HonCode

Go Back   HER2 Support Group Forums > her2group
Register Gallery FAQ Members List Calendar Search Today's Posts Mark Forums Read

Reply
 
Thread Tools Display Modes
Old 05-17-2010, 08:26 AM   #1
v-ness
Senior Member
 
v-ness's Avatar
 
Join Date: Nov 2009
Location: western ma
Posts: 280
Unhappy tumor markers

my anxiety level is volcanic lately. my mom had a massive pulmonary embolism a month ago yesterday and when they did a CT scan to figure out what might have caused the massive clots in both her legs, she only drank 1 of the 4 cups of contrast dye so it wasn't the best imagery. the doctor therefore ordered a CEA for colon cancer and CA-125 for ovarian. they saw nothing in the CT or the ultrasound of her belly. however the CA-125 came out at 275 when it should be no higher than 35. the hematologist (who is also my oncologist) said that she wasn't terribly concerned at all, in fact never would have ordered the test as it is not used as diagnostic. she said general malaise, clots themselves, infections, etc can also cause an elevated marker. so we relaxed. but she re-ran the test tuesday and it went from 275 up to 390 and now she "finds this concerning". mom is now having an intra-vaginal ultrasound tomorrow at 3 PM and i have literally been sick with anxiety since i heard about this on friday.

bad enough she almost died a month ago, and how she didn't stroke out we will never know. now she's trying to recover in a nursing home and we get this hanging over our heads. and here i am still in treatment for breast cancer! in fact i have herceptin 2 hours from now. i have been so concerned about trying to minimize my stress because i believe it plays a role in cancer and recurrence. but every day i wake up just sick to my stomach. i know - 'worry is just wishing for something you don't want to happen'.... but it's hard not to.

i know this isn't really her2+ related (except the fact that i am), but does anyone know much about tumor markers? it's all so confusing and i find ovarian cancer 10x more terrifying than breast. and if she has ovarian - all the more reason for me to get my one remaining out ASAP. i'm sorry, i am venting because i am sick of 4 days now of tears and anxiety. i am not sure i was even this nervous over my own tumor. in fact i went to my first biopsy utterly convinced it was benign. so now color me cynical.

valerie
__________________
8/09 - IDC 1.8 cm triple positive, lumpectomy left breast
10/09 began chemo (taxotere & carboplatin) and weekly herceptin.
1/21/10 finished chemo, continued on herceptin every 3 weeks until 10/2010.
2/10 began 7 wks of radiation
6/10 mom dies of primary peritoneal ovarian cancer
8/10 got my last remaining ovary out
10/10 mammogram all clear
3/11 MRI shows 5 'spots' in right breast, largest 1 cm unidentifiable on US
needle biopsy proved the largest to be old inflamed cyst -phew!
7/10 switched to Arimidex
8/9 switched to Femara - allergic to arimidex
Femara made me lose hair quickly so switched to Aromasin
Aromasin made my hair fall out too and the bone pain was too much.
back on Tamoxifen 1/2013.
blood clot from trains and planes 5/2014 so on coumadin per onco for as long as i am on tamoxifen
tamoxifen was supposed to be up with my 5 yrs in may but my boyfriend was diagnosed with stage 4 colon cancer so i am staying on tamoxifen indefinitely because i want some ammo against BC, given the stress. lost my husband in only 10 wks in 2007 to stage 4 esophageal cancer.
cancer's screwing with another man i love
2/2016 - 6yrs in remission, off tamoxifen and off coumadin - yay!
v-ness is offline   Reply With Quote
Old 05-17-2010, 08:51 AM   #2
Mary Anne in TX
Senior Member
 
Mary Anne in TX's Avatar
 
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
Re: tumor markers

Valerie, it's like stacking one problem on top of another and another and the stress just mounts up. It's hard enough to keep the stress and worry about ourselves in check and monumental to try to deal with that of someone we love so much.
I can merely add my love and support for your peace and sanity. I think you're doing really great to talk about it and get some insight from others. I'm glad you are around to support your mom and love on her and help her wait for the news and treatment to come. I do think that we fight the battles far better than we wait for the enemy to attack. love and prayers, 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!
Mary Anne in TX is offline   Reply With Quote
Old 05-17-2010, 09:35 AM   #3
Pam P
Senior Member
 
