Checking on tests

Susan53

I have a question somewhere I heard about a test that was like HE-something. Someone suggested that I check with my doctor since I can't use the CA-125 test as a marker. Does anyone know anything about that test.?

JoanC

HE 4 blood test
Hi,
The test is called a HE4 and you can Google HE 4 blood test. Not all labs have the equipment and some Dr.'s have never heard of it. I had to tell my Dr. about it.
~Joan

Susan53

JoanC said:

HE 4 blood test
Hi,
The test is called a HE4 and you can Google HE 4 blood test. Not all labs have the equipment and some Dr.'s have never heard of it. I had to tell my Dr. about it.
~Joan

Thanks Joan
Thanks Joan I will google it and check it out. Do you know anyone who has used this test. Sharon

Tethys41

Susan53 said:

Thanks Joan
Thanks Joan I will google it and check it out. Do you know anyone who has used this test. Sharon

HE4
Sharon,
I've used this test. When used in conjunction with the CA-125, it is supposed to show an upward trend prior to the CA-125 increasing, if that is going to happen. It's trend should also be accurate in the absence of the CA-125. Since we started monitoring mine, it has always been below 50 (49 down to 37). The normal range is 0-150, but my naturopath, who is always conservative, feels normal should always be below 50. I know a woman who has been monitored with both CA-125 and HE4. She said the HE4 was not accurate because her CA-125 was inching up, but her HE4 was in the normal range and stable. Her CA-125 has stabilized at one point above normal. Based on her stable HE4, her CA-125 should not continue to rise.

Susan53

Tethys41 said:

HE4
Sharon,
I've used this test. When used in conjunction with the CA-125, it is supposed to show an upward trend prior to the CA-125 increasing, if that is going to happen. It's trend should also be accurate in the absence of the CA-125. Since we started monitoring mine, it has always been below 50 (49 down to 37). The normal range is 0-150, but my naturopath, who is always conservative, feels normal should always be below 50. I know a woman who has been monitored with both CA-125 and HE4. She said the HE4 was not accurate because her CA-125 was inching up, but her HE4 was in the normal range and stable. Her CA-125 has stabilized at one point above normal. Based on her stable HE4, her CA-125 should not continue to rise.

HE4
The HE4 test is usually done along with the CA125 correct. I can't use the CA125 test so the HE4 probably would not be very reliable either. Does that sound right?

Tethys41

Susan53 said:

HE4
The HE4 test is usually done along with the CA125 correct. I can't use the CA125 test so the HE4 probably would not be very reliable either. Does that sound right?

HE4
It is a separate test and should have results that can stand alone. I don't know that for sure, but based on the science behind it, the HE4 results will show trends regardless of what the CA-125 is showing. The CA-125 is a measure of inflammation, whereas the HE4 is a measure of a specific protien that increases with ovarian cancer tumor activity. I believe I have read that it can be used for patients who don't have an accurate CA-125 marker.

Susan53

Tethys41 said:

HE4
It is a separate test and should have results that can stand alone. I don't know that for sure, but based on the science behind it, the HE4 results will show trends regardless of what the CA-125 is showing. The CA-125 is a measure of inflammation, whereas the HE4 is a measure of a specific protien that increases with ovarian cancer tumor activity. I believe I have read that it can be used for patients who don't have an accurate CA-125 marker.

Thanks Tethys41
Thanks for your information Tethys41. Any information is always appreciated. Sharon

froggy1

He4
I just had my first one drawn last month. along with the CA125. The CA125 is not an accurate marker for me(At one point the CA125 was 16 and I had significant cancer activity)
My Doc didn't hesitate when I asked him about it, kind of like he was willing to try anything. My initial reading was 45(the scale goes up to 150 for normal) and my CA125 was 10.
This was in conjunction with a pet scan that showed "all clear."
I will get another set of the two in November and will be anxious to see what the results are. It is very hard when your CA125 is "normal" and you have cancer activity.
A lot of women go by the "anything under 35 rule," which has proven wrong for a lot of us:(

Susan53

froggy1 said:

He4
I just had my first one drawn last month. along with the CA125. The CA125 is not an accurate marker for me(At one point the CA125 was 16 and I had significant cancer activity)
My Doc didn't hesitate when I asked him about it, kind of like he was willing to try anything. My initial reading was 45(the scale goes up to 150 for normal) and my CA125 was 10.
This was in conjunction with a pet scan that showed "all clear."
I will get another set of the two in November and will be anxious to see what the results are. It is very hard when your CA125 is "normal" and you have cancer activity.
A lot of women go by the "anything under 35 rule," which has proven wrong for a lot of us:(

