Linda has competition.......

nancy591
nancy591 Member Posts: 1,027 Member
edited March 2014 in Ovarian Cancer #1
My ca125 went up 1000 points in 5 wks. 1000!!!!! Holy cow. Unfortunately I read this news online last night right before I went to bed. I don't think I will be checking my labs anymore....well....maybe not on a Friday night anyway. THANK YOU LisaQ13 for talking to me last night. It really helped me from escalating into a full blown panic attack. I am now taking it in stride....well... for now. Seriously considering keeping anti anxiety meds on hand for emergency use.
I will speak with the onc in NYC on Monday about the results but what can he say? I will probably continue with 3 infusions and then scan as scheduled. I had my 2nd infusion yesterday so will probably scan the week of Feb 28th. No worsening of bowel symptoms. Physically I feel the same. My last two scans showed VERY little progression.

Hanging in there and feeling strong!
Nancy

Comments

  • jloe
    jloe Member Posts: 174
    Oh my!
    I hate waiting until the next business day to get answers. The cancer doesn't take weekend and holidays off. Could the treatments be causing some of the rise in your ca125? I know when I was on IP treatments they warned me about that and not to be too alarmed if or when it happened. Unfortunately, my ca125 is always low even though there is disease present so it's not a good indicator for me.
  • kayandok
    kayandok Member Posts: 1,202 Member
    Holy Cow!
    is right! I'm glad you had someone to process with after hearing such news. I am amazed at the speed that you process in order to say at the end that "you are feeling strong!" You are an absoulely amazing woman!

    I think we all know that around the corner at any time there is going to be a blow that will be harder than the others, and in some ways we brace ourselves, but it is difficult when it comes out of the blue. I have some anti-anxiety pills on hand now, as that has happened a few times. When I went to the doctor a few weeks ago because I thought I was having a blood clot, for example. Totally my bogus mind playing tricks on me. But, it had been a couple years since I had actually "paniced" and I didn't have anything on hand to take. When they gave me the traq at the hospital and I could calm down, I felt like I could deal with whatever info I needed to process. As it turned out, it was carpotunnel kind of thing (inflamation of the sheath of the tendon) in my shoulder. I did get a cortizone shot the next day and the intense pain was gone in a week. THe sharpest pain I have had in one tiny little spot affecting the rest of my body, I have ever had.

    Anyway, back to your number. Please keep us posted as what your doctor says and know I am praying for you that you can take it a step at a time and get to the bottom of this.

    (((((((HUGS)))))))) and prayers, Nancy
    kathleen
  • nancy591
    nancy591 Member Posts: 1,027 Member
    liver inflammation
    I am hoping that my elevated ALT and AST is indicative of liver inflammation which in turn is causing my ca125 to jump so high.
  • srwruns
    srwruns Member Posts: 343
    nancy591 said:

    liver inflammation
    I am hoping that my elevated ALT and AST is indicative of liver inflammation which in turn is causing my ca125 to jump so high.

    I hope so too. They won't
    I hope so too. They won't post our results on line ... or even give them to us until we have spoken with "someone" It can be the doc or nurse or resident. I didn't like it at first but I would fold from the anxiety. Best thoughts for Monday Susan
  • Cindy Bear
    Cindy Bear Member Posts: 569
    Hi Nancy
    I won't tell you not to worry because You're going to worry, it's only natural. I am as always, amazed by your strength and courage. If it were me, I'd probably be curled up in the fetal position sucking my thumb. Try to enjoy the weekend (and stay warm!!) . Hopefully, your doctor will be able to answer your questions Monday and ease your concerns.
    Hugs,
    Cindy
  • Disneynutt
    Disneynutt Member Posts: 134 Member

    Hi Nancy
    I won't tell you not to worry because You're going to worry, it's only natural. I am as always, amazed by your strength and courage. If it were me, I'd probably be curled up in the fetal position sucking my thumb. Try to enjoy the weekend (and stay warm!!) . Hopefully, your doctor will be able to answer your questions Monday and ease your concerns.
    Hugs,
    Cindy

    I'll just bet it's some kind
    I'll just bet it's some kind of inflammation. How could it go up that much in such a short time? That's just nutty. Believe me, I know the feeling of panic though and it's horrible. I hope you are better today.

    -Kate
  • hopeful girl 1
    hopeful girl 1 Member Posts: 454

    I'll just bet it's some kind
    I'll just bet it's some kind of inflammation. How could it go up that much in such a short time? That's just nutty. Believe me, I know the feeling of panic though and it's horrible. I hope you are better today.

    -Kate

    It may be something else making CA125 raise
    Is it possible the raise in CA125 was from the national issue of problems with CA125 test processing that was going on recently?

    Or perhaps some kind of inflammation as others suggested?

    Try not to panic, since you are feeling ok, perhaps it is just something else temporarily making the number jump.

    Healing and peaceful thoughts to you.

