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07-16-2014, 04:28 PM
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#1
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Senior Member
Join Date: Feb 2014
Location: Washington State
Posts: 49
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Need Advice - Scanxiety
Hello All - I've been hanging out since I started treatment in Jan. I haven't said much about my situation but I have made tremendous progress on Herceptin, Perjeta and Taxol. CEA is my marker that works and it has gone from 400 to 1.4. An intermediate scan in March showed everything resolved except for a spot in the liver that still lit up a bit. I made it through 12 weeks of taxol, pulled off due to neuropathy that has improved a lot since stopping. Now I am just on the Herceptin and Perjeta. So all should be good....But I am so nervous about the scan on Monday. I understand now what you all are talking about with the scans....I did get some Ativan and that helps.
I am also worried about brain mets. I am thinking of asking my onc for an MRI. I had a clean one in Jan. For those of you that have had brain mets, did it show in your tumor markers? My onc does not do an MRI unless there are symptoms. What advice might you have for me on this? Thanks in advance and I really appreciate the help from those of you that have more experience and are so kind to share this with me!
Dizzy
__________________
2009: dcis rt side, mastectomy, no chem or rads
2009: rt recon implant.
Jan 2014: stage 4. pain right side, found "too many to individually account for" liver mets. Found right axilla lymph nodes and nearby mass (source). Lung, lymph and bone mets. Brain clear by MRI. Er and pr neg, HER2 +++
Feb 2014: herceptin, perjeta, taxol
July 2014: no active disease, only bone scars and 1 liver scar! Tumor markers all normal again.
Dec 2014: seizure, 3 brain mets (15, 5 and 3 mm)
Feb 2015: Linac Stereotactic Radiation for brain mets
June 2015: no new brain mets, old ones greatly reduced in size. Bod still no active disease
October 2015: New brain Met, zapped by Stereotactic rads, watching another spot
Jan 2016: The other spot grew, zapped again. Still on herceptin and perjeta every 3 weeks
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07-17-2014, 12:39 AM
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#2
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Senior Member
Join Date: Apr 2012
Location: Melbourne, Australia
Posts: 494
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Re: Need Advice - Scanxiety
Dear Dizzy,
No real answers in regard to scanxiety - after almost 2 years stable on Herceptin and Tamoxifen, I get all steamed up every time! Just breathe deep! Sounds like the taxol has done its job and you will be fine.
I share your uneasiness about brain mets, as my oncologist has the same attitude. I guess you could say why look for trouble? But I would also be interested in feedback about the markers from women who have had brain mets.
I hope all goes well next Monday, and will have all digits crossed.
Best wishes.... Pam
__________________
Diagnosed 2004: Lumpectomy - 2 tumours, both grade 1 infiltrating duct carcinoma, about 12mm. ER+,
C-erbB-2 status 3+.
Clear margins, no nodal involvement.
Radiotherapy, i year Tamoxifen, 4 years Arimidex.
Rediagnosed 2012: Multiple bone metastases.
3/12: began on Marianne trial - T-DM1 + Pertuzamab/Placebo.
5/12:Unexpected development of numerous bilateral liver mets. Came off trial.
Started Docetaxol/ Herceptin + Zometa.
8/12:Bones stable +major regression in liver (!)
9/12:Can't take any more Docetaxol! Start on Herceptin and Tamoxifen. Cross fingers!
Changed to Denosumab.
11/12: Scan shows stable - yay!
11/13: Still stable :-) !!!
1/16: All stable, but lowered calcium, so switched to Zometa 3 monthly.
2/19: Happily still stable on Herceptin, Letrozole and 3 monthly Zometa.
