My experts

MichaelaMarie
MichaelaMarie Member Posts: 163
edited March 2014 in Ovarian Cancer #1
I'm calling all of my experts......what a great resource of you I have! My marker has been going up for six weeks (three tests), and today I hear that it has dropped just ONE point. Based on the drop, I will get my treatment of Cisplatin/Gemzar tomorrow. Is anyone as surprised as I am????? What do all of you experts think? I'm happy and I'm excited, but a little perplexed. I was actually expecting a pretty big jump today, so even the smallest of small drops has me giddy!!!!ha My marker has went from 240 down to 239. Yippee! But, I really would love to get everybody's input, it really does help to know your thoughts. Hope everyone has a good day today! Luv and hugs and prayers, MM

Comments

  • saundra
    saundra Member Posts: 1,370 Member
    #2
    One point
    Well, that is not a significant number, MM. Sort of like it stayed the same. However, that is better than a 20 point jump up, for sure. One has to look at the trend over several months to actually see the significance. They let mine go up for 6 months to 434 before starting treatment again...Still not showing on the CT at that time. So far, it is a good marker for me, but that too, can change. Last month mine jumped from 58 to 158 and the oncologist changed the chemo, but I also had had a very bad cold for two weeks and I sure believe that it ran the number higher. Saundra
  • MichaelaMarie
    MichaelaMarie Member Posts: 163
    #3
    saundra said:

    One point
    Well, that is not a significant number, MM. Sort of like it stayed the same. However, that is better than a 20 point jump up, for sure. One has to look at the trend over several months to actually see the significance. They let mine go up for 6 months to 434 before starting treatment again...Still not showing on the CT at that time. So far, it is a good marker for me, but that too, can change. Last month mine jumped from 58 to 158 and the oncologist changed the chemo, but I also had had a very bad cold for two weeks and I sure believe that it ran the number higher. Saundra

    Thanks Saundra
    Yes, I would say that it just stayed the same basically, as you said. But, when expecting another jump, it seems or feels like good news. When your marker was up to 434, and nothing was showing up on your cat scan, what explanation did your doctor give you? I've been wondering about that very same question........if someone had a high marker, but shows no disease on the scan, what does that technically mean? My scan a month and a half ago showed regression of the disease, but almost at the same time my marker started going up. Someone once mentioned that when the chemo is working, and there are all of those dead cancer cells circulating in the blood, that the marker can be affected, but I've never read that anywhere since.

    What chemo are you on now? When is your next marker test? I agree, I know that infections, like a cold, can influence the number. My marker isn't a great tool anymore......last year it was going down, down, but the cat scan showed the disease progressing. It's hard to know what to think. Thanks again, MM
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #4
    I think......
    the fact that it didn't go UP is what's significant. And that must be your doctor's logic, too, if a one point decrease is the deciding factor in whether you get your treatment or not.

    But I know they look at longer term trends, as well. My CA125 actually went up 200 points after my first chemo, but my doctor said it meant nothing because I had just started treatment, and I had an open incision in my belly. Three weeks later, it had dropped by 90%.

    Carlene
  • saundra
    saundra Member Posts: 1,370 Member
    #5
    MichaelaMarie said:

    Thanks Saundra
    Yes, I would say that it just stayed the same basically, as you said. But, when expecting another jump, it seems or feels like good news. When your marker was up to 434, and nothing was showing up on your cat scan, what explanation did your doctor give you? I've been wondering about that very same question........if someone had a high marker, but shows no disease on the scan, what does that technically mean? My scan a month and a half ago showed regression of the disease, but almost at the same time my marker started going up. Someone once mentioned that when the chemo is working, and there are all of those dead cancer cells circulating in the blood, that the marker can be affected, but I've never read that anywhere since.

