Elizabeth’s 6 Month Story
My CA125 Blood test story started when I was 31 years old. I was having problems with my bowels and had to go to the bathroom every time I ate. I went to my HPV Variant Test doctor, who ran multiple repeat exams and could not find anything. He finally ordered a laparoscopy to be done, and they found my cancer.
I had a total hysterectomy and 6 months of treatment with carboplatin, and I was diagnosed as cancer-free. Following up after that, being 31 years old, I did not think anything about having had cancer. I went on with my life and then gave up going to the doctor. I did not see any reason to anymore; I was tested as cancer-free, but I forgot about the HPV Virus effects.
When I turned 40, I started having my yearly Well Woman and mammograms done, and everything was fine, including the one I had in January 2012.
May 29 2012
I woke up wheezing and had problems breathing and could not get in to see my family dr. as she was on maternity leave and all other doctors. We were full for the day. I decided to go to the walk-in clinic for an ovarian CA125 levels Lab Cancer Test. Something told me not to wait for an opening another day.
I thought it was bronchitis, maybe, but it was more than likely an asthma attack because the pollen had been high lately, and I had been doing a lot of walking.
When the CA125 Doctor came, he asked some questions and said he wanted to do a chest x-ray to rule out a lung clot since I had had cancer before. He was looking at the results on the lighted screen when I came out from getting dressed, and before he could shut the light off, I saw a large round spot on the right side; believe me, it was noticeable.
The hospital experience
He said there was not a clot, but he did want me to go to the ER and have a CT done to make sure he had not missed something and also to have a breathing treatment and a CA125 Clinic visit. He told me I was not to go shopping or home. For that matter, he wanted me to go straight to the ER.
When I got to the ER, they did a CT, and they gave me my breathing treatment and an injection for pain. Which, by the way, did help me feel better. The dr. came in and said that there might have been a little bit of lymph node enlargement and wanted me to get in and see my family doctor within the next couple of weeks.
I have never had a doctor. Tell me anything except your convenience to see a doctor. I knew something was up again, but I am still not sure. I have some ideas.
May 31, 2012
I was able to make an HPV Appt with a family dr. for the next day, and while in there, I had another asthma attack and had to have another breathing treatment. She then ordered a PET scan; this is where the warning bells went off. I was lucky they had an opening the very next day.
June 6, 2012
I’m back to get HPV results from the family doctor. I forgot to tell you I knew what was happening before I went in. The doctor showed me that four different spots on the scan were malignant. He wants to send me to the oncologist, who says he will see me during his lunch break. I decided to go the next day so the doctor would not have to give up his lunch.
June 7, 2012
Saw an oncologist today. I have 4 spots: the lung, the right pelvis, the base of the spinal column and the chest wall. My dr. Does not think this is correct as I have no symptoms, do not look sick, and it has been 17 years since I first had a test for HPV derived cancer; he is even wondering if it was ovarian back then, but of course, it has been so long ago they hospital is having problems locating my files. Dr. decided to do a biopsy on the pelvis mass to make sure first, and he will make a CA125 sample at my husband’s insistence.
June 11, 2012
I am at the hospital to have a CT-guided biopsy done on my right pelvic mass. The radiologist says, “Okay, let’s get you ready for the lung biopsy, so we must stop there and get everything right. It turns out he will not do the pelvic mass because it is right next to an artery, and he does not want to take the chance of puncturing it. The test was not the most fun, but the nurse, tech and dr. were great. The radiologist had a hard time getting any samples but did get a little bit that was sent off, but it came back inconclusive.
The oncologist’s office called and scheduled me to see a thoracic surgeon to have a surgical HPV Cancer biopsy done.
June 14, 2012
Saw a thoracic surgeon today, and after he spoke to a radiologist who did a lung biopsy, he decided to do his biopsy on the chest wall.
June 18, 2012
Had surgery on the chest wall today, and later tests confirmed that they removed part of the CA125 tumour. The lab in the hospital says that it is cancer, and the thoracic surgeon tells me this when he visits after surgery. An appointment is made to see an oncologist on 6/20/12 to get results.
June 20, 2012
CA125 Lab results still need to be received. The doctor cancelled the appointment and made it for 06/28/2012.
June 28, 2012
Dr. says that yes, I have cancer. Oh, and my CA-125 is 89, which is normal for 35 and under. He went over all the life expectancy stuff that my husband was asking for, and then we got down to treatment. He said we could do nothing and see what happens, or we could start treatment. I said I already knew what I would do, and my husband said he thought we should discuss it like there was anything to discuss.
I know he wanted to be involved in the decision-making about the HPV Infection effects, but my mind was already made up, and I decided to make it. That may seem mean, but I did not want to wait another minute. Now we need the port-a-cath. I did not go with one the first time, but I will never go without one again. They make it so much easier. So, back to the thoracic surgeon, but we have a problem: my thoracic surgeon will be out of town on Monday, so he can’t do my surgery; we have someone new to do it.
