Diagnosed with IHCC at 29-years-old

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.

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!

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!