    What chemo are you on now? When is your next marker test? I agree, I know that infections, like a cold, can influence the number. My marker isn't a great tool anymore......last year it was going down, down, but the cat scan showed the disease progressing. It's hard to know what to think. Thanks again, MM

    2 out of 3
    Well, the gyn/onc could feel the tumor finally with rectal exam. (It's on the colon). I had had several CT's with a bad case of diverticulitis which finally showed the tumor after several of those. Usually they, use two out of three to start chemo here. I took four doses of carbo and that shrunk the tumor to CA125 of 58 and not being able to feel it in the physical. Then the jump and I was switched to Doxil. Took it on top of another diverticulitis bout and have been weak ever since to the point of wanting to postpone next week's dose. Will see the oncologist on Friday and discuss putting it off for awhile to recover. I know the CA 125 will be up again because of the diverticulitis. Saundra
  • Barbara53
    Barbara53 Member Posts: 652
    #6
    saundra said:

    2 out of 3
    Well, the gyn/onc could feel the tumor finally with rectal exam. (It's on the colon). I had had several CT's with a bad case of diverticulitis which finally showed the tumor after several of those. Usually they, use two out of three to start chemo here. I took four doses of carbo and that shrunk the tumor to CA125 of 58 and not being able to feel it in the physical. Then the jump and I was switched to Doxil. Took it on top of another diverticulitis bout and have been weak ever since to the point of wanting to postpone next week's dose. Will see the oncologist on Friday and discuss putting it off for awhile to recover. I know the CA 125 will be up again because of the diverticulitis. Saundra

    keep your chin up
    Saundra, you are always such a wonderful source of positive energy. I am so sorry you are having to spend so much time dealing with a crazy digestive system. Please take good care of yourself and keep us posted. Don't know about you, but I think milk chocolate ensure tastes great.
  • kayandok
    kayandok Member Posts: 1,202 Member
    #7
    Hi MM,
    I'm a little confused on your status. How many cycles of gem/cis have you had? Are you recurring after a 6 year NED or did you use another chemo in between? If so, why didn't they use the carbo/taxol first, since that is what gave you such a long NED? I'm surprised you are getting the CA125 every 2 weeks too, as that is unusual. Occasionally, my doc does it, but always tells me "it really doesn't count" as the chemo takes some time to kick in. 10 points either way is pretty much the same number, as it fluctuates during each day, is what I was told.
    I hope the chemo is kicking in for you soon!
    kathleen
  • MichaelaMarie
    MichaelaMarie Member Posts: 163
    #8
    kayandok said:

    Hi MM,
    I'm a little confused on your status. How many cycles of gem/cis have you had? Are you recurring after a 6 year NED or did you use another chemo in between? If so, why didn't they use the carbo/taxol first, since that is what gave you such a long NED? I'm surprised you are getting the CA125 every 2 weeks too, as that is unusual. Occasionally, my doc does it, but always tells me "it really doesn't count" as the chemo takes some time to kick in. 10 points either way is pretty much the same number, as it fluctuates during each day, is what I was told.
    I hope the chemo is kicking in for you soon!
    kathleen

    Never NED
    Hello All,

    I don't think I have ever been in a true remission, because my marker started going up very slowly pretty soon after my initial six month treatment. I wasn't sure at that time that I wanted to try chemo again, thinking that I might want to go alternative all the way. Finally, about four years ago, they talked me into having my five incisional hernia surgery, and found quite a bit of cancer too. I was immediatey put on Gemzar, and have been on many different chemos ever since, without a break. So, that's four years of non-stop chemo. This month is my 7th cycle of Cip/Gemzar. My next chemo is suppose to be Alimpta, probably starting next month. In the past 4 years, I have had three surgeries, the last being in April of 2009, where I had to have a colon resection. Like you, Saundra, I also have diverticulitis and I had a very, very serious situation going on. Within two hours of a cat scan, I was called back to the doctor's office, and then on to the hospital. Initially, they thought the diverticulitis had perforated, but after the surgery, my surgeon said he felt it was the cancer tht had caused the perforation. At first, they tried draining the area, but that didn't work.........fecal matter was coming up through my incision, always with a prewarning of swishing (like a volcano coming up)....that was so horrible. That went on for a month, if you can believe it!!!!!!! After days in the hospital with mega antibiotic infusions, they finally took out a section of my colon. Thankfully, I came out without a bag, as they had prepared me for. Kathleen, I have always had a marker after each cycle of the current regimen, whatever it was. This regimen is both chemos every two weeks, so just before the second part of the cycle they do a marker. Perhaps that is why I got yanked off of Gemzar about 4 years ago, and it turned out to be my best chance on a tumor sensitivity test they had done after my last surgery on the colon. It showed up at only 38%, but was the best one. That's interesting, huh? I had chemo yesterday, so am not feeling so hot this morning, but wanted to get back to you wonderful ladies hopefully answering some of your questions. Take care everybody!!!! Luv and hugs, MM
  • BonnieR
    BonnieR Member Posts: 1,526 Member
    #9
    MichaelaMarie said:

