CA-125 through the roof - 2,847.
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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Dear @jaynus55
I am sorry for the difficulties you have experienced in your treatment process so far. It sounds as though you have been given a number of different types of treatment without much success.
This is what I would do—contact MD Anderson in Houston for a review of your tumour pathology and overview of the treatments given and their results. Docs at MD Anderson will work with your team to adjust your treatment or offer you alternatives that may not be available elsewhere. The good news is that they work quickly and with minimal delay.
You have my best wishes.
I’m so sorry you’re going through this. I agree with getting another opinion. Besides Mayo Clinic, consider M D Anderson, Cleveland Clinic, Memorial Sloan-Kettering, Dana-Farber, Johns Hopkins, and Stanford. Thankfully, they can probably “see” you online, saving you travel expenses.
Another source of information is the National Comprehensive Cancer Network guidelines: https://www.nccn.org/guidelines/guidelines-detail?category=1&id=1453
Hugs
@jaynus55. I understand why the spike in your CA-125 is frightening and alarming. Frankly, I would feel the same. Anxiety causes us (me anyway) to not be able to see things objectively and so it’s difficult to put that CA-125 number in anything other than alarming. Since you are getting regular PET scans I recall that your doctors and other members in our Gynecological Cancers support group said that a PET scan is far more reliable. So, it’s good that you get these PET scans which reveal more reliable information as well as location of activity.
It sounds like your cancer care team is responsive and working with you. What do you think about getting another opinion at one of the locations suggested by @lathomasmd? Since your doctors suggested clinical trials at UVA (University of Virginia) then asking for a referral to a comprehensive cancer care center is a good idea. What do you think?
My husband and I have discussed going to one of the comprehensive cancer care centers. My oncologist, and doc we saw at UVA all spent time at MD Anderson-Houston, so I think they already pretty much follow their protocol. We live in Virginia is why we went to UVA. We have discussed Mayo, as we have heard they are really good, and we have a friend that went there for treatment of his prostate cancer twelve years ago, and he is fine - and getting ready to turn 91 years of age! I go back in for blood work on Tuesday next week, so hopefully my white/red cells, platelets, and hemoglobin will be okay so I can get my treatment. My oncologist has been out of town this week, so I have been messaging with the nurse after getting my CA-125 result. They (PA) were recommending a blood transfusion, but I really don't want to do that. I told them I felt fine, other than the normal fatigue associated with chemo. I just stop whatever I'm doing and rest a few minutes. I think because I mentioned feeling occasional shortness of breath, I was unable to perform normal daily functions. I pretty much do what I want to do. Thoughts of a blood transfusion scares me. I'll see what my oncologist has to say when she gets back in the office next week.
Two things to consider when deciding whether or not to get a blood transfusion: if your hemoglobin is lower than 7, for a few weeks or more, you could have a heart attack. Or if you had a serious injury with bleeding, you would bleed out much faster than someone with a normal blood count. A transfusion can be necessary even when you don’t feel terribly fatigued. Just sayin’.
Dear @jaynus55 ,
In my opinion, the surgeries might have caused your CA125 levels to spike. Your body may need time to recover and rejuvenate. Consider incorporating natural remedies to support your healing:
- Fresh celery and parsley juice
- Cucumber juice from a juicing bar
- Chia seeds and flaxseeds in Greek yogurt, cream of wheat, or oatmeal
- Daily intake of organic:
- Avocado
- Watermelon
- Blueberries
- Red peppers
- Strawberries
- Cabbage
- Baby Spinach
- Bone broth when feeling tired or not hungry
- Decaf Lemon ginger tea
- Decaf green tea
Definitely give yourself time to heal and allow your blood work to improve. Three of the most understated nutrients in our fight against cancer are magnesium, potassium, and Vitamin D3, as well as Amino Acids.
May God bless you with strength and courage in your fight against cancer. You're an inspiration to me and many others.
Wishing you a happy and blessed 91st birthday soon!
Warm regards,
CC
N.B. This is not medical advice. Consult a healthcare professional before making dietary changes.
Thank you so much for the nutrition information. I already eat some of the things you listed, and I will try some of the others.
Oh - I'm not going to be 91. That is my friend who had prostate cancer 12 years ago that will soon turn 91. I'm 69 and looking forward to making it to 70. I plan to keep up the fight!
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.
@jaynus55
Good morning,
I stand corrected. Both you and your friend are fighters. I trust he's currently doing well!
CA125 is a protein that can be elevated in various conditions, including ovarian cancer, endometriosis, and inflammatory diseases. While I'm not a medical professional, below are some general information on how to potentially lower CA125 levels. Please consult a healthcare professional for personalized advice.
Some natural ways to potentially lower CA125 levels include:
1. _Dietary changes_: Increase omega-3 fatty acids, antioxidants, and fiber-rich foods.
2. _Turmeric/Curcumin_: Anti-inflammatory properties may help reduce CA125.
3. _Green tea_: Antioxidants and catechins may contribute to lower CA125.
4. _Vitamin D_: Maintain adequate levels, as deficiencies may contribute to elevated CA125.
5. _Probiotics_: Support gut health, which may help regulate inflammation.
6. _Reduce stress_: High stress levels can contribute to inflammation and elevated CA125.
7. _Exercise regularly_: Promotes overall health and may help lower CA125.
8. _Get enough sleep_: Aim for 7-8 hours of sleep per night to help regulate inflammation.
Some medical treatments and procedures may also help lower CA125 levels, such as:
1. _Surgery_: Removing affected tissues or organs.
2. _Chemotherapy_: Targeting cancer cells.
3. _Hormonal therapies_: Regulating hormonal imbalances.
Again, please consult a healthcare professional for personalized guidance on lowering CA125 levels. They will help determine the best course of action based on your specific situation.
Warmest regards,
Carol
Will you share your sources with us?