I'm in real trouble now: CA125 almost doubled even though I've been getting carbo chemo. :(

lindaprocopio
lindaprocopio Member Posts: 1,980
edited March 2014 in Ovarian Cancer #1
I have that 'beginning of the end' feeling; maybe I'm just shell-shocked. I went this morning for my every-Thursday labs/doctor visit/fractionated carbotaxol chemo. Only this morning when I met with my chemo-onc, his opening words were "I'm not happy."

Seems my CA125 jumped up from 330 to 450 to 712 on the last 3 weekly draws, even though I've been getting a 1/3 dose of carboplatin each week (all my bone marrow can handle without my platelets and nuetrofil tanking below a safe level to get chemo). A 300-point rise in CA125 in a week!! He felt it would be a waste for me to even get the carbo infusion today, and sent me home without it.

Instead, he had the lab draw another CA125, just in case by some miracle it drops and we can continue to play around with carboplatin, but no one really holds out much hope for that miracle. He is trying to get me in for a CT/PET on Monday (just 2 months out from my LAST CT/PET!) and put his oncology nurse on the task of trying to get Topotecan approved for me or possibly Cytoxin and/or Avastin. Because I don't have OVC, but instead a rare aggressive form of recurrent endometrial cancer that mimics OVC, getting chemo drugs approved is really hard. & I my cancer is rarely included in clinical trials. And of course, with my compromised bone marrow, the next challenge will be if my body will even allow me to get the new chemo drug if approved.

I want to just lay in bed and cry, but that's so counter-productive, and my husband is already curled up there trying to work through the shock. How can I be symptom-free and still be in this bad place where no chemos seem to work for me? I feel so GOOD! My cancer is taking full advantage of my failed attempts with taxol, doxil, and now carboplatin. Monday's CT/PET is going to be scary, but at least we'll know what's going on.

I haven't told the rest of my family this morning's news yet; they will be devastated and I need to be able to tell it without crying. They all think I'm at chemo now. :(
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Comments

  • upsofloating
    upsofloating Member Posts: 466 Member
    Oh Linda, I realize this is
    Oh Linda, I realize this is very discouraging news, but first remember ca125 doesn't always tell the whole story, the CT/PET will be a much better indicator of what if anything is happening. Also, you still have a number of other chemo options - your treatment has been mostly focused on the carbo and taxol standard chemos, and Doxil has definitely only been a 'maybe' for many. I wish your doc had presented the news in a better way - he let his own concerns out in a rather scary way.

    My worst concern for you is that it seems like you are your main support system; that you are the one who is the strength in your family. Now is the time for them to step up and be strong for you. But you can always come here, we have your back. Cry, rant, whine, whatever, with no concern that we would ever think any less of you and the strong woman you are and most likely have always been.

    Take heart in the fact that you feel well and are able to enjoy life - kick that ca125 number out of your head and go eat, drink, and be merry! And drag your hubby to the party as well.

    Sending positive thoughts and prayers your way.
    Annie
  • nancy591
    nancy591 Member Posts: 1,027 Member
    chemo
    Linda,
    I know it is disheartening to get such news. Sounds like something probably is going on. (SIGH) I do agree that you haven't been on a lot of diffent chemos. Your treatment mostly focused on carbo/taxol. The truth of the matter is Topo, Doxil, Gemzar and others DO work on some women. I read that Avastin works best in combination with other drugs so I hope, if you go that route, you won't be taking it alone. The cancer might have built up a resistance to the other meds. We know this happens.

    Carbo IS hard on the bone marrow. My 2nd infusion was delayed. On the other medications I have not had any bone marrow issues. I can't recall if you had Doxil before? There is parp/doxil trial going on now. I don't qualify because I was on Doxil already. LisaQ13's Mom is on that trial now. My onc keeps telling me I have very little disease and have not been on a lot of chemo. I feel like I've been on a ton of chemo!!!! It has been 13months straight now.

    Allow yourself to mourn the news. It IS sad!!!! But it doesn't mean you should count yourself out. I am not counting myself out!!! I go for my 2nd infusion tomrrow AND my ca125. I am scared ****!! I've been feeling good. Busy as usual. I don't want to waste too much time worrying.

