, and 19 months) and my husband. I also couldn’t believe that I had such a detrimental cancer at such a young age. I don’t smoke, drink alcohol or caffeine, and I’m fairly active. To say it was a huge shock is an understatement.

    My oncologist in Michigan couldn’t determine where the primary started. He wanted me to have more tests done, (i.e. endoscopy, mammogram, and colonoscopy). My husband had been doing research on the top cancer centers and he discovered MD Anderson in Houston. So my husband, our 3 children, my mom, and I made the long car ride to Houston on 8/15. I’m actually only 15 mins away from U of M Hospital which has a top rated cancer center. However, my husband wanted to take me to the #1 cancer center for a second opinion which is why we made the drive to TX. After being fortunate enough to see an oncologist so soon, I was diagnosed with IHCC on 8/23 without having to do additional tests. My MD oncologist said that she could tell just by looking at the tumors in the liver. It’s incurable and inoperable.

    After my diagnosis and after I started doing some research, I changed my diet for the better. I wasn’t a horrible eater, but my diet could’ve been better. I’ve cut out red meat, pork, a lot of processed foods¬† and significantly reduced my sugar intake. I mostly eat organic foods and I’ve started juicing. I’ve starting eating (and liking) foods that I vowed I’d never eat (e.g., lentils, avocado, quinoa, etc.). Being diagnosed with cancer has made me make major lifestyle changes. Being the mom of 3 young children, I refuse to give up. I try to exercise at least 30 mins a day. I mainly walk on the treadmill and chase after my kiddos, haha.

    I can only thank God that I’ve been feeling pretty well since being discharged from the hospital on 8/14. I went from having stomachache 2-3 times/week to not at all. I’ve also gained weight. I’m currently around 125. I was 128 before I had my first child. I started chemo on 9/6 and my port was placed the week before. I’m on gem/cis. I have not experienced any major side effects. The only time I have nausea and vomiting is when I’m on the neupogen shots. My neutrophils have never gotten too low, but my Michigan oncologist likes to be cautious. I shouldn’t need the shots anymore since I am now doing chemo every two weeks. I have also have a great support system.

    I had a CT scan on 11/14 at MD and received my results the next day. The good news is that the tumors in my liver are shrinking. That have shrunk by 10-15%. Both of my oncologists  (MI and TX) were happy with the results. My next scan is scheduled for 2/6 with results on 2/7 (my 30th b-day). I may have to reschedule due to super bowl being in Houston on 2/5. The hotel prices have understandably skyrocketed.

    I developed a small blood clot in a vein in my right arm after having my CT scan with IV contrast last month. I think I had a bad reaction to the contrast. My doc prescribed me Lovenox and he wants me take Xarelto after I’ve finished the Lovenox. I’m not too sure about the Xarelto. The blood clot seems to be healing on its own, though. The vein has softened and my arm pain went away after a couple of weeks.

    My liver enzymes are usually normal with the exception of the alkaline phosphatase. It has been elevated since a blood test I had back in March. I’m so thankful that my blood test from 12/14 show that my liver enzymes are all in the normal range. My ALP was 102. The normal range is 27-120. I don’t know if this means anything, but I’ll take any positivity I can get.

    So sorry for the long post. I’ve never written out what I’ve gone through these past 4 months. I could add more, but it’s long enough as it is. I’m happy that I found this group and I pray that more research is done to discover more treatment options and possibly a cure for this horrible disease. I keep a positive attitude and try to remain as stress free as possible. I can’t let this disease beat me!

    -April

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