Diagnosed with IHCC at 29-years-old

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