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09-16-2009, 05:29 PM
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#1
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Benign reasons for TM'ers being elevated?
Sorry to start another thread on this but I am just paralyzed with fear. My whole body hurts & I can't breath...major anxiety! Even my xanax is not helping. I wake up at night & can't get back to sleep.
As you all know from my 1st thread my TM'ers have slowly been rising over the last yr & 1/2. Started at a consistent 15 to 18 for a long time. Then creep up to 20, 23, 25, & last wk an all time high of 46. Retested last Monday & now in a wks time their 53. I looked up benign causes of TM'ers being elevated & couldn't find as much as I hoped for. But I did see it said seroma's which is a benign reason can cause an elevated rise in TM'er. I've had a large seroma since my 1st mastectomy that's never gone away. Has anyone had something else cause their TM'ers to rise other then the obvious?
Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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09-16-2009, 06:40 PM
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#2
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Senior Member
Join Date: Sep 2005
Location: Newton, MA
Posts: 951
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Re: Benign reasons for TM'ers being elevated?
Hi Cheele,
Any type of inflammation can cause them to rise.
Barbara H.
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09-16-2009, 08:29 PM
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#3
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Senior Member
Join Date: Sep 2005
Posts: 556
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Re: Benign reasons for TM'ers being elevated?
Cheele,
You can try getting the Her2 serum marker. It will not have many false positives.
Julie
__________________
Diagnosed in Sept 2004 while pregnant with the second child. Stage 3b, tumor 4.5cm, 4 auxillary and supraclav node positive. Her2+++ FISH 9.4 and er-,pr-.
Had dose dense neoadjuvant AC,Taxol then mastectomy,radiation+xeloda+Herceptin.
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09-16-2009, 09:32 PM
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#4
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: Benign reasons for TM'ers being elevated?
Don't forget that benign tumors and lymphdema can cause the tumor markers to rise too.
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09-17-2009, 05:38 AM
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#5
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Re: Benign reasons for TM'ers being elevated?
Chelee
Have the TM's been accurate for you all along? As others have said, any infection, inflammation etc can cause them to fluctuate...mine were always normal even when I had progression.....they are not a definate marker for everyone.
Sending a big hug to calm your fears...you are in my thoughts
__________________
"Be kinder than necessary, for everyone you meet is fighting some kind of battle."
Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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09-17-2009, 07:39 AM
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#6
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Re: Benign reasons for TM'ers being elevated?
Chelee, mine went up and down for all kinds of crazy reasons...into the 40s and lover 50s. It was usually when my blood work had a quirk of some kind or when I was under extreme stress. I will confess that I worried about it a lot and it is mainly what drove me to fight for that 2nd year of herceptin!
But now it's 28 and I'm swinging from the moon!
Chelee, I'm hoping that yours is from other stuff too and that you will get some peace of mind soon by learning you're doing great! ma
__________________
MA in TX.
Grateful for each and every day....
Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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09-17-2009, 02:56 PM
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#7
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Re: Benign reasons for TM'ers being elevated?
Chelee,
My markers have always been normal even though I've had lung and brain mets.
If you're taking other medications, they may be responsible.
As for Xanax, have you thought of switching to Ativan or Klonazepam?
Xanax works the fastest, but it doesn't work as long as other similar drugs, and therefore more is needed. Valium is next, followed by Ativan and then Klonazepam. The latter is the longest acting.
You might want to switch to Ativan or Klonazepam.
Joan
__________________
Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2023 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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09-17-2009, 03:37 PM
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#8
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Re: Benign reasons for TM'ers being elevated?
I do know I've had fibroids that have shown on my scans since my 1st baseline PET/CT. I've also had a big seroma that was drained twice but has never absorbed. Its large...last "US" was 6.9 x 6.8 x 2cm. It does feel like it's changed...feels hard as a rock now. It was never this hard...causes discomfort big time.
I've always had these things since this entire nightmare started so I would have to wonder why it would elevate my TM'ers slowly over the last year & 1/2? And now instead of a slowly elevated rise...seems to be climbing faster now. I've been fortunate that I've experienced no lymphdema...well that I'm aware of?
Shelia my markers "seemed" to be accurate. They stayed in a low range throughout chemo & to the end of my Herceptin. Your question got me to look hard at my TM'er readings & now thanks to you I see my TM'ers started slowly rising not long after I finished Herceptin. Didn't notice that until now. I see my markers started creeping up exactly 4 months after I no longer received Herceptin. So now that makes me wonder if Herceptin was keeping "it" away...or if my markers are going to their new normal? I don't know what to think?
Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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09-17-2009, 04:19 PM
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#9
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: Benign reasons for TM'ers being elevated?
