Guess Work?

[Teresa222]

I spoke to my ONC's nurse today.  We were discussing my CA125.  What a mystery all this is to me.  Is there any way my CA125 can be a reliable indicator of my disease when it was showing a 6.8, and I had a cancerous tumor in me at the time.   I ended up having surgery to remove it in Oct. (this year) After surgery, my CA 125 is now 8.  So what's up my friends? Am I to understand my CA125 is or is NOT now reliable?  The nurse only implied not knowing when I asked her today.  She said it could go either way. Well...we as the patients sure don't want any wishy-washy testing when we are relying on it for our lives. What's a gal to do in these circumstances?

I am also assuming that after spending six months having carbo/taxol, then having a tumor less than two months later...that carbo is definitely not reliable.  My ONC said "usually" (not too clear here) that if a tumor develops within two months of the initial chemo, that it means the carbo didn't work. However, that does not mean that it never will, he said. That at some point in the future, carbo may work. Is this the way you guys understand it? It sure doesn't sound very logical to me.
Teresa, who is thinking about things to worry about tonight. I feel lousy, so I might as well wallow in it.

[silver&gold]

Hi Ana, I still have neuropathy in my feet and I finished my chemo in sept 05. It has improved a lot to what it was but annoyingly I still have it .

Angie

[bcppc]

My cancer can be monitored by the CA-125 as well....when I had the very first Thoracentesis back in November of 2005,  my CA-125 was 4,241....
   Now it is at it's lowest,  5.9 as of September 23, 2008..
Does anyone know how high it can be?  are there any numbers higher than mine?
    
I was wondering if anyone here has any Neuropathy in their feet?  I still have it and some muscle weakness in my ankles..stiffness and pain in my right hip when I first get up from a chair or upon waking up.

I am talking to a nurse at UCSF San Francisco tomorrow and I will ask about the new Biomarker HE4 that was mentioned here.

I am so impressed by how well you all explain things, Thank You!
  I am learning so much here.
Ana

[Teresa222]

Thank you. I printed the information you gave so I can take it to my ONC.
Teresa

[marie3B]

Thanks.  I have heard of genistein through alanpvegas.  I will look into this.  I go to my internal med doc this afternoon.  He is often more willing to look into things for me than my onc.  I hope all is okay with you.  Marie

[Mags711]

Marie and others,
I have read about a chemo drug called phenoxidol that is being tested right now.  It is a derivative from genistein which is an isoflavone from soy.  Basically, it is an antioxidant.  They are testing it because it shows promise as an agent that will resensitize platinum resistant tumors.  If you google phenoxidiol you will see many references to it on the web.  You can also go on the National Cancer Institutes website to find out whether or not there is a trial near you.  This is one I am interested in and my onc is supposed to be checking in with the doc doing the study near me.  When I get more information I will pass it on.
Also, my CA125 is sometimes a good marker for me, but if I get sick to my stomach or if my hernia bothers me, the CA125 gets all wacked out.
Maggie

[Teresa222]

I didn't have an assay done.  Do you suggest I request one?
Teresa

[lucymullis]

I have known survivors that were platinum refactory and platinum resistance to carbo and who tried it later and it did work.
Just curious....did you have an assay done and, if so, what did it say about carbo?

[crecco]

  I agree Teresa, it sounds as though the CA test is not a reliable test for you. But that is the whole concern about the CA test, that it is just not reliable for every one. For me it is. I know that when my CA starts going up that something is going on.
  I would be confused too Marie. But you said that your onc considers you stable. I am pretty sure that stable means to disease progression. So as long as the tumors are not growing then that is great.
  I too am platinum resistant. I get that all confused too. I can never remember which is which. But I did reccure 6 months after chemo and surgery.
  I also still have tumors which my onc does not worry about too much as long as they do not start growing. He has said that although we could do surgery, he would rather me keep my strength for chemo because surgery takes so much out of you and we have been able to hold everything steady with the chemo.
  I will never be able to have carbo again due to having a reaction to it. I aksed about desensatizing and was told that it was not worth it.
  So I guess we get to keep our tumors and pray that they do not start growing. I have come to realize that stable is a good word.
  Chris

