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CA -125 continues to rise

Ro10's picture
Ro10
Posts: 1483
Joined: Jan 2009

Went to the  doctor and my marker went from 705 to 905.  He gave me several options.  When I came to Florida my marker was 712 from September so to raise only 200 points in 6 months is a slower rise, for me Than previously.

1) have a CAT scan and if it shows significant increase in lymph nodes, go back on Taxol/cisplatin.

2). Have a CAT scan  and start Doxil if treatment needed at this time.  I told him I dreaded the side effects of Doxil.  He said some people do well with it, but others could only take 2 doses because of the side effects.  You don't know until you try it, how you will react and if it works.

3) try a new aromatase  inhibitor - Letrozole, to see if it slows the cancer growth better.  He also mentioned tamoxifen , but it increases the risk of blood clots, since I have had multiple blood clots in both lungs that is not an option for me.  I tried Arimidex before, and it did not work for me, so I am hesitant to try something different.

4) enter a clinical trial.  It is a phase 2 trial.  It is with Adriamycin or an isomer of Adriamycin.  You do not know which drug you will get.  To be part  of the clinical trial we would need to stay in Florida, and since we are going back to Illinois for the summer, I can not enter the trial.  He was not sure I would meet all the criteria to enter the trial. He would need to check.  He says that Adriamycin has proven useful in treating in Uterine cancer, but I have not seen anyone on this board who has taken it.  Maybe because it is still in clinical trials.

in checking the Internet it looks like Adriamycin is in the same family as Doxil, but a much older drug.  Much like carboplatin and cisplatin are in the platinum drug family.

5) continue the same as I am doing with the Aromasin and repeat the CA 125 in 2 months.

I asked if  I chose the Doxil and it did not work, could I go back to the taxol/ cisplatin since that did work.  He said yes, I was not closing any doors.  I chose option 5.  It has been 22 months since my last chemo.  My marker went up to 1700 after 18 months when I had chemo the second time.  And it went up to 3200 after 7 months when I had chemo the third time.

I am going for quality of life.  The longer i can be off chemo the better for my body.  The doctor is okay with me continuing  the same Medication and observation.  He said by waiting it would not effect the usefulness of the treatment in the future.  I have a follow up appointment in Illinois in May.  

I also asked him if I was diagnosed today with UPSC 3-C would he still recommend the sandwich treatment for me.  I told him about someone else who went to Moffitt, where I go, that had all chemo then radiation.   He said yes he would recommend the sandwich treatment.  He said that some thoughts are that if you have all the chemo first then the body has a harder time with the radiation.  So different doctors have different theories.

i am still symptom free, so I will continue to give thanks for each day, and enjoy each Day.  Hope you are all doing well.  In peace and caring.

ConnieSW's picture
ConnieSW
Posts: 623
Joined: Jun 2012

Hard decision (and I am not a decisive person) but sounds like a good one.  Do you have equally trusting relationships with both your docs or lean more to one than the other? 

 

Best wishes, connie

Ro10's picture
Ro10
Posts: 1483
Joined: Jan 2009

My doctor in Florida is a gyn/ Ono and my doctor in Illinois is a medical Ono.  So I value the opinion of the Florida doctor very much.  I feel he has more expertise on UPSC.   My Il doctor does communicate with the FL doctor if needed.  So I am fortunate to have two excellent doctors.  

My IL doctor's wife is a breast cancer survivor, so I feel he has lots of compassion when I have side effects.  When I was so nauseated he researched more on the Internet to see what might help.  

Thanks for the best wishes.  I appreciate them.

Kaleena's picture
Kaleena
Posts: 1226
Joined: Nov 2009

Oh my Ro.

Well I am glad that you are symptom free, but oh what decisions you have to make.    It seems that you have a good doctor who gives you a list of options and discusses issues with you.  From what you wrote, I think I would go with #5 too.  It seems that your CA125 rises higher while you are on chemo.  In any event, if you repeat the CA125 in two months you can always take a different approach if needed.

My best to you.   Keeping you in my prayers.