    {{{{LINDA}}}}}

    thinking of you.
    XOXOXOXOXO
  • Cafewoman53
    Cafewoman53 Member Posts: 735 Member
    I'm sorry
    I don't know what to say to make you feel better, this is so hard for those of us whose families look to us for support. Wait for your ct/pet scan results it may be something that they can deal with. I am glad that you feel good and I think that must mean something ! You are in my thoughts.
    Colleen
  • antcat
    antcat Member Posts: 270
    CA 125 double
    Hi Linda, I know what you're going thru with the CA 125 results. I have ovarian cancer and I don't know how reliable that blood test is. My was always under the norm of 35 and I still had recurrent ovarian cancer with 3 operations. I was on Doxil recently (for 3 cycles) and I didn't have good results with it. When I was on Doxil, my CA 125 rose although I knew that would happen because I did some research on it. I am now on Avastin and Cytoxan and will be going for my 3rd treatment next month and then another CT scan.

    I think it's terrible the way some of these oncologists are in the way they talk to people. My 1st oncologist was great, then when I went to see him the second time, he was very rude, I should never have continued with him but I did. The 2nd oncologist told me I had no hope, that I would never be cured and the 3rd oncologist was like "it's my way or no way". I didn't even continue with her, I just went for a consultation. As my gyn/oncologist tells me all the time (he is absolutely great), no one can say you have no hope, there is always hope. And, right now, I'm trying to hold onto that, I went to MSK cancer center in NYC and am very happy with my oncologist. I wish you the best.
  • kikz
    kikz Member Posts: 1,345 Member
    antcat said:

    CA 125 double
    Hi Linda, I know what you're going thru with the CA 125 results. I have ovarian cancer and I don't know how reliable that blood test is. My was always under the norm of 35 and I still had recurrent ovarian cancer with 3 operations. I was on Doxil recently (for 3 cycles) and I didn't have good results with it. When I was on Doxil, my CA 125 rose although I knew that would happen because I did some research on it. I am now on Avastin and Cytoxan and will be going for my 3rd treatment next month and then another CT scan.

    I think it's terrible the way some of these oncologists are in the way they talk to people. My 1st oncologist was great, then when I went to see him the second time, he was very rude, I should never have continued with him but I did. The 2nd oncologist told me I had no hope, that I would never be cured and the 3rd oncologist was like "it's my way or no way". I didn't even continue with her, I just went for a consultation. As my gyn/oncologist tells me all the time (he is absolutely great), no one can say you have no hope, there is always hope. And, right now, I'm trying to hold onto that, I went to MSK cancer center in NYC and am very happy with my oncologist. I wish you the best.

    The morning of my debulking surgery
    I got the result of the latest CA 125. It was 1600. The previous one was 800. When the surgeon came in I asked about it. He was quiet and stated he had not seen that result. He had no explanation for it. This was after three rounds of chemo where it had gone down incrementally from a high of 9000+. So was it an error or what? Unfortunately for us medicine is not an exact science. I wish you the best.

    Karen
  • srwruns
    srwruns Member Posts: 343
    My thoughts are with you.
    I am deeply saddened by this news. The roller coaster rides in dealing with this disease are anything but thrilling. Susan
  • clamryn
    clamryn Member Posts: 508
    Dear Linda
    I wish I was right there with you to give you a big hug and we could just sit and hash it out. First, zero in on the the most important fact... YOU FEEL GOOD. Second, I would tell you to occupy your mind with other things... but I know you will do this because you have your business to run and from your posts, you are a busy lady. Third, (I know you are going to think I am nuts) go buy yourself one of those laughing animals that roll around on the floor. They laugh and laugh and laugh and they don't stop unless you turn it off. I saw one the other day in the toy department and I told myself I am going to get me one and when I feel down, I am going to set it off.

