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nykason

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Viewing 12 posts - 1 through 12 (of 12 total)
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  • in reply to: Diagnosed with IHCC at 29-years-old #93681
    nykason
    Participant

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

    in reply to: 6 years cancer free #95451
    nykason
    Participant

    That is great news, Susie! It definitely gives me more hope than I already have.

    in reply to: Diagnosed with IHCC at 29-years-old #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.

    in reply to: Good Scan Results – Diagnosed 2 years ago #93277
    nykason
    Participant

    That’s great news,Carla. I was diagnosed with inoperable IHCC this past August. I have also changed my diet for the better and I feel really well majority of the time. I also exercise more. All of my scans have shown that the tumors have been shrinking. I’ve been on gem/cis since I started chemo in Sept. I also pray multiple tones a day. I’ll pray that your husband continues to do well.

    in reply to: Chemo question #94101
    nykason
    Participant

    I started off receiving gem/cis on days 1 and 8 of a 21 day cycle. Since December, I’ve been receiving it on days 1 and 15 of a 28 day cycle. I haven’t had many side effects other than some hair thinning, tingling in fingers and toes, and ringing in my ears. I cut back on how often I was receiving the gem/cis due to the tingling in the fingers and toes and ringing in the ears. I don’t have any tingling now and I rarely will have the ringing in my ears. I have 3 kids and I am able to care for them without any issues. I don’t have any fatigue, nausea, vomiting, diarrhea, etc.

    -April

    in reply to: Diagnosed with IHCC at 29-years-old #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!

    in reply to: Diagnosed with IHCC at 29-years-old #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!

    in reply to: Diagnosed with IHCC at 29-years-old #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!

    in reply to: Diagnosed with IHCC at 29-years-old #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!

    in reply to: Diagnosed with IHCC at 29-years-old #93663
    nykason
    Participant

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

    in reply to: Diagnosed with IHCC at 29-years-old #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.

    in reply to: Diagnosed with IHCC at 29-years-old #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.

Viewing 12 posts - 1 through 12 (of 12 total)
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