[Teresa222]

I can see why you are confused.  I wonder if they consider the remaining tumors non-malignant or so under control that they are non-threatening? Therefore, they consider you in remission.  I know...it sounds as if I don't know what I'm talking about just writing it. So many of these doctors speak to us like they're Martians or something. LOL
Teresa

[marie3B]

I don't think the chemo did a thing to my remaining tumors.  Surgery got all but some implants in my left upper abdomen in the diaphragm.  Those are still there.  They have not grown, at least not at the time of my last scan, but they are still there.  That is why I am confused that my onc considers me in "some sort of remission."  What remission if I still have tumors?  I have questioned it but she says I am stable at this time.  Following chemo my CA125 was 4.6.  After that it got as low as 1.7, but has been up and down just a little.  Marie

[Angie_Lou]

Just about three days ago, Betty1227 posted (posts/show/685798) regarding another biomarker, HE4.  I went onto the Quest Diagnostics website and this biomarker is for monitoring epithelial ovarian cancer.  It can be used in conjunction with the CA125.  From what I understood, this is a more precise marker when the CA125 fails in some cases.

So, for those that have epithelial ovarian cancer, ask your onc to have this blood test done.  It's fairly new and although the CA125 has been a good marker for me so far, I'm keeping this info on file when the CA125 starts to fail me.

Angie

[Jan214]

No Teresa, you can not count on your CA125 to tell you anything.  It is just not a good marker for you.  Dr W has those patients do CT's way more often than the rest of us because of that fact.  I am considered platinum resistant because I recurred within 6 months of having carbo/taxol.  My CA was 585 before surgery, went to 92 after surgery and got down to 8.5 with the 6 rounds of carbo/taxol.  Platinum sensitive people are those that recur within 12 mths of initial therapy from which they had a good result.  I am now on carbo/doxil because it has been long enough for me to try it again and it did work very well the first time, just not long enough.
What is this pink urine stuff. I have been on this two months now and I haven't seen anything like that?
You need to ask your chemo nurse if she is chemo certified because it does not sound like she is.  It isn't a matter of it could go either way.  Either the marker works for you or it doesn't.  I wouldn't trust her.  We have got to find a way to get you back to my onc.  I don't trust that place you are going. They have made to many mistakes and they don't seem to have any answers no matter what you ask them.  You could come with me to chemo and than you wouldn't have the logistics problems.  Think about it okay?
Love,
Jan

[Tybear]

Mine's a lousy indicator for me. It was at 46 when I was diagnosed (Stage 3c) and it went to14 after my surgery - this after my doctor told me there was nothing left behind! I did the chemo and it literally, in three years, hasn't budged from 14-17. Not when my cancer came back, not while it grew and grew and not while it started to shrink.
It's so hard when this number means nothing...how do we make decisions? It's like guessing...
Take care,
Becky

[Teresa222]

In answer to your question: The ONC's nurse told me today that my CA125 might rise on Doxil for the first two or three treatments.  Then, it should go down to the "true indicator." (whatever that means at this point is baffling)  I won't have another CA125 until I've been on Doxil a full month.  Incidently, I have no signs of passing the Doxil. (pink urine)  I'm wondering where all the stuff is going!!
Teresa

[Teresa222]

My CA125 was 8 immediately following my first line of chemo. It was 357 at the time I was diagnosed, prior to surgery, and went down to 75 following surgery.  Since it was 8 after chemo and I had an active tumor, makes me think in this instance it was not accurate.  What do ya'll think about this now that I've explained this part?

