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Early Chemo to Prevent Ovarian Cancer Recurrence Fails to Increase Survival
http://www.cancer.gov/ncicancerbulletin/060209/page2
Found this interesting because I would have assumed that initiating treatment for recurrences sooner rather than later would be helpful. Evidently it's not.
Cancer Taxol Surgery Arthritis Breast cancer Ovarian cancer Anxiety Chemotherapy
Hmm. I find this very interesting, as I am on maintenence taxol with no evidence of disease and a CA125 of 5. My Doctor feels in his practice he has seen postitive results. NOW- What to do????
This whole issue is so darn confusing. Some Drs. are for maintenance chemo, others are not. I hate being a guinea pig for this disease!
I also feel like the drs are taking best guess answer for this disease. If the insurance will pay for it, they go for it. No regard for our ability to pay the bill, much less carry on a normal life.
I am 13 days past #3 and have neuopathy on my left side so that I cannot sign my name, lift a pot without 3 hands but the dr insists is isnt' neuopathy and is putting me through brain ct and brain mri.
My CA125 after surgery was 0.
Thanks for the link, I will be taking it to my next visit June 11
Thank you for this post - just two weeks ago I begged my doctor for treatment for my rising but still normal CA 125. He said "no" so I guess I'll trust that he knows what he is talking about and that his judgment is based on good information.
It's interesting that the article talks about the anxiety surrounding the CA-125 numbers. Even on the MedHelp board, there is constant talk about the CA-125 test as the definitive indication of recurrence.
I bet this changes the way doctors will manage this disease. Hopefully it will help women avoid the constant chemo.
Very interesting. This could be why some of our doctors do not jump on the chemo bandwagon with a small increase in CA-125 numbers as has been discussed here before.
My doctor keeps testing and monitors any increase, but seems to wait for a certain level before starting chemo. For both recurrences I was over 100 (107 and 116) when I started chemo. I know everyone has a different CA level, but in remission mine was always single digits so when we got up to 100 we knew there was trouble.
My doctor has never discussed chemo maintenance with me. So far, he seems to react when we have proof of a recurrence. Maybe this is because I have gone into remission after treatments. As my surgeon once told me, you can discuss ovca with 20 different specialists and get 20 different answers. You just have to trust your doctor.
up2late, My understanding is that neuropathy affects both side equally. When the tingling and numbness in my feet got worse instead of better after I finished treatment I was also sent for a mri of my neck because when I bent my head forward the tingling increased for a second. Turns out I have severe cervical spondylosis which is basicly arthritis of the neck. I will eventially need to have surgery. Prior to chemo I had no clue of any problem. Your chemo my hav brought out a underlining problem
dwm26
the pathology showed no sign of disease anywhere but the one ovary - the dr took both ovaries, uterus, tubes, cervix, nodes, appendix. I was staged IC. My CA125 was zero after surgery and before chemo.
The mri and ct showed nothing wrong. I have lost my job due to my inability to work. I have been out of work since Feb.
I have other side effects from chemo affecting my ability to take care of myself and family and I just want to know that there is sufficient reason for me and my family to be going through this hardship.
I too having a recurrence have had questions about this. My doctors decided to wait to see what my cancer was going to do after finding it during an intermitten bowel obstruction surgery. It did just sit there for about five years before it started growing.
I started to take chemo when it did start growing, that was about six years ago. The doctor decided to stop the ca125, it was contradicting the CT scans, and it did make me anxious for the results. The chemo's only worked for a short time , so we went on to another drug. Now my best option is debulking surgery. That is on the schedule for next friday. My cancer is slow growing and the doctors knew that, I think that is why they treated me the way they did.
Me too! I am NED, just started weekly maintenance taxol. My onc who is experienced, well trained says he thinks it increases disease free interval and the evidence is not in on long term survival.
What put me off is the study had a "cost effectiveness" focus,,saving money. And I want to read the whole article.
My kids are statisticians who work in Cancer and review all these articles for me from epidemiology and stats and design of study. I will let people know when they weigh in.
I do wonder if early chemo might for some, not all, "wear down" the body, decrease the ability to fight the cancer and it gets more aggressive. I wonder that and would like to know what treatments the two groups who had rising Ca 125's had,,were they controlled for same treatment regimins.
Maybe a second opinion if you have doubts about the chemo??
Can I say that I don't think docs are making treatment decisions to run up their bill? I just don't think oncologists are that mercenary.
There is a legitimate controversy on this issue and the docs are as in the dark as we are and are going on their experience with their patients.
But if anyone doesn't want maintenance they should get a second opinion or drop it.
I don't think this article is the definitive answer and won't until I read the entire thing.
There is a very real cost to the woman undergoing chemo. There has to be a justified reason to benefit her and justify the cost of 6 months that she is unable to work and take care of her family. I know that there are some that do manage that, but few on carbo/taxol can make it. Many women lose their jobs because of this treatment. In this economy, it is a risky thing to take 6 months off from employment.
Then, to find out that when there is a recurrence, the chemo is less effective because of previous treatments is devastating.
This may be weird to say, but I actually find this reassuring. We've been going crazy in my family because my mom's CA125 levels are not reliable. They have never been elevated even when she was operated for stage IIIC. Now it seems like it may not make that much of a difference.We can just trust that the scans will be sufficient. Is this the take that other people have on this? Has anyone had a chance to talk to their oncologist about this?
up2late, is it true that oncologists feels that chemo can be less effective because of maintenance treatments? That is so confusing.
