Elevated CA 125, a year after treatments-A cycle?

[carolleigh]

I too am worried. I have an elevated CA 125 usually 5-7, now 19. I think that 35 figure is more about people who don't have a determined level, based on serial test ratings. I had a CT Scan, but don't know the results yet. I just wonder something...if anyone has 1 reoccurrence and not others. I was most scared because this (possible) recurrence (adenocarcinoma stage 4) might mean I will just keep cycling...or does it? Luckily so far I haven't minded chemo at all. I had carbo-taxol, lost hair, a bit of neuropathy that hasn't gone away, but not really bothersome. Anyway, does anyone know anyone who actually only had 1 recurrence? I am crazy for organic food, supplements and exercise, meditation, even cannabis. I would even consider getting even more 'pure.' Thanks is anyone can reach out.

[SCWI]

Sorry that you are worried, that seems to be the way of it with OC if the CA125 rises. Everyone is different but my CA 125 has been going up very slowly more or less since I finished chemo two years ago and is at 74. I have had endless days of worrying and then coming to terms with it, but a very recent scan was still NED. I am on Letrozole which is a hormone blocker and try to stick to a mostly plant based diet. My oncologist advocates fewer blood tests. Please try not to worry, in the scheme of things 19 is very low. Xx

[carolleigh in reply to SCWI]

Thanks for this. Yes, I have changed my diet so much... I am not quite plant based but would take that next step. Now I have a few oz of organic chicken a week, but all majority of my protein is beans. Thanks for your calming post. Funny my doc is on vacation this week. (I had a CT Scan last Friday. I don't like to look at those without him.) I'm going to wait rather than press for an answer before Monday. When he saw the number he said it was mostly likely, so I am worried... but on the other hand some people here calmed me down about one thing, which is that it can return, but I can still have a chance of it not returning for some time. Anyway, I am working well and strongly for my life with my health regimen, but at the same time I am getting used to the idea that my life might be shorter than I expected and wanted... I feel like it helps me to embrace my mortality just as a general principal too. I used to look at my friends with cancer and notice they would 'hope' in between treatments. I wanted to be very realistic ...but now I see that hope can just open my heart and it's great to 'hope' and I can still know other things. Just sharing if anyone can identify I guess that should be a new thread.

[Cynthia18 in reply to carolleigh]

I'm coming to the end of my treatment.my ca125 is below 2!!!i too am aware of reccurance,I had a hard time at first with it!!! But I am going to finish my treatments and be monitored closely like it sounds like their doing with you.if it starts to climb the whole idea is so they catch it asap!!! I wish you happiness health and peace...my favorite saying DON'T FORGET TO SMILE 😀

[carolleigh in reply to Cynthia18]

Thanks very much for responding. My doctor said there are lots of chemo for me... years and years if I need it. He mentioned something that people can be resistant and I guess that started me worrying, but generally I think I will overcome my fears. Yes, they will monitor closely, so I am not worried about that. I like my doctor, but I wonder if I should get more doctors and opinions. I have a feeling I should be it's so overwhelming to do everything. I smile a lot, btw :-). Thanks again very much for responding. It is very comforting to me to connect with people in a similar situation. Thanks!

[Cynthia18 in reply to carolleigh]

If it's possible for you,councelingand psych,drs,social workers...later down the road,support groups.my dr said I'm not emotional ready for that yet

[Fpmeehan in reply to Cynthia18]

Support groups can be really helpful, especially with patients with the same cancer. SHARE and Cancer Care have telephone conference support groups. I belong to three groups for Metastatic Breast Cancer. I’ve come to know and love these people like my own family. Also check out your local Cancer Society or Cancer Resource Center.

[kristinaapril]

Hi Carol,

I've done a lot of research regarding CA 125, what it measures and what can elevate it. I am going to copy a portion of another comment I posted over on the "My Ovacare" community.

"CA125 measures a protein that is on the found primarily on the surface of ovarian cells and in very small qualities in other types of cells. While the blood test checks for the protein level, other gynae conditions can increase it, such as endometriosis, PCOS, and ovarian cyst. Since the protein is also found, in extremely small quantities in other types of cells, other random conditions can influence it as well (Such as liver disease, infections, pancreatitis, other types of cancer, abdominal inflammation and other factors that are currently unknown).

The creation of the protein that CA125 shows is different for every person, since it's creation is believed to be an immune response to a condition. Some individuals immune response is much higher (having a CA125 of high thousands) while other individuals are much lower (no change in CA125 or a small change)."

Since there are a lot of factors that can raise the protein CA125 measures, oncologist tend to look at the trend of the number (ie: going up significantly twice in a row or more). Have you been experience any colds, virus, etc? Those have also been known to raise that silly number!

I think it's great that your team ordered you a CT scan just to double check things out. Hopefully you can get the results soon!

Best of luck,

Kris x

[carolleigh in reply to kristinaapril]

Thanks very very much for responding. I had the scan and I am just waiting to hear the results. I am just hoping that it was because I had a small tummy operation...or something like that. But the answer for me will be soon... like maybe today. Thanks very very much.

[kristinaapril in reply to carolleigh]

I would suspect very much so that inflammation due to the operation may be the culprit! Fingers crossed that it's just that!