Pam P's Avatar
 
Join Date: Sep 2005
Location: MN
Posts: 731
Re: tumor markers

Valerie, I just want to say I'm sorry your are going through so much with your own treatment and this additional worry with your mom's health. I don't know anything about those tumor markers I only get the ca2729. Hopefully the jump in numbers is still due to the other health issues your mom just went through. But good to be very proactive with the testing. If anything is found then it is probably caught very early and very treatable. I glad you posted this and hopefully it helps the stress level just a little to have this outlet. Pam
__________________
Pam
6/01 IBC er+ her2+stage IIIb; mastecomy
7/01 AC, taxol; radiation
2/02 tamoxifen
9/02 stage IV bone mets femara
1/03 taxotere/herceptin/aredia
6/03 herceptin, aredia & faslodex
1/04 navelbine, herceptin, aredia
2/05 herceptin/aredia
7/05 xeloda/herceptin/aredia
3/07 xeloda/tykerb/aredia
5/08 taxol/avastin/aredia
2/09 gemzar/herceptin/zometa
7/09 Taxol/Carbo/Herceptin, zometa
10/09 navelbine/herceptin & zometa
2/10 herceptin & tykerb & zometa
4/10 add xeloda &aromasin
10/10 dx with dermatomyiositis triggered by cancer
11/10 restart herceptin, tykerb, zometa
12/10 surgery-place rod in R femur to stabilize bone
1/11 radiation to R femur - 20 tx
2/11 2nd surgery - rod in Left femur
2/11 tx eribulen -- suspended dx brain mets
3/11 brain mets wbr 20 tx
4/11 halaven; discontine 8/11 not working
8/11 radiation to left femur 20 tx'
8-9/11 rad to lower spine
9/11 abraxane/herceptin/zometa
9/12 xeloda/herceptin/zometa
12/12 ablation of liver
Pam P is offline   Reply With Quote
Old 05-17-2010, 12:05 PM   #4
ammebarb
Senior Member
 
Join Date: Mar 2009
Posts: 508
Re: tumor markers

Valerie, I'm so sorry you and your mom are experiencing such rough roads. I hope that you are able to get results from her vaginal ultrasound quickly, so you don't have to imagine the worst....Hope the news is reassuring and she can continue to recuperate from the pulmonary embolism and you can settle back in to accomplishing your herceptin, without any more frightening problems. Sending best wishes and prayers for health and peace.

Barb A.
ammebarb is offline   Reply With Quote
Old 05-17-2010, 01:26 PM   #5
schoolteacher
Senior Member
 
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
Re: tumor markers

Valerie,

Sorry about your mom. Hope you are feeling better this afternoon.

Amelia
schoolteacher is offline   Reply With Quote
Old 05-17-2010, 04:42 PM   #6
chrisy
Senior Member
 
chrisy's Avatar
 
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
Re: tumor markers

Valerie,
no words of wisdom - it's a lot to bear. Waiting for answers is the worst. Hang in there
Chris
__________________
Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial

5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
chrisy is offline   Reply With Quote
Old 05-17-2010, 04:57 PM   #7
'lizbeth
Senior Member
 
'lizbeth's Avatar
 
Join Date: Apr 2008
Location: Sunny San Diego
Posts: 2,214
Re: tumor markers

Valerie,

That is a lot to bear. I am adding my prayers and good wishes to the rest. Hope that you will be past this stressful time soon!
__________________
Diagnosed 2007
Stage IIb Invasive Ductal Carcinoma, Pagets, 3 of 15 positive nodes

Traditional Treatment: Mastectomy and Axillary Node Dissection followed by Taxotere, 6 treatments and 1 year of Herceptin, no radiation
Former Chemo Ninja "Takizi Zukuchiri"

Additional treatments:
GP2 vaccine, San Antonio Med Ctr
Prescriptive Exercise for Cancer Patients
ENERGY Study, UCSD La Jolla

Reconstruction: TRAM flap, partial loss, Revision

The content of my posts are meant for informational purposes only. The medical information is intended for general information only and should not be used in any way to diagnose, treat, cure, or prevent disease
'lizbeth is offline   Reply With Quote
Old 05-17-2010, 05:32 PM   #8
krisvell
Senior Member
 
