Need Advice and Support

ladyjogger31
ladyjogger31 Member Posts: 289
edited March 2014 in Ovarian Cancer #1
Hi,
I do not know what to do, I am really upset. My doctor in Lehigh scheduled me for 8 treatments of cabo/taxol . I live one and a half hours from there, so I having my treatments in Dunmore, Pa. It is only 5 minutes from my house, I was asked if I wanted to be in a clinical trial of Avastin .So I agreed, and however, when I did this they cut my Chemo down to 6 instead of 8. I am going to stop the clinical trial. I really don not think I am getting it. I went for my 6th and last Chemo today; they took my CA-125 before Chemo to see what it was after the 5th Chemo. It came down from 151 to 95, not a big drop. The nurses said to me don not expect it to go normal. I. The nurse told me that some people NEVER go to normal. And that I will be watched. If your counts do not go to normal, that means there is still cancer. Is this true? This board has given me good advice; I hope you can tell what I should do. Should I ask for the last 2 treatments or ask what there next plan will be. I have been crying all day. Hugs and Prayers
Terry

Comments

  • Unknown
    Unknown
    #2
    This comment has been removed by the Moderator
  • Unknown
    Unknown
    #3
    Terry, I wish that I knew more about the ca-125 markers. I have heard that there are many things that can raise the number such as inflammation etc...I agree with you though about the chemo---I too would want the last 2 treatments. Are you still going to be in the Avastin trial? If so, is that why they want to shorten the chemo? Maybe the Avastin would have the same effectiveness as adding the 2 additional treatments. I know that these decisions are so overwhelming and stressful. I will keep you in my thoughts and pray that you will make the decision that you will feel peaceful with. The number is going down and that is the right direction. I know the thought that there might still be cancer cells floating around in your body is very distressing. Try to focus on the number dropping and the rest of the treatment will continue to do its work. Try and be positive-the mind is VERY powerful. I am sending you hugs, positive thoughts and prayers. Eil
  • saundra
    saundra Member Posts: 1,370 Member
    #4
    I had 8 doses of Taxol/Carbo at the beginning of my treatment and then went to the maintenance dose of 12 Taxols. So I know they give a series of 8 in Texas. How are your white and red cell counts? If they went too low that may be why you were cut short. My oncologist goes over the blood test in detail with me and I have a CA125 each month because it is considered a "good marker for me". I'm Stage IV. I see the oncologist before each infusion. I hope you get your questions answered by your oncologist soon. Saundra
  • mopar
    mopar Member Posts: 1,972 Member
    #5
    Terry: I read your second post first. How wonderful that you are NED (no evidence of disease). As for the CA125, there is no real 'normal' number that any of us can count on. Certainly, the higher numbers are self explanatory. But that drop from 151 to 95 is very good, in my opinion. And when all is said and done they will take your last readings and keep a watch on it. For me, after the first time (in 2000), my 'normals were from 13-19. Fluctuations occurred from time to time, as with everyone. But when it consistently starting rising, that's when it was time to move in to check further. So, you will have your own gauge to go by. I agree that there can also be microscopic areas leftover, and that why they continue treatments even after NED sometimes.

    Please don't be too upset. I know how hard this is, but we will ALL be watched from here on. So, that doesn't necessarily indicate there will be a bigger problem.

    Luv and Hugs and Prayers to you, Terry. Take care and keep us informed.

    (((HUGS)))
    Monika
  • floridajo
    floridajo Member Posts: 480
    #6
    hello,
    I agree with the other ladies. I would want more chemo,just to be sure. The nurses are correct some people's ca never goes into the normal range,that just means your super sensitive as far as the ca-125 is concerend. i know a lady whose ca-125 is 1000,and she still shows no disease. You will have find out what is normal for you. My numbers are always quite low,so when the begin to rise there is something brewin!. Good luck,I'm sure your Dr. will go along with you and give the last 2 treatments.
  • floridajo
    floridajo Member Posts: 480
    #7
    hello,
    I agree with the other ladies. I would want more chemo,just to be sure. The nurses are correct some people's ca never goes into the normal range,that just means your super sensitive as far as the ca-125 is concerend. i know a lady whose ca-125 is 1000,and she still shows no disease. You will have find out what is normal for you. My numbers are always quite low,so when the begin to rise there is something brewin!. Good luck,I'm sure your Dr. will go along with you and give the last 2 treatments.
  • LondaDraper
    LondaDraper Member Posts: 9
    #8
    Getting on board late...but hope I can help.
    Terry, it doesn't sound like you've had your surgery yet. If that is the case, and depending on the spread of your disease; remember the CA-125 is a cancer marker...not just for ovarian cancer. Having 6 treatments, in my opinion; isn't the end of the world. I had six to begin with, carbo/taxol, and it went well - enough shrinkage to have a successful debulking surgery and continued chemo treatment. The Ovarian Cancer is 100% gone! My CA-125 just before the surgery was 114. Post-op, it's now 16.3. I have a few small spots remaining on my liver and lung.

