CA125 up again

jane65
jane65 Member Posts: 277
edited March 2014 in Ovarian Cancer #1
Hi ladies,
Today I saw my oncologist for my pre chemo meeting, he told me that my CA125 has gone up for the 3rd straight month. He feels that the Topo has stopped working the way it had, and it's time to switch to a new chemo combination of Gemzar and Avastin.

I'll be having a CT scan on May 26th, but he said that even if it shows no progression of the cancer, he's sure that something is going on in my body and it's time to change chemo drugs.

The CA has always been such a good marker of my cancer's progression, that going up several times means the Topo is no longer scrambing the DNA in the cancer cells.

He gave me a choice, stop chemo and see him every week to see how I'm doing, and repeat the CA monthly until it reaches 25, then immediately start chemo.
This would give my body a break, and allow my bone marrow to recover a bit on it's own.

The other choice is to start the new chemo the week after I meet with him on June 2nd, and we go over the results of the CT scan.

He said he will make the ultimate decision on my medical treatments, but he wants to have my input, as he always has for 2 years.

I'll pick up a copy of the CT scan results before I see him, and I'll have time to discuss a decision with my husband.

This has obviously really been a tough day for my us, and it has made the seriousness of this disease, something to really be even more concerned about.

I'm not crying, for some reason I just haven't had the need for that, for more than a few times since my diagnosis two years ago. I deal with my OVCA with anger at the disease, strength and will power.
And of course the sadness that one day I'll leave my husband of 45 years to care for himself.

I guess I've rambled a lot, but I just had to vent to my new community, and I know that's what we're all here for, to listen to each other.

I wish you all peace, and good health.
{{{hugs}}}
Jane

Comments

  • ladyjogger31
    ladyjogger31 Member Posts: 289
    CA 125
    Hi Jane,
    I can relate to your CA-125 going up. Please keep in mind that any kind inflammation can make the CA go up.You are still in the normal range.I'll be praying for your ct scan to come back clear. Maybe you will have a break from chemo to build yourself up again.If it were me and my ct sacn came back clear I won't be in such a hurry to start a new chemo.Come here and vent anytime, that's what we are here for.
    Hugs and Love, Terry
  • jane65
    jane65 Member Posts: 277
    Terry
    I appreciate your helpful, wise advice as usual.

    I kind of thing that my husband and I are leaning toward taking a break, and monitoring my condition regularlly with my oncologist.

    I'll be seeing him at least once a month for a CA test and port flush, but I'm sure he'll want to see me more frequently to see how i'm feeling.

    Have a pleasant day, it's beautiful but cool and I bet you'll be getting that camper ready for Memorial Day.
    have fun.
    Love ya,
    Jane
  • LPack
    LPack Member Posts: 645
    counts
    Jane,

    I feel what you are saying. My oncologist called me yesterday with my CA 125 and she said she is concerned. While I too had the report by Saturday and saw it had gone up, it is still within the normal range, so honestly I was not concerned.

    I have noticed after each chemo since February 2008 that it went down and after my last chemo August 2008 it was 7.9 in August, then 6.4 in September. It went to 7.9 in October, then I started on Hexalen (maintenance) 14 days of pills and it went down to 6.5 in November, 6.4 in December. By January of this year it was 8.2, I had another cycle of Hexalen starting January 2009 and it was 7.1 in March and 6.1 in April. I have not been on any treatment except the one in January 2009 as both the chemo and Hexalen are hard on my bone marrow.

    So this past Friday I have the CA 125 and it is now 13.2. She is concerned, I WAS NOT. Now that she called it makes me think. But I was thinking that naturally it would go up some as the treatment is probably out of my body. And it is well under 35. Then again I think what if my normal CA 125 is 20 or 30?? My sister number is 17 and she has no cancer.

    I guess I am rattling on now! =) Anyways, I see her this Thursday. And remember I just got the results of my CT scan and all was clear.

    Jane, keep us posted. It is wonderful to be able to tell each other how we feel because we know that we know what it is like!