[Tazzy78 in reply to carolleigh]

Had the same problem. Ca125 kept elevating. Cat scans clear for 6m. Finally a Pet Scan there it was hid in 2lymph..hidden

[carolleigh in reply to Tazzy78]

Thanks so much. Very very interesting to me! I really appreciate knowing.

[Cynthia18 in reply to Tazzy78]

Wow,I'm glad they found it!!!

[Tazzy78 in reply to Cynthia18]

Me2..but starting this damn chemo again is the pits

[carolleigh in reply to kristinaapril]

Oh... well high numbers might actually be good then, because it means you have a good immune response, not necessarily a lot of cancer. I think If I want to know I should read more about it. Do you have links handy? Please don't go to trouble if not

[kristinaapril in reply to carolleigh]

I do have a few references!

ovariancancer.jhmi.edu/ca12...

ncbi.nlm.nih.gov/pmc/articl...

patient.info/doctor/cancer-...

Hope these help!

[carolleigh in reply to kristinaapril]

Thanks! I appreciate it very much!

[Tazzy78 in reply to carolleigh]

High numbers are not good

[carolleigh in reply to Tazzy78]

My highest was 40 before my surgery, then 16 when I started chemo. 5.8 was my lowest after chemo. I think I will ask my doctor why mine hover low.

[Cynthia18 in reply to Tazzy78]

No!!!

[GwenHP]

Hi Carolleigh,

I can totally relate with your concern about a rising CA125. In general, it is more important to look at the trend rather than the absolute number.

I am someone who has only had one recurrence. I was diagnosed in 2005 and had a recurrence in 2008 with my last chemo in November 2008. I've been well ever since, but I'm always aware that it may come back someday.

Wishing you the best,

Gwen

[carolleigh]

That is just what I hoped to hear! I was so worried that this recurrence means I will have lots of them. I take extreme care of myself and I do almost everything I read anywhere that could be done...

My low was 5.8 or 6 or so but it went up to 19 last week... but I am just hoping that the CT scan didn't show anything.

As I wrote, I had a tummy procedure (not related or bad) and I am hoping that influenced the number.

My doc is on vacation this week. I will know next week. BUT I feel so much better to get your reply. But no matter what I am learning lots about dealing with things psychologically and I think I will do well no matter what.

That was a great gift to message me here... I don't like to read too much about chances and stats. I mostly like to read about all the things I can do to take care of myself. Thanks so very much to you and everyone who responds.

[carolleigh]

Thanks everyone for the help. I just found out that my CT scan shows it's in my lymph nodes, but too close in to operate, and my doctor is recommending Doxil, so that's what I will do. I could research and figure out what's best, but I feel like speed is important and I can't imagine that I am equipped to decide. He is supposed to be a wonderful doctor, and I like him, so anyway... I think I will post about dealing with the emotional things now under a new post. Thanks for all this support and info.

[carolleigh in reply to carolleigh]

I have been on Doxil- one treatment only, but I noticed I feel energetic... I didn't read that was a side effect. otherwise I don't feel it. I sure hope it works because it's pretty good so far... although the symptom I am scared of is the hand foot thing because I am in every one of the groups that is more likely to get it, age, gender, neuropathy condition... It can happen anytime during treatment, apparently. My doc says not to worry until I have it, and there is nothing to prevent it. He said it goes away though, not like neuropathy. I am worried it will make my neuropathy worse. My neuropathy is very mild and I try to work on it...but hard to know what to do. Thanks!

[carolleigh]

Well to wrap this part up, I started Doxil, had 2 treatments. My CA 125 is down to 12 from almost 20. I haven't had any side effects that I notced. I was mostly worried it wouldn't work, but it seems to be. There is so much to learn. Thanks!

[Tazzy78]

Yes I have Stage 4 cervical and had 1recurrence . I'm on the same drugs you are on..had elevated ca125..

[carolleigh in reply to Tazzy78]

Thanks so much for writing. Yes, just what I have. I am 66 years old and otherwise in good health, I think. Here is just an update and I would be eager to hear how you are doing also.

The only side effect is I get nauseous about 1-3 minutes a day. Otherwise no symptoms that I am aware of…maybe I am slowed down a tiny bit in my exercise class, I am not sure.

I am not ‘worried’ anymore. When I am in treatment I feel positive so far. But last time on chemo I was more exuberant and dedicated… changing my life to eat well and exercise. I lost about 115 pounds on purpose. I would love to get to a better psychological space… I do meditations, but my mind somehow hasn’t let me get in touch with a hopeful spirit. I just got a therapist and joining a live support group. Mt doc sort of tells me that I can have lots of chemos and he said about a bit less than half of his patients in my situation find a chemo that gives a long term remission. I am not sad, but I don’t like those odds.

Now, 22 months after my diagnosis (Stage 4 endometrial - which the doc says could be called ovarian too…) I would love to find hope and optimism. I guess chances are good I have a few years left of not feeling sick, I guess… even if I don’t ever get remission.

I would like to take classes in my cancer and in the chemos I am taking. I also wish I could get back to wanting to do things in my life… I mostly like to just relax now. I work 2 days a week, and I caretake for my 95 year old mom. I would like to get motivated to do things. I got a book Anatomy of Hope amazon.com/Anatomy-Hope-Pre.... Not sure if I like it, BUT I am learning something about ways cancers progress, and how doctors might feel.

I would love to hear from folks who have found good ways to manage the emotional aspects. Thanks to everyone!