One down...11 to go
The doctor and I talked a little about stats and odds......though he really doesn't like to and it's like pulling teeth. He says that at this point, we are still hoping for "100% odds of long-term survival", because I'm NED. Time will tell, Doctor M. Time will tell.
Anyway, he confirmed that the very scary stats we keep pulling up on the Net, like 20% chance of five year survival (diagnosed at stage IIIc), are very out-dated. Anything more than a couple of years old is out-dated.
Unfortunately, less than half the late-stage OVCA patients live more than five years at this time, but that can change very quickly. By the time we are approaching that elusive 5 year point, chances are the bar will be much higher.
As for the "magic" CA125 number (after first-line treatment), my doctor says there isn't one. Those studies lumped women into groups: CA125 of <10, 10-15, 15-20, etc all the way up to >35. Yes, the single-digit ladies did, as a whole, go longer without a recurrence than the other groups, but the big picture was this: women whose CA125 falls to normal range following first-line chemo tend to have fewer recurrences within the first year following treatment. I may not have reached my nadir yet (lowest number), as it can take up to 90 days following the end of treatment, but then, I have started maintenance Taxol, so who knows if that will skew the trend (for me), or not. There are just too many individual variables to get your hopes up (or crushed) based on these studies.
My lowest CA125 to date was 12. My doctor does not believe there is much difference between 12 and 9.....or 12 and 15. He says those very small increments mean nothing. But, for purposes of the study, they had to draw the line somewhere. Some drew it at 10, others at 12, or even 16. Clearly, it's not an exact science - not even close.
If your CA125 drops by 50% or more following surgery (pre-chemo), there are studies that say your long-term survival chances are increased. Mine dropped from 4000 to 2200 - not quite 50%. BUT....considering that I had a bowel obstruction at the time, my doctor says 2200 is "close enough". Again, too many variables.
Carlene.......whose head is spinning, but not from chemo.
Comments
-
Hi Carlene,
It's good to
Hi Carlene,
It's good to hear your first maintenance treatment was uneventful. My doctor said, I should not get very ill as far as side-effects go. Of course the hair will go but ... it's only hair. LOL!
Looks like I'm following in your path also. We decided on Taxol since I had such good results with it my very first treatment (Which was Carbo/Taxol). Without the carbo, I hope it's tolerable. I have been known to have a cast-iron stomach. :-)
Maybe we too will be able to have some comparisons along our trek?
Thanks a mil Carlene for your valuable input.
Hugs,
Sharon0 -
Thanks Carlene
I think we are going to have to make you the resource queen, along with Linda P.! You always have such good stuff to share! My Doc gives me five minutes if I'm lucky. He really doesn't seem to want to discuss any stats! As long as my CA125 is good and my scans are clear, he is happy. He seems shocked if I mention anything about life expectations. He steps in big time,though, for the major stuff.
My Doc sounds very much like yours in philosophy. I, too, am on taxol maintenance. I was derailed by a major bowel reconstruction in November, but 'am back at the pumps! LOL
BTW, my count did drop shortly after starting maintenance, went from 9 to 5, which became my new baseline. He said it never goes below five, although I see ladies that claim that have 2's, maybe it's the lab(????)
Thanks again for sharing, off to the pumps.. Ginny0 -
CA 125 and Taxol Maintenancefroggy1 said:Thanks Carlene
I think we are going to have to make you the resource queen, along with Linda P.! You always have such good stuff to share! My Doc gives me five minutes if I'm lucky. He really doesn't seem to want to discuss any stats! As long as my CA125 is good and my scans are clear, he is happy. He seems shocked if I mention anything about life expectations. He steps in big time,though, for the major stuff.
My Doc sounds very much like yours in philosophy. I, too, am on taxol maintenance. I was derailed by a major bowel reconstruction in November, but 'am back at the pumps! LOL
BTW, my count did drop shortly after starting maintenance, went from 9 to 5, which became my new baseline. He said it never goes below five, although I see ladies that claim that have 2's, maybe it's the lab(????)
