CA 27-29

MiaNC · Regular Joined: 20 Apr 2005 Posts: 30 Location: Georgia

I am 49 y/o and have Stage IIA breast Ca diagnosed 12/04 with a routine yearly mammogram. Had bilat mastectomies 1/05. Results: 1 cm, E+, P+, 2 sentinel nodes +, 22 axillary nodes negative, HER/neu negative. Started dose-dense cehmo with A/C 1/26. On second dose had fever and cellulitis around expander, so was cancelled, hospitalized anf given antibiotics, all cultures negative. Had 2nd dose and it was changed to FEC. I went for second opinions and was told to stick to dose dense. Well, after FEC I had to wait 21 days for the second dose-dense (which really would be the third total dose of chemo). Had 2 more A/c every two weeks with Neulasta and EPO support. Normal ECHO after A/C. Had Taxol #1 on 4/6 and was told not to do Neulasta because my WBC was 8.8 with ANC 7.9. A week after Taxol my WBC was 2.5 with ANC 1.69. Went for Taxol #2 but was postponed bec WBC was 1.0 and ANC 0.56 (monocytes 0.14). At this point I am not sure that bI ever really received dose-dense chemo and it does upset me some as it may lead to a lower response rate and cure rate.
Also, the oncologist told me that my initial CA 27-29 was in the upper levels of normal. I went to 40, then 52 and then back to 44. He repeated it today and wants to do a bone scan if it goes up again. I have been on Prozac 40 mg since the diagnosis of ca in 12/04. I also take MVI, Calcium, Bcomplex, Folic Acid (hx of colon ca in family), B6, Coumadin and Sonata.

I would appreciate some advice, opinions and suggestions as I am quite concerned.

Many thanks
Mia NC
_________________
MiaNC

Muttsmom · Posted: Wed Apr 20, 2005 7:07 pm Post subject: Re: CA 27-29

Hi,
Onco's have different opinions of CA 27-29 because of their unreliability. I never got my 1st one until I was 1 year NED (No Evidence of Disease) and he did them every 3 months at my check ups for 1 year to see what was "normal" for me. The last one I had was in Oct. and I won't have another one now until Oct. A friend of mine had the CA27-29 done prior to her biopsy and it was in the normal range, but she had a 9cm tumor and 11 positive nodes. Some oncos never do tumor markers and some put a lot of faith in them. Mine checked them again to see what was normal for me once I was done with treatment and NED, but if I have pain somewhere that doesn't go away, even if my tumor markers are normal, he's going to trust what my body is saying over them. On the other hand, if my tumor markers start going up and continue to go up, he'll start running scans to see if anything is going on. My onco also did a CT Scan of the chest, chest x-ray and bone scan before I started treatment to see if it had spread to any place else, and of course mega bloodwork. Did you have a bone scan prior to starting chemo?

I was given FEC for 6 treatments and I'm 3 years out and as you can tell by my bio, I was Stage III. I go to a cancer institute where all the oncos get together and discuss all the new patients and decide what treatment they feel will work best on the individual person and the kind of BC they have.

This whole disease is very confusing to say the least. I had labs done 2 weeks after chemo to see if my white count was rebounding because they expect it to bottom out, but want to make sure they can rebound on their own, if not, there are shots they give, like you took to boost the white count. I then got labs again before my next chemo to make sure my counts were back to where they should be. I never had to take any shots because mine bottomed out, but not lower then expected and then came back up on their own. Some ladies have to get the shots with every treatment. Some oncos give the shots whether you need them or not. Mine only gave them if needed.

I don't know if I helped you at all, but a lot of this is what the onco feels will work best for you. If you have doubts or don't feel 100% confident that you're getting the best care possible, I would get a 2nd opinion. You really do have to be your own advocate when it comes to this disease and your health. It's your life and usually what your gut says, I would go with.

I was told my mammogram was normal, no signs of cancer and my ultra sound showed B9 cysts. I had no idea that they couldn't tell if something was B9 or not without a biopsy. I knew I felt a lump/mass and my gut said something wasn't right. I went with my gut and say a surgeon. It wasn't what I wanted to hear, but thank God I went with my gut, since I was already Stage III and only 43.

If I can help at all, please feel free to e-mail me anytime.
Take care and kick some cancer butt Smile

Nancy
_________________
Nancy
2/14/02 ILC 43 - 5.5 cm 9+/16 nodes
Stage IIIA er/pr+ Her2-
2/02 MRM
FECx6 radsx33
Tamoxifen - Arimidex (chemo induced menopause)
4/03 SM w/bilat. recon.
9/03 expanders removed
5/04 repair reconst. disaster
10/04 Actonel for bone/joint pain from Arimidex
NED - 5 years
3/07 Diabetes
In memory of Kim 12/1/04

leo · Owner Joined: 23 Sep 2004 Posts: 1574

Hello

While CA-27-29 can be used, the guidelines published by the American Society of Clinical Oncology do not recommend using it yet, since there is not enough data available to indicate that this markes is useful. As a matter of fact, there are studies showing that there were patients whose markers started to go up, by there were no metastases. This is an area where there is a lot of research effort, so that we hopefully can detect recurrence earlier and with that achieve better outcomes.

best regards,
Leo
_________________
Leonardo F - Webmaster Cancer Forums
Disclaimer: this information is for informational purposes only. It is not medical advice.

