Recurrence with shockingly high CA-125

[Chanterelle]

I am beyond despondent. I am in Canada and I feel so down right now. I need a lot of support because I need someone who can encourage me or who has examples of success.

I have a few other posts but I didn't update them yet. Don't have much energy to do so.

I am having a recurrence. It has returned in the peritoneum (nodules, little tumours). I had been in remission close to 6 years and was feeling great. I was diagnosed in April 2017 with OC and it was grade as a 3C. I did well with the carboplatin and paclitaxel. At the time that I was diagnosed, I went to the hospital because I was getting sicker and sicker. They had taken my CA-125 and if I recall it was about 1200 but when I started getting treatment (they drained me of about 10 litres of fluids, did more tests at another hospital, had to wait for the biopsy etc so only started chemo in May 2017). By May 2017, when they took my CA-125, it had gone up to 2800. I was shocked at how high it was but it did come down to 800 after the third treatment just before the operation. A month after my operation, it was back to normal and I did 3 more rounds of chemo. I also found out the following year that I carry the BRAC2 mutation.

Now, with the recurrence, which came on very fast because it was my upper torso that was getting tight, I had just come back from the doctor and she had felt my entire stomach and even said that my lymph nodes in my stomach were normal sized (I am very slender). I went back later to see her as my stomach was buffier so she had ordered an ultrasound. I took it upon myself to go see my oncologist the next day and he couldn't feel ascites at the surface but sent me to a CT Scan.

Sure enough, it has come back and the report says thickening of the peritonium and I didn't have all the details but when they sent me back for more tests, the radiologist told them that there was more details so there are a bunch of nodules and little tumors on that lining in the stomach. It was also confirmed that there are ascistes and as my stomach was rapidly getting larger, I asked to be drained. They took out 4,8 litres this time which shocked me because I am very slender. I was weighed at 103.4 pounds at the doctors but I know that I was only eating once a day because I was scared to eat (it would hurt after because it pushed on my stomach).

I called the oncology nurse that I am friendly with because I had questions. She is very kind to me. I asked her some questions about constipation because I am unable to go without any help. I said that I didn't want to know my CA125 as I didn't ask. She said the doctor's weren't basing themselves on that but the cat scan for the plan which is 3 rounds of chemo, a cat scan and then probably 3 more rounds of chemo. Well, I asked her to give it to me and she said that it was over 5,900!!!!!!!!!!!!!!!!!!!!!!!! How can that be that I am not even feeling sick. How can it be double from when I was so sick that I could barely walk and could not eat and was so bloated. This was taken at the end of June as well before I was drained. They are basing themselves on that one and did not take another one when I did the chemo yesterday. They will take one the day before my chemo.

I am so scared right now. I just need people to tell me experiences about their recurrences that had super high numbers like that. Please help me. When I did the CT scan, the requested one for the pelvis and stomach when the oncologist wanted a full one so I had to go back to do one for the chest and lungs last Friday. I have no issues breathing, shortness of breathe and walk several kilometers without any issues. I don't have the results of that either.

[Beaver54]

hi chanterelle,

I’m so sorry you are feeling this way. I don’t know if I will be much help but I hope I can be if some reassurance. I was diagnosed early April with peritoneal/ovarian stage 4 advanced. My CA125 at that time was nearly 7000, it went up to 9000 before my first chemo and then 11000 after it. After my second round it went dow to 9000 agsin. I have been so panicked about my levels as I’ve not seen sny other recordings of such high levels. The nurses were encouraging saying they don’t really take much notice of the levels as many things can raise them. They said yesterday that it was going down now so that’s all that matters. I know my cancer is more advanced than yours, but I would try not to worry too much. Easier said than done I know.

My Ascites went after the 1st chemo which encouraging, without the need for a drain. I am on the same chemo as you, with the addition of Avastin.

Good luck.

Wishing you well x

[Gonewith]

Hi, I was diagnosed last Febraury with OC. After two weeks when I suddenly started bloating like a six months old preganat. CA125 was over 5000 amd one week or so till had my chemo raised to 7000. Now finished 6 cycle of chemo is down to 38. Im having OP in 6 weeks time.

