CA-125 through the roof - 2,847.

Posted by jaynus55 @jaynus55, Sep 13 12:52am

Diagnosed with OC in Feb 2022. I had chemo, surgery, more chemo and have continued on chemo since diagnosis. Meds have changed three times. My CA-125 has steadily risen since Oct 2023, when melanomas started popping out on me. Was on Avastin, Keytruda, & Cytoxan (started this cocktail in April 23). Had to stop Avastin for 8 wks due to melanoma surgeries in Nov 23 & Jan 24. Finally got back on full treatment in Feb 24. More melanomas. Avastin stopped again, as well as Cytoxan in July, for melanoma surgery. PET scans had been coming back with no activity up until end of May 24. Had PET scan first of Aug and there was "activity". Oncologist said drugs weren't working and we needed to change treatment. Choices were Taxol and Avastin, or Gemzar and Cisplatin. I opted to go with Gemzar/Cisplatin as I was told they would not have to stop the drugs if by chance any more melanoma surgeries came into play. By this this time I had gone five weeks with no treatment at all. I have had two cycles of treatments. Was due for third one today, but blood work was bad - low red and white blood cells, platelets, and hemoglobin. Cipro prescribed to ward off infections. Due to go in next week and hopefully will be able to get treatment. My CA-125 came back at 2,847, which is only 125 points from where it was when diagnosed. We did explore clinical trial options at UVA, but opted at this time to go with the Gemzar/Cisplatin. I am devastated by the CA-125 reading and don't know what to do. Hopefully I have provided enough details about this cancer journey, without writing a book about it. Any suggestions? Thank you.

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@jaynus55

Thank you for responding. If push comes to shove, and my oncologist felt strongly I need it, then I would certainly consider. I've been on several chemo "cocktails" over the last two and a half years, and they do blood work on me before every treatment. A lot of things in my blood work readings read "low", and some "high", and I have asked my oncologist about it, but they tell me they keep a close watch on it all. I think these two new chemo drugs I started, Gemzar and Cisplatin, are pretty potent (according to UVA doc), and may have contributed to low white/red blood cell counts. I also dealt with a nose bleed several days last week that finally got under control two days before the blood work they did this past week. I'm hoping my white blood cell count is back to normal range, as that is the one I think was the problem. It was down to 1, and normal starts at 4.

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The first time I went through chemo, my blood counts stayed normal. The second time I went through chemo, I became anemic enough to require a blood transfusion twice. My white cell count also dropped enough to require Neulasta (a white cell booster) after each infusion. At the risk of sounding like a drug commercial, “Ask your doctor if Neulasta is right for you!”😉

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@lathomasmd

Will you share your sources with us?

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Dear @lathomasmd ,

Here are some sources that support the information I provided:

*Dietary changes and natural remedies:*

1. National Ovarian Cancer Coalition (NOCC) - "Nutrition and Ovarian Cancer"
2. American Cancer Society (ACS) - "Nutrition for Cancer Patients"
3. PubMed: "Curcumin and Cancer" (2019)
4. PubMed: "Green Tea Catechins and Cancer" (2018)

*Medical treatments and procedures:*

1. American Cancer Society (ACS) - "Treatment of Ovarian Cancer"
2. National Cancer Institute (NCI) - "Ovarian Epithelial Cancer Treatment"
3. Mayo Clinic - "Ovarian cancer treatment"

*Specific studies on CA125 reduction:*

1. PubMed: "The effect of curcumin on CA125 levels in ovarian cancer patients" (2018)
2. PubMed: "Green tea extract reduces CA125 levels in women with ovarian cancer" (2015)

*Additional resources:*

1. Ovarian Cancer Research Alliance (OCRA) - "CA125"
2. Cancer Research UK - "CA125 test"

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Dear @jaynus55 -

Questions to ask your doctors:

1. What is the intensity and location of the PET scan activity?
2. Are there any noticeable abnormalities or lesions?
3. How does the PET scan correlate with CA-125 levels?
4. What are the next steps in diagnosis and treatment? Can you use Keytruda alone when you're fit enough to do so?

My Oncologist said PET scans can sometimes produce false-positive results, showing abnormal activity in areas where there is no cancer. This can occur due to:

1. Inflammation or infection
2. Benign conditions (e.g., endometriosis, fibroids)
3. Recent surgery or radiation therapy
4. Certain medications (e.g., steroids, blood pressure medications)

False-positive results can lead to:

1. Unnecessary further testing or procedures
2. Anxiety and stress
3. Delayed or inappropriate treatment

In your case, the Oncologist might be cautious due to:

1. The high CA-125 level, which could indicate ovarian cancer
2. The potential for false-positive results on the PET scan

To minimize false positives, your Oncologist might recommend:

1. Alternative imaging tests (e.g., MRI, CT scan with contrast)
2. Biopsy or tissue sampling for definitive diagnosis
3. Close monitoring of CA-125 levels and symptoms
4. Consideration of other diagnostic tools (e.g., ultrasound, endoscopy)

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@jaynus55 In your initial post you indicated that you plan to see your oncologist this week. Did that appointment happens as planned and if yes, do you have any new information about your treatment plan?

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@naturegirl5

@jaynus55 In your initial post you indicated that you plan to see your oncologist this week. Did that appointment happens as planned and if yes, do you have any new information about your treatment plan?

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I did not see my oncologist. I only went in for pre-chemo blood work. They just called me and told me my white blood cell count is still too low, 1.4, to have a treatment tomorrow. I actually only see my oncologist after a PET scan has been done, which is after three cycles of treatments. In the interim, I see the PA. I am on a two weeks on and one off for treatments. Treatments for two Thursdays in a row, and then off a week. So far I have only had one cycle on my new drugs, Gemzar and Cisplatin. I understood they were "potent", so I'm sure that's what has brought my WBC count down so low. It's frustrating as this will put me at four weeks with no treatment of any kind, and my CA-125 has skyrocketed. I'm still waiting for the result on this week's CA-125 reading. I understand they can't give me a treatment with my WBC so low as it is too risky and dangerous, but it is still worrisome to me, knowing these cancer cells are spreading. I just don't know what to do.

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