MiaNC · Regular Joined: 20 Apr 2005 Posts: 30 Location: Georgia

Thank you for the replies. The new marker was 47 and they want less than 37, so I will be getting a bone scan. I am pretty scared. He did tell me to wean myself off the Prozac because I asked him if it could be contributing to the levels. It is easier said than done because it does help me cope. I may need a different type.
No, I didn't have any bone scans or CT scans. I was puzzled but I called a friend t Memorial Sloan Kettering in New York and she told me that they also don't do them in early stages. I can't help but think about the cases discovered because of distant mets but not because of breast massses...
I will follow the recommendations and take it from there. It's all very frightening.
Thanks for the support and help
MiaNC
_________________
MiaNC

Muttsmom · Posted: Thu Apr 21, 2005 5:58 pm Post subject: Re: CA 27-29

Hi Mia,
I know easier said then done, but remember that alot of onco's don't do CA27-29 at all and alot more of them don't do them while you're getting treatment because they aren't reliable, moreso during treatment then after.
I would definately ask for something else to help you get through this. My onco put me on Paxil which helped a lot and effexor is another popular one that ladies are put on.
I've never heard of someone not getting a bone scan, CT Scan and all those prior to starting treatment so they can stage you correctly, if for no other reason, but that's another reason we all stay confused is because things are done so many different ways, depending on where you go.
If you are able to see the screen as the bone scan is being done, degenerative (sp) chances, arthritis and other things will light up on the screen, so don't panic if you see those. The radiologist will read it and he knows what to look for. The tech that did mine saw me quietly freaking out during it and told me what I saw weren't mets. They aren't suppose to do that, but my sanity was extremely grateful. Also, since you've never had one, more then likely if anything shows up like degenerative chances, the radiologist to cover his butt will say something like it doesn't appear to be mets but the only way to rule them out is a PET Scan. He has nothing to compare this one to, so he'll have to say something like that, they did on mine. I've had 2 other ones and on those the radiologist said, no signs of mets period, because he had the ones before to compare.
I really feel that you're going to be fine and it's just false readings because you're going through treatment. I know that doesn't help since it's you that's so scared, but all of us have been there so we do understand.
We're here anytime you need us. Remember, you're talking to a Stage III 5.5 cm tumor w/ 9+ nodes out of 16 and the cancer hadn't spread anywhere else prior to treatment and I'm 3+ years out with no signs of it being back Smile

Nancy
_________________
Nancy
2/14/02 ILC 43 - 5.5 cm 9+/16 nodes
Stage IIIA er/pr+ Her2-
2/02 MRM
FECx6 radsx33
Tamoxifen - Arimidex (chemo induced menopause)
4/03 SM w/bilat. recon.
9/03 expanders removed
5/04 repair reconst. disaster
10/04 Actonel for bone/joint pain from Arimidex
NED - 5 years
3/07 Diabetes
In memory of Kim 12/1/04

MiaNC · Regular Joined: 20 Apr 2005 Posts: 30 Location: Georgia

Thank you Nancy and Leo. I am devastated today because I went for Taxol #2 and my WBC was 1.2 but my ANC dropped to 0.2. Now I am on Levaquin for protection against infections.
I am also puzzled because after the first Taxol, which is not supposed to drop your white counts, I was told not to do Neulasta (my WBC was 8.8 and my ANC was 7). A week later they had plummeted to WBC 2.5 and ANC 1.7 I asked about Neupogen but they thought I would recover by myself. Well, it is obvious I didn't. Now they tell me that Neupogen is contraindicated and I have to wait til the BM recovers by itself. So, I am truly upset bec supposedly this is dose-dense and it should be given every two weeks. This is the second time I have had to go to the third week. What will this do to my chances of response and cure? I am crying as I write this. I have two small children 3 and 9...sorry
Any reassuring thoughts, besides all you have given me?
MiaNC
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MiaNC

