Tumor Markers & Update

vlcarr · 01-09-2010, 09:35 AM

I had my 5th chemo this past Thursday. I must say the 4th one was the easiest one on me so far. No bad stomach pain and no mouth sores. I told my onc that I worried I didn't get my chemo. My hair is also growing--even the dreaded chin ones! The only difference was a script for Marinol she gave me after my 4th treatment. At the first sign of stomach pain I would take one but didn't have to take that many.

I got a script for muscle spasms this time as a new side effect seems to be leg and joint pain.

I talked to my onc about what happens after treatment and I've read some post from you guys about that as well. I have my last chemo on 01/28, wait a month and then have radiation for 6 1/2 weeks and continue herceptin until June.

I asked about follow up care and basically she said they don't do tumor markers or scans. I will see here every 4 to 6 months and if I have any persistent pain that would be checked out further. She said tumor makers are not reliable and they don't use those as a sign of recurrence.

My questions for you guys are:

1. Did you get tumor marker tests to check for recurrence?
2. If so, is that a standard or did you fight to get them?
3. Did the test find new cancer or cause you get treatment?
4. What type of tumor marker tests did you get and at what point did the results cause you to get more scans, etc and was anything found?

I guess I'm trying to find out many of you caught a recurrence using these tests.

I would also like to know where you were/are being treated as well.

This is all to new to me so I researched the internet and searched for posts here but found conflicting information on the validity of these tests and didn't fully understand which ones to get. I doubt I will get them based on what my onc said but would like to know if you get them and have they helped.

Thanks so much for sharing your experiences.

vlcarr · 01-09-2010, 09:36 AM

Forgot to mention that I will not take any other drugs since I'm hormone negative.

mmoons · 01-09-2010, 11:55 AM

Hi Vicky-

Congrats on your progress and your results!!! I was in a Tykerb trial also and had miraculous results, even as early as 2 weeks into my treatments.

My oncologist in Dallas sounds like yours. She did do a baseline tumor markers because I asked for it. But she is a firm believer in no follow up test, scans, anything. She just wants to know about any pain that lasts more than 2 weeks.

I am now in Michigan (moved to be closer to family) and my new oncologist is a proponent of scans and tests.

Funny, when I was in Dallas I was so worried and wanted all the scans/tests. Now that I am here I am worried about all the radiation, etc of the scans/tests. I guess my neurosis is showing!! lol

Sending you loving support as you finish your treatments. Hoping you feel better every day!

Maureen

Becky · 01-09-2010, 02:10 PM

My onc did baseline everything and scans at one year out. I could have had scans every six months after the one yr but said no. I get the CA 27/29 tumor marker blood test everytime I go (which is every six months now but had been more often when I began the journey).

35% of people the tumor markers are unreliable (meaning they don't change and are in the normal range yet they have active mets) but for the rest, they are reliable. It might be something to fight for but don't hang your hat on it or freak if they are 14 one time and 27 the next (range is 0-38) as that can just happen (and happens to me often).

Chelee · 01-09-2010, 04:45 PM

Hi Vicky, First I have to tell you that I had the "same" experience you had with the TCH. It was either the 4th or 5th infusion of TCH and I didn't feel like I had my chemo either. Your the first one I've heard say that besides me. I even called my chemo nurse to ask if she forgot to give me my Taxotere or something...that I felt like I had no chemo this time? She assured me I got everything & said to enjoy myself. lol (So strange, I thought I was the only one.)

As far as scans go I was given a baseline once I was staged after surgery. I had a PET/CT and brain MRI. After I completed trt I was scanned again. Any time I complained of a symptoms I got scanned. I've only been turned down once so far.

As to tumor markers (CA27.29) that is something they did from day one. Had a baseline TMs....and have continued to have them about every 3 months. For me personally they are very reliable. The entire 3.5 yrs I was NED they stayed between 15 & 18...never moved. Then they slowly over a yrs time inched up & that's when I made my onc run a PET/CT and found my recent recurrence. (So I credit my TM'ers 100% for us finding out I'd recurred.) We will continue to run my markers. Alot of onc's are totally against running them as they aren't reliable for everyone. Tumor markers are really just one piece of the puzzle they can look at with everything else to see what's going on.

As to your actually question "no" I did not have to fight for them...this was their choice/protocol. Maybe because I was already stage IIIA, 3.5 cm mass, Her2/neu, 3+++, 5 pos nodes. That might of played a big part in their decision to run markers? (Just quessing?) And no, I do not believe TM'ers or scans are standard of care. Most onc's these days believe in waiting for symptoms. But without my TM'ers I would not of known about my recurrence. So I'm all for running them...but let me say again...they do not work for everyone.