    Linda, after my last PET/Scan, my doctor told me he wasn't happy with it. Because my tumor had grown. My daughter-in-law was with me at the time and she asked the dreaded question ..."Is this all doom and gloom?" He said, "No way, there are lots of things we haven't tried."

    I think some of our doctor's get just as frustrated with trying things as we do.

    I am going to pray that your PET/CT scan will show that there was no reason for that jump in the CA125.

    Do you have any people around you that are positive people. That is what you need also. They can help you through this. The negative ones only bring you down.

    Lots of prayers and positive thinking coming your way.
    Linda
  • Disneynutt
    Disneynutt Member Posts: 134 Member
    Hey Linda. I'm so sorry
    Hey Linda. I'm so sorry that you are on the downside of the roller coaster ride but remember there are other treatments out there and you have not exhausted your options. Avastin worked great for me so maybe they will try that. It doesn't compromise your blood values either.. at least it didn't for me. Another doctor?? That is always an option too. Keep the faith, baby. You aren't done yet!

    At least your are symptom free. That is always a blessing.

    Best wishes!!!!

    -Kate
  • Cindy Bear
    Cindy Bear Member Posts: 569
    Hi Linda
    I am sorry to hear this news.. however, as other posters have said, there are still chemo options out there for you.. also, is it possible that the CA just isn't a good indicator for you anymore? I think it's amazing that you feel so well, after all the treatments and scans and shots, with virtually no symptoms.. There's not much you can do until the scan Monday.. so try to keep busy (We know you will) ,and treat yourself.. I have one word for you ... Cheesecake!!!!!
    Hoping for better news next week and a new treatment plan for you.
    Hugs,
    Cindy
  • Cindy Bear
    Cindy Bear Member Posts: 569
    oops
    double post...
  • AMSloss
    AMSloss Member Posts: 3
    Stay Positive!
    I am new to this site. But stay positive. Have you changed your diet since your cancer started? Read Anti-Cancer A new Way of Life by Dr. David Servan-Schreiber MD PHD. Are you taking any supplements to strengthen your immune system? CA-125 can go up for other reasons too. I will be keeping you in my prayers. Annette
  • vj1
    vj1 Member Posts: 150

    oops
    double post...

    Linda
    Wish your post was better, but I agree with the other ladies. Be strong, surround yourself with positive people. My thoughts and prayers are with you.

    Verna
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    Hello Linda
    I was so sorry to read your post but as the other ladies have said ................ you are feeling well which has got to count for something. I think your doctor's reaction was not very professional but lets face it 712 is not enormous. I know it is a jump from your previous CA125 but it is still way lower than mine on my reaccurance (mine jumped from 70 to 1280) That was in Sept last year and now, after 2 infusions of chemo it is 220. What I am trying to say is that THERE IS ALWAYS SOMETHING ELSE THEY CAN TRY. Oncologists have lots and lots of options and I hope and pray that yours can find the treatment that will work for you.
    Much love Linda Tina xxx
  • MK_4Dani
    MK_4Dani Member Posts: 314
    Oh Linda. A hug for you
    Oh Linda. A hug for you this evening and an extra prayer. Like Tina said, your doc has more weapons to use. Hopefully, the insurance will pay: fight them for an approval.
    Mary
  • Tethys41
    Tethys41 Member Posts: 1,376 Member
    AMSloss said:

    Stay Positive!
    I am new to this site. But stay positive. Have you changed your diet since your cancer started? Read Anti-Cancer A new Way of Life by Dr. David Servan-Schreiber MD PHD. Are you taking any supplements to strengthen your immune system? CA-125 can go up for other reasons too. I will be keeping you in my prayers. Annette

    So Sorry Linda
    That is news no one wants to hear. I reiterate what AMSloss is saying. Try some other approaches along with your treatments. Change your diet. Cut out sugar completely. The Cancer Fighting Kitchen Cookbook is filled with great recipies that will not feed the cancer but will fight it. The book Anti-cancer is a great resource. See if you can find an integrative medical person who can administer hight dose vitamin C. Check out the product on this website:
    http://www.giftofhaelan.com/
    There are stories that this product stops cancer in its tracks. It tastes horrible, but who cares? I'm taking it because my naturopath says it kills the cancer stem cells that survive chemo.
    You don't have to just wait to see if the chemo is working, there are a lot of things you can do to fight this yourself.

