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help my ca 125 isup

jankenb's picture
jankenb
Posts: 28
Joined: Apr 2009

Hi everyone
I read about everyones ca 125 dropping during therapy
Mine was 29 prior to surgery and it was not done prior to first chemo, but before second chemo it went up to 61 and
I am soooo upset
Has this happened to anyone with chemo, and then went down?
thanks
Janet

shortmarge's picture
shortmarge
Posts: 295
Joined: Nov 2008

Mine was 33 prior to surgery and went up to 70 something after surgery. It's gone down to 17 last I knew.

jankenb's picture
jankenb
Posts: 28
Joined: Apr 2009

that sounds good to me

janet

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

Hi, Janet! CA-125 is not a reliable marker for many people, and my oncolgist told me that, as far as diagnostic tools, he looks at CT-scans (and other imaging) and internal/physical exams as more 'telling' than CA-125s.

And there is a huge variable from lab to lab, so if your pre-surgery lab work was done by your surgeon's lab team, and your chemo labs are being done at the chemo infusion center by their own lab team, it can be like comparing apples to oranges.

That was very true for me. My pre-surgery CA-125 was 50. My POST-surgery CA-125 was 190! Both were done at the hospital where I had my surgery. When I went for my first chemo treatment, they ran the test again and my CA-125 was 96. My chemo oncologist tossed out the pre-surgery number as an error; and tossed out my post-surgery number as "too soon after surgery and thus a false reading". He used the 96 CA-125 taken at his own lab as my baseline. From that time forward, my CA-125 dropped steadily with each chemo and is now at 11 following all 6 rounds.

A CA-125 of 29 PRIOR to surgery makes me personally doubt that your CA-125 can be a very reliable marker, as it already shows you in the normal range even though you clearly had cancer in your body at the time of the test. More likely it was a non-diagnostic reading and they will use your 61 number as your baseline, unless your surgery was fairly recent and the number was elevated because of that.

And a LOT of things can up your CA-125; some small infection elsewhere in your body for instance. But at least take comfort that the same thing happened to me. CA-125s are a weird marker. I've seen people with CA-125s in the 18,000 range and others with Stage IV cancer with a CA-125 under 10. If it turns out to be a reliable marker for you, it gives them 1 more tool to use to measure your progress. But sometimes it isn't a reliable marker.

jankenb's picture
jankenb
Posts: 28
Joined: Apr 2009

I guess I am aware of all the limitations of ca 125, in 79 percent of people with ovarian cancer it is normal.
I know mine was not done postop, because surgery itself raises it.
I really wish that the doc that did my first chemo had done one, so at least I would know where I was prior to treatment.
Samples all done at the same state lab.
I start radiation on Friday, brachy...and I have read that radiation artificially raises the ca 125.....So it will once again be more questions.
I have had a normal PET / ct scan 3 weeks ago, which should be reassuring
a ct scan of the pelvis was done last week because of pelvic pain and it showed nodularity along the bladder wall, the vaginal cuff and the sigmoid colon
The radiologist was concerned about cancer, but once he found out about normal PET scan he said it was scarring tissue...
but know I wonder.....
hard
thanks

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

Janet, I know exactly how you feel. That tiny 2.7 mm 'nodule' on my lung on last week's CT scan was pooh-poohed by my radiation AND my chemo oncologists as too small to be significant at this time. But it eats away at my fragile sense of well-being, and will do so until July when I get scanned again. Please take comfort that your radiation is at least in the region of those questionable areas and may perhaps (???) do some good if this does turn out to be anything. (The pelvic radiation that will dominate the next 2 months for me is NOwhere near that little area on my lung, making me wish I was still getting chemo!)

Yes; it is hard. I am used to managing my own life for the most part. I have always been brave and optimistic and I don't like feeling afraid and powerless. Somewhere in this journey we all have to learn to let go of the things we can't control, and put it in God's hands or the hands of Fate. It must be harder for you, as a physician, and used to personally directing treatment protocol. (((Janet))))

What happened with your braids? Did it work? I just LOVE that idea and think you should broadcast that idea everywhere. If I EVER have hair again and risk losing it again, I will definitely do that. It's SUCH a great idea!

jankenb's picture
jankenb
Posts: 28
Joined: Apr 2009

Well I have been documenting all the steps on my blog at www.janetbates.blogspot.com
They were all shaved off last weekend, and have been "preserved'
Had a "meeting of minds" the other night to figure the best way to work with them

With any luck I will have my new home made wig by next week. I found my best sewing friends to
decide how best to do it

Yes if It all works I will post the pics on HOW TO DO IT ....everywhere

I guess I will be doing radiation at the same time as you.
My external beam radiation begins May 11, and I finish brachy may 1st, Chemo last wednesday and one more before I start radiation.

I put on about 5 lbs of fluid with my last chemo on wednesday, so the oncologist has ordered an echocardiogram to ensure that the taxol is not having an effect on my heart. I have been more winded lately too.
Hope that turns out all right, really do not want to stop Taxol.

