Diagnosed with IHCC at 29-years-old

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

Viewing 15 posts - 1 through 15 (of 29 total)
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  • #93683
    mbachini
    Moderator

    April,

    I loved reading your update! Such wonderful news and hope for others. I am so happy for you and your children. Please keep us updated on next scans and I will keep you in my prayers for continued healing!
    All my best to you, hugs and prayers!
    Melinda

    #93682
    positivity
    Participant

    Wow! That’s great news April. Most have trouble gaining weight or even their appetite. How were you able to gain a normal appetite? This is the case with or without chemo treatment. Of course it can be due to age also, since you are so young so maybe it’s easier to back to your regular eating. What did you do for stomach pain?

    #93681
    nykason
    Participant

    Thanks for the support, everyone! You all are the best.

    #93680
    hercules
    Moderator

    April, thank you for sharing your fantastic story, this is what newly diagnosed people need to read. Your results are amazing and continue to be so. Your angels are working miracles for you…may god continue to bless you, Pat p.s. You have done all the right things….

    #93679
    middlesister1
    Moderator

    April-

    I guess Lainy has rubbed off on me, because what came to mind reading your post this morning is that I’m over the moon for you!!!!

    Best wishes for continued success-

    Catherine

    #93678
    debnorcal
    Moderator

    Wow, April, good for you! . Thank you for sharing your wonderful update with us. I’m sure your continued good health is an inspiration to many on this board!

    Debbie

    #93677
    spokanemom
    Participant

    Such great news!! Congratulations!

    #93676
    nykason
    Participant

    Hi everyone, I just wanted to give you all a brief update, since I’ve had 2 scans since my last post. August 13 marked my 1 year anniversary of being diagnosed with cancer. I was diagnosed with bile duct cancer on 8/23/16 when I had my first appt at MD. My MD onc told me that the average prognosis was 3-4 months without treatment and up to a year with treatment. All I heard was that I wouldn’t be here next year to see my 2nd child start kindergarten or possibly see my youngest turn 2 in April. Well, my son starts kindergarten in less than 2 weeks and I’m still here doing well. I’m so thankful to God. My oldest is going to the 2nd grade.

    I had a scan on May 8 here at home and my most recent scan was on Aug 7 at MD. They both showed that the tumors are continuing to shrink. My largest tumor measured 4.4 cm in May and last week it measured at 3.9. My AFP was 6.7 and my CA 19-9 has remained around 0.1. I had an appt on Wed with my local onc and he said that I’m their star patient. He said that they don’t see many cholangio patients who continue to show improvement. I give all thanks to God. Sept 6 marks a year since I stated chemo. I was taken off cisplatin in June and started carboplatin a couple of treatments later due to the neuropathy. So now I’m receiving gemzar and carboplatin.

    My next scan is in Nov and I’m remaining optimistic. I’m going to continue to eat organically, stay away from sugar for the most part, take my supplements, exercise, meditate, and most importantly PRAY! I have maintained my weight which I’m extremely happy about. A year ago I weighed around 114-116 lbs at 5’8. I now weigh 140 lbs. Other than the neuropathy and ringing in my ears every now and then, I haven’t had any issues with chemo. After a year, I’m just tired of receiving it, but I’m just happy to be alive.

    Also, I had another ultrasound in June on my thyroid nodule and it actually shrunk quite a bit on its own. The first ultrasound was in Dec. The doc said that I don’t have to come back until next year to check the progress.

    #93675
    positivity
    Participant

    Great April! I made sure my mom didn’t eat red meat or fried food, and reduce sugar intake. I also included supplements and daily lemon water and ginger. Hopefully, you will come across some successful clinical trials.

    #93674
    nykason
    Participant

    Thank you, Lainy and Mich!

    Positivity – Yes, I’m trying to hit this cancer from all directions (i.e. prayer, diet, exercise, and treatment). I am eating some meats like organic chicken, turkey, and some fish. I’ve stopped eating red meat, pork, and fried foods. Basically, most of the foods that I used to love before, lol. My docs haven’t mentioned immunotherapy, but I’m willing to look into it to see what it’s about. And, thank you!

    #93673
    mich_clayton
    Participant

    Great news, April! Keep plugging along!

    #93672
    positivity
    Participant

    Hello April,
    I noticed you mention lifestyle changes such as proper nutrition which is no processed foods, no meats, and reducing sugar. Of course including exercise! That’s great that chemo is working for you. Are you going to look into immune therapy treatments? I would love to see changes in treatments for CC, giving more options. It would be great if it is a condition that can be controlled rather than a cancer.

    Keep up the good work in healing! You are doing the right thing by participating in your health rather than only relying on the chemo.

    #93671
    lainy
    Participant

    Oh, April, what a fabulous report. LOVE the GREAT news! Spring is around the corner and so glad to hear your are springing forward in the right direction. If I could, I would turn cartwheels for you! Keep that great news coming and it was good to hear from you and I can see your smiling face!

    #93670
    nykason
    Participant

    Thank you, Joe! I am praying for your mother as well.

    My husband and I traveled to MD in Houston this week for my second CT scan. My scan was on Feb. 6 and I received the results on the 7th, which was also my 30th b-day. The great news is that the tumors have continued to shrink. The biggest mass has decreased in size by 25-50% and most of the smaller tumors have decreased by 50%. That was the best b-day gift that I could have possibly received. My bloodwork also looks good. My AFP has gone down from 9 to 6.7. The CA-A 19 is 1.1 and the CA-A 125 is 138 which is also in the normal range. I’m so thankful to God that everything is going well despite by diagnosis. I’m continuing to do well with chemo with no side effects other than my hair thinning and occasional ringing in my ears. I’m praying that my next scan will show that the tumors are all gone.

    My oncologist also told me that I could be eligible for some clinical trials in the future due to the two mutations found in my tumors. There is a trial opening in a week; however, it is for progressive disease, so I’m not eligible.

    I pray that everyone here (and your loved ones) is doing well!

    #93669

    April, we are all here for you and praying for continued success. I too am new to all of this as my 61 year old mother was diagnosed with IHCC just 2 months ago and has flipped our lives upside down. Keep the positive energy going as that is most important! Let us know if you need anything. Regardless we are here with you and sending our prayers.
    Joe

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