Chelee

adrien · 01-09-2010, 05:47 PM

Hi,
I have to say that yes, my first recurrance was noticed through a consistent rise in the markers CA 15.3 and the CEA. It's the direction they're going which is important, not the number but make sure you have at least 2 tests to see if there any variables as previously suggested.
Beset wishes,
Adrien

Jackie07 · 01-09-2010, 06:48 PM

Vicky,

My oncologist wouldn't test my tumor marker, either. I think it has something to do with the tumor size and stage, plus it is not 'reliable' on everybody. My recurrence was 2+ cm and with 2 lymph nodes affected. Since all tests/scans have their drawbacks/human errors, I wouldn't rely too much on those 'numbers'.

hutchibk · 01-10-2010, 01:28 AM

I have been a mets patient for almost 5 years... my onc follows my TMs (CA15.3) and mine are very sensitive and indicative of recurrences. Every single one of my recurrences (5 recurrences) has been found at it's earliest by rising TMs. Mine are checked every 3 weeks, as I get Herceptin every 3 weeks. If mine rise incrementally over 3 separate labs (9 weeks) then he sends me in for PET and brain MRI. We don't depend on them as the be all end all, and we know that at any time they could stop working for us, but I feel very lucky that they are such a big help in our being able to monitor any activity and catch it at its earliest.

vlcarr · 01-10-2010, 02:46 PM

Whew--how confusing. Thank you all for sharing. It's strange how it works for some and not others.

The place I go is a very reputable teaching hospital and I do really like all the doctors I have there.

I think this is on my mind because I'm nearing the end of dealing with life after cancer-my new normal.

I will continue to look into this but thank you all so much for your responses.

I'm feeling kinda puny today.

Chelee, I hope I feel the same these last 2 treatments. It was so nice not to have the issues with TCH after #4--I was like, oh, this must be how some people are able to work during chemo. Well, not me, I haven't worked since September.

Thank you all.

Chelee · 01-10-2010, 09:56 PM

Vicky, Since TMs aren't always reliable many times onc's know it just causes "some" patients too much anxiety. For me personally I rather know asap when I recur. I had recurrence in several places and had no symptoms. So when these onc's say to 'wait" for symptoms...what if the person never has any?

If you are considering having them done even though they say they don't run them there. You could always ask/push for them now and blame it on us. Tell them all your Her2 sisters get them done. lol (I'm kidding!)

But seriously...if this is a tool you would like to use I would get a baseline TM ran some time after you finish chemo. But wait a short while because TM's will some times jump up around the end up chemo. So you would want to wait till your finished up with that.

I checked my journal & it was my 4th infusion of TCH that I felt like I didn't get anything. What a trip. But my 5th & 6th wasn't horrible...but it wasn't like the 4th. (Darn it.) I could tell I had chemo...sorry to disappoint you. But hey...maybe you will get lucky and yours will be the same as your fourth one. Good luck to you Vicky. Congratulations on being almost finished. Yeah.

Chelee

Jackie07 · 01-10-2010, 10:32 PM

Vicky,

Please stay diligent. My so-called 'recurrenc' grew out of the left-over tumor and showed on the follow-up mammagram 'all the time'. But everyone was too confident on the surgeon's skills to figure out that the 'shadow' was not 'scar tissue' - for 4 years straight.

You are the best person to know how you are feeling. My experience is, if you are not feeling well, get it checked out. Don't worry about being called hypochondriac. We have earned our rights...

vlcarr · 01-11-2010, 01:55 PM

Thank you Chelee and Jackie,

You advice is great. I'm getting an informal 2nd opinion on this issue.

Chelee, this time is not like the last

I have not been feeling very well since chemo this time. And, the little bit of hair that grew back after #4 is gone plus more.

I keep saying just one more, just one more.....

Thank you all for being with me on this journey. I don't know what I would do without you all!

Linda · 01-11-2010, 06:06 PM

Hi Vicki:
I was stage 3a, hormone neg and am almost 5 years out (!). No recurrence.
My onc has done tumor markers all along, as well as Vit D level and a physical exam.
After treatment, I started with checks every six weeks and have gradually gone to every 6 mos.
Because I was high risk, my onc insisted on routine scans immediately after finishing treatment. Twice I had false positives (I have radiation scarring on my lung) which almost led to unneeded biopsies. I finally said "no more scans without symptoms." We've stuck to that and I am very comfortable with that decision.
Because I had a lumpectomy, I still have mammos/MRI's twice a year, which I also think is very appropriate.
It's different for everyone. You have to strike a balance between cautious, safe follow up and moving on.
Good luck
Linda