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Old 03-16-2009, 05:20 PM   #1
Barbara2
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Results from tests after doubled tumor markers

A brief review for newbie’s: Diagnosed Oct 02; 6 years of tumor markers staying within a range of about 6 numbers, then (using the CA27.29 marker with a range of 0-37.8 and checking every 3 months) my numbers jumped from 23.1 to 45.3. My onc ordered a couple tests to “ease my anxieties a bit”.

The CT of the chest, abdomen and pelvic showed no metastases. The whole body bone scan showed “new abnormal uptake in the lower cervical and lower lumbar spine, probably degenerative or posttraumatic. No definite evidence of metastatic disease.”

He tried to reassure me everything was probably fine. When discussing the rise in the tumor marker he also attempted to convince me that this happens sometimes, for unknown reasons. I asked him if there were benign reasons for those numbers taking such a jump and he said he did not know (or possibly wasn’t willing to suggest) benign reasons that would elevate marker numbers. He concluded that this showed no cancer and that I was fine. (I pray his is right…)

I have always asked for results for the blood work and tumor markers. When I asked him how most other patients felt about knowing results from markers, he said that most of his patients do not want to know their numbers; they let him determine if there is a reason for concern. He said that if my marker numbers had been for a patient that did not know the results, he would not have ordered the extra tests, and would have waited to see what the numbers would do the next time they were checked.

He is an optimist and always encouraging, so I did feel relieved after our visit, but within a few hours I was filled with doubt again and the nagging, worrying thoughts were back. The next appt was scheduled for 3 months from that visit, but I am sure I will ask for the markers to be done again in one month.

Here are reasons for my nagging doubts:
*A few years ago, I shared a number of emails with a lady from my own state who was also her2+and a member of this Her2 Support group. Her marker numbers usually ran 21-24; they were up to 42 when she had the diagnosis of the mets. Even then they did not freak out until it was run a second time and was still at 42. Her onc instantly ordered a PET (which she felt was the best indicator of any mets), and that is when they found the mets. Her mets were in a shoulder muscle, which I believe is quite unusual. The met was also her2- so she did not get Herceptin.

*It is common for tumor makers to rise before physical symptoms may be felt.

*The met has to be of a certain size, before it is seen on the test, so if tests are run too early…

*I’ve been fighting a sore throat and fatigue for about a month. A z-pack helped temporarily. I plan to check into this further, too, with my family physician. This followed by Cipro for bladder infection has reduced those symptoms, some.

More info for newbie’s concerning tumor markers: Here are some questions from me when visiting with Dr. Mark Pegram, a co-investigator on landmark research that led to the development of Herceptin.

Tumor Markers:
What is your opinion of having markers done?
I do them. They’re not very good, but I do them once in a while. It’s about like the barometric pressure. “How’s the weather today?” Oh its 760 millimeters of mercury today; well that’s one atmosphere, so that tells you maybe it’s not high or low but it doesn’t tell you the temp, clouds, precip. So that’s exactly the analogy I would make of the tumor markers. They’re a piece of a puzzle; by themselves they’re virtually worthless. But I still give them.

My CA27-29 #s have been in the normal range, but went down a little more after completing Herceptin. Might that possibly show that Herceptin had an effect?
They’re all in the normal range. It doesn’t mean a thing. Any bouncing around in the normal range doesn’t mean a thing. I don’t get impressed unless those things double on 2 separate occasions, back to back, a month apart. To impress me it would have to go from 20 to 40 to 80, then I’d say maybe something’s going on. That just means it’s time to take a look with some tests, but it’s not alarming. But 20 to 40 even, doesn’t get me excited. 40 doesn’t mean anything; 38 is the upper end of normal. So if it doesn’t double twice, then I’m unimpressed.

These remarks help to alleviate the worry, some! For now we will just wait until the markers are checked again, and maybe then there will be more answers. Cancer sure has an emotional impact on its victims, doesn’t it? Having (this) place to share our concerns helps us all.
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Blessings and Peace,
Barbara

DX Oct 02 @ age 52 Stage 2B Grade 3 Mastectomy
"at least" 4.5 cm IDC 1+node ER+61% /PR-
Assiciated Intraductual component with Comedo Necrosis
Her2+ FISH8.6 IHC 2+
5 1/2 CEF Arimidex
Celebrex 400mg daily for 13 months
Prophylactic mastectomy
Estradiol #: 13
PTEN positive, "late" Herceptin (26 months after chemo)
Oct 05: Actonel for osteopenia from Arimidex.
May 08: Replaced Actonel with Zometa . Taking every 6
months.

Accepting the gift of life, I give thanks for it and live it in fullness.

Last edited by Barbara2; 03-16-2009 at 06:20 PM..
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Old 03-16-2009, 05:24 PM   #2
Patb
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This is good news just keep a check on everything as
I am sure you will. I love your doggies. I have a black
schnauzer named Madi that I adore. I have always had
schnauzers and love them.
patb
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Diagnosed June, 06, Stage I, Grade3, ER+PR- Her2positive, No Nodes. A/C X 4. Radiation 33 with boost, Herceptin every two weeks until Nov.
07, Arimedex for 5 years. Mugas and Echo and chest xRay. Bone scan of whole Body, and Back of Brain and spine MRI.
CT scan of Lungs every six months
due to two small places. December
2009, bone scan due to bone pain.
Follow up test in 2010.
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Old 03-16-2009, 06:36 PM   #3
Becky
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This is very good news. I do understand your anxiety and desire to redo the tumor markers in a couple of weeks though. Make sure you are entirely better from your cold/flu (and I mean that you have been feeling well for at least a week or so) before you get them taken (also try not to have any caffeinated products too)

I think you will find the tumor marker thing to just be one of those things. Also - perhaps degenerative changes (due to ageing) in the back may also cause some of the markers to go up too.

Smile - this is good news.
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Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 18 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 03-16-2009, 08:47 PM   #4
jones7676
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Location: I live in Christmas, MI - located on the shores of Lake Superior.
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Nice to hear your good news and also some knowledge I can share with a friend that has similar things happen. So thank you for your good knowledge as well.
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Barb

10/03 Radical Mastectomy 3 cm tumor - 1/17 Nodes Stage II B, Her 2 +++ ER-/PR- 11/03 4 AC 4 Taxol 12/05 Stage IV - Lung met , Bone mets - Carbo, Taxotere, Herceptin 9/06 - 2 cm brain tumor 10/06 - Tumor removal surgery - Herceptin Halted 12/06 gamma knife tumor base.1/07 Navelbine/Herceptin 4/07 Rads to R femur 5/07 Stereotactic - new 2 cm brain tumor 4/07 Start Xeloda 5/07 Tykerb added 7/07 Brain MRI clean 10/07 .055 cm brain met found. 12/07 Stereotactic -1 cm brain tumor Start Tykerb 11/07 Abraxane/Herceptin 5/08 Cisplatin, Gemcitabine/Herceptin 6/08 Stereotactic to 1cm 9/08 Stereotactic repeat (growth). 11/08 Pet Scan Good but new tiny met on L lung/dead Brain surgery (no cancer cells found/scar tissue) 1/09 Chemo restarted 2/09 Pet Scan Bad - R larger very active/active L active lymph nodes both sides of chest MRI- mets slight increase 2/09 Start Doxil/Tykerb Treatment
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