NEED ADVICE PLEASE: 2008, AGE 49  

First of all, I would like to commend you all for your strength and courage while going through this terrible disease. I have not been diagnosed at this time. My HPV Type Test result is clear, but I am seeking advice from any of you on what I should do at this time. I’m 49 and have had abnormal bleeding between periods for probably 15 years. After some CA125 Lab testing and going through multiple doctors, I decided that maybe they were right in suggesting it was normal.

After April this year, I didn’t have a period for 3 months, and then it came again in mid-July. A few weeks after my period, I started having spotting, and at the end of July, I started bloating (it looked like I was 5 months old) and pain for 2 days.

The first day, the pain was mild and didn’t last long, but the day after, I ended up in the ER because the pain was worse, and the bloating was worse, also. They did blood work, urinalysis and a CT of the abdomen & pelvis, and after being there all day, the only thing they could tell was I might have a UTI and prescribed antibiotics.

The follow-up

I followed up with my Internist two days later, as suggested by the ER. After reviewing the HPV Urine test results, he said the culture was negative. The CT showed hemangioma on the liver and kidney, which was not uncommon and benign. He then ordered a TVU and CA125 Home kit. TVU was normal, and CA 125 was 27.1, so he wanted to repeat it in six weeks. I had that done two days ago, and it is now 24.3.

Significant bloating/swelling in my abdomen continued, and I am not able to fit into most of my shorts & and pants. Recently, I had 2 weeks of mid-month bleeding, not just spotting but including a lot of clots. I made an appt. with a Gyno, but since I haven’t been to one in about 10 yrs. (had HPV Pap smear done by a primary doctor every year) I can’t get in until Oct. 13th. I feel like my body is telling me something’s not right, and I want to keep on top of the situation, but I’m frustrated that all the HPV lab tests are normal. Please let me know if anyone can give me their opinion on what I should do now. I am scared, but it’s all in my head. Thanks so much, Harlyn Salts

MY MOM DEB: 2008, AGE 30   ▲

Sep 1, 2008 | Age: 30

It was 1998. I was three years old. I only remember a little. All I remember was after her CA125 Blood level result, everyone said, “6 months”. She was my Mom, the only one I had. While most kids dreamed of being a vet or teacher, she wanted to be a mom. So she had me, just me. Everything about our lives seemed to be perfect. I believed in fairy tales then. That was before my life turned around. The HPV doctors soon became my family. I was living with my grandma, and my Mom was dying. No one told me.

6 Months

That’s what everyone said. I found that out when I was 11, but now, at 13, I know. She lived; she said she just wanted to see me go to school and did.

She wasn’t getting worse but better well as much as she could. Over the next 6 years of my life, we did EVERYTHING! We went camping and even to Disney World. She was sick, but living me my Mom and my dad were living together. Even though she was sick, we made the best.

Every time

My Mom spent LOTS of time in the hospital, and I made friends with the nurses and doctors. My Mom brightened the room. She was the strongest person on earth. Every time she went into the hospital, I would go into the waiting room and pray, praying that god would make her better and we would be happy again.

The right thing seems wrong.

Everything was going downhill after 2004. Mom could no longer walk or eat on her own. We both cried a lot. My dad would stay up until 4 am cause that’s when she felt good. But then, one night, it wasn’t good. We took her to the hospital, and she could barely talk. I went into the waiting room and prayed to god not to make her better but to do the right thing.

It was Over

She died the next morning. I was 11. She was supposed to live for 6 months after getting her CA125 Marker result. My Mom made it 8 years! I am now 13 and living with my dad. We both have some tough times, but we know we have the strongest angle watching over us daily, and sometimes we must do the right thing.

Dedicated to my Mom, Deb, 1966-2005. I love you, Mommy

SHERRY: 2008, AGE 61   ▲

Aug 16, 2008 | Age: 61

Some of my story was accidentally left out, so here goes:

After returning from Florida at the end of April, I went to my Pcp for a laxative since I had returned bloated and constipated. He gave me a prescription, and I tried it for three days. Then I knew there was a more serious problem. My variant identified a serious DNA type.

I returned to the doctor, and he did a CA125 Ovary Marker Cancer Test. It was 19,000. My doctor said that on a scale of 1-10, I was 12—way off the charts. I had a CT scan, and they sent me to remove 5-6 litres of fluid and biopsy the fluid. (At least I took off 12 lbs. Ha!)

Next, I was sent to a haematologist/oncologist. He told me I would need chemo, surgery, and more chemo. I chose a gym/onc/surgeon and went to see him. He agreed with the first doctor. I underwent 4 carbo/taxol treatments, then had a complete hysterectomy, removing everything I did not need to live. My hema/onc followed that with 5 more carbo/taxol treatments.

Moving on

In February 2008, my Level Marker was 10. We were all delighted, and I was put on a schedule of seeing one doctor, then the other doctor, skipping a month, etc. Anyway, in June, the 10 had jumped to 40. This caused a little alarm but was not earth-shattering. Unfortunately, on August 1, it had jumped to 92, and I was beginning to feel some symptoms.

Therefore, my doctors talked and decided it was time for more carbo/taxol (luckily, it had been 8 months since my last CA125 Test and chemo so that they could use it again). My body seemed to respond well last year for some reason. They plan on 3 treatments after the positive HPV Urine result. If these do not work, they will move on to some of the many other available drugs.

I had my first treatment yesterday, Aug. 15, 2008. I am beginning to feel a little under the weather, but do not expect the worst for another 24-48 hours if I respond like I did.

The above should have gone between being sent to San Angelo and In June…. Thanks, Sherry