    Cindy
  • Chemo_Princess
    Chemo_Princess Member Posts: 105
    Holy cow indeed
    I hate to hear this news. Stay strong Nancy!! You are in my thoughts and prayers.
    Blessings,
    Natalie
  • upsofloating
    upsofloating Member Posts: 466 Member
    Nancy, that is scary but
    Nancy, that is scary but since things have somewhat stable if not resolving there may well be another explanation, the liver issue for one or perhaps the new chemo regimen affecting numbers. Sending positive thoughts and prayers your way to make it so.
    Annie
  • lindaprocopio
    lindaprocopio Member Posts: 1,980 Member

    Holy cow indeed
    I hate to hear this news. Stay strong Nancy!! You are in my thoughts and prayers.
    Blessings,
    Natalie

    ((((Nancy))))
    We sure are travelling side by side, sweet girl. ARGH!! Gotta hang onto the fact that we both still FEEL good, so even if they can just get us stablized and halt the progression where it is, we can both remain symptom free. & to my way of thinking, symptom-free means you can live your life as if you don't have cancer (except for the rude interruptions of treatments).

    You really think they will keep you on the same chemo for several more infusions? I wanted to go ahead and get another carbo infusion on Thursday (since my other blood labs were good enough to get chemo), even with the spiking CA125, because I wanted to have SOMETHING possibly in there working at least a little during the delays that can happen when you're scheduling scans, and getting pre-certs for new drugs, and tumor boards are conferring. But my chemo-onc is so concerned about the spike in my CA125 (which has been an excellent marker for me) that he is already convinced that carbo doesn't work for me and wants a new CT/PET for a baseline for the NEW chemo we will start next. I almost wish he would do like your oncologist and just ride the carbo out until late February when we would have typically done a CT/PET anyway.

    I have heard that it can take some time for Avastin to lower CA125. Maybe your oncologist believes your cytoxin/avastin just hasn't kicked in yet and that the CA125 spike is temporary and will drop with the same drug combo?
  • nancy591
    nancy591 Member Posts: 1,027 Member

    ((((Nancy))))
    We sure are travelling side by side, sweet girl. ARGH!! Gotta hang onto the fact that we both still FEEL good, so even if they can just get us stablized and halt the progression where it is, we can both remain symptom free. & to my way of thinking, symptom-free means you can live your life as if you don't have cancer (except for the rude interruptions of treatments).

    You really think they will keep you on the same chemo for several more infusions? I wanted to go ahead and get another carbo infusion on Thursday (since my other blood labs were good enough to get chemo), even with the spiking CA125, because I wanted to have SOMETHING possibly in there working at least a little during the delays that can happen when you're scheduling scans, and getting pre-certs for new drugs, and tumor boards are conferring. But my chemo-onc is so concerned about the spike in my CA125 (which has been an excellent marker for me) that he is already convinced that carbo doesn't work for me and wants a new CT/PET for a baseline for the NEW chemo we will start next. I almost wish he would do like your oncologist and just ride the carbo out until late February when we would have typically done a CT/PET anyway.

    I have heard that it can take some time for Avastin to lower CA125. Maybe your oncologist believes your cytoxin/avastin just hasn't kicked in yet and that the CA125 spike is temporary and will drop with the same drug combo?

    ca125
    I just dont' get it. My ca125 was 720 when I was initially diagnosed...and I had a full blown bowel obstruction. I am hopefuly my elevated ALT and AST is from liver inflammation which is causing my ca125 to rise. It just seems too weird. I googled ca125 and liver issues will cause it to rise. HOPEFULLY this is why. I will send a message to my onc tonight and follow up tomorrow morning. Sheesh.
  • childofthestars
    childofthestars Member Posts: 251 Member
    Just read this!!!
    Hi Nancy
    Just read this post, do you have any answers yet?????
    Bright blessings
    Michelle x
  • nancy591
    nancy591 Member Posts: 1,027 Member

    Just read this!!!
    Hi Nancy
    Just read this post, do you have any answers yet?????
    Bright blessings
    Michelle x

    sort of....
    I was told the cytoxan is probably the cause of my AST and ALT levels rising. These rises can make the ca125 rise slightly. I was also told Avastin can make the ca125 unreliable. It is not unusual to have a large spike. That being said, they would want to see the level eventually going down. Since I have no change in symptoms they will go ahead with the 3rd infusion and then scan.

    I did read a conversation on another site where the women were talking about ca125 and avastin. Another woman on that site had a 1000 point up in one week then 1000 points down. So, hopefully, it is not atypical. I am not going to lull myself into a false sense of security though. I am always aware of the reality of my disease.

    thanks for asking!!!
  • MK_4Dani
    MK_4Dani Member Posts: 314
    Please?
    Can you two compete for the lowest score? I am thinking about you two, and all my teal friends, and praying for lower numbers.
    Hugs,
    Mary