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to Jazzy1: my CA125 history

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

(I thought it would be easier to answer you in a new post rather than make you look for the answer to your question within that thread.)

Prior to my big de-bulking surgery/hysterectomy they took my CA125 and it was 50, which they determined was 'non-diagnostic'. 3 weeks later they took my CA125 at my post-op and it was 150, which they attributed to surgery inflammation.

I got my chemo at a different hospital than I had my surgery, and they only trust their own labs, so took my CA125 right before my 1st chemo infusion to use as a baseline: it was 90. After the 1st chemo it dropped in half, and by the 3rd I was under the magic 35 they consider normal. By the time I had my initial 6 rounds of chemo, my CA125 was 12 and got as low as 11 at my blood draw 6 weeks after radiation.

1st monitoring check-up after I was in remission my CA-125 remained at 11. 3 months later at my check-up it had leaped to 155! I was having almost colitis-like bowel inflammation that showed up as stranding in my CT/PET and there was some talk that this could be driving up my CA125. But 3 lymph nodes lit up in the scan and I immediately started weekly taxol infusions. My CA125 dropped quickly to the mid-40s and then just stayed there for the last 4 infusions, so another CT/PET was ordered to see what was going on. That CT/PET was CLEAR, NED, so I went on the chemo-break that I've been on the last 3 months. My CA-125 taken 2 months after my last chemo infusion dropped to 34.6, leading them to believe that the chemo was inflamming my bowels and causing my CA125 to rise, and now that my bowels were settled down, my Ca125 is in the normal range.

My next CA125 draw will be May 17th when I get my port accessed for my CT/PET. I'll let you know what it is. They look on CA125 as a reliable marker for me because it dropped consistently with chemo. But they also believe my CA125 is very sensitive to inflammation.

jazzy1's picture
jazzy1
Posts: 1385
Joined: Mar 2010

You really remember all the CA 125's...great! I can see why it can be reliable and then with inflammation it rises. I would never have thought what would make it rise (inflammation), as was only thinking it was tumor marker with cancer. Crazy!

My doc told me he likes to use it with many others but it's not always accurate. In my case it seems to work....at least for now.

I'm praying for you that this little break continues for a long, long time! You're such a neat lady as love to read your input on the site.

What's your 'Professional' background? Any way have experience in the health field? You seem to have a great grasp on this technical health information.

Thanks again,
Jan

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I am a grantwriter by trade and have a small company with 8 part-time employees (I am the only full-timer.) I currently have 25 nonprofit clients, and have to spend a lot of time researching online to fully understand each client's mission and challenges. I spend a lot of time studying comparable programs so that I can project outcomes, etc. for new proposed programs. And our clients change all the time, so I have to start over with each new one and learn everythung about that cause. So I have a LOT of experience doing internet research and a highly developed sense of curiosity that allows me to really dig into new subjects. When I got cancer, that captured my interest in the same way. I've always been like this; I was the kind of little girl that wore out a set of encyclopedias, ever curious about every new bug or bird or plant I saw or anything else I didn't know. The internet was the most wonderful thing that ever happened to an insatiably curious person like me! I have no medical training, but my clients include many health-related causes: diabetes, tourette syndrome, mental health, etc.

Check out my website to see me with my pre-cancer hair and lots of photos of my beautiful grandchildren illustrating each page: www.procopiofundraising.com My phone number is on my website if anyone here ever wants to call and talk to me.

jazzy1's picture
jazzy1
Posts: 1385
Joined: Mar 2010

Linda,

Yes now I understand why you're so detailed on our disease and grasp it very well. Wonderful quality Linda. I've always been the kid in the candy store who was curious how the candy was made, and how it ended up in the store... Always wanting to learn more...

What you do is very interesting. I'm in the midst of trying to figure out my next mission in life. As I've said here before, I've had it with the big corp jobs and been working from home for 6 years, but my industry is really crazy now. I deep down want to contribute to society and help others, so my mind is all over the place from working with cancer patients to teaching yoga and being a personal trainer. Ever been here before? My background was always in corp sales from food to telecom/wireless, now where do I go?

How did you get started and how does one get involved in work like you're doing??? Curious.... I'm really thinking out loud now,,,,sorry!

Just opened your site and quickly looked, but will go further later today as have to run out for appts.

Thanks again~

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I worked in advertising as an ad copy writer originally, but the salespeople kept telling their clients, "why not call Linda directly and tell her about your ideas?" So when the salespeople went on vacation, since I already knew everyone's clients, they'd send me out to do sales that week. Sales allowed me to triple my income overnight, and gave me the freedom to do volunteer work. Since writing was my background, I wrote grant proposals for 20 years as a volunteer for causes I cared about, for free! When my husband retired at 47 after a large inheritance, I decided to make my hobby into a little business. I never imagined that organizations I'd worked for for free would hire me or recommend me, but my business took off and the rest is history, as they say. I love what I do (obviously since I happily did it 20 years for free!)

When they suspected a recurrence of my cancer, I had to take a lot of legal steps to ensure that my contractural obligations to my clients would be met with or without me. I also took steps to bring my 2 sons in as full partners and have been training everyone how to do all aspects of the business I have always handled personally. And I've written a manual to describe our methods, policys, etc. I want to be sure that my business will continue to provide income for my family long after I am gone. I had to ask myself whether the time it would take to plan and initiate this transition was time I was willing to spend when my days are now so precious; and I can really afford to stop working if I want to. But leaving this legacy IS important to me, and worth my investing time in, even with time now so very precious to me.

How lucky I've been to be able to work flexible hours and from home! I was able to work throughout my treatment and never miss a beat, even when I was too weak to safely drive and too run down to be in crowds.

nempark
Posts: 683
Joined: Apr 2010

Hi Linda: I just read your article and was not surprised to learn of your professional background. Its amazing I was just checking for any comments you would have and I was thinking "wow who is this lady"? Its all clear to me now. Please let us know how you are doing and be well. If you have the time, I would like to explain to you what my situation is and you cannot believe how ignorant I am about my illness. don't even know what to ask my Doctors just know that my ca125 after my last chemo was 12. I don't know whether this was good or bad. Not a clue. I was told I had endometrial cancer stage 1a. doc did a robotic surgery and said cancer did not spread to any area and that he got it all. Pathology report said it was good. I had 6 chemos no radiation, no side effects just hair loss, never knew how important hair really is (laugh). After chemo first ct was good. See if you can shed some light on this for me. Hope you are doing well, you are a delight to have on this site. June

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