CA 125continues to rise

Ro10
Ro10 Member Posts: 1,561 Member

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. 

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Comments

  • debrajo
    debrajo Member Posts: 1,095 Member
    So Glad...

    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
    HellieC Member Posts: 524 Member
    Debrajo is right - stay with us, Ro!

    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
    Helen

  • TAyers
    TAyers Member Posts: 86 Member
    HellieC said:

    Debrajo is right - stay with us, Ro!

    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
    Helen

    3C

    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
    jazzy1 Member Posts: 1,379
    TAyers said:

    3C

    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

    Ro

    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~

    WE ARE A STATISTIC OF ONE~

    Hugs,

    Jan

     

  • ConnieSW
    ConnieSW Member Posts: 1,677 Member
    jazzy1 said:

    Ro

    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~

    WE ARE A STATISTIC OF ONE~

    Hugs,

    Jan

     

    Living large

    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
    Kaleena Member Posts: 2,088 Member
    Thinking of you

    Ro,

    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.

     

    Kathy 

  • Ann55
    Ann55 Member Posts: 48
    I am new to UPSC and have

    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
    Cindy Bear Member Posts: 569
    Keep living large

    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.

  • artist49
    artist49 Member Posts: 87
    Prayers for you

    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
    Sara Zipora Member Posts: 231
    Keep on going, your Largess is what keeps us going!

    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).

    ((((Hugs))))

    Sara Zipora

  • cheerful
    cheerful Member Posts: 261 Member

    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.  

    Cheerful

  • NorahS
    NorahS Member Posts: 92
    cheerful said:

    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.  

    Cheerful

    Dear Ro...

    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.    

  • treebee
    treebee Member Posts: 17
    CA 125 Rising

    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
    Double Whammy Member Posts: 2,832 Member
    treebee said:

    CA 125 Rising

    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!

    Keeping things in perspective

    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,

    Suzanne

  • sunflash
    sunflash Member Posts: 197 Member

    Keeping things in perspective

    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,

    Suzanne

    Thank you so much in keeping

    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
    Ro10 Member Posts: 1,561 Member
    sunflash said:

    Thank you so much in keeping

    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..........

    Thank you for all the support, kind words and prayers

    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
    TAyers Member Posts: 86 Member
    Ro10 said:

    Thank you for all the support, kind words and prayers

    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.

    Ro,
    It is good to hear you

    Ro,

    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

  • ConnieSW
    ConnieSW Member Posts: 1,677 Member
    TAyers said:

    Ro,
    It is good to hear you

    Ro,

    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

    Goals

    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
    Ro10 Member Posts: 1,561 Member
    TAyers said:

    Ro,
    It is good to hear you

    Ro,

    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

    Tami

    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.
    Kathy G. Member Posts: 244 Member
    Ro10 said:

    Tami

    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.

    Ro,
    Just wanted to let you

    Ro,

    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!

    Kathy