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And The New Number Is...... And The New Number Is......

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  #1  
Unread 06-18-2003, 11:50 AM
And The New Number Is......

Well... it is lower but not enough for me. Todays new number came in at 25. Last week it was 34.

Someone from the hospital called to give me the number so, of course, I immediately called my oncologist to see what she thinks and I am waiting, again, for her to call me back.

I also want to know from her about this ca125 II. I did ask her secretary and she had no idea.

It just gets me mad that in February the number was 12. If my cat scan was normal, then why the rise in the number?????

Will post later when I know more. Thanks to everyone for caring.

Rosalie
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  #2  
Unread 06-18-2003, 12:05 PM
And The New Number Is......

Maybe it is still those mushrooms left over. I am sure that if they are the culpret at causing your ca125 to raise, it may take a while for the ca125 to lower back down.

Or maybe she used the ca125II test, which caused it to be higher, but I think that if they did that they sould have done both...as to compare the results, and not to get you in a tizzy.

Best of luck, and lets hope that it was the mushrooms or changing the tests. Fingers crossed.

God Bless and Keep you
  #3  
Unread 06-18-2003, 01:01 PM
And The New Number Is......

Dear Rosalie,

I did a lot of research on recurrence and rising CA125 numbers yesterday. I don't know whether the following is helpful or not, but I thought I'd post it. It's a very lengthy interview with a gyn/onc on the subject of recurrence. The doctor does note that sometimes a CA125 rises without any evidence of disease on a CT scan, so I thought that was of interest. It's a super long interview, but each question/answer is linked at the top. There are two sections.

I truly hope that the rise and fall of your CA125 means nothing and that no further treatment is required. I am always thinking about you (and everyone on this board, truth be told).

I haven't been able to find anything on whether mushrooms (of the three major kinds -- reishi, maitake and ****ake) would affect someone's CA125. I have a call in to my chemo doctor (for other reasons), though, and will certainly ask him when he calls.

http://ovariancancer.jhmi.edu/recurrentqa.cfm

s!
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  #4  
Unread 06-18-2003, 01:16 PM
And The New Number Is......

Jane...LOL you and my husband think alike...
He said the exact same thing. Actually I stopped taking the mushrooms last Wednesday after I got the first set of results.

MY doctor did not get back to me yet but the major oncology nurse did. Siren, she said the same thing you did. That ca125 number is not a written in stone number. It can fluctuate for no apparent reason and being that the cat scan was normal, that was a good sign.

I also told the nurse about the ca125 II test and she did not know anything about it. She was very interested in it thought and is going to run all this past the doctor. said someone will get back to me tomorrow.

So here I sit... not as panicky as last week. My active life will continue to go on.

Rosalie
  #5  
Unread 06-18-2003, 01:22 PM
And The New Number Is......

Rosalie, so glad to hear about the lower number! My immediate reaction was that the mushrooms had an impact. It seems to bear out in the new result. I think the key here, though, are the results of the cat scan which are very positive.
  #6  
Unread 06-18-2003, 02:05 PM
And The New Number Is......

Thanks Maureen...

do you have an instant message name for me??? Been looking for you on line

Rosalie
  #7  
Unread 06-18-2003, 02:44 PM
And The New Number Is......

Rosalie- So glad that your CA125 number is down and you are feeling better. I think we all understand the sudden panic any test can give us. Have a great summer.

Ruth S
  #8  
Unread 06-18-2003, 03:42 PM
And The New Number Is......

Very glad to hear that the # is going back down and that the nurse islooking into your questions. I hope you get some more info when the Dr. calls.
  #9  
Unread 06-18-2003, 04:48 PM
And The New Number Is......

Hello again everyone....

my oncologist just called me, I kinda knew she would, and was glad that the number came down. I am going to have it done again next week and see if it comes down any more.

We both agreed to stay off the mushroom complex until after the next blood test to see what happens. She said that not long ago she had a woman whose number had gone up over 40 for no apparent reason. (The womans number was low) They then put heads together and realized that this woman was taking lots of over the counter herbs and things like that. When she stopped the stuff, the number went back down. Amazing!!

I also asked my oncologist about the ca125 II and she know nothing about it and I believe her. Each oncologist, in the hospital where I go, specializes in certain areas. Her are is ovarian cancer and she is very very on top of everything be it old or new!!

So... have a nice night.

Rosalie
  #10  
Unread 06-18-2003, 05:58 PM
And The New Number Is......

That is so weird. Thanks for letting us know her experience! I'm only taking a few things, but in light of what your doctor said, now I'm going to have to watch things very closely. I will ask my chemo doctor if he's seen anything like that. Thanks, and I'm so glad that the number is going down!
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