krisvell's Avatar
 
Join Date: Sep 2009
Location: Kensington, CT
Posts: 394
Re: tumor markers

Valerie,
You're on my prayer list and I have just added your mom too. Sending positive thoughts & prayers your way. I am hoping for the best. I wish you didn't have to go thru this.
Kris....
__________________
06/08/09 - 55, IDC, IIIA, ER+/PR-/HER+++
Nottingham 6/9 - Grade 2 5.2cm, several nodes
06/23/09 - Neoadjuvant - TCH Herceptin til June
10/07/09 - Finished Chemo
10/27/09 - Mastectomy RB
Path Report: RB No residual tumor pCR,
2 of 15 pos - .5mm largest micromets
12/18/09 - Radiation started (28)
02/05/10 - Finished Radiation
01/11/10 - Started Femara
06/22/10 - Finished Herceptin.. My son's 22nd BD. Hope it's a sign! Hoping for the best.
11/15/10 - Started Walter Reed BC Vaccine trial at
1/04/11 - Sibley Mem. Had to withdraw due to met
01/23/11 - Stage IV - Brain Met 1.6cm 1.7cm
02/03/11 - Gamma Knife (2 fracts to minmize necrosis)
03/01/11 - Gamma Knife
6/11 - Necrosis
7/11 - Necrosis stopped & Tumor progression
8/11 = Now think it's really necrosis
9/11 - Avastin every two weeks -- It's working!! Necrosis is shrinking.
12/11 - Necrosis gone AVASTIN worked.
12/11 - Bone &CT found


Oct '10 - Ran Hartford 1/2 Marathon to Thank Dr. Slamon for Herceptin!
krisvell is offline   Reply With Quote
Old 05-17-2010, 05:32 PM   #9
Soccermom
Senior Member
 
Soccermom's Avatar
 
Join Date: Jun 2006
Location: Bradenton,FL
Posts: 977
Re: tumor markers

Valerie,
Just by way of an fyi...CA125 although notoriously unreliably for OVCA an elevated number can indicate infection elsewhere in the body . It has also been found elevated in the metastatic BC setting. Most Docs are unaware of this connection ..
gentle loving hugs dear girl,
Marcia

Last edited by Soccermom; 05-17-2010 at 06:28 PM..
Soccermom is offline   Reply With Quote
Old 05-17-2010, 09:50 PM   #10
Paty
Senior Member
 
Paty's Avatar
 
Join Date: Feb 2007
Location: Cordoba, Mexico
Posts: 672
Re: tumor markers

Dear Valerie,

I can understand how terrified you feel after all this tests. As Marcia says, CA-125 is not good for diagnostic as it is a test that can be altered by any misfunction in the body. The intra-vaginal ultrasound will definetly help to get the right diagnosis. CA-125 is more reliable for the follow up of ovarian cancer after treatment has been given, but not to diagnose the illness as it causes many false positives and also negatives. I am sure your doctor will explain this better to you. Please let us know how your mom is feeling in the next days. All my love,

Paty
__________________
Dx. June 30th, 2006 at age 43
Lumpectomy rt breast
2.2 cm tumor, 13 nodes all negative
ER-PR+,her2+++
6 FAC
32 Rads
Dx. Lung fibrosis due to radiation
Ended 1 year herceptin in March, 2008
Paty is offline   Reply With Quote
Old 05-19-2010, 12:50 PM   #11
Lien
Senior Member
 
Lien's Avatar
 
Join Date: May 2006
Location: Haarlem, the Netherlands
Posts: 835
Re: tumor markers

Dear Valerie

I'm so sorry you have all this on your plate. I wouldn't worry too much about the stress, though. I'm a very optimistic non-stressy person, eating the right diet and I breast-fed both my kids for almost a year. I got cancer anyway.

If you want to diminish your stress because you want to feel better: fine. Try doing yoga or tai chi or meditation. Visualize yourself in a beautiful garden surrounded by fragrant roses. Only people who give you love and energy are allowed in. As soon as someone gives you stress, you have a small remote control device with which you can zap them away. They end up behind the roses, without knowing what happened to them. This garden is the place where you can relax. If you want it to be filled with flowers, it is. If you want a ski-slope, or a pool, or a meadow full of horses, that's how it is. Make it your ideal place. And practice this every day. The more often you do it, the better it makes you feel.

Don't feel guilty if you need time away from it all. You will feel better after your relaxation exercises so you will be able to support your Mom and yourself.

Hugs

Jacqueline
__________________
Diagnosed age 44, January 2004, 0.7 cm IDC & DCIS. Stage 1, grade 3, ER/PR pos. HER2 pos. clear margins, no nodes. SNB. 35 rads. On Zoladex and Armidex since Dec. 2004. Stopped Zoladex/Arimidex sept 2009 Still taking mistletoe shots (CAM therapy) Doing fine.
Lien is offline   Reply With Quote
Old 05-21-2010, 08:37 AM   #12
Karen Wheel
Senior Member
 
Karen Wheel's Avatar
 
Join Date: Jul 2009
Location: Sardegna, Italy
Posts: 362
Re: tumor markers

Valerie - wow - sorry to hear this! I'm sorry to hear this - it is a lot to take on your plate (and your moms!) .... hang in there -

Don't forget to take care of YOURSELF too!!!!

