It's me again

dorion
dorion Member Posts: 183
edited March 2014 in Ovarian Cancer #1
Hello everyone, I am so sorry I've been away for so long and I am so glad that I checked the message board after reading about Linda's good news. Well I've gotten this far right? Remember I was the one who lived in Hawaii, well I'm back in Canada and staying with my brother while I undergo chemo. I had my first treatment last Wednesday, after 2 months to the day of surgery. I was diagnosed with stage 4. When I registered here at the hospital they wanted to get me involved in a clinical trail study where I would give myself injections everyday, while undergoig chemo, it was a blood thinner. Anyway they ran a bunch of tests, blood, urine, chest xrays. All came back clear which is great, but I'm wondering about the other (doc said) good news, which was I couldn't participate in the clinical trail of injections cos my CA125 was 10 and they needed 35+ in order to participate. Apparently my CA125 level was 100 when they performed sugery and now it's a 10. Is that a good sign? For stage 4 and after reading about others CA 125 level, mine seems to be pretty low. Could I have gotten misinformation? Chemo was hard the first time, more the anxiety of just being there at the foot of the bed with all those bags, I cried. Got over it! But oh my goodness, the joint pains is what is driving me crazy! Anyone else have those symtoms? Sorry, I really wanted this to be just a posting of "saying hello" not 20 questions. Love to all!

Linda

Comments

  • mccarty
    mccarty Member Posts: 13
    #2
    Dorian,
    A CA-125 of 10 is good. I'm a stage 3, but I,m sure it's good no matter the stage. I'll put you on my prayer list. Hang in there.
    Glenda
  • dorion
    dorion Member Posts: 183
    #3
    mccarty said:

    Dorian,
    A CA-125 of 10 is good. I'm a stage 3, but I,m sure it's good no matter the stage. I'll put you on my prayer list. Hang in there.
    Glenda

    Thank you Glenda, appreciate your reply and prayers, oh we sure do a lot of that don't we, pray? Yeah I will take any good news and that one sounds good to me. You hang touch too, we'll get through this together. Right??

    Linda
  • saundra
    saundra Member Posts: 1,370 Member
    #4
    I'm Stage IV too. I had 4 chemo treatments before they did surgery and those were the hardest. The bone pain was so bad for the first three that I had to take pain pills. I was on Taxol and Carboplatin. My CA125 went from 2988 to 35 with those four and then after the surgery it only dropped to 30. My doctors say that my CA125 is a good marker for my cancer cells and it is not for everyone. The five treatments after surgery, starting two weeks after, were easier that the first 4 and dropped my CA125 to 5. I am now on a lower dose of TAxol every four weeks as a consolidation or maintenance to prolong my remission time. This is new and not every doctor approves. I was a candidate for it because I tolerated the chemo "so well" they said with very few side effects. I had a little neuropathy and the deep bone pain and lots of fatigue. No nausea that was not handled by the prescriptions I was given. My blood test always recoved to the normal range or just below after every treatment except for the 2nd. I take a low dose of blood thinner each day to keep the port clean that they give the chemo through in my shoulder. Do yu have a port? Welcome back to the site. Email me by clicking on the envelope if you want to talk about Stage IV or anything else. ((HUGS and prayers))) Saundra
  • mopar
    mopar Member Posts: 1,972 Member
    #5
    Hi, Linda!
    Good to hear from you again. And that CA125 is a great number. You've probably read the posts about the test being too inconclusive for most; nonethless, we always like to see low numbers staying low, or going down even more.

    Yes, I know all about the pain. In fact, having been through it twice I can honestly say it was worse the second time. But I have read that the chemo drugs never quite leave the body completely (?), and are cumulative. So having done chemo the second time was like a double whammy. Well, that's over now, thank the Lord!

    No problem with the questions. Anything we can do to help, even if it's just lending a shoulder. A side note to the neuropathy and joint pain, L-Glutamine was very helpful for me and other women I know. Try to keep us liquids, especially right after chemo. It helps to flush everything through your system better.