Thanks again for sharing, off to the pumps.. Ginny
I don't know what the lowest recorded CA 125 is in my doctor's lab, but he says NO ONE ever gets to zero.
Some doctors consider the monthly Taxol infusions, when started right after first-line chemo, to be nothing more than second-line treatment begun pre-onset of symptoms of recurrence. So there is still a lot of debate on whether we are doing maintenance or second-line chemo.
Unfortunately, the Feds stopped the study before it was complete, so each doctor has to use his own judgment and/or experience with his patients. My doctor is pretty conservative (no longer does second look surgeries and more often than not, does not do IP chemo for late stage OVAC) and he thinks the Taxol maintenance is warranted.
If the drop in your CA 125 (from 9 to 5) was within 90 days of your last Taxol/Carbo treatment, then it is definitely your nadir (lowest number achieved under active treatment). And 5 is a great number. That puts you in the group that supposedly has a better long-term prognosis. Actually, the 9 put you there anyway, but 5 is better. I would love to see 5. At diagnosis, my CA 125 was 4,000 so my doctor is very happy with my last reading (13). But I'm with you - the lower, the better.0 -
Low CA-125'sfroggy1 said:Thanks Carlene
I think we are going to have to make you the resource queen, along with Linda P.! You always have such good stuff to share! My Doc gives me five minutes if I'm lucky. He really doesn't seem to want to discuss any stats! As long as my CA125 is good and my scans are clear, he is happy. He seems shocked if I mention anything about life expectations. He steps in big time,though, for the major stuff.
My Doc sounds very much like yours in philosophy. I, too, am on taxol maintenance. I was derailed by a major bowel reconstruction in November, but 'am back at the pumps! LOL
BTW, my count did drop shortly after starting maintenance, went from 9 to 5, which became my new baseline. He said it never goes below five, although I see ladies that claim that have 2's, maybe it's the lab(????)
Thanks again for sharing, off to the pumps.. Ginny
Hi - I guess I'm one of the ???? lab results that have CA-125's below 5. I don't know why they are low, but I will take it what it is. I am stage IIIC and started out at 767. I read the operative report and it was really ugly where all the little seeds were - as if scattered by the wind in a tornado. They had to close before I could get a port in.
After my 4th taxo/carb treatment last April my # was 5.13. After my 6th tx. in July it was 3.52. It dropped after that to 3 in Aug., 2.35 in Dec. and this (3-23)week in prep for a 3 month follow-up on Monday it's reading 2.45.
I will never let my guard down, because I know it's lurking, and I'm not convinced that my onc. won't order a CT scan as a safeguard although he previously said as long as the numbers were low I wouldn't need one. I would think after 6 months I would have one to double check esp. after the ileo reversal in Oct. My reversal required another open look. I read the op. report for that and it was clean, all the pathology reports were negeative from the various organs and tissues.
This is one reason I chose not to go on the Taxol maintenance. I had multiple complications from the multiple surgeries last year and my numbers remained low, but again I'm still fighting this- I know I'm not in the all clear and never will be, but am getting on with my life. I pray for all on this board constantly and everyone affected by this disease. I believe in the power of prayer and I feel God is prepping me for something else big that's coming. I always get that feeling when His grace touches me, and it always comes in two year cycles. I hope this spring takes on a special meaning for everyone this year. I walk with Hope and Faith. Take care, Ellen0 -
Thanks, Nancy.....I am sonancy591 said:good luck!
I know a lady online who finished a year of taxol last April and is still without recurrence!!
Thanks, Nancy.....I am so hoping that next April, you will be telling people you know TWO ladies online who finished a year of Taxol and are still in remission.
Carlene0 -
Hi Carlene
I really hope this maintenance taxol works for you - i will be thinking about you. You always manage to provide me with such useful informtion. I have just received #5 CA125 results which has come down to 70. I will get my final reading in 3 weeks which I am hoping takes me below 35. However my oncologists will leave me alone for 3 months (90 days) to allow my body to heal from the chemo and they will then do another CA 125. Now I know why they are doing that - to get my baseline. I was scared that the cancer would begin mulitplying with chemo and wondered why they were leaving me so long!!!