;-)
Karen
__________________
Karen Wheelhouse Age: 46
Facebook id: Karen Wheel
2-09 – Age 44 -Biopsy-Cancer
3-09 – Right Quadrantectomy. Clear margins.
3 lymph nodes taken - all clear
Tumor results: Stage 1, 1.5 cm, Her2 +++
Est positive 80% - Prog 10% - Ki67 postive 30%
4-09 – Became a vegan! pH balance of body - cancer can't grow in neutral pH!
4-09 Started Herceptin & Chemo (9 weeks of Navelbine *)
* FYI - when coupled with Herceptin has the same results as more toxic chemo. No brainer!
8-09 - 30 RADS
9-09 - Said NO to hormone therapy
4-10 Finished Herceptin!!!!


7-10 PET Scan & other exams .... All clear! YIPPEE!!!!
11-10 Breast, organ Ultrasounds and lung x-rays all clear no changes ... NED!

2-25-2011 --- 2 years from surgery and NED!!!!!!
7-2011 Clear bone scan and full body and head MRI! NED! NED! NED! ;-)[/SIZE]
Karen Wheel is offline   Reply With Quote
Old 05-21-2010, 09:02 AM   #13
vlcarr
Senior Member
 
vlcarr's Avatar
 
Join Date: Jun 2009
Posts: 343
Re: tumor markers

Keeping you in my heart.
__________________
Vicky
Age 47, TN, Diagnosed 05/09
Her2+, ER/PR-, Stage III, 2 tumors = 1 8cm tumor
Grade 3
Sentinel Node Biopsy-speck present in 1 node
Completed 3 month clinical trial of weekly Herceptin and 1000mg Tykerb daily
Tumor no longer present
Right mastectomy and lymph node removal 09/25/09
No cancer present at time of surgery, none in lymph nodes
Start TCH 10/15, every 3 weeks for 4 months followed by radiation
Finished chemo 01/28/10-YEAH!
Herceptin every 3 wks until end of June
Radiation begins 03/01, 6 1/2 weeks
Radiation complete--Yeah!!
Developed lymphedema after radiation
In hospital for 4 days with pneumonia:(
Herceptin done! 06/24/10
Port Removed 07/08/10
Still in PT for lymphedema and mobility issues
DIEP Reconstruction 05/11
I can be changed by what happens to me, but I refuse to be reduced by it~~Maya Angelou
vlcarr is offline   Reply With Quote
Old 05-21-2010, 10:01 AM   #14
flynny
Senior Member
 
flynny's Avatar
 
Join Date: Jul 2008
Location: New Boston, NH
Posts: 275
Re: tumor markers

I know how the roller coaster can go and all I can say is hold on and keep staying positive! I pray she does well with everything.

Sarah
__________________
-Sarah-

Jan '07 felt lump (PCP "thought" it was a cyst)
Nov '07 "bloody nipple discharge" (OB-GYN "thought" I had fibrocystic breasts and told me to take 400 IU's of Vitamin E)
Note: Mother was dx w/BC in 2004 (ER/PR+ & HER2+) & mets to brain April 2007 (she passed away June 17, 2008)
2/1/08: Biopsy Dx: DCIS (age 34)
2/22/08: Surgery R-side Mast
2/28/08: 1st Path Rpt Dx: IDC 1.8cm tumor & DCIS 2.1cm
2nd Path Rep DFCI - IDC (0.9cm) & DCIS (2.1cm)
Stage 1b/Gr 3; ER+(5%), PR+(2%), HER-2+++
5/5 nodes NEG; Clear Margins
Chemo: AC 4 rnds (1st one 3/31/08) finished 6/2/08
TH (Taxol/Hercepin) 12 weeks (1st one 6/25/08) finished 9/8/08
Herceptin 9 mos (every 3 weeks) finished 6/8/09
BRCA 1/2 NEG
Bio: Age 39, married to James 1999, 2 boys 12 & 10 yo
flynny is offline   Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump


All times are GMT -7. The time now is 03:32 PM.


Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2026, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007 - 2021
free webpage hit counter