Froggy
So your doctor was receptive to trying the HE4 test. My doctor said he didn't think that other tests would make much difference. He said a lot of insurances probably would not pay for them and that it would get costly. I am going to see if my sister in law will try to help me research the test. I just feel that I would like something to help me monitor for cancer than just me. Thanks for you reply Froggy Sharon

froggy1

Susan53 said:

Froggy
So your doctor was receptive to trying the HE4 test. My doctor said he didn't think that other tests would make much difference. He said a lot of insurances probably would not pay for them and that it would get costly. I am going to see if my sister in law will try to help me research the test. I just feel that I would like something to help me monitor for cancer than just me. Thanks for you reply Froggy Sharon

He4
Sharon,
My Doc really didn't flinch. I think he is willing to give it a try, as the CA125 isn't very good for me. I think he assumed my insurance would pay for it, we shall see. The lab tech says she hadn't drawn too many of them.(I don't have Medicare yet, have private insurance.) This ovarian cancer beast is so fickle that the docs don't seems to agree on a lot of issues. The one that gets me is the theory that you don't treat the cancer until you are symptamatic. What the heck does that mean? LOL

Mwee

froggy1 said:

He4
Sharon,
My Doc really didn't flinch. I think he is willing to give it a try, as the CA125 isn't very good for me. I think he assumed my insurance would pay for it, we shall see. The lab tech says she hadn't drawn too many of them.(I don't have Medicare yet, have private insurance.) This ovarian cancer beast is so fickle that the docs don't seems to agree on a lot of issues. The one that gets me is the theory that you don't treat the cancer until you are symptamatic. What the heck does that mean? LOL

Froggy and Sharon
My ONC also talks about not treating till you are symtamatic and yet I'm also told that we all have to be our own health advocates AND that the symptoms of OVCA are so vague that even female GYNs and ONCs have a hard time diagnosing themselves......LOL is right/ I'm so confused.
(((HUGS))) Maria

Tethys41

Mwee said:

Froggy and Sharon
My ONC also talks about not treating till you are symtamatic and yet I'm also told that we all have to be our own health advocates AND that the symptoms of OVCA are so vague that even female GYNs and ONCs have a hard time diagnosing themselves......LOL is right/ I'm so confused.
(((HUGS))) Maria

I'm with ya
My gyn/onc tells me that treating only when symptomatic is his protocol. But prior to being diagnosed, the only symptom I had was occasional pain in my abdomen, no ascites, no swelling, no constipation, no feeling of fullness. Yet, things were pretty serious by the time they figured out what was up, and I had a CA-125 of 4,600. So, I think I'd be watching my CA-125 pretty closely if I thought something was going on.

carolenk

froggy1 said:

He4
Sharon,
My Doc really didn't flinch. I think he is willing to give it a try, as the CA125 isn't very good for me. I think he assumed my insurance would pay for it, we shall see. The lab tech says she hadn't drawn too many of them.(I don't have Medicare yet, have private insurance.) This ovarian cancer beast is so fickle that the docs don't seems to agree on a lot of issues. The one that gets me is the theory that you don't treat the cancer until you are symptamatic. What the heck does that mean? LOL

Explanation of research results
Dear froggy1

RE: Treating symptoms rather than treating the CA-125

The research you are referring to is more than a theory--it has to do with recurrent ovarian cancer--not the initial diagnosis. The research was done in the UK and the ovarian cancer survivors in remission were not told what their CA-125 level was as they were being followed. The study was looking at quality of life and outcomes after chemo for recurrent OVCA.

The end result was that the the outcome for women who waited until they were symptomatic (bloating, pain or obvious tumor symptoms) WAS NO WORSE than the women who jumped back into chemo as soon as their CA-125 hit 70. The symptomatic groups had chemo delayed for about 4-6 months and they scored higher on the quality of life questionnaire--they were NOT told what their numbers were. I think the study went on for two years. At the end of the study, there were two women who had high CA-125 levels but were not symptomatic.

Now, many (if not all) of the UK ovarian cancer survivors are being treated based on the new evidence from this research--yet there are oncologists in the US who seem reluctant to embrace the new recommendations. The difference here is that US survivors want to know their numbers--so the quality of life goes downhill as the CA-125 goes up (and anxiety goes up with it).