This stuff just never ends. I do feel I have a bit more energy than I did on day 4 last round of chemo though

YOU WILL HAVE HAIR AGAIN! :)
janet

Ro10's picture
Ro10
Posts: 1356
Joined: Jan 2009

I did not have a CA 125 done before surgery. I asked about it before my first chemo and the doctor said it would be raised due to the surgery. Before the second chemo it was 417 and then before the third chemo it was 117. So it did drop significantly between the chemo treatments. I have not had a 3rd one done yet. I only had a complete blood count drawn before I started radiation treatments last week. I was very concerned about the 417 and Linda told me about people who had counts as high as 18,000, so that made me worry less. I keep hoping that the treatments are working. I have not had a CAT scan done yet either. Take care. HUGS to you.

jankenb's picture
jankenb
Posts: 28
Joined: Apr 2009

The CA 125 is at this stage a "relative" thing, what what persons levels are vs another are often quite unrelated to actual amount of disease
The "direction" of the ca 125 is of more use at this stage and it sounds like you and I were in same boat with a reading before second chemo.......who knows what to do with that number?
I am going to wait for the next one.
bear in mind that 20 % of people with known ovarian cancer have NORMAL ca 125s...and even more with uterine cancer have normal ones.

Hugs to you too.

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Janet, I think you look stunning without hair!!

I was nervous at first to go "Au natural" - but I was amazed that on my first outing a former co-worker who I had not seen in years recognized me and we had a great reunion. I since became pretty comfortable with my baldness and would go nearly everywhere without a wig - work, church, restaurants, shopping. My hair is now coming back - almost a 1/2 inch strong 2 months after last chemo - long enough to be "messy" at times - haha. Good luck with your wigmaking!

Mary Ann

jankenb's picture
jankenb
Posts: 28
Joined: Apr 2009

is that the only photo I can see here is the one WITH hair, I have tried to put the bald one up and all I can see is the one
with braids
are you sure the one you can see has not hair?

thanks
janet

deanna14
Posts: 733
Joined: Oct 2008

No hair in the picture I see.

jankenb's picture
jankenb
Posts: 28
Joined: Apr 2009

so perhaps there is a delay
no hair here either

thans

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

It took me AGES to figure out how to see my updated photos, finally figured out that you need to click on 'VIEW" on your toolbar, and then click on 'REFRESH'.

I wanted to tell you how wonderful it is to have a physician in our little group here. We do so much research (me especially!) and figuring out what they are saying is really hard for lay people. There are such promising things being tried around the world. I read of fresh cancer cells being treated with various chemo drugs concurrent with a person's debulking surgery, so that the various chemo options could be tested on that individual person's unique cancer. That way your chemo regime was customized to your own particular PERSONAL cancer cell variants.

On the weight gain: are you sure it is fluid? I gained 15 pounds over my 6 rounds of chemo, pretty uniformly at roughly 3 pounds per round. I had a little ankle swelling that they checked into but it didn't last long, so I don't think it's fluid-retention related for me. I think it's just fat, and that my metabolism must have REALLY slowed way down. I know I was very physically active prior to my surgery (at the gym 6 days a week, 10 miles/day on ellyptical machine), and have been very sedantary since. I hope you have nothing to worry about there. You do want to stay on your Taxol. Is that the one they adjust based on your creatinine levels?

jankenb's picture
jankenb
Posts: 28
Joined: Apr 2009

Well I think he is doing it for a few reasons, I have a heart murmur, I have a lot more shortness of breath and then the fluid retention.
I was just told to report the weight gain, but I gathered it was just the steroids.
So I was surprized he suggested an echo, however, given the shortness of breath I have, I guess it is a good idea. Taxol can be hard on the heart in a small subset of people
My creatinine is great.
I do want to stay on Taxol, it really sounds like one of the better ones out there, if you can tolerate it.
I am day 5 of my chemo cycle and for some reason today I just cannot satisfy my appetite, that has not happened to me since surgery.
So why are you sedentary now? I feel I feel SOOOO much better if I at least DRAG myself out for a mile or two walk every day.

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

I have my own business, and the way I was able to go to the gym daily (pre-cancer) was to work those lost hours in the evening. Between the 'doctoring' and the fatigue and the breathlessness from having low hemoglobin, it took all of my energy just to keep up with my work and client load. (I had to have 2 blood transfusions during my chemo rounds.) I always have time to pop into here, so I can't totally blame my lack of exercise on available time! Winter has only just loosened its grip on us here in Pennsylvania, and I have been doing better about getting outside and working in the garden. I am putting off re-joining the gym until I get past my radiation. But you are right, now that my bone marrow is recovering, I should make an effort to start getting more exercise.

jankenb's picture
jankenb
Posts: 28
Joined: Apr 2009

I am kind of lucky, my husband and I work together and he is covering for me, so I am not working much.
When my blood count is OK I try to go into work. Of course I work with sick people.

That must be hard to work and do all of this.
I do find that when this all gets me down, I go for a walk and somehow it sorts my head out, and
puts it in a more positive direction.

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

I found that work helped me be a "normal" person instead of a "sick" person. I went back to work about 2 months after surgery - now I work 80% time. Work has been a positive distraction - plus I need to keep my health insurance!!

Mary Ann

jankenb's picture
jankenb
Posts: 28
Joined: Apr 2009

Well by "sick" I meant that I am supposed to be avoiding people with infections and almost everyone I look after has
an infection of some sort. I was not talking about ME being sick.
So I work when my wbc is OK
you sure cannot let that health insurance go......
janet

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Janet,

I was talking about me - being the patient/sick person. Work helped me get beyond being more than just that cancer patient.

Best wishes to you on your journey.

Mary Ann

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