Kathy

Double Whammy's picture
Double Whammy
Posts: 2336
Joined: Jun 2010

I have no idea which choice I would make, but quality of life is so important and you have not closed any doors.  The longer you're off chemo, the stronger you will be IF you need to do it again.  Being symtpom free is amazing.

It is very interesting about the AIs.  I was on Arimidex for breast cancer and last year switched to Tamoxifen.  While I really do believe my endometrial cancer is gone, gone and gone forever, I have this sense of comfort when I take my little white pill each day that just in case there is a nasty group of endo cancer cells somewhere, they're not going to thrive because the estrogen receptors will be blocked and they'll give up and die.  Silly, but it gives me a double reason to take it (I don't like having to take it). Are you having your bones scanned for osteoporosis?  That's the big ugly side effect of the AIs, and one reason I've chosen to remain on Tamoxifen.  I did develop osteoporosis, and I do NOT want to take a bisphosphonate and since Tamoxifen can be good for bones, I'll see what my next dexascan has to say.    I have a question about Tamoxifen and endo cancer, tho, and one that you might ask your oncologist.  A side effect of Tamoxifen is endometrial cancer and it is sometimes UPSC.  So, if you have those cells somewhere else, how does Tamoxifen help if they're not in the uterus but elsewhere?  Just curious.  Maybe someone could answer that.  Hmmmmm, maybe I'll ask my oncologist when I see her next.  I just thought of that.  AIs don't effect the uterus (if one has one).

I did not have adriamyacin but several of my friends had it for breast cancer treatment.  It used to be the absolute drug of choice (referred to as the "red devil"), but it can cause heart damage, so Taxotere has been found to be as effective with no evidence of heart damage.  For an old broad like me with high blood pressure, my oncologist chose Taxotere and I notice now that most women are having Taxotere instead.  If you decide to try Adriamyacin, you might want to ask about heart issues.  (My friends are fine) 

Sorry about the rising CA125, but as you say, it is a lesser rise than previously.  Sounds like you are indeed in good hands and will keep an eye on it.  For now, enjoy!

Suzanne

Ro10's picture
Ro10
Posts: 1483
Joined: Jan 2009

Thanks for your comments.   I was thinking you were taking Letrozole.  The Aromasin I take still gives me joint pain,  and thinning of hair.  I have hardly any hair on top of my head.  I wear a hat when I go out.  My husband says......at least you have hair.  

I remember giving Adriamycin in the hospital.  I remember it being red.  Years ago we used to give chemo in the hospital.  I also remember people getting so sock from the chemo.   They have come a long way with pre chemo and post chemo drugs.   I think I read where a MUGA scan is done to check your heart before getting Adriamycin.

i have not had a dexascan done  since I started the Aromsin.  I will ask about one my next appointment.  Thanks for bringing that to my attention.  I did not realize that was such a concern.  

hope you continue to do well.  

Ocalagal99
Posts: 16
Joined: Nov 2013

Hi, Suzanne,

you mention in your post:
"It is very interesting about the AIs."
Can you explain that AI is, please.  Abbreviation?  Thank you.

Ro10's picture
Ro10
Posts: 1483
Joined: Jan 2009

Examples of Aromatase Inhibitos are Aromasin, Arimidex, Femara, Tamoxifin, and Letrozole.  They work to slow the growth of tumors.

Ocalagal99
Posts: 16
Joined: Nov 2013

Thanks, Ro, I hadn't heard of these.
Your posts have been so helpful and informative.  I am so glad you are doing well.

My last CA 125 went from 33 to 41 so now have a consult with Chemo Dr.  I have been off chemo for 3 months for radiation (sandwich) and just have my port flushed every 6 weeks when this appeared.  So now want to find out what options and cautions there are.  Not sure that I should panic about the rise in numbers yet. 

Please keep posting!

txtrisha55's picture
txtrisha55
Posts: 432
Joined: Apr 2011

Dearest Ro,  Hard decision to make but it is like getting two opinions by Drs. Who know your case. You are lucky to have the two drs.  I would vote for option 6 go back on vacation to New Zealand. Totally relax. It seemed to work the last time dropping two hundred points. Any way you go praying for a good outcome.  Trish.

