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CA 125continues to rise

Ro10's picture
Posts: 1579
Joined: Jan 2009

In the last 10 weeks my CA 125 went from 554 to 672.  I was going to be happy if it was less than 700, so I was very happy.  As before I have no symtoms and feel good.  I have joint pains from the Aromasin, but I can deal with that.  i also continue my daily blood thinner shots.

My onocologist in Florida said he would not do a CAT scan unless the CA 125 jumped significantly.  My Illinois onocologist wants to do one because  he says the cancer can change.  Even though my marker was 1700 before the second time I needed chemo, and 3200 before I needed chemo the third time.  He says he would recommed the CAT scan just to be sure the cancer is still being contained.

I do not respond the same way other people do with all myalleriges and how I respond to the chemo, he highly recommended the CAT scan.  So I will have a CAT scan before I see him in 7 weeks.  All other labs remain good.

Knowing how quickly Mary Ann progressed, I don't want any surprises.  Mary Ann. Linda and I were all diagnosed about the same time and all were staged at 3-C.   I don't know why I am still "living large" and they lost their couragest fight.  I am thankful for everyday, and pray for all those who are on this journey with me.  In peace and caring. 

debrajo's picture
Posts: 1095
Joined: Sep 2011

I am sooooo glad you are still living large, it was beginning to get lonesome out here in UPSC land!   Stay with us Ro...I need you to lead the way!  Best, debrajo

HellieC's picture
Posts: 524
Joined: Nov 2010

So sorry that the marker is still rising - but it is still below your target 700!  I had hopes that the Aromasin really would slow it's path to almost no rise at your next test.  But it was not to be.  It's difficult to know why Linda and Mary Ann didn't have the same path as you, Ro, but please don't let it play on your mind.  We are all different on this journey and our bodies react differently to the treatments we take. 

I know that you won't be looking forward to the time when you have to jump into the chemo again.  However, it has always been a worthwhile treatment for you, with good results, even through it has been hard to take. But I hope you still have a while before you have to go through it again.

Keep strong Ro - you are an inspiration to many on this board with your positive outlook and strength in accepting the treatments required.

Kindest wishes

TAyers's picture
Posts: 86
Joined: Aug 2012

Hi Ro,

I am also grade 3 stage 3c, and wonder what my future holds. ( I am 46, diagnosed May 2012). I do know when I look at the boards, I do look for your name for guidance on UPSC. Thank you for always posting your updates. I will be praying for your next catscan. Did you ever have the PET/CT others have fought to get? Tami

jazzy1's picture
Posts: 1385
Joined: Mar 2010

We can't second guess why one of us is still here and many others with similar staging, etc, are gone.  Life just isn't BLACK AND WHITE!!!

I do not have UPSC, but a similar aggressive type called MMMT and stage 3C, too.  When I asked my doc about the similarities, he told me both are somewhat similar and bottomline -- VERY AGGRESSIVE and must be treated this way.  So...I see many other whom have done great and that keeps me going.  Always trying to be optimistic.

Ro you've been a beacon of light on this site and do remember our friend Linda P. whom fought the battle now seeing dear Mary Ann.  Keep the faith you have a different path in God's eyes....as remember we're all unique.

Here's sending positive vibes those scans are in your favor~





Posts: 1551
Joined: Jun 2012

Who knows the why's.  You just keep on living large.  I find it hard to decide what to do about tests when one doctor says one thing and another something different.  I wish the followups were cut and dried.  I'm not a good decision maker at the best of times.  I must say that what I've learned on this site does help so please keep guiding me, Ro.

Kaleena's picture
Posts: 2064
Joined: Nov 2009


I am happy that you are living large and feel good and that your numbers are under 700!    I have watched your ups and downs all along and even though I do not say much, I wish I could vocalize my thoughts and words like other posters here.   Some how I wasn't given that talent, but rest assured I do pray for you that you may keep your numbers low.  

I have taken your advice (past and present) and the advice of many to make sure I live large and don't sweat the small stuff.  Wishing for you to have a good CAT scan.