    Luv and Hugs!
    Monika
  • dorion
    dorion Member Posts: 183
    #6
    saundra said:

    I'm Stage IV too. I had 4 chemo treatments before they did surgery and those were the hardest. The bone pain was so bad for the first three that I had to take pain pills. I was on Taxol and Carboplatin. My CA125 went from 2988 to 35 with those four and then after the surgery it only dropped to 30. My doctors say that my CA125 is a good marker for my cancer cells and it is not for everyone. The five treatments after surgery, starting two weeks after, were easier that the first 4 and dropped my CA125 to 5. I am now on a lower dose of TAxol every four weeks as a consolidation or maintenance to prolong my remission time. This is new and not every doctor approves. I was a candidate for it because I tolerated the chemo "so well" they said with very few side effects. I had a little neuropathy and the deep bone pain and lots of fatigue. No nausea that was not handled by the prescriptions I was given. My blood test always recoved to the normal range or just below after every treatment except for the 2nd. I take a low dose of blood thinner each day to keep the port clean that they give the chemo through in my shoulder. Do yu have a port? Welcome back to the site. Email me by clicking on the envelope if you want to talk about Stage IV or anything else. ((HUGS and prayers))) Saundra

    Thanks for your replies. The pain still persists but it's lessened each day I think, tomorrow I see my doctor, family and get my pain meds refilled and be more comfortable, I didn't think I needed to hurry to refill it when I ran out last week, was I wrong. For now I"ll hang tight and wait for next chemo and oh the hair to fall out I know it's coming, but I'm not sure if I"m going to freak out about it. Will I?
  • Unknown
    Unknown
    #7
    This comment has been removed by the Moderator
  • floridajo
    floridajo Member Posts: 480
    #8
    Hi Dorion,
    Like the other ladies have told you a ca-125 of 10 is great news. I was 204 before surgery,so I was in the normal zone before my 1st tx. as well. I had alot of bone pain..are you on Carbo/Taxol??? There is no sense in being in pain so ask for pain meds. they will make a huge difference in your quality of life, especially after surgery and chemo. I'm curentlly on my second recurrence..and have never repeated a chemo drug yet...and i will say for me the last 3 types of chemo I was on was 100% more tolerable for me. yes you will lose your hair. Mine started to fall out about 18 days from my 1st treatment. I had it buzzed off..for me it was very emotional,but a lot less emtional than watching it slowly fall out day by day. I'll keep you in prayer..and hope that you'll soon be dancing with NED (no evidence of disease)...((((hugz)))~~~Joanne
  • dorion
    dorion Member Posts: 183
    #9
    Hello Ladies, yes I was getting confused with the CA 125 numbers, because I thought maybe my doctor made a mistake when she said I was 100 before surgery and I see some whopping numbers from other ladies like in the thousands, I don't understand how can one person be in the high thousands and another in the hundreds, if you know what I mean. Thank you again for your help. I had a dream this morning that got my sorry self out of bed in a hurry, I sure wish I could share it, it was something else. I think it was a message from Jesus, a hand touched me in the middle of the my solar plexis, I was looking at a bum downtown toronto, he looked familiar to me, as I looked at his eyes trying to figure out where I knew him from, this hand came out of him and touched me with the palm of "HER" hand between my breats and it threw me back in a dizzy fall, but as I as falling people were looking at me wierd and I kept saying "didn't you see that?" over and over and one woman said "I saw nothing Scenora he did not touch you" I siad "but it wasn't him, it was a woman's hand that came out of no where and touched me" I'm still gently falling to the sidewalk, but it was like I was floating down like someone was holding me guiding me to the ground and I remember I felt dizzy and this "bum" looked at me and in a soft gentle voice he said "you can go in peace now, you can die peacefully now". Well I'm thinking in my dream, well this is it, I'm going now, but I wasn't scared, I was a little bit because it was so strange but it was peaceful and my eyes started to close thinking "this is it, this is how it goes" and I jumped out of my sleep, you see someone the hurting bones jump out of bed so fast! LOL But I feel that this was an apiphany or something, it was a wonderful, strange dream. I felt I had to share this with you, don't know why. Love to all of you! And God Bless all of us!
    Linda
  • saundra
    saundra Member Posts: 1,370 Member
    #10
    dorion said:

    Thanks for your replies. The pain still persists but it's lessened each day I think, tomorrow I see my doctor, family and get my pain meds refilled and be more comfortable, I didn't think I needed to hurry to refill it when I ran out last week, was I wrong. For now I"ll hang tight and wait for next chemo and oh the hair to fall out I know it's coming, but I'm not sure if I"m going to freak out about it. Will I?

    What chemo are you taking. Taxol makes you lose your hair. It was so messy, that I chose to shave my head each time. Mine starts about three weeks after each dose. I have about one inch growth that is so sparse now that i am thinking of getting out the razor again.

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