 

I

Ro10's picture
Ro10
Posts: 1483
Joined: Jan 2009

I do have option 6 in mind.  We have a trip planned in June to take a cruise in the Norway Fiords.  We will spend a few days in Amersterdam, too.   That is another reason I want to hold off on chemo.  Thanks for the prayers they are much appreciated.   

Hope you continue to do well.

ConnieSW's picture
ConnieSW
Posts: 623
Joined: Jun 2012

I have no desire to do a Caribbean cruise but have always wanted to do one of the fiords.  I visited Amsterdam 40 years ago and had a great time.  I just know the travel therapy will work for you again.

Abbycat2's picture
Abbycat2
Posts: 158
Joined: Feb 2014

Hi, Ro, and thanks for sharing your situation with us.  I was wondering how your appointment turned out a couple of days ago and wishing for the best for you.   Are you still planning to have the CAT Scan?  As you know, I arranged to see the same gynecologic oncologist that you see in Florida soon.  I rescheduled my appointment with him so that it follows a CAT Scan and CA-125 that I will have in the beginning of April.  I can't wait to hear what Dr. A. has to say about my situation. 

I think if I was planning a nice trip I would go for quality of life at this point, but I realize this is no easy decision for anyone to make.   Almost two years without chemo is quite an accomplishment and I pray that you can go many more years without it.  Perhaps your trip will cause the CA-125 to go down like it did after your previous trip.    You have been kind and informative to so many women on this board- I know because I've read a lot of the threads since my diagnosis- and I think I can speak for the others here as well when I say that I wish you the very best with your health. I will continue to pray for you! 

Much Regards,

Cathy   

Ro10's picture
Ro10
Posts: 1483
Joined: Jan 2009

I hope you get good results from your CAT scan and CA 125.  I hope you get a helpful opinion from Dr. Apte regarding radiation Or whether he does not recommend it.   Hope you are recovering from your chemotherapy.

My plans are to have a repeat lab the end of May.   Go on my trip and then have a CAT scan  and repeat lab when I get back from my trip.  I would not do anything regarding chemo until after my trip anyway.  That is as long as I continue with no symptoms.

thank you for your kind words and best wishes.  I appreciate them.  I try to encourage others and answer questions.  I know how scary it is to hear that cancer diagnosis, and the fear of the unknown.  We are all different and have different journeys but yet much of it is the same with our anxiety, periods of sadness and disappointment when recurrence occurs.   Keeping a positive attitude is very helpful, being hopeful, and being ready to fight.  I have a shirt that says "No one fights alone", so support is important.  I get great support from this site.

good luck with your appointment.

HellieC's picture
HellieC
Posts: 460
Joined: Nov 2010

Such difficult choices, Ro.  But I think you are right to strive for quality of life for as long as you can. 

Carbo/Doxil seems to be used in the UK as second line chemo for endo cancer, so it is on the list for me in the future, once I have worked through all the hormone options.  But the side effects (hand/foot syndrome) are a concern.  I could also have carbo/taxol again as I had a 15 month response first time around.  I was disappointed that the letrozole response was only 20 months, as some patients get several years, but the side effects were manageable (mostly just aching joints).  A couple of weeks ago, my 6 monthly MRI scan showed progression to the tumour in my pelvis, so I have now started provera and I am hoping for a response.

I think your approach is so positive and well throught through - long may you continue to be symptom free.  Your cruise and trip to Amsterdam sound lovely - make sure you wave to the good old UK as you fly over us!

Kindest wishes
Helen

 

Ro10's picture
Ro10
Posts: 1483
Joined: Jan 2009

Thanks for your note.  So you are the one that has been on Letrozole.  I know you had good results from it.  I hope the Provera works for you.  I don't know if the Letrozole will work for me, but it may be worth a try.  I'll see what my next marker is.  I know the Arimidex did not help at all.  Did you have hair thinning from the Letrozole?  

I don't know if Doxil would be combined with Cisplatin or if  it would be Doxil alone.   I think I'll chose the taxol / cisplatin first when the time come.  I too fear the hand/foot. Syndrome.

i am sorry about the progression of the tumor in your pelvis.  I hope the Provera will shrink it, or keep it from growing.   May you have much longer before you need chemo again.  In peace and caring.