    In His Grip,
    Libby
  • saundra
    saundra Member Posts: 1,370 Member
    Me too!!
    Dear Jane, we are in the same boat it seems. My CA125 started rising while on the maintenance dose of Taxol in Sept. 2008. I have been on the anti estrogen "Femara" since then and the CA125 continues up at a very slow rate. It did jump to 145 three weeks ago when I came down with diverticulitis, but was down to 82 in one week due to the anti biotics. Nothing is showing on CT or physical at this time. I will have to hold off on the new chemo for awhile as this bowel thing is slow healing (I'm still on antibiotics for 7 more days) but is improving. I have been left totally fatigued and in bad physical shape as most of the last three weeks have been spent on my back! Will discuss options June 9th. I don't seem to worry about it. Just focus on getting as well as I can. Joe and I celebrate our 50th next Jan. Saundra
  • jane65
    jane65 Member Posts: 277
    LPack said:

    counts
    Jane,

    I feel what you are saying. My oncologist called me yesterday with my CA 125 and she said she is concerned. While I too had the report by Saturday and saw it had gone up, it is still within the normal range, so honestly I was not concerned.

    I have noticed after each chemo since February 2008 that it went down and after my last chemo August 2008 it was 7.9 in August, then 6.4 in September. It went to 7.9 in October, then I started on Hexalen (maintenance) 14 days of pills and it went down to 6.5 in November, 6.4 in December. By January of this year it was 8.2, I had another cycle of Hexalen starting January 2009 and it was 7.1 in March and 6.1 in April. I have not been on any treatment except the one in January 2009 as both the chemo and Hexalen are hard on my bone marrow.

    So this past Friday I have the CA 125 and it is now 13.2. She is concerned, I WAS NOT. Now that she called it makes me think. But I was thinking that naturally it would go up some as the treatment is probably out of my body. And it is well under 35. Then again I think what if my normal CA 125 is 20 or 30?? My sister number is 17 and she has no cancer.

    I guess I am rattling on now! =) Anyways, I see her this Thursday. And remember I just got the results of my CT scan and all was clear.

    Jane, keep us posted. It is wonderful to be able to tell each other how we feel because we know that we know what it is like!

    In His Grip,
    Libby

    Libby
    Hi Libby,
    You're not rattling at all and I appreciate you sharing your info. with me.

    My CA125 has been a consistent marker for my disease and that's why my oncologist is concerned, even though it's within normal range.

    It sounds like yours is also pretty low, I guess that's also why your oncologist is concerned with any increase.
    It's such great news that your CT scan was clear, that must really be a relief.

    I agree that it's so important and comforting for all of us to share our feelings and interact with each other.

    When were you diagnosed, I'm not sure if you had mentioned it.
    Jane
  • jane65
    jane65 Member Posts: 277
    saundra said:

    Me too!!
    Dear Jane, we are in the same boat it seems. My CA125 started rising while on the maintenance dose of Taxol in Sept. 2008. I have been on the anti estrogen "Femara" since then and the CA125 continues up at a very slow rate. It did jump to 145 three weeks ago when I came down with diverticulitis, but was down to 82 in one week due to the anti biotics. Nothing is showing on CT or physical at this time. I will have to hold off on the new chemo for awhile as this bowel thing is slow healing (I'm still on antibiotics for 7 more days) but is improving. I have been left totally fatigued and in bad physical shape as most of the last three weeks have been spent on my back! Will discuss options June 9th. I don't seem to worry about it. Just focus on getting as well as I can. Joe and I celebrate our 50th next Jan. Saundra

    Saundra
    Hi Saundra,
    I know that you've been through a rough time the past few weeks, and I hope you continue to improve every day.

    One problem at a time, and one day at a time, that's all we can do.

    Have you and your oncologist decided which chemo you'll be starting when you're better?

    Feel well,
    Jane
  • saundra
    saundra Member Posts: 1,370 Member
    jane65 said:

    Saundra
    Hi Saundra,
    I know that you've been through a rough time the past few weeks, and I hope you continue to improve every day.

    One problem at a time, and one day at a time, that's all we can do.

    Have you and your oncologist decided which chemo you'll be starting when you're better?