Muttsmom · Posted: Fri Apr 22, 2005 12:10 pm Post subject: Re: CA 27-29

Hi Mia,
I'm sorry you're having such a rough time. Have you considered a 2nd opinion? We are in such an emotional roller coaster with this disease as it is, but it seems like you are being put on an extra long one.
There isn't a cure for BC, but treatments sure can make us stay with NED, which is great until a cure comes along. I honestly don't think that it will make a difference in the success rate of your treatment by having to skip a week, many do.
I'm confused as to why they are saying they can't give you the shot to boost your white count? I never had one, so I don't know a lot about them, but many ladies have to get the shots and some even get them for days prior to their next chemo or before their chemo.
It's hard enough emotionally and physically to go through this without all this added confusion. I think I'd seriously consider a 2nd opinion and see if there is someone else, outside that practice that makes me feel more at ease and more confident in your treatment.
I'm hear anytime, just an e-mail away.
Hugs
Nancy
_________________
Nancy
2/14/02 ILC 43 - 5.5 cm 9+/16 nodes
Stage IIIA er/pr+ Her2-
2/02 MRM
FECx6 radsx33
Tamoxifen - Arimidex (chemo induced menopause)
4/03 SM w/bilat. recon.
9/03 expanders removed
5/04 repair reconst. disaster
10/04 Actonel for bone/joint pain from Arimidex
NED - 5 years
3/07 Diabetes
In memory of Kim 12/1/04

MiaNC · Regular Joined: 20 Apr 2005 Posts: 30 Location: Georgia

I really, trully appreciate your help because I don't know where to turn. I am angry and upset because I had the silly Neulasta shot in my refrigerator two weeks ago and believed them when they said that most patients (over 80%) don't need it. But a week later my counts were much lower, red flag as far as I am concerned. And now there is nothing we can do. I accepted the dose dense convinced that everything would be done to preserve the every two week treatments. I have two small children and I will do whatever it takes to be alive, no matter what the effects, fatigue, bone pain I don't care. They wanted to save me from more bone pain and from another shot. But I am not sure this is what Memorial Sloan Kettering had in mind with dose-dense. They are pretty aggressive.
I am seriously thinking of changing doctors but I wanted to dothis after the chemo and not make hasty decisions during it. Nothing I can do about this episode now.
What do you think?
MiaNC
_________________
MiaNC

Muttsmom · Posted: Fri Apr 22, 2005 2:38 pm Post subject: Re: CA 27-29

You can always get a 2nd opinion without leaving the onco you are with now. I'd check and see who other people used regardless of what kind of cancer they may have had and get a referral that way. Word of mouth is usually the best way to go. If you can't find anyone, look and see who else in your area has oncologists and make an appt. You can have a copy of all your records faxed over there and no doctor should have a problem with you getting a second opinion. If they do, then that to me would be a red flag. You have to be an advocate in your own health care and like me and most of us, you'll do whatever it takes to give you the best possible chance of never having to deal with this beast again. Just my opinion but as upset as you are, I don't think you will rest until you get a 2nd opinioin and that is definately your decision. I have no doubt if I wasn't completely satisfied in the care and treatment I was getting, I would have gotten a 2nd opinion. Friends referred me to my onco, plus I had heard a lot about him, and it was all good and in a city this big, that made me feel good. Him being head of oncology at the cancer institute made me feel good too. I always felt that he had my best interest and he was determined for me to be a survivor. I know there are no guarentees and never were, but if mine comes back, I know it's not because of anything he did or didn't do and that to me is the way everyone should feel about someone who's treating them for something as serious as cancer.
Hugs and prayers and keep me posted.
Nancy
_________________
Nancy
2/14/02 ILC 43 - 5.5 cm 9+/16 nodes
Stage IIIA er/pr+ Her2-
2/02 MRM
FECx6 radsx33
Tamoxifen - Arimidex (chemo induced menopause)
4/03 SM w/bilat. recon.
9/03 expanders removed
5/04 repair reconst. disaster
10/04 Actonel for bone/joint pain from Arimidex
NED - 5 years
3/07 Diabetes
In memory of Kim 12/1/04

DiO · Posted: Fri Apr 22, 2005 6:31 pm Post subject: Re: CA 27-29

I also feel that a second opinion sounds like the best option for you. I had dose dense chemo a year ago, and my onc said from the start that in order to do dose dense you need the Neulasta shot the day after chemo to bring your counts back up in time for the next treatment. Mine did bottom out in the 1-1.5 range, but were always back up by the second week for the treatment. I was surprised to hear that some people get through dose dense on their own without the boosters. Also don't understand why your dr says it's too late now to start with the boosters. It's clear you need some more definitive answers to your questions, and if your present dr won't give them to your satisfaction, seeing someone else is your right. Good luck!
_________________
God Bless, Di

IDC 12/03 at age 55
lumpectomy, SNB 12/18/03
2cm tumor, 1/6+node, stage 2, grade 2 er/pr+ her2nu-
4 AC, 4 taxol, dose dense
33 rads
Arimidex started 7/04

MiaNC · Regular Joined: 20 Apr 2005 Posts: 30 Location: Georgia

I really do believe that they made a mistake two weeks ago telling me that I did not need the Neulasta. But there is not much I can do now. The second Taxol will have to be done this week if the counts recover. I think that they thought I could do without it but very clearly I am very sensitive to the Taxol. I must admit that I was tempted to just give it to myself the day after but decided that I could not be second guessing everything they did. Should have listened to my gut.