HellieC's picture
HellieC
Posts: 460
Joined: Nov 2010

Yes - I was the "Letrozole girl"!  It worked well for me for 20 months.  It didn't send the tumour into total remission but it did shrink it back considerably and held it there for about 20 months.  Didn't really notice any serious hair thinning - it was more the joint aches and hot flashes that I experienced, but it was all manageable and there was never any side effect that made me think I wanted to stop taking it.  I'm hoping for a similar response with the Provera (similar to Megace) but won't know for about 12 weeks. If there's no response, I think we will try Tamoxifen next.  Only when we'vbe worked through those options will we go back onto chemo - like you, I am trying to get the longest break before we have to consider that.

Kindest wishes
Helen

Sisters three's picture
Sisters three
Posts: 158
Joined: Nov 2012

Last year you went on a vacation and your CA 125 came down considerably. Did you try to think of anything you did differently when you were on vacation. Whether it could be food or even taking any kind of medicine that you hadn't been on regularly at home. Did you sit down scientifically with pen and paper and involve others who were with you so you could brain storm it?

 

Maybe it wasn't a fluke. Maybe you could recreate the changes and knock those numbers down again.

 

Lisa

 

Double Whammy's picture
Double Whammy
Posts: 2336
Joined: Jun 2010

Ro, I'm just curious.  My recollection is you've always been symptom free, yet have these CA125 levels that are really high.  Why do you think that's the case?   

I'm also still curious about the Tamoxifen.  Hellie, do you know why it would work on a tumor growing outside the uterus yet be a known risk factor for uterine cancer when one is taking it for breast cancer (and still has a uterus)?  It's my understanding that it acts like estrogen on endometrial tissue, making it more susceptible to cancer, so I just don't get how it might help those cells that would be growing outside the uterus.  Aromotase inhibitors work differently, so I sort of get that.  When I started on Arimidex 3 years ago, my med onc (breast cancer) made a point of telling me that "they" give Arimidex for endometrial cancers sometimes. 

Inquiring minds, and all.  Glad you both continue to do well in spite of still battling the beast.  Always look forward to hearing from you.  And btw, my hair loss is not from hormone therapy - mine is permanent hair loss from Taxotere, another known risk factor they don't bother telling you about.  Collateral damage . . .

Suzanne

soul-mate's picture
soul-mate
Posts: 70
Joined: Feb 2014

Hi ! To all the ladies on this board I wish you all the best. I have a question about CA 125 levels for endometrial cancer, do they put lot of emphasis on readings or just a guide line? I was told by my wife's doctors that the markers are not reliable with endo.c . She is on Gemzar for chemo as 5 Carbo-Taxol treatments neuropathy set in and damage would be too great if we continued. Your wealth of experience here is greatly appreciated. Bye for now.

SOUL-MATE

Kaleena's picture
Kaleena
Posts: 1226
Joined: Nov 2009

Dear Soul Mate:

I was diagnosed with Stage 3a, Grade 2 endometrial adenocarcinoma and my CA125 has always been within the normal limits.   I too did the Carbo/Gemzar because I was allergic to the Taxol.   My best to your wife.  

Kathy

txtrisha55's picture
txtrisha55
Posts: 432
Joined: Apr 2011

CA125 levels vary with different types of cancer and the women that have those cancers.. I was dx with stage 3c grade 3 carcinoma sarcoma uterine cancer 2 1/2 years ago. My ca was 15 and remains around 12 now. Different stokes for different folks as the saying goes. Best of luck to you and your wife. Trish

Ro10's picture
Ro10
Posts: 1483
Joined: Jan 2009

My doctor has said that the CA125 is just a number.  He treats if the patient has physical symptoms, or if the scan shows changes.  He is never concerned with my high numbers if I do not have symptoms or the scan does not show changes.  the marker is not a significant test for many, but others it can indicate a recurrence.

Why my marker always increases after I go off chemo, I don't know.  Wish I did know.  I never have any symptoms, so I have to depend on scans.

i am sorry that you and your wife are having to deal with this cancer.   I am sorry she is dealing with neuropathy.  Luckily I have not developed neuropathy even completing 3 different rounds of chemo.   Everyone reacts differently.  She is lucky to have your support. In peace and caring.