Marie: I've also read or heard that someone proven to be platinum resistent in the past, can change and have it benefit them. I'm like you, I don't know where I got it. Also, I wrote a note to another Marie on his forum on Nov. 15th. I THOUGHT I was sending it to you. LOL Chemo FOG, big time!  What was your CA125 at the end of chemo? Did the chemo shrink your tumors or did they get it all during the initial surgery?

Ronni: You ARE a nurse in my mind, yes you are! I am so encouraged by your long remission.  I hope and pray you continue on this path! You GO GIRL!

Sharon: I explained above what my CA125 was at diagnosis.  I remember how doggone high yours was at that time.  When is the last time you had one and what was it? How often will your doctor CT Scan and/or CA125 you now? I hope it will be a good indicator for you.

Teresa

[Cindy809]

Teresa...Did you ask her about the Doxil?  My chemo nurse said that my CA125 will likely rise on the drug...I don't remember if I mentioned that in our message.  They will probably monitor you with scans.  I guess that is what my doctor will do too.  I get my second treatment next friday and I will ask.  Stay in touch with our treatments...Cindy

Ronni ... Thank you!!  It has never been explained to me that way.  My doctor insisted that I wasn't platinum resistant.  Even my Assy didn't show any resistance to Carbo and Cisplatin.  My cancer returned 2 weeks after completing Carbo/Gemzar and my doctor put me on Cisplatin/Taxol.  All through the 5 treatments(my CA125 doubled after 5)  I kept asking if I were platinum resistant.  He said no.  I wish I could find his email with his explanation.  Obviously I am.  The cancer progressed to the point where I don't know if I'll ever get control of it again.  I had very little disease after the carbo/gemzar.  It was at that point he should have put me on Doxil.  Oh well, I'm praying that this one will shrink the little beasts!!!  Thank you again....Cindy

[marie3B]

I hear ya!!!  My CA125 is being used to track me for a recurrence,too.  I don't trust it since I was full of cancer for a long time with a normal CA125.  As far as the carbo I have read of ways that a platinum resistant cancer can be changed to platinum sensitive.  I have read it here in the forum I think, but my chemo ravaged brain cannot remember what needs to be done to make the change happen.  Guess work is a good way to describe the way our cancer is treated.  Along with the guess work add the "wait and see" course of treatment and that pretty much sums it up for many of us.  I feel your frustration and share your worry.  Love, Marie

[bohan54]

Ms. T,

Sometimes they are about as clear as mud when we want our questions answered.  I know exactly how you feel.   Hope your chemo fog lifts soon.

It would seem that the CA 125 is not a reliable marker for you.  Was it in the beginning, like before your first surgery?  

Sharon

[vegas2cr]

Me I am not the doctor although I am only 13 credits away from my R.N. degree and that was 22 years ago.. so with that said.. I will tell you that YOUR CA125 is a lousy indicator... At stage IV my CA 125 was only 379... but it did go down to 6.0.  If your CA 125 was only 6.8 at diagnosis NO your not a good candidate for using that as a tool... There is no wishy washy about it... You were in normal range... yet you had cancer.

From my oncologist and my brother who is a chemo nurse and from one of my text books.. ah granted they are old... if cancer returns within 9 to 12 months of completion of a chemo regime that chemo did not nor will not work... my friend you are platnium resistant. Carbo will not work for you and you can tell your nurse to look it up...

Teresa. I am 15 months since my last carbo taxol treatment and am still doing okay.. that means I could use it again and even then no guarantee it would work again..No offense intended to the nurse but evidentally she is not a certified chemotherapy nurse...

If she was she would KNOW and you are being logical..

There are other treatments that can and do work.. I just met a gal.. here in Vegas that is 5 years and 4 months since diagnosis but the carbo never worked... she used doxil and then avastin.. she is now 1 years since any treatment.. her tumors returned 4 months after carbo...
I am sorry you feel lousy... Sending you hugs love and my strong encouragement.  Your friend and fellow wallower.. Ronni