Posts: 48
Joined: Jun 2013

I am new to UPSC and have been reading your post but just joined.I too have been diagnosed with stage 3C and just had surgery. My CT scan was negative and nothing looked out of order with the surgery but was shocked when microscopic cell were found in 3 pelvic nodes and 1 para aortic node. I go back Friday and find out when I will start Chemo and what kind of radiation I will be receiving. Does anyone know what kind of radiation is used when there is pelvic and para aortic involvement? I was told from the beginning that is was very aggressive but this stuff is no joke. I had my biopsy right away after telling my primary care physician I had some pink drainage.He is very good and almost had a cow and got me to my gyn right away but I still turned out to be 3C. I hope all goes well for you with your CT scan!

Cindy Bear
Posts: 570
Joined: Jul 2009

as long as you can. Relish every moment.. Linda and Mary Ann would certainly want you to.  So glad you are feeling well...it's hard to know what to do, decisions, decisions. I have heard that a cancer's pathology can actually change over time, and that's one reason why a CA-125 marker can be an accurate marker for some at first, and then not.. I think I would agree with your choice to get the scan, I'd want to know if things were holding steady or not.

Big hugs, good luck.

Posts: 87
Joined: Oct 2011

Ro I don't think you  realize how much hope and strength you've given to all of us and you certainly deserve our deepest prayers.  I haven't been posting

lately , finding it hard to post good news in the midst of everything that's been going on in this forum. I realize though that newcomers desperately need

some hope. So here I am - diagnosed in September 2010 with UPSC stage 4B grade 3, 39 lymph nodes involved , and as of last week's scan-  27 months

in remission!  Close to 3 years since my surgery. I think daily if there's anything I'm doing differently than everyone else, something that might work for

others . The only thing  I can think of is BLACK RASPBERRIES -I have been eating them daily in a smoothie for over 2 years. Google  "black raspberries

and cancer" and you will see awesome study results - better than other berries. I know that few people can be eating them because they're only available

online and are shipped frozen at some expense (Frank Farms.com)  I realize few people will go through the expense and bother. But who knows?

Something is working for me - maybe it will work for someone else.  I read somewhere that the raspberry supplements don't work as well as the real thing

and one must eat them first thing in the morning on an empty stomach. Worth a try. I even bought a Vitamix this week so that the tiny raspberry seeds would be crushed

and I could benefit from them too. I also follow a diet similar to Jazzy but no meat or poultry.


Sara Zipora's picture
Sara Zipora
Posts: 231
Joined: Sep 2010

Dear Ro,

I know it is selfish to say don't be blue, anxious or worried, when a new stumbling block gets thrown your way, but your openness and help has been a beacon to us all. As a once 'newbe', Dx in 2010, with Stage 4B Adenocarcinoma Clear and Mixed cell etc etc etc, I know how personally important your smiling face is.  We are all here holding hand to form a circle keeping out the pain and constant battles, while at the same time linking , whether writing or lurking, with each other against this horrible incursion into our selves.

Do share , as you are and have been, your ups and surely your downs, but also, please know that we are here for you, just as you are here and have been for us.

May we all gain from eachother's strength and fight on another day. Continue to Live Large and do what you do so well (nice lyrics).


Sara Zipora

Posts: 266
Joined: Apr 2011

Hi Ro:


  I wish you all the best with your upcoming cat scan.  Let us know your results.  I will keep you in my prayers. 

  I also am thankful for each and every day as cancer does change you.  


Posts: 92
Joined: Dec 2012

I too am thankful for every day that you are here. You are such an inspiration to many on this site.

Fingers crossed and high hopes for good results with your CT scan.    

Posts: 17
Joined: Feb 2013

Hi, I also have been following your journey and you are such a wonderful person.  Your posts and comments are both helpful and hopeful!  I remember reading that you have a lot of allergies and such...my Mom's Gyno/Ocn told her to not put too much faith in that pesky CA-125 number.  It can spike for the nullest of reasons....allergies (hey we are in peak-pollen season), fighting a cold or infection and any sort of inflammation!  Our doctor has said she has seen people filled with tumors who have the CA125 in range or not even registering and on the other side of the spectrum, she has seem people with it in the 1000's and they are cancer free.  Isn't that why they dont use CA125 as a pre-screening?  So in my humbler view, you are going to be fine!!!!!  You are so strong and positive!  My thought and prayers are with you and every dear woman on this thread.  Your ARE going to see NOTHING on that CT Scan!!!!!!!  :)  Stay Well!