HellieC's picture
HellieC
Posts: 460
Joined: Nov 2010

Hi Suzanne

Yes - I wonder about tamoxifen too.  How on earth can it act on endometrial tumours outside the uterus but be a known risk factor for endometrial cancer when taken for breast cancer in women with a uterus!  I asked my oncologist and all she said was "yes, it is counter-intuitive, but it does work"!.  I thought I would leave the more detailed questions until she wanted to prescribe t for me! It looks as if it might be the next hormone in line for me if either the provera doesn't work or if it works and then stops.  I am also going to ask her about Faslodex (Fulvestrant) which is similar to tamoxifen, but needs to be taken by a monthly IM injection.  Apparently it doesn't have the same partial agonist activity in the uterus and, somehow, with the little knowledge I have at the moment, I feel more comfortable with that. But we'll see.

I'm so sorry you're still experiencing the hair loss.  I know it seemed to be taking a long time to re-appear, but I sort of figured it would come back in it's own sweet time!  I'm sorry it's now considered permanent, although to look at your picture, you would never know - that's a great wig. You're right - no one ever tells you that permanent hair loss is a possibility.  So many things they don't tell us!

Kindest wishes
Helen xx

 

Ro10's picture
Ro10
Posts: 1483
Joined: Jan 2009

I wish I knew why my marker went down after my last trip.   Before the trip we took two days to drive to Florida from Illinois.  Two days later we left for Australia.  We arrived 33 hours later after 4 flights and a 13 hour overnight flight.  While on our trip, I experienced many different foods.   I had kangaroo, lamb, alligator, and various fruits and vegetables.  My medications were not any different from what I normally take.  We did lots of walking which I usually do every day.  After the trip we had another 13 hour flight to LA.  I have very little stress in my life, so I don't think stress is a factor.

I think  the drop was a fluke because the number has never gone down before without chemo.  I just hope for the continued slow rise in the marker.  Thanks for your concern.

ConnieSW's picture
ConnieSW
Posts: 623
Joined: Jun 2012

Will be interesting to see your numbers after the next trip.

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

Sorry to read of your latest, but I know you're a real trooper and NEVER GIVE UP!!!!!!!  I'm in a similar siguation where we need to make some decisions, so gather all your information and sit on it for a bit.  Then...even that decision might not be the best and will have to alter it, but don't give up we're all here for you my dear friend.

I've learned a lot about the CA125 from my naturopath and so many other things can cause it to rise.  One area she's just learned after a few conferences she's attended, many "biological issues" can cause it to change which has nothing to do with cancer...bingo!  Wow doesn't that sound like more stress, then worry about what other inflammation in the body is going on....could be surgery, wound, cold, colitis, etc, etc.  But...our western docs have us so believing in that damn number to be the end all...darn!  I'm trying to get away from it as the ONLY MARKER to define my health status.....not easy, but I'm trying.

Mine had gone up after chemo #3 with carbo/doxil and I was concerned a bit.  Apparently this is generally what doxil does to our marker...raise it...then it will come down.  I completed #6 and finally it has started to come back down...crazy hum?

Whatever decision you make, I know it will be what's best for you as you've always spoken highly of your medical team.  I love the option to post here for input as that as well gives you great insight from others experiences.  

Keep up the fight and know we're all here for you....you're my idol!!!!

Huggers,

Jan

NoTimeForCancer's picture
NoTimeForCancer
Posts: 578
Joined: Mar 2013

AND you got some of my favorites to come out and post.  WHY?  Because you are a true gem. 

All the ladies on the gynecological cancer pages are in my thoughts and prayerss.  I don't know what I would have done if I didn't have the knowledge and humor from you all. 

Much love to all.

SUNGRANNY
Posts: 81
Joined: Dec 2012

Dear Ro,

Thank you for sharing your recent situation.  I am impressed by your thoughtful choice. How good that you have options. 

Good for you for sticking with your quality of life philosophy and your upcoming cruise.  That should be a lovely experience.  

Since I've been on this list (Nov 2012) I've gotten information and hope from your posts. Thank you.

May you continue symptom free, and have a wonderful cruise.  

Sara

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