Just imagine getting an additional six months of a break from chemo! I've been on a chemo holiday myself for the past six months (never been in remission--just told that my cancer was inactive after treatments). The oncologist predicted that I would need to be back in chemo in the fall. My CA-125 is high again and I am not symptomatic--maybe because I am taking the high-dose IV vitamin C treatments regularly.

I think the bottom line with ovarian cancer is: Early detection and optimal debulking is the key to survival. After that, the treatment is so inadequate that it doesn't matter whether or not chemo is re-initiated sooner or later. I don't think chemo is the final answer--but we are years away from where we need to be with immunity-enhancing treatments.

I have some decisions to make but I want to check my CA-125 again before I do anything.

Carolen

carolyn45

carolenk said:

Explanation of research results
Dear froggy1

RE: Treating symptoms rather than treating the CA-125

The research you are referring to is more than a theory--it has to do with recurrent ovarian cancer--not the initial diagnosis. The research was done in the UK and the ovarian cancer survivors in remission were not told what their CA-125 level was as they were being followed. The study was looking at quality of life and outcomes after chemo for recurrent OVCA.

The end result was that the the outcome for women who waited until they were symptomatic (bloating, pain or obvious tumor symptoms) WAS NO WORSE than the women who jumped back into chemo as soon as their CA-125 hit 70. The symptomatic groups had chemo delayed for about 4-6 months and they scored higher on the quality of life questionnaire--they were NOT told what their numbers were. I think the study went on for two years. At the end of the study, there were two women who had high CA-125 levels but were not symptomatic.

Now, many (if not all) of the UK ovarian cancer survivors are being treated based on the new evidence from this research--yet there are oncologists in the US who seem reluctant to embrace the new recommendations. The difference here is that US survivors want to know their numbers--so the quality of life goes downhill as the CA-125 goes up (and anxiety goes up with it).

Just imagine getting an additional six months of a break from chemo! I've been on a chemo holiday myself for the past six months (never been in remission--just told that my cancer was inactive after treatments). The oncologist predicted that I would need to be back in chemo in the fall. My CA-125 is high again and I am not symptomatic--maybe because I am taking the high-dose IV vitamin C treatments regularly.

I think the bottom line with ovarian cancer is: Early detection and optimal debulking is the key to survival. After that, the treatment is so inadequate that it doesn't matter whether or not chemo is re-initiated sooner or later. I don't think chemo is the final answer--but we are years away from where we need to be with immunity-enhancing treatments.

I have some decisions to make but I want to check my CA-125 again before I do anything.

Carolen

Thank you!
Carolen, I always love reading your responses and explanations of complicated issues. This is really important--that waiting to do chemo after a recurrence is not only reasonable but an extremely good choice. I'm 2 1/2 months post chemo, and I'm dreading the CA-125 in October, although I have no signs of a recurrence at ALL. Maybe it's best to back off from the test?

carolenk

carolyn45 said:

Thank you!
Carolen, I always love reading your responses and explanations of complicated issues. This is really important--that waiting to do chemo after a recurrence is not only reasonable but an extremely good choice. I'm 2 1/2 months post chemo, and I'm dreading the CA-125 in October, although I have no signs of a recurrence at ALL. Maybe it's best to back off from the test?

My integrative doctor still
My integrative doctor still wants the CA-125 done to know if I should add more to my program even if it isn't chemo. Get that test done anyway--you'll be wondering how your number is anyway.

Good chance your number is good & you'll feel better knowing that. I take low-dose naltrexone at night & I think it helps me to be LESS anxious. With a high CA-125, it is challenging to be calm about my situation.

AnneBehymer

carolenk said:

My integrative doctor still
My integrative doctor still wants the CA-125 done to know if I should add more to my program even if it isn't chemo. Get that test done anyway--you'll be wondering how your number is anyway.

Good chance your number is good & you'll feel better knowing that. I take low-dose naltrexone at night & I think it helps me to be LESS anxious. With a high CA-125, it is challenging to be calm about my situation.

living by number
I think once you have been told you have cancer we live by the ca-125 good or bab it becomes our life. Is our number to high, is it climbing up, and is the cancer comeing back. We will always wonder and be anxious about that number I feel until the day we go home to see our father. Look into cancouling to help cope with the fear that has come from cancer I think that is the only way we will be able to fight this once and for all. Looking forward to a day without the fear and looking for a day their is a cure so no one else has to face what we have faced.

Anne