I never had surgery but my CA 125 has always come down consistenly each time. At diagnosis I was 1119 - 889 - 291 - 156 - 115 - 70 - ? fingers crossed it will be below 35.
Best wishes Tina xxxx0 -
Done?Tina Brown said:Hi Carlene
I really hope this maintenance taxol works for you - i will be thinking about you. You always manage to provide me with such useful informtion. I have just received #5 CA125 results which has come down to 70. I will get my final reading in 3 weeks which I am hoping takes me below 35. However my oncologists will leave me alone for 3 months (90 days) to allow my body to heal from the chemo and they will then do another CA 125. Now I know why they are doing that - to get my baseline. I was scared that the cancer would begin mulitplying with chemo and wondered why they were leaving me so long!!!
I never had surgery but my CA 125 has always come down consistenly each time. At diagnosis I was 1119 - 889 - 291 - 156 - 115 - 70 - ? fingers crossed it will be below 35.
Best wishes Tina xxxx
Tina,
Are you done with the carbo/taxol? Best of luck to you!0 -
Hi Nancynancy591 said:Done?
Tina,
Are you done with the carbo/taxol? Best of luck to you!
Yes done with carbo/taxol - whoop whoop. It is day 3 after the infusion & I am feeling porly but I know it will get better by the end of the week.0 -
maintenance
After initial treatment of taxol/carbo in 2008, my maintenance treatment in 2008-09 was Hexalen and as with all the chemo treatments was hard on my blood counts so had to stop.
My CA 125 has never been below 6. But did drop significantly after surgery. There are so many different opinions between onc/gyn and so we are each so different it is really hard to find a "normal".
I am now on carbo/gem (after switching from cisplatin b/c of allergic reaction) and have had 13 treatments with one to go and know that I am still not done.
I choose to believe it is not over until my Heavenly Father calls me home. That could be tomorrow or 20 years from now. So numbers and statistics are great to read but I don't live my life around them.
I read up a lot about cancer and now am reading The Encyclopedia of Pragmatic Medicine (Pragmatic: Practical Medicine with special emphasis on the causes of disease and the results of treatment - what works and what doesn't work.)
So MUCH information out that, makes me tired just thinking about it! ☺
Living for Eternity,
Libby ♥♥0 -
I'm enviousLPack said:maintenance
After initial treatment of taxol/carbo in 2008, my maintenance treatment in 2008-09 was Hexalen and as with all the chemo treatments was hard on my blood counts so had to stop.
My CA 125 has never been below 6. But did drop significantly after surgery. There are so many different opinions between onc/gyn and so we are each so different it is really hard to find a "normal".
I am now on carbo/gem (after switching from cisplatin b/c of allergic reaction) and have had 13 treatments with one to go and know that I am still not done.
I choose to believe it is not over until my Heavenly Father calls me home. That could be tomorrow or 20 years from now. So numbers and statistics are great to read but I don't live my life around them.
I read up a lot about cancer and now am reading The Encyclopedia of Pragmatic Medicine (Pragmatic: Practical Medicine with special emphasis on the causes of disease and the results of treatment - what works and what doesn't work.)
So MUCH information out that, makes me tired just thinking about it! ☺
Living for Eternity,
Libby ♥♥
Hi Libby,
I'm envious of ladies like you and Carlene who can read through all of the material. I've always been one who wants to know everything but this, well, everything is too much. I get so hung up on all the negatives, I'm finding that it's true that "ignorance is bliss." In moderation of course. I guess that makes me a bit of a coward, but I don't remain totally uninformed. As my doctor presents specifics, I get informed about those specifics and I have researched some of the clinical trials and the other treatments.