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07-18-2014, 08:30 PM
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#3
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Senior Member
Join Date: Jul 2013
Location: Hot Springs, South Dakota
Posts: 158
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Re: Need Advice - Scanxiety
More than once I have turned to the ladies on this site to help me thru scanxiety. So you have come to the right place. sometimes just knowing others feel the same way is a big help. I think we all go thru times when we just want some solid answers to hang on to. Hang in there Pamelmary is right - just breathe and remeber you are not alone. Good luck on your scans
__________________
Paula T. (saygoon means dog, yes I am Native)
DX March 2012
Stage IV w/ 5 bone mets to spine 2 on ribs
Herceptin, Zometa, Taxotere and Anasterole and of course radiation
2/14/2014 2 mets on pelvic bone
Stop Anasterole continue on Herceptin and Zometa start radiation (again)
2/24/2014 start T-DM1 continue Herceptin and Zometa
4/28 more radiation that brings total to 5 (10 days ea) - I think I will soon glow in the dark....
6/01/2014 Great news! Rib mets gone, 4 of 5 spine mets showing new bone growth and pelvic mets shrinking.
8/28/2014 T11 on spine is being stubborn started Perjeta, Herceptin, Zometa and Taxol - goodbye hair!
9/04/2014 Tomo therapy - pain finally gone
1/3/2015 - starting New Year out as still stable. Feeling positive
2/23/2015 - problems with left leg, bone met flaring up - MORE radiation Whew!
2/24/2015 Stress fracture in right side of pelvic - (great just great) back to wheelchair then walker then.....
2/26/2015 Off Taxol!! Still on Perjeta, Herceptin and Hormone Blocker starting to feel a little more human.
4/10/2015 Cancer has spread to spinal fluid - not sure where I go from here
6/29/2015 Omaya Port placed,begin IT Herceptin on 7/7/2015
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07-19-2014, 09:47 AM
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#4
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Senior Member
Join Date: Mar 2014
Posts: 95
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Re: Need Advice - Scanxiety
Same here - CT scan to determine whether chemo was successful after 6 times THP on Monday, results on Wednesday. Please cross your fingers for me! I have back pain that I currently blame chemo for, or maybe it's scanxietey... I can't even think about if it's not...
Annette
__________________
Annette
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03/2014: Diagnosed with ER/PR-, HER2+++ MBC (bone mets, oligometastatic)
04/2014: Started 6 cycles of "PHD" (Perjeta, Herceptin, Docetaxol)
07/2014: Finished 6 cycles of PHD; restaging; 2 bone mets are sclerotic - looks like Herceptin and Perjeta is working
10/2014: STABLE!
01/2015: STABLE!
04/2015: STABLE!
08/2015: STABLE!
12/2015: BRAIN METS. BODY STABLE.
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07-19-2014, 02:53 PM
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#5
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Senior Member
Join Date: Feb 2014
Location: Washington State
Posts: 49
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Re: Need Advice - Scanxiety
Thank you lovely ladies for your kind words, it really does help to know I am not alone in all of this! I had a nice surprise, my daughter came home from college to spend the weekend with us! This has helped to keep my mind off the scans.
Annette - I guess we are scan buddies! I'll keep my fingers crossed for the both of us! Best of luck to us!
__________________
2009: dcis rt side, mastectomy, no chem or rads
2009: rt recon implant.
Jan 2014: stage 4. pain right side, found "too many to individually account for" liver mets. Found right axilla lymph nodes and nearby mass (source). Lung, lymph and bone mets. Brain clear by MRI. Er and pr neg, HER2 +++
Feb 2014: herceptin, perjeta, taxol
July 2014: no active disease, only bone scars and 1 liver scar! Tumor markers all normal again.
Dec 2014: seizure, 3 brain mets (15, 5 and 3 mm)
Feb 2015: Linac Stereotactic Radiation for brain mets
June 2015: no new brain mets, old ones greatly reduced in size. Bod still no active disease
October 2015: New brain Met, zapped by Stereotactic rads, watching another spot
Jan 2016: The other spot grew, zapped again. Still on herceptin and perjeta every 3 weeks
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07-19-2014, 03:36 PM
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#6
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Senior Member
Join Date: Mar 2014
Posts: 95
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Re: Need Advice - Scanxiety
Hi DizzyDo,
Thank you! I'll cross my fingers for you, too! And all toes that are not subject to neuropathy - right foot only! ;-)
Hope for the best for both of us - I have a little one (5 1/2 years old) and feel horrible when I think of having to leave her soon. But then: don't we all, the age really is not that much of a factor...