Double Whammy's picture
Double Whammy
Posts: 2831
Joined: Jun 2010

We all know I don't know what the heck I'm talking about, but it does seem that, for you at least, this number may not mean all that much.  Good grief, it was a huge numbre 2 times and it's no where near that level.    I'm sure you're uneasy about the increase and the recent loss of MaryAnn has got to add to that.  I wish you luck on your scan and hope that the Aromosin is in fact keeping the beast in it's place. 

Sending hugs and prayers,


sunflash's picture
Posts: 197
Joined: Aug 2011

Thank you so much in keeping us posted. Thankful you haven't had a large increase in your CA125, and praying your CT scan shows all is well with you. 

Sending my love and prayers to you..........

Ro10's picture
Posts: 1579
Joined: Jan 2009

I appreciate all  the words of encouragement.  My doctors both prefer the CAT scan for comparison of what has happened previously.  I have never have had a PET scan or a CT/PET.  My allergies that I mentioned are drug allergies.  The pollen does not bother me too much.  

The reason I wanted the CAT scan in July is because we have a deposit down for a trip to Australia and New Zealand in October.  It is a 25 day trip.  We have until August 1 st to cancel or pay the final deposit.  That is why I hope I get a good CAT scan.  I am believing that the CA 125 is still a good marker foor me and the cancer is growing slowly.  I believe the Aromasin is slowing the growth.

We had 13 inches of rain in a week.  We got rain in the basement for the first time in 44 years.  We have been cleaning up water for more than a week.  Time for major clean out.  The gardens have loved all the rain.  Now the gardens want some warmer weather.  I am happy to have the energy to work in the gardens and enjoy the flowers.  

I hold everyone close to my heart and hope you are all having a good weekend.  In peace and caring.

TAyers's picture
Posts: 86
Joined: Aug 2012


It is good to hear you have the energy to work in the gardens. What an awesome trip you WILL get to go on to Australia and New Zealand. Thanks for answering my question about the CT/Pet scan. My doctor rather do CT scans too. I have one on Monday. Praying for you. Tami

Posts: 1551
Joined: Jun 2012

Having them seems to work for you, Ro.  You got through your Florida time without chemo so just keep setting them.  My mom did Australia some years ago and had a great time.  New Zealand has always fascinated me.  I am going to look forward to hearing about your trip.  Do you knit?  They make great yarn.


Tami, good luck with the CT scan Monday.

Ro10's picture
Posts: 1579
Joined: Jan 2009

Here's hoping you get good results from your CAT scan.  It is always anxious time waiting for the tests and then really anxious time waiting for the results.  In peace and caring.

Kathy G.'s picture
Kathy G.
Posts: 223
Joined: Dec 2012


Just wanted to let you know I am thinking of you and praying this is just a bump on the road! I have been meaning to respond since you posted, but either this board acts up or I get interupted.

You have been such a leader on this board, but even leaders are entitled to feeling anxious or worried. Especially when the ones you came on this board with have struggles so or are gone.

I have faith you will be fine.

Please keep us updated your your CAT scan results.

And I really envy you your vacation! ENJOY!


txtrisha55's picture
Posts: 690
Joined: Apr 2011

This is really good news for you and I am glad that you still consider it good news.  Keep on doing what you are doing and I pray that it remains in check.  Hopefully you will get to go on your trip.  That is my dream bucket list vacation spot. Especially the New Zealand part, this is based on the movie Lord of the Rings, such beautiful scenery in the movie.

 I am still doing OK.  I go back in July still doing every 3 months.  Last time I asked about moving to every 6 but she said not yet as it has not been 2 years yet.  She said before she would consider it I would have to have another round of full workups and CT scan.  I just had that done in Jan and got the all clear.  So maybe in Jan 14, I can have the full workup again and then go to every 6 months.  Wait and see.  Praying that you get some sunshine and time in your garden. trish


txtrisha55's picture
Posts: 690
Joined: Apr 2011

I had to back to your profile to look at past pictures to make sure who you were.  I recognized the name but not the face.  Amazing what a new hairdo will do for you.  It makes you look younger and very pretty, not that you were not before but it is very flattering to your face.  Love the color, too. trish

Fayard's picture
Posts: 438
Joined: May 2011

I am happy you are still strong and full of life...keep it that way!