    Fight hard,
    Kate
  • Tasgirl
    Tasgirl Member Posts: 85
    Hi Linda
    I am so sorry to

    Hi Linda
    I am so sorry to hear about the rise in your CA125. I pray that your CT/PET scan goes well.
    My oncologist has always said not to be fixated on the CA125 (which is easy for him to say) as there are other reasons why the CA125 can be high.
    I will pray for you. Jenny
  • zinaida
    zinaida Member Posts: 221
    nancy591 said:

    chemo
    Linda,
    I know it is disheartening to get such news. Sounds like something probably is going on. (SIGH) I do agree that you haven't been on a lot of diffent chemos. Your treatment mostly focused on carbo/taxol. The truth of the matter is Topo, Doxil, Gemzar and others DO work on some women. I read that Avastin works best in combination with other drugs so I hope, if you go that route, you won't be taking it alone. The cancer might have built up a resistance to the other meds. We know this happens.

    Carbo IS hard on the bone marrow. My 2nd infusion was delayed. On the other medications I have not had any bone marrow issues. I can't recall if you had Doxil before? There is parp/doxil trial going on now. I don't qualify because I was on Doxil already. LisaQ13's Mom is on that trial now. My onc keeps telling me I have very little disease and have not been on a lot of chemo. I feel like I've been on a ton of chemo!!!! It has been 13months straight now.

    Allow yourself to mourn the news. It IS sad!!!! But it doesn't mean you should count yourself out. I am not counting myself out!!! I go for my 2nd infusion tomrrow AND my ca125. I am scared ****!! I've been feeling good. Busy as usual. I don't want to waste too much time worrying.

    {{{{LINDA}}}}}

    thinking of you.
    XOXOXOXOXO

    Hi Linda! I agree very much
    Hi Linda! I agree very much with every thing what Nancy said. It is not over yet. Love you. Pray for you. (((HUGS))). Zina.
  • Sandy10
    Sandy10 Member Posts: 80
    Sorry
    Linda,

    As everyone else has already said...DO NOT GIVE UP!! There are other chemos to try. Throw the kitchen sink at it!! You are symptom free and feeling good, that has to count for something. I will be praying for you. You are a fighter!!! Like someone else said, grab your husband and go get some cheesecake!!! then, put your gloves back on and come out fighting!!! we are with you!!! ((((HUGS))))

    Sandy
  • childofthestars
    childofthestars Member Posts: 251 Member
    Staying strong
    Hi Linda
    So sorry to hear your news you must be feeling absolutely terrible and terrified BUT remember there are still many options out there for you. But most importantly you have a right to feel down and frightened and you should allow yourself to be like this for today BUT tomorrow be positive again. You seem like such a strong and positive person from what i've read.
    My oncologist has written a paper on the value of taking the CA125 test as gospel and in fact i'm scheduled for my first 3 monthly check up on 1 March and will only be having a CA125 if i am having any symptoms I will not be having it as a matter of course. My oncologist says that recent studies have shown that patients respond better to chemo once they are symptomatic NOT as soon as their CA125 levels start to rise, apparently the cancer is more sensitive to chemo then.
    Wishing you best of luck
    Bright blessings
    Michelle x
  • kayandok
    kayandok Member Posts: 1,202 Member
    (((((((((Linda))))))))
    I am sad for you and also mad at cancer, after reading this! What chemo's are FDA approved for PPC? It will be good to get another scan to see exactly what is causing the number to go up. Maybe it is something they can go in and remove? It is so odd to me that you have no symptoms but also a blessing that you have no discomfort or pain. I have discomfort and even some pain when the CA goes up to 120 or so.

    I am praying that they can find a treatment for you. And for your relationship with your family. Mostly I am praying for a miracle of healing! (I agree with one of he earlier posts that you seem to be the pillar in your family, and that has to be added stress for you.)

    love you,
    Kathleen