[Motiva]

Morning Chanterelle,

How upsetting after such a long period of normality.

My CA125 is in the 1000s too. I was told and read that it increases with OC and inflammation. They are not proportional to the volume of tumour. Response is assessed from CT and CA125.

Since your initial diagnosis there are more drugs available especially for BRCA mutations.

Your nurse may be able to guide you through this before you see the oncologist again.

Sending hugs to my favourite country. PEI and BC are special places for me and I hope to get back when this is under control.

F x

[Kjpip]

Hi Chanterelle, the important thing is whether the numbers are coming down, not what level they're at to start with. Try to focus on the fact that you responded really well to chemo 6 years ago, and your ca125 went down to normal levels from a high number before, so you will most likely do the same now. There are also more drugs available now than 6 years ago - I don't know what the situation is in Canada but in the UK there are a range of options for maintenance treatment once your main chemo has finished, especially if you're BRCA2.Concentrate on looking after yourself through your chemo, you've done this before, you can do it again. Best of luck with it all xx

[Ruebacelle]

Hi Best not to pay too much attention to CA125 numbers. I for instance have 2 large tumors in my liver and my CA125 is never more than 38. Best to stay calm listen to the people you trust and continue with the program

Good luck

[RoseMS]

I was feeling my normal self prior to sudden diagnosis, and the CA125 bloods came back at 5,000. I suddenly became ill with acites and had 3 drains prior to chemo starting. CA125 normal after treatment. Nowadays there are PARP inhibitors after chemo which work especially well with BRCA positives so thats an important bonus for you. Good luck, x

[Lyndy]

Hi Chanterelle

I am sorry to hear that you are having to face this all again. I am not sure why some of us have numbers in the 1000s and others have small numbers but with lots of mets. It doesn’t make a lot of sense.

Suggest you focus on the locations where you know the cancer is active and watching them shrink as chemo gets underway. The ca125 will come along as the tumours are destroyed.

Wishing you all the best as you embark on this…everyone on this site will be rooting for you!! xxx

[delia2]

Hi Chanterelle (what a pretty name). Please don’t worry too much. The fact that you went six years already is very hopeful. You should respond well again to chemo and then will likely go on a PARP inhibitor for maintenance and it should work well because you are BRCA positive. I had a recurrence 8 months after frontline but have now been ned for three and a half years.

[SopSinger]

The absolute number of CA125 level is pretty much meaningless. I have heard of CA125 levels above 20,000 from ladies who have subsequently gone into remission. It's the trend during the course of treatment, or doubling more than once in the case of recurrence, that is important. It sounds as if your oncologist has a plan and that's the main thing. Ignore the numbers, they are not helping you. Focus on what is being done to help. Sending hugs!

[Rai_Nakoa]

I myself had been diagnosed in Stage 4 inJan 2021…initial CA125 was over 16,000🤷‍♀️. It steadily dropped after each chemo treatment and was still over 500 after 6 chemos and 5 drains of 5L each drain. It dropped to the 50 range just weeks after surgery and I now maintain a range of 19-23 for the past 2 years.

As I understand it… the CA125 number is not really relevant to the status of the amount of cancer, etc…. And it is a general marker that they use to see progress of treatment results basically.

Not all of us have an increase in CA125…many ladies here have stage 3 or 4 diagnosis and their CA125 was in a normal range ….so I don’t think there is to be too much concern placed on the number itself as it’s is not always a marker.

You will likely have a very good response to chemo again as it has been so long prior to reoccurrence… try to focus on that and see where throngs go each day (I know….much easier to say it than do it…😬)

Sincerely….from your fellow Canadian (Alberta)…

Trish

AKA: Zena - Princess Warrior

🥰

[Tealgirl7]

Here is a good luck story for you. I am also from Canada. I was diagnosed in 2006 stage 4 . I have never been cancer free. I had a second round of chemo last year and was started on Niraparib. My levels remained between 200 to 300 for 15 years. The rise last year to 1000 so I had my had my second round of chemo. I am now on Niraparib and enjoying life.