    Feel well,
    Jane

    Not yet
    Haven't seen the oncologist yet. I think that it will be awhile to recover from the gut infection. Still have another week of oral antibiotics, then probably another CT scan to see if all the spots are clear. The way my body feels it will take a couple of months to get any energy back. Saundra
  • rasunshine
    rasunshine Member Posts: 28 Member
    CA-125
    Jane, my CA-125 is up to 105 and I am not worried. It started going up 5 months after my last chemo at the end of Sept. I am tired of them not being able to give me a logical reason as to WHY, so I have decided to go with the Alternative treatments...full fledged. I was and still am following the Gerson Diet. www.gerson.org I also had my hormones checked and I'm taking a natural progestrone. Then I had a IRA drawn. Immune reactor test and I'm following that diet to the T. I feel fantastic and have since day one back in 2005. You really need to take a look at what you are eating and what nutrition you are taking. Everyone is different, but we can all help ourselves. There is nothing to fear, because you are doing your body a favor by nourishing it. We have cancer, that does not mean that we are going to die from it. Surrender yourself to our Lord, He is always there to carry us through. Listen and He will show you the way...Stay well and remember to let the sunshine in...
    Lifting you up in prayer and I truly mean that.

    RASUNSHINE
  • LPack
    LPack Member Posts: 645
    jane65 said:

    Libby
    Hi Libby,
    You're not rattling at all and I appreciate you sharing your info. with me.

    My CA125 has been a consistent marker for my disease and that's why my oncologist is concerned, even though it's within normal range.

    It sounds like yours is also pretty low, I guess that's also why your oncologist is concerned with any increase.
    It's such great news that your CT scan was clear, that must really be a relief.

    I agree that it's so important and comforting for all of us to share our feelings and interact with each other.

    When were you diagnosed, I'm not sure if you had mentioned it.
    Jane

    diagnosed
    Jane,

    I was diagnosed January 28, 2008 stage 3C. Cancer in both ovaries, diaphragm, lymph node.

    Tomorrow I will find out how she feels about it. I feel fine. =)

    My life has never been lived by statistics, I know Who is in control of my comings and goings!

    Thanks for your comments! Keep us posted. I will let you know what she says.

    In His Grip,
    Libby
  • BonnieR
    BonnieR Member Posts: 1,526 Member
    Hugs N Prayers
    Hi Jane,

    Sorry to hear you had a tough day, and some tough decisions. Each Dr is so different, some treat the numbers, some the ct scan and most I think the combination. I know in the beginning when the ca125 was a good marker we waited for it to go up a couple months in a row. Now it isn't if it goes up and down so much, but what the combination of both tests show.

    I am a crier and then after a good cry I turn that energy back into living life to fullest. I pray your anger is the key to kicking cancer's butt.

    I wish you peace ~ Hugs ♥ Prayers Bonnie
  • jane65
    jane65 Member Posts: 277
    BonnieR said:

    Hugs N Prayers
    Hi Jane,

    Sorry to hear you had a tough day, and some tough decisions. Each Dr is so different, some treat the numbers, some the ct scan and most I think the combination. I know in the beginning when the ca125 was a good marker we waited for it to go up a couple months in a row. Now it isn't if it goes up and down so much, but what the combination of both tests show.

    I am a crier and then after a good cry I turn that energy back into living life to fullest. I pray your anger is the key to kicking cancer's butt.

    I wish you peace ~ Hugs ♥ Prayers Bonnie

    Bonnie
    Hi Bonnie, It's so nice getting to know you and the other ladies on this board, you're all a truly caring group.

    Today I saw my newest Internist and was very impressed by his thoroughness, and knowledge of cancer.

    He knows the GYN/ONC surgeon who did my debulking surgery, and my oncologist and said I'm in very good hands, that was good to hear.

    Tuesday I'll have the CT scan and the following Monday I'll see my oncologist and we'll made a final decision, I'm leaning toward that break, even if it's only for a month or so.

    Feel good, talk to you soon,

    Jane
  • jane65
    jane65 Member Posts: 277

    CA-125
    Jane, my CA-125 is up to 105 and I am not worried. It started going up 5 months after my last chemo at the end of Sept. I am tired of them not being able to give me a logical reason as to WHY, so I have decided to go with the Alternative treatments...full fledged. I was and still am following the Gerson Diet. www.gerson.org I also had my hormones checked and I'm taking a natural progestrone. Then I had a IRA drawn. Immune reactor test and I'm following that diet to the T. I feel fantastic and have since day one back in 2005. You really need to take a look at what you are eating and what nutrition you are taking. Everyone is different, but we can all help ourselves. There is nothing to fear, because you are doing your body a favor by nourishing it. We have cancer, that does not mean that we are going to die from it. Surrender yourself to our Lord, He is always there to carry us through. Listen and He will show you the way...Stay well and remember to let the sunshine in...
    Lifting you up in prayer and I truly mean that.