Anne
aff 222,,it is a conundrum isn't it?
I think that with every recurrence, the time to recurrence seems less after treatment and thought that was due to the cancer getting meaner and meaner.
This article seems to say that if you treat the rising Ca125 that the cancer when it recurs might be worse.
I think it may depend on how wearing the chemo regimin is.
But this is one article and it is not the experience of everyone in the study so a good look at the characteristics of the people in the early treatment and later treatment groups is warrented.
It probably is that some women benefit from early treatment of the rising marker and others don't. The stats say usually there is no difference.
But for some women in that study there was a benefit to early treatment.
The big question is who benefits,,is it women who can be identified.
Both cost and quality of life and length of remission and ultimately length of life, all of these have to be weighed.
meanwhile we are all in sort of a nebulous place and it is that which is so frustrating.
There was quite a discussion on another ovarian cancer website regarding this article. I also brought it up at our "Gyna Girls" support group this past Monday. There was quite a discussion regarding this article. There are a couple things to keep in mind.
First of all, it was a very small study, only about 250 women in the group. About 500 when you include the control group. Second of all, no indication as to who paid for the study. Was it an insurance company who would benefit (in the short term) from fewer CA125 test to pay for. And third, what were the stages, etc. of the women in the study.
The initial report had none of that information. There was a NY Times reporter who wrote an editorial Monday regarding the study and was flooded with e-mails from those women who were in favor of knowing what their CA125 levels were.
I am one who certainly hopes that Doctors continue the CA125 testing as a part of the regular check-up of post OC patients.
Pat
The sad reality of this study is the statistics that prove that treating early makes NO difference in survival rates for SOME women. They just don't know why some respond and others don't. It depends on how fast or how slow your cancer grows.
Also, if you were to ask your gyn onc they would tell you that there is no standard of care treatment for recurrence. They are all pretty much "winging it."
It's not very reasurring to me as someone who has never had a "normal" ca 125 in the 3 yrs I've been at this. But...to me quality of life is what is important. Sure I've been on some kind of chemo for most of the time and it's kept me stable for the most part. And I'm enjoying life!!
There is a lot of exciting research going on right now and we are in deperate need for a breakthough drug.
My thoughts are with you all.
The CA-125 test is not a good diagnostic tool for me and I've had other women who said the same. It was in single digits both before and after my surgery.
I think this article is interesting and gives another perspective on when to do chemo for recurrences. Unfortunately, there is no standard protocol for ovc and there's so many different types. As someone else said, you have to be able to trust your doctor.
Lilly helped fund the study which was centralized in the UK. What distubed me was the discussion at the end on how much money would be saved by not doing Ca 125's and the rather dismissive description of women as "addicted" to getting their numbers and how all that "anxiety" could be avoided by not doing them,,and saving money too.
It totally turned me off as to what was the purpose.
There was no report of the secondline or third line treatments between the early treatment group and the latter treatment group,,we don't know because it wasn't controlled. It was an opportunity to see what worked but they didn't pursue.
I have a concern that they waited for "clinical symptoms",,we all know this damned cancer sometimes has such few or such vague symptoms that you wonder how long they waited to treat.
I am thinking they missed an opportunity to see what worked with early treatment and what worked with late treatment and they didn't do it.
I am waiting for the entire study so I can look at it but it is bugging the heck out of me,,especially the dismissive tone toward us "addicted" women and the very idea that someone should decide for us what testing follow up we get based on a patriarchal idea that they know best.
Patricia 123,
Sing on, sister! I read a review of this study in Oncology Stat. I have the same questions about the study being biased from the beginning. I think Mark Twain said it best, "There are lies, d_ _ n lies, and statistics."
I can see insurance companies jumping on this and refusing to pay for CA125s. Mine was only 82 with Stage 2B clear cell cancer. However, if I have to wait for "symptoms," I'm up a creek. I had a softball-sized tumor found during a pelvic ultrasound and was absolutely clueless about its presence. I only had the ultrasound because I was part of a university study for high-risk women. (My sister had died of ovca seven months earlier, and my mom had breast cancer. Ironically, the BRCA1 mutation probably came from my dad's genes--6 of 7 siblings died of cancer.)
In short, if I have to rely on symptoms, I'll be dead before I realize I have any!
My next check-up is next week. I'll let you know what my gyn oncologist says. Poor man! By then, the office should copy his response and hand it to us when we sign in!
Hopefully the standard of care will include better testing mechanisms. My doctor has agreed to check into the HE4 test, which is "supposed" to be somewhat more accurate in identifying ovarian cancer presence, and I heard there was a new test coming out of Yale as well. I agree that the CA-125 is inconsistent for a lot of women, and figuring out if it works for you is challenging.
I doubt that they will discontinue the CA-125 anytime soon, and as others have stated, the decision as to when to restart chemo for recurrences needs to be a joint decision between each of us and our physicians. So far I've not been affected by bad side effects, but once I finish this course of treatment, I have no desire to start up again any sooner than is absolutely necessary. That is what I found interesting about the article -- that starting chemo before there is evidence of disease doesn't appear to extend life expectancy even though you will have had more chemo.
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