    Never NED
    Hello All,

    I don't think I have ever been in a true remission, because my marker started going up very slowly pretty soon after my initial six month treatment. I wasn't sure at that time that I wanted to try chemo again, thinking that I might want to go alternative all the way. Finally, about four years ago, they talked me into having my five incisional hernia surgery, and found quite a bit of cancer too. I was immediatey put on Gemzar, and have been on many different chemos ever since, without a break. So, that's four years of non-stop chemo. This month is my 7th cycle of Cip/Gemzar. My next chemo is suppose to be Alimpta, probably starting next month. In the past 4 years, I have had three surgeries, the last being in April of 2009, where I had to have a colon resection. Like you, Saundra, I also have diverticulitis and I had a very, very serious situation going on. Within two hours of a cat scan, I was called back to the doctor's office, and then on to the hospital. Initially, they thought the diverticulitis had perforated, but after the surgery, my surgeon said he felt it was the cancer tht had caused the perforation. At first, they tried draining the area, but that didn't work.........fecal matter was coming up through my incision, always with a prewarning of swishing (like a volcano coming up)....that was so horrible. That went on for a month, if you can believe it!!!!!!! After days in the hospital with mega antibiotic infusions, they finally took out a section of my colon. Thankfully, I came out without a bag, as they had prepared me for. Kathleen, I have always had a marker after each cycle of the current regimen, whatever it was. This regimen is both chemos every two weeks, so just before the second part of the cycle they do a marker. Perhaps that is why I got yanked off of Gemzar about 4 years ago, and it turned out to be my best chance on a tumor sensitivity test they had done after my last surgery on the colon. It showed up at only 38%, but was the best one. That's interesting, huh? I had chemo yesterday, so am not feeling so hot this morning, but wanted to get back to you wonderful ladies hopefully answering some of your questions. Take care everybody!!!! Luv and hugs, MM

    Hugs
    Hey MM, sending you extra hugs today and prayers for a speedy recovery from treatment. And like yourself I have danced with NED either but you know to continue to beat the odds is amazing. God Bless Bonnie
  • nancy591
    nancy591 Member Posts: 1,027 Member
    #10
    MichaelaMarie said:

    Never NED
    Hello All,

    I don't think I have ever been in a true remission, because my marker started going up very slowly pretty soon after my initial six month treatment. I wasn't sure at that time that I wanted to try chemo again, thinking that I might want to go alternative all the way. Finally, about four years ago, they talked me into having my five incisional hernia surgery, and found quite a bit of cancer too. I was immediatey put on Gemzar, and have been on many different chemos ever since, without a break. So, that's four years of non-stop chemo. This month is my 7th cycle of Cip/Gemzar. My next chemo is suppose to be Alimpta, probably starting next month. In the past 4 years, I have had three surgeries, the last being in April of 2009, where I had to have a colon resection. Like you, Saundra, I also have diverticulitis and I had a very, very serious situation going on. Within two hours of a cat scan, I was called back to the doctor's office, and then on to the hospital. Initially, they thought the diverticulitis had perforated, but after the surgery, my surgeon said he felt it was the cancer tht had caused the perforation. At first, they tried draining the area, but that didn't work.........fecal matter was coming up through my incision, always with a prewarning of swishing (like a volcano coming up)....that was so horrible. That went on for a month, if you can believe it!!!!!!! After days in the hospital with mega antibiotic infusions, they finally took out a section of my colon. Thankfully, I came out without a bag, as they had prepared me for. Kathleen, I have always had a marker after each cycle of the current regimen, whatever it was. This regimen is both chemos every two weeks, so just before the second part of the cycle they do a marker. Perhaps that is why I got yanked off of Gemzar about 4 years ago, and it turned out to be my best chance on a tumor sensitivity test they had done after my last surgery on the colon. It showed up at only 38%, but was the best one. That's interesting, huh? I had chemo yesterday, so am not feeling so hot this morning, but wanted to get back to you wonderful ladies hopefully answering some of your questions. Take care everybody!!!! Luv and hugs, MM

    4 years
    4 years of non stop chemo sounds rough but I will take it! I want to live and be here for my children. My goal is to see my kids to their teen years.

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