    RASUNSHINE

    Rasunshine
    Thanks for your good wishes, and good luck and good health to you. Jane
  • Karen1418
    Karen1418 Member Posts: 48
    Rising CA125
    Hi Jane, I too am dealing with a rise in my CA125. In January it was 32, higher than before but still in the normal range, and my Florida gyn/onc was not concerned because I just had a negative CT Scan. Then in April, it was 75, and he told me the cancer was back. He suggested doing nothing til I returned to Wisconsin, which I did yesterday. In the meantime, I spoke with my gyn/onc up here on the phone and he ordered a CT Scan, which showed an area of concern. But he agreed I could wait to see him. I decided to do that, since we had a bus trip planned from Florida. I'm not sure if that was the wisest thing to do. My emotions have been on sort of a rollercoaster, and the uncertainty of what comes next has been difficult to deal with. I think I feel a lot like you do about the seriousness of the disease. After 15 months in remission, I was daring to think maybe I'd be one of the lucky ones. No such luck. I see him next Tuesday to go over my options. I think I'll feel better once I know what the plan of attack is. Hopefully you will also. My husband and I will celebrate 45 years of marriage next January. Prayers, Karen
  • jane65
    jane65 Member Posts: 277
    Karen1418 said:

    Rising CA125
    Hi Jane, I too am dealing with a rise in my CA125. In January it was 32, higher than before but still in the normal range, and my Florida gyn/onc was not concerned because I just had a negative CT Scan. Then in April, it was 75, and he told me the cancer was back. He suggested doing nothing til I returned to Wisconsin, which I did yesterday. In the meantime, I spoke with my gyn/onc up here on the phone and he ordered a CT Scan, which showed an area of concern. But he agreed I could wait to see him. I decided to do that, since we had a bus trip planned from Florida. I'm not sure if that was the wisest thing to do. My emotions have been on sort of a rollercoaster, and the uncertainty of what comes next has been difficult to deal with. I think I feel a lot like you do about the seriousness of the disease. After 15 months in remission, I was daring to think maybe I'd be one of the lucky ones. No such luck. I see him next Tuesday to go over my options. I think I'll feel better once I know what the plan of attack is. Hopefully you will also. My husband and I will celebrate 45 years of marriage next January. Prayers, Karen

    Karen
    Hi Karen,
    I just read your profile and I can see what a rough time you've been through with OVCA and breast cancer, I'm BRCA2 positive, so breast cancer is a greatly increased possibility for me.

    From what you wrote,the first scan didn't show any sign of cancer, but the second scan did raise a suspicion that you've had a relapse, I'm so sorry and I can understand what you're feeling now, a remission of 15 months is wonderful, mine was only 3-4 months before my enlarged lymph nodes and rising CA became a red flag that the cancer was back.

    I guess your CA125 is a good indicator of disease progression, as mine is and always has been, and a jump like you had would scare me too.

    Being on Topotecan for 10 months has not been a difficult chemo drug, mostly fatigue and my HGB falling, but an occasional Aranesp shot got my bone marrow working again.

    I agree that when you meet with your GYN/ONC next Tuesday, and you know what your next treatment will be, you'll feel like you're in charge of once again getting the cancer under control, although at this point it's not a definite diagnosis, but only an area of concern.

    I'm 65, actually I'll be 66 next month and we'll celebrate our 46th Anniversary in August. I guess we're pretty much the same age and this isn't how we expected to spend our "golden years", but as the expression goes, "Man makes plans, and G-d laughs".

    My next chemo will be Gemzar and Avastin together, and I'm definitely taking that break even if it's only for a month. I'm so sick of living and thinking cancer 24/7.

    I really have to fill out my profile, I've been lax in doing that, it will be good for me to express my feelings, and give everyone some info. about me.

    Lets keep in touch, and Tuesday is a big day for both of us, I'll have my CT scan that morning, we can support each other along the way, if it turns out that you need it.

    I've found the compassionate and caring ladies, on this wonderful board have made me feel welcome and given me a sense of belonging, I'm sure you'll feel the same.

    Take care and remember, one day at a time, I wish good health to you.
    Jane