Bone mets are apparently not easy to stage - in the staging after 3 rounds of chemo I was told by one doc that there was progress and to go on T-DM1. Turned out they used to different CTs ("angles", I mean) and interpreted sclerosis at the margins as progression. I got a second opinion and then eventually kept going with the chemo. I really hope I made the right decision...
__________________
Annette
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03/2014: Diagnosed with ER/PR-, HER2+++ MBC (bone mets, oligometastatic)
04/2014: Started 6 cycles of "PHD" (Perjeta, Herceptin, Docetaxol)
07/2014: Finished 6 cycles of PHD; restaging; 2 bone mets are sclerotic - looks like Herceptin and Perjeta is working
10/2014: STABLE!
01/2015: STABLE!
04/2015: STABLE!
08/2015: STABLE!
12/2015: BRAIN METS. BODY STABLE.
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07-19-2014, 04:23 PM
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#7
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Senior Member
Join Date: May 2006
Location: California
Posts: 668
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Re: Need Advice - Scanxiety
Hi Dizzy,
It's normal to have anxiety before the ct scans, you will be fine-- everything indicates-- based on the tumor marker that you will see excellent results.
A far as the MRI, you need to ask the doctor to send you for a brain MRI at least once a year. The tumor marker won't tell if you have cancer in the brain, is mostly to measure the cancer activity in the body.
The reason behind having the brain MRI's is to treat the brain lesions when they are small, once the lesions appear too long, the oncologist radiologist might want to perform a whole brain radiation. This is something you don't want, it may take years for one to develop too many spots in the brain before going that route.
Put your foot down, tell your doctor what you want- is your life, your body.
If necessary change doctors, you want a compassionate and sensitive doctor who listens to you. You already have a lot on your plate to deal with someone who does not care about your wants and won't listen to you.
Please, keep us posted.
Hugs,
Adriana
__________________
1994 - rt brst, .lump, underarm node dissection,chemo+rad 1.2 cms, Grade 3.
28 nodes neg
Er,Pr, Positive HER2 status unknown
2003- Recur to rt lung.July 16 ( B-Day!)
Her2+++ Er,Pr, Negative
2003 - Aug04--Navelbine + Herceptin
2004- 2007--NED - Herceptin, only
2007 Feb-April Xeloda added to hereceptin
2007-May Back on Navelbine+Herceptin
2008-Feb-Mar 15 Ses Rad to Rt. Lung
2008- Oc 17 Add Tykerb to Herceptin
2009- June-- Discont Tykerb
2009 July 7--Current Taxol + Herceptin
2009 Dec--Discontinued treatment due to progression. Looking into cyberknife.
2010-Aug Accepted to TDM1, no SE, except liver count went up.
2010-2011 September got kicked out of the trial, due to a small spot found on lung.
2011- 2012 September thru early 2013 on Herceptin
2013- March Bone density shows small spot on 5th rib.
2013 - April 4th appt with onc. will post after discussing course of treatment.
2013-March-April Cyber knife to brain and radiation to rib. Chest --base line before chemo-CT-Scan stable for lung issue. CA2729 Normal.
2013 April Herceptin- TDMI
2013 Sept Herceptin + Perjeta . CA2729 within normal range. Brain and Pet scans October 31st. will post results.
2013 October Brain MRI- mixed response. Will see Onc/rad on Halloween.
2013 October/November Brain-MRI nothing new. Repeat MRI next year in May.
2013 December Continue Herceptin and Perjeta. Stable at the moment.
2014 February Brain MRI -clear!
2014 January Added Taxotere to Perjeta+Herceptin.
2014 March Stopped