Perhaps as my journey continues, I will venture out into the sea of information, but now, everytime I dip my toe in, I feel like I get stung by a jellyfish! lol
Hugs
Leesa0 -
Leesa,leesag said:I'm envious
Hi Libby,
I'm envious of ladies like you and Carlene who can read through all of the material. I've always been one who wants to know everything but this, well, everything is too much. I get so hung up on all the negatives, I'm finding that it's true that "ignorance is bliss." In moderation of course. I guess that makes me a bit of a coward, but I don't remain totally uninformed. As my doctor presents specifics, I get informed about those specifics and I have researched some of the clinical trials and the other treatments.
Perhaps as my journey continues, I will venture out into the sea of information, but now, everytime I dip my toe in, I feel like I get stung by a jellyfish! lol
Hugs
Leesa
Reading is my favorite past time and always has been. Now that I am home and not working as Church Administrator, I have more time to read. True I'd rather read "fluffy stuff" but I like being informed. ☺ I don't take anything I read as the gospel truth only the Bible! ;>)
No you are not a bit of a coward, even getting on the computer when I was first diagnosed had me scared for awhile but had to put it into perspective. I guess I have just come to the conclusion that only One Person knows for sure what is REALLY going on in my body and my Hope is in Him.
Not that I am laying down and not doing anything, but I pray for guidance and His knowledge as my husband and I make decisions. My life is in His hands not my onc/gyn. My doctor is my bonus but Jesus is my Great Physician.
Like I said before - He can heal me, go through this with me (which is what He is doing) or take me Home. It's a win/win situation no matter how I look at it! HE IS WITH ME!
I am waiting now for my second opinion at the James Cancer Center, Columbus Ohio. Just another option.
Take care,
Libby ♥0 -
It's just my weirdleesag said:I'm envious
Hi Libby,
I'm envious of ladies like you and Carlene who can read through all of the material. I've always been one who wants to know everything but this, well, everything is too much. I get so hung up on all the negatives, I'm finding that it's true that "ignorance is bliss." In moderation of course. I guess that makes me a bit of a coward, but I don't remain totally uninformed. As my doctor presents specifics, I get informed about those specifics and I have researched some of the clinical trials and the other treatments.
Perhaps as my journey continues, I will venture out into the sea of information, but now, everytime I dip my toe in, I feel like I get stung by a jellyfish! lol
Hugs
Leesa
It's just my weird personality.....I always want to know the odds, the worst case scenario (as well as the best), and everything in between. I don't like surprises. And I don't want to set myself up for heartbreak. I have seen this disease do that to so many, who celebrate single digit CA 125 results and negative CT/PET scans, etc, only to be slapped back down with a recurrence a few months later. That is not to say I don't believe in miracles; I do. But the fact is, more than half of us who are diagnosed at stage III or IV will not live five more years. But some of us will. (Some of us already have!) And probably a few of us will die from other, unrelated things. So will a portion of the general population.
Whatever makes you the most comfortable is what you should do. If it's not absorbing all the grim statistics and focusing solely on the success stories, that's what you should strive for. Block out the rest. Don't Google and don't ask too many questions because most doctors are ethically bound to tell you, if you ask a direct question. (My doctor hates it when I do that, but he always gives me an honest answer.)
I truly wish I had a crystal ball. Even if I knew the outcome for me was bad, I could prepare better. I hate surprises!
I am a Christian. I believe in the power of prayer. I also know that sometimes, the answer is "No". Cancer is not a punishment; it is not a test of faith. It just is.
Carlene........the philosopher0 -
prayerHissy_Fitz said:It's just my weird
It's just my weird personality.....I always want to know the odds, the worst case scenario (as well as the best), and everything in between. I don't like surprises. And I don't want to set myself up for heartbreak. I have seen this disease do that to so many, who celebrate single digit CA 125 results and negative CT/PET scans, etc, only to be slapped back down with a recurrence a few months later. That is not to say I don't believe in miracles; I do. But the fact is, more than half of us who are diagnosed at stage III or IV will not live five more years. But some of us will. (Some of us already have!) And probably a few of us will die from other, unrelated things. So will a portion of the general population.
Whatever makes you the most comfortable is what you should do. If it's not absorbing all the grim statistics and focusing solely on the success stories, that's what you should strive for. Block out the rest. Don't Google and don't ask too many questions because most doctors are ethically bound to tell you, if you ask a direct question. (My doctor hates it when I do that, but he always gives me an honest answer.)