Initially I did go for a second opinion (and loved that woman doc) she recommended to stick to the dose dense and told me that my prognosis was pretty good. I am not sure anyone can do anything right now with my counts. My only worry is that I don't think I really got dose-dense, and what are my chances? Do patients on dose dense skip treatments because of other issues not only counts and still respond well. I guess we don't really know.

I truly enjoy this forum to chat with other women like me. I have no friends with breast ca, can you believe this?

Fondly
MiaNC
_________________
MiaNC

Muttsmom · Posted: Sat Apr 23, 2005 9:12 am Post subject: Re: CA 27-29

Hi Mia,
Have you thought about going to the female onco that you really liked? Even though it's the same chemo, the treatment emotionally could be so much better for you. She might keep up more with the shots for your counts and you would feel like you were being cared for better. Of course it's your decision, but being comfortable and having confidence in your onco is so important. There is enough stress involved in this damn disease without being stressed out over not getting shots and feeling like you aren't getting the best care possible. You deserve nothing but the VERY BEST care you can find.
I've heard of quite a few ladies that had to miss treatments because of their counts and still do well. I'm sure they would rather you stay on the every 2 weeks, but that is out of your control, you're doing all you can. I just think your stress level is higher then it has to be. Again, the decision is yours, but I put my 2 cents in.
Best of luck and talk to you soon
hugs
Nancy
_________________
Nancy
2/14/02 ILC 43 - 5.5 cm 9+/16 nodes
Stage IIIA er/pr+ Her2-
2/02 MRM
FECx6 radsx33
Tamoxifen - Arimidex (chemo induced menopause)
4/03 SM w/bilat. recon.
9/03 expanders removed
5/04 repair reconst. disaster
10/04 Actonel for bone/joint pain from Arimidex
NED - 5 years
3/07 Diabetes
In memory of Kim 12/1/04

Marion · Experienced user Joined: 28 Nov 2004 Posts: 60

Hi, Mia: For what it's worth. I did for A/C in the fall with Neulasta and now I'm doing 4 treatments of Taxotere (2 down, 2 to go) and I get the Neulasta shot with each treatment. My WBC has never been able to recover on its own to be able to stay on dose dense so I get the Neulasta shot immediately following the chemo treatment. It has kept my WBC stable and able to continue on with treatments. I would suggest as the others, get a second opinion. The last thing you need is to be spending your energy 2nd guessing your onc. I certainly am not an expert but I'm not sure I understand why you can't start doing the Neulasta shot now. Just because your WBC was down earlier that would seem to me to be the reason why you need to start the Neulasta shot again. That would be a question I would definately ask. No matter what, you need peace of mind for yourself and family so you keep your energy for fighting this battle and being there for your kids.

Marion
_________________
Age: 48
Dx 10/14/04
lumpectomy 10/26
1.6 cm
Stage IIA
SN biopsy 10/29
1/14 nodes +
4 A/C
30 Rads
Taxotere complete
Tamoxifen for 5 years

AlaskaAngel · Posted: Sat Apr 23, 2005 3:42 pm Post subject: Chemos

I'd want to give your onc the opportunity to explain the basis to you for not wanting you to use the drug at that time in your particular circumstances. If you can't get a reasonable explanation, or if you still think it damaged your chances, then you might feel more comfortable finding someone else to take over.

I think sometimes trying to achieve the most perfect treatment available can distort our perspective a little. I went through chemo in 2002, not very long ago at all. I had the standard chemo recommended for my situation, CAF x 6 (at that time, no taxanes and no dose-dense), even though chemotherapy scares me more than cancer does. My counts were always dragging bottom but I refused anything like Neupogen or Neulasta. So I ended up having chemo every FOUR weeks for almost 6 months... In hindsight that probably wasn't the brightest decision I ever made. Our stages are probably not all that far apart (ER+, PR+, HER2+++, Stage 1 almost falling off into Stage 2). I'm NED.

You are doing the best you can to stay on top of it. Do what makes the most sense to you, keep asking questions when things don't make sense, and if you don't get answers, move on.

A.A.
_________________
Dx Dec 2001 at age 50
Lumpectomy Jan 2002, 1.6 cm IDC plus some DCIS
Node neg
ER+, PR+, HER2+++
CAF x 6, 35 rads+boost
NED
Tamoxfen 1 3/4 yrs
In 2 clinical trials
bc for mom and 1 sis and 1 aunt and 1 granny
ovarian cancer for 1 aunt

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