LizGrrr's picture
Posts: 124
Joined: Nov 2011

You consistently show us and the world what fighting is all about.  Everyone has a different approach to their treatment, and yours has such a strong sense of resolve and no-nonsense let's-get-on-with-this.  I hope you know you are a role model (a Ro model?).


With admiration

Liz in Dallas

Lesa Plano's picture
Lesa Plano
Posts: 12
Joined: Dec 2012

Ro Please know that when I am in the midst of the wormy thoughts (I call them that because they just creep in and roll around and do no good) I remember you and the others here who give me hope of what tomorrow will be.  If we are strong and fight for our lives then we can still be here for each other and our families.  I believe positive thinking will help us all.  Because of you Ro, I don't lose hope for myself.  My CA125 is down from 2276 to 21!!  My last chemo did not go well but I know there will be another answer for me and with the knowledge you share with us I now know I can have the carbo again in the future, just not right now.  Each of us is different but the same, looking for hope and tomorrow and happy to be here to talk about it today.  God watch over us all and give us strength and a cure!!

Posts: 3
Joined: Mar 2013

Hello Lesa,

I am just curious and was reading all these posts. My mother has uterine cancer and her ca-125 is now at a 12. it went as low as a 10. I thought the doctor would stop chemo and then we would just keep a close eye. instead he said that she will keep doing chemo every week at low dose. which is what we have been doing for awhile. i thought a "12" was a good thing, but it seems bc it doesn't continue to get lower he might not think it is a good thing. I don't like to ask the Dr. too many questions in front of my my mother, just in case his response is not good. Anyway, i was wondering now that you are at a 21, if you don't mind sharing with me, what your Dr. is planning for you. My mother gets Evastin one week, and taxol for the next two, and then Repeat, all at low doses.

Posts: 3
Joined: Mar 2013

Hello Lesa,

I am just curious and was reading all these posts. My mother has uterine cancer and her ca-125 is now at a 12. it went as low as a 10. I thought the doctor would stop chemo and then we would just keep a close eye. instead he said that she will keep doing chemo every week at low dose. which is what we have been doing for awhile. i thought a "12" was a good thing, but it seems bc it doesn't continue to get lower he might not think it is a good thing. I don't like to ask the Dr. too many questions in front of my my mother, just in case his response is not good. Anyway, i was wondering now that you are at a 21, if you don't mind sharing with me, what your Dr. is planning for you. My mother gets Evastin one week, and taxol for the next two, and then Repeat, all at low doses.

Posts: 10
Joined: Nov 2012

Wishing you good results on your scan.Your in my prayers.Thanks for being such a helpful,kind person.

Posts: 471
Joined: Feb 2011



Sorry I've been away from the boards for a few months, but checking in today, want to encourage you to be optimistic.

I think you are consitutionally stronger than our dear Linda and Mary Ann--so even if you were all diagnosed at about the same time and at the same stage, that doesn't mean that your "expiration dates" will be similar.

I think your fighting spirit and great outlook will keep you around a long long time, dear.

Just sorry to hear that your CA125 has recently risen: another bump in the road that I am sure you'll transcend!

Stay well and upbeat,





fuzzytrouble's picture
Posts: 213
Joined: Feb 2009

I am so happy to see you still on here. After so many of our sisters passed in the last couple of years i just got depressed with this site. Someone posted Linda P's picture on Facebook and it was like she was telling me to go back and support everyone. Here I am and I see lots of names I remember. I was on with you, Linda, Marge, Deena, and so many others. I still have cancer in my lungs and on my vaginal cuff I am on a pill now for anti estogen and it seems to to doing a great job. I even have had a new grandson born since 2007, I was one of the lucky ones to still be here. I won't go away again. 

Ro10's picture
Posts: 1579
Joined: Jan 2009

I have thought about you often and wondered how you were doing.  I know you had such a hard time with Doxil.  Glad you are off of it now.  Sorry to hear you still have the cancer in your lungs and vaginal cuff.  What pill are you on.  I am on Aromasin and it has slowed down the rise of my marker.

Congratulations on your new grandson.  I love the picture of your grandkids.  Do they still live so far away from you?  Hope you get to enjoy them often.  

I am glad you are back to give support to others.  The new people nred to know that they can live for years with this diagnosis, and if one chemo does not work, there are others to try.  So happy to hear from you.  In peace and caring.

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