I truly wish I had a crystal ball. Even if I knew the outcome for me was bad, I could prepare better. I hate surprises!
I am a Christian. I believe in the power of prayer. I also know that sometimes, the answer is "No". Cancer is not a punishment; it is not a test of faith. It just is.
Carlene........the philosopher
I feel the same on a lot of what you said. Sometimes it is hard to focus soley on the success stories and sometimes they seem so far and few.
I don't know if I'd want a crystal ball. I am 1.5 years from diagnosis. Thinking about dying too soon from this disease doesn't terrify me anymore like it did initially. Although I hate the thought of leaving my young kids motherless I've come to realize they will be ok, taken care of and loved. It's taken me a year of therapy to come to terms with this.
Before my recurrence I couldn't wait for the next blood work or CT because I just had to know. Now I wish I could keep my head in the sand for a little while longer.
Prayer...I've been meaning to start a thread on this. I am catholic...12 years of catholic school. I know there are a lot of Christians on here. I still cannot pray for God to 'heal' me. I just cannot speak those words. I pray of strength..for me and my family. I feel, when I pray, that my problems are so small in the 'big pictutre'. When I feel like asking God to please keep me here until my boys get older I think about all the suffering in the world etc. I feel that I've lived a good life and I should be grateful for that. I wasn't born in third world country, I had a happy life. I feel like it would be selfish of me to ask God to 'save me'. Does anyone feel the same? Is it wrong to pray for more time here on earth?0 -
Right there with you
I have said many times that I could not pray for myself. I never felt bad about asking others to pray for me though. My prayers have changed now too. I am not terrified anymore of the "what ifs". I don't want to go but I am no longer afraid. I am so thankful to be in this place in my life. I have never wanted the details and the ones I got were too much for me. I never really listened to the doctor. I guess I felt the less I knew the less I would fear. I did not read my report but my family felt compelled to TELL me just enough so I would know. Which I did not WANT to know. But everyone is different. I can tell you I don't live on stats becasue I do know this. 5% of people in this country today are autopsied. So who is to say who died of what??? The statistics lie because there is no good record keeping going on. The only people who keep the data are the doctors but both of my friends who have died actually died from the effects of chemo and not from the cancer itself. So is it because they treat OVCA so intently that people die or is it because they succumb to cancer? Who is there to ask? Do you think anyone has called me and said "hey are ya still with us?" But I would be a great statistic wouldnt I but they dont have me in the system....so how many others arent there? Its a craps shoot. I like that there is someone looking out for me and that when my time comes Ill go.0 -
Just for the recordmarleyboo2 said:Right there with you
I have said many times that I could not pray for myself. I never felt bad about asking others to pray for me though. My prayers have changed now too. I am not terrified anymore of the "what ifs". I don't want to go but I am no longer afraid. I am so thankful to be in this place in my life. I have never wanted the details and the ones I got were too much for me. I never really listened to the doctor. I guess I felt the less I knew the less I would fear. I did not read my report but my family felt compelled to TELL me just enough so I would know. Which I did not WANT to know. But everyone is different. I can tell you I don't live on stats becasue I do know this. 5% of people in this country today are autopsied. So who is to say who died of what??? The statistics lie because there is no good record keeping going on. The only people who keep the data are the doctors but both of my friends who have died actually died from the effects of chemo and not from the cancer itself. So is it because they treat OVCA so intently that people die or is it because they succumb to cancer? Who is there to ask? Do you think anyone has called me and said "hey are ya still with us?" But I would be a great statistic wouldnt I but they dont have me in the system....so how many others arent there? Its a craps shoot. I like that there is someone looking out for me and that when my time comes Ill go.