    We're human. No one of our diseases is exactly like yours. Our link is the cancer, frustration, fears, anxiety and the inundation with paperwork, appointments and confusion. I'm not sure what decision you made, and I certainly wish we were sitting next to each other drinking a cocktail...but that isn't the case. If it were, I wouldn't tell you what's 'right or wrong.' You would make that decision on your own...in between crying and debating all this STUFF!!!!! In the end; you're moving forward just like you have been from the start.

    A few tears and hard decisions won't hurt a thing.
  • groundeffect
    groundeffect Member Posts: 639 Member
    #9
    What is normal?
    I'm convinced, after reading so many posts and from talking to my support group, that there's no "normal" in dealing with CA-125 readings. Mine were like mopar's, ranging from 13-17 for five years after my surgery and chemo, then rising to 284 in June; the August reading was 184, so it looks as though the tamoxifen I've been prescribed is helping lower it.

    Your doctors are committed to giving you the best care available while you're in a trial. I think you should ask what they see in your future, and try to trust them. CA-125 readings can be elevated by too many other things to make them a reliable diagnostic tool.

    My oncologist said that arthritis is one thing that can affect a CA-125 test, although I don't know how much would be expected, it's one of the things I've "hung my hat" on.

    Have courage, Terry!
  • groundeffect
    groundeffect Member Posts: 639 Member
    #10
    What is normal?
    Please see my next entry-I can't delete this one that wasn't right.
  • saundra
    saundra Member Posts: 1,370 Member
    #11
    Chemo
    I would ask for the last two also. As long as my body tolerated the chemo, I felt it is holding back the cells multiplying. That is why I chose to do the years maintenance dose of taxol. After two more doses of taxol, we'll see if I can stay in NED for awhile. Did they ever say why they cut you down from 8 to 6. Have you told the doctor in Lehigh what happened? I hope that you get some answers soon. ((Hugs and prayers))) Saundra
  • Lauracec
    Lauracec Member Posts: 101
    #12
    saundra said:

    Chemo
    I would ask for the last two also. As long as my body tolerated the chemo, I felt it is holding back the cells multiplying. That is why I chose to do the years maintenance dose of taxol. After two more doses of taxol, we'll see if I can stay in NED for awhile. Did they ever say why they cut you down from 8 to 6. Have you told the doctor in Lehigh what happened? I hope that you get some answers soon. ((Hugs and prayers))) Saundra

    avastin trial
    I am on the avastin trial also and from what I understand they only allow 6 to stay in the trial so that everyone in the trial gets the same. I know I am struggleing to stay on because we had my first ct scan after starting chemo. I have had 3 taxol/carbo so far and i guess I expected things to be shrunk a lot. they said it resolved the ascites fluid and that nothing has grown and my ca125 keeps lowering it's a 9 now but b4 surgery it was only 47 and I have stage 3c. so my next c.t scan would be after my 6th chemo if it hasn't shrunk tons or if it's almost shrunk I might want to do a few more unless it was real small and I could somehow find out if I'm on the avastin. they did get most of the cancer out of me during the big surgery. they had to leave a peice in that is 5 cinimeters that is wrapped around my main arteries to the liver. I guess it's good that there are options out there and no one is stuck on the clinical trial but I think if i had ned and was pretty sure I was on the avastin. I think I would stick to the trial. but who's to say I'm not there yet. god bless everyone Laura
  • Shelley Hawk
    Shelley Hawk Member Posts: 15
    #13
    Go for the CT or PET
    Just my 2 cents...
    My blood work didn't even show I had cancer before surgery.
    It was only a 53 I believe "normal levels are around 35 and below.
    If you can (and I know it's expensive!) the best way to check for cancer is a CT
    or even better a PET Scan. -Not fun, they give you some radioactive gunk and tell you to stay away from infants and small children!
    Until you've had surgery it's hard for the Dr.'s to know what they are dealing with.
    The correct diagnosis seems to be all important.
    You need the stage I - V (I -best)
    Your issues A,B, C ( A - best)
    And it's good to get the Grade of your particular cancer- 1,2,3 (1- best)
    I was diagnosed a Stage I (they caught it really early) C (there was fluid leakage from my cyst) Grade 3 cancer (clear cell cancer - very aggressive)
    Seems like the better stages usually do only get about 6 rounds of Chemo. Ask questions!
    If you aren't comfortable have your Dr. explain it until you are. It's your health!!!!

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