So, I see the surgeon to get the information I need. While walking down the room to see the new HPV Doctor, I see my surgeon and tell him I am mad at him because he will be out of town on Monday and can’t do my surgery as promised, but he said he could do it tomorrow, Friday. Happy! Happy! You know how it is when you find a doctor. You like even if you have only seen him 1 time before.
It has been one month since I went to the walk-in clinic. Today, they are inserting my port-a-cath. I won’t need general anesthesia, but they will sedate me for a while.
July 3, 2012
I went to see my oncologist today for blood work and to find out about my first chemo treatment. The CA125 and CBC blood work is fine, and treatment is scheduled for July 5, 2012. I will get treatments every three weeks, and after the third one, he will rescan and see if there is any change, and if not, he will try a new medicine.
July 5, 2012
I am here, and guess what? My HPV orders have not been signed. My husband is about to blow a gasket, and I am one of those who says he will sign them when he gets here. So the nurse takes us back to at least let us know what is going to happen and give us info on the medication that I will be taking. Carboplatin: I have had one before, 17 years ago, but the taxol is new, and it can cause an allergic reaction within the 1st 15 minutes of getting it if a person has one, so they have to watch me for the 1st 15 minutes once they give it to me.
My oncologist finally showed up about 1/2 an hour late, but my CA125 Kit orders got signed, and he apologised profusely. The doctor had told me I would lose tufts of hair, but the nurse told me I would lose all of it. We will see who is right. These infusion nurses are great. A 6-hour day turned into an 8-hour day with the delays, but it is done. I can now go home and see how I feel.
For the next couple of weeks, I will get labs done once a week and then have my next treatment. So far, no hair loss, but my scalp itches like crazy. I did not get in to get my haircut beforehand, so strands of hair fall out, and it drives me nuts, so I sit and run my fingers through it, and even more comes out, but not enough to make a difference.
July 26, 2012
2nd treatment, and guess what? My hair is coming out in clumps exactly 3 weeks after my 1st treatment. I will be bald within a few days; the nurse was right. My brothers and sisters have asked that we move to Fargo to be closer to them and that if we need any help, they will be there for us. Our son has been helping, but he has to work, and he can’t always be there, so we decided we would, and this way, I could go to Roger Maris HPV Cancer Center in Fargo. I am so excited. I very seldom get to see them. We have moved to Fargo, and I can see a new oncologist, Dr. Preston Steen, on Friday, August 17, 2012. This is the day after I should have had my 3rd treatment, but what can you do?
August 17, 2012
I am Meeting Dr. Steen for the first time today with my husband, sister, and nephew. All we do today is talk about HPV and his philosophy of CA125 kits with treatment and what he thinks. He says he will do a total of six treatments, then rescan to see if there are any changes, and then decide if they will change meds and a CA125 Blood report every 3 weeks. He agreed with my first oncologist that I did not look sick or have any symptoms. So, we scheduled my next treatment for next week.
August 23, 2012
1st treatment at Roger Maris and get what. I thought the infusion nurses were nice in Bismarck; they hold nothing on these nurses. These ladies are great. When I left after treatment, they hugged me. I love it. I have to have an xgeva and last injection after my treatments, and they sure don’t make me feel good. Have to be honest in lots of pain from the meds, but expected that. Day 9 and day 15 are usually the worst. The start date is usually day 10, like clockwork, but it can fluctuate.
November 9. 2012
I had my 6th treatment on Oct. 25, 2012, and it is time for another scan. Will get the results on the 15th when I am scheduled for another treatment.
November 9, 2012
I got a call from the nurse practitioner. The results revealed that the CA125 tumour in my chest wall is gone. They do not know if they removed the entire thing during my biopsy surgery or if the chemo killed it, but there is some fluid around my lungs and some lymph node change; otherwise, all else is the same.
November 15, 2012
I saw Dr., and he reiterated the same thing and said we would continue with the last 2 treatments as I can only have 8 of this combination. He will reduce it as my hands and feet are very numb.
November 21, 2012
I had my 8th treatment the other day and am now here for my rescan. I will get the HPV Lab results after Christmas on Dec. 28, 2012
December 28, 2012
Dr. is very pleased. The rescan shows that the fluid around my lung has disappeared, and the lymph node and all other tumors have shrunk. We will continue treatment in 30 days as he wants my body to recuperate and see if some of the neuropathy disappears. My CA-125 Home levels are down to 19, at its all-time low during treatment. The dr. did a CA-125 exam every 3 weeks, and during that time, it went up a little bit 2 times but went down little by little every other time. So, I see the results from my HPV doctor. On Jan 24, we will start the new treatment. I believe we will be doing some pills.
Overall, I am very happy with the results, but I also know that they can change at any time. I am planning on at least another 17 years.