I did continue to see the Drs. for 3 yrs. after I was diagnosed with no reocurrance. But then I asked myself why....if I did have a reoccurance I could not /would not do the Chemo. By that point I had already racked up a bill of roughly 30,000 not covered by insurance. I KNEW I would never leave my husband in that bind again. So I just wanted you to know I did go...I just decided it was not for me.0 -
Five yearsHissy_Fitz said:It's just my weird
It's just my weird personality.....I always want to know the odds, the worst case scenario (as well as the best), and everything in between. I don't like surprises. And I don't want to set myself up for heartbreak. I have seen this disease do that to so many, who celebrate single digit CA 125 results and negative CT/PET scans, etc, only to be slapped back down with a recurrence a few months later. That is not to say I don't believe in miracles; I do. But the fact is, more than half of us who are diagnosed at stage III or IV will not live five more years. But some of us will. (Some of us already have!) And probably a few of us will die from other, unrelated things. So will a portion of the general population.
Whatever makes you the most comfortable is what you should do. If it's not absorbing all the grim statistics and focusing solely on the success stories, that's what you should strive for. Block out the rest. Don't Google and don't ask too many questions because most doctors are ethically bound to tell you, if you ask a direct question. (My doctor hates it when I do that, but he always gives me an honest answer.)
I truly wish I had a crystal ball. Even if I knew the outcome for me was bad, I could prepare better. I hate surprises!
I am a Christian. I believe in the power of prayer. I also know that sometimes, the answer is "No". Cancer is not a punishment; it is not a test of faith. It just is.
Carlene........the philosopher
I'm hopeful that in five years, we will all be new statistics showing a much higher survival rate and a much lower rate of recurrence!
Hugs
Leesa0 -
Me, too, Leesa. I told myleesag said:Five years
I'm hopeful that in five years, we will all be new statistics showing a much higher survival rate and a much lower rate of recurrence!
Hugs
Leesa
Me, too, Leesa. I told my doctor it was his job to keep me alive until something better came along, treatment-wise.
Carlene0 -
I am Catholic, too. Everynancy591 said:prayer
I feel the same on a lot of what you said. Sometimes it is hard to focus soley on the success stories and sometimes they seem so far and few.
I don't know if I'd want a crystal ball. I am 1.5 years from diagnosis. Thinking about dying too soon from this disease doesn't terrify me anymore like it did initially. Although I hate the thought of leaving my young kids motherless I've come to realize they will be ok, taken care of and loved. It's taken me a year of therapy to come to terms with this.
Before my recurrence I couldn't wait for the next blood work or CT because I just had to know. Now I wish I could keep my head in the sand for a little while longer.
Prayer...I've been meaning to start a thread on this. I am catholic...12 years of catholic school. I know there are a lot of Christians on here. I still cannot pray for God to 'heal' me. I just cannot speak those words. I pray of strength..for me and my family. I feel, when I pray, that my problems are so small in the 'big pictutre'. When I feel like asking God to please keep me here until my boys get older I think about all the suffering in the world etc. I feel that I've lived a good life and I should be grateful for that. I wasn't born in third world country, I had a happy life. I feel like it would be selfish of me to ask God to 'save me'. Does anyone feel the same? Is it wrong to pray for more time here on earth?
I am Catholic, too. Every Sunday (Saturday, in my case) when we kneel before Communion, we say the same prayer.....Lord, I am not worthy to receive you, but only say the word and I shall be healed. That prayer has new meaning for me now. I say it every night before I go to sleep. Withouth fail.....every single night. I don't know if it's selfish or not. Like you, Nancy, I have a family and it saddens me beyond words to think of them standing beside my grave, tears in their eyes, an empty, aching hole in their hearts. I know that feeling all too well. I have buried both my parents, my only sibling, two husbands and a grandchild.
Fortunately, God is accustomed to hearing prayers that are selfish, prayers from people who have committed terrible sins, prayers from those who did not believe in him before it became obvious that they are not guaranteed a full measure of life and could, without a moment's notice, become a meaningless little dot in the history of the world. God has a way of sorting all that out. He has a plan and a reason for it, but I don't believe it's wrong to ask for mercy. Many, many saints were just sinners who begged for Christ's mercy.
Peace.........
Carlene0
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