I remember reading that cysts can cause the tumor markers to rise. I also wonder if steriod medications which increase inflammation can cause them to rise too?
People on some kinds of chemo take steroids. I also wonder if some kinds of chemo can cause the tumor markers to rise temporarily?
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09-17-2009, 09:11 PM
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#10
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Senior Member
Join Date: Sep 2005
Location: South Dakota.
Posts: 621
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Re: Benign reasons for TM'ers being elevated?
Chelee, this past spring I had the same concerns as you. My markers had consistantly been 18-22. Then it went to 23, followed by 45. My onc ran a bone scan to give me peace...it was ok. He wanted to see me in 3 months. I couldnt wait 3 months, so we did the TM again in 1 month. It was 16. I cried because I had been so sure...
More to the story:
Both my onc and his nurse had told me repeatedly that this was normal. That it happens all the time. Happens all the time? Then why, when I asked our Her2+ group, where an enormous amount of Her2+ people come for support and answers...why did I not get one reply from someone who had a large rise in TMs, followed by a "normal" test?? Why not? If this happens "all the time?"
Coincidence?:
I also knew that on the day of the high tumor marker, the CA27.29 machine broke down and the blood work had to be sent somewhere else that day. To this day, I believe, but cannot prove, that something happened with my bloodwork... that it didn't get chilled properly, or whatever, which resulted in a lab error. BUT, I continued to reason, if that was the case, then why weren't there more lab results from other patients, that were not in the normal range? I will never know for sure.
And also:
I have quoted Dr. Pegram a number of times on this very issue, so my appologies for the repeat, but this is what he had to say (2007) about tumor markers:
Question to Dr. Pegram: 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.
Question: 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.[/I]
Me again:
And finally, are there benign reasons for tumor markers to elevate? I asked my onc and he really would not give me specifics, but he said, "Yes, there are many reasons that tumor markers can elevate. If they would get to 100, then I would want to do more testing."
When searching for "answers" I also came across this:
1: J BUON. 2007 Oct-Dec;12(4):487-92
Zervoudis S, Peitsidis P, Iatrakis G, Panourgias E, Koureas A, Navrozoglou I, Dubois JB.
Breast Department, "Lito" Maternity Hospital Athens and Ioannina University, Greece. szervoud@otenet.gr
PURPOSE: To analyze, study and interpret the increased levels of tumor markers in breast cancer patients without recurrence or metastasis. PATIENTS AND METHODS: We studied a series of 400 patients with stage 1 breast cancer during a 3-year follow-up after primary treatment. Follow-up included frequent serum estimation of CEA, CA 15.3, CA 125, CA 27-29, TPA and TPS tumor markers. RESULTS: Of 358 patients being continuously disease-free, 18 (5%) cases showed false-positive levels of tumor markers, associated with benign conditions and not to cancer recurrence or metastasis. These conditions included ovarian cysts, thyroid disorders, hepatitis, renal stone and sarcoidosis. CONCLUSION: The value of increased tumor markers should be interpreted cautiously because it doesn't always imply disease recurrence. Tumor markers may increase in many benign conditions.
PMID: 18067207 [PubMed - indexed for MEDLINE]
Peace to you. You are in my prayers.
__________________
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; 09-17-2009 at 09:26 PM..
Reason: To add article
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09-18-2009, 09:03 PM
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#11
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Re: Benign reasons for TM'ers being elevated?
Barbara, Your story does sound similar to mine. The only difference is my markers have slowly over a yrs time been gradually increasing & now a jump. Like you I hoped to find several other woman on this board that ran into the same thing but it would turn out to be nothing. So far I'm not seeing that. Yours is the 1st post that experienced almost the same problem.
My onc ran my TMers again last Monday just to see if it was a fluke...but it jumped up again by 7 points in a wk. It just keeps going up. Now there not as high as I've seen lots of other peoples...but it still scares me since my TM'ers have always been so stable. Four months after stopping Herceptin they have seemed to go up. Not sure if that's a coincidence or what to make of it?
But your post does give me some hope...and hearing Dr. Pegrams thoughts on TM'ers helps alot! He's the man...along with Slamon and a few others. My markers were rising slowly every 3 months. Then the last time it was 6 months apart & it doubled. Quite a jump for me. That got my attention. I've also seen people like Brenda (hutchibk) TM'ers be a very good indicator of progression when they went up gradually like mine. If I would see mine drop just one time I'd feel so much better about this. I'm praying so hard for one of those "benign" reasons they go up.
Thank you so much for sharing all that with me...it helps! My FSH & Estradiol has had a big change finally...I wonder if that could play a part in this? Didn't think to ask my onc that at my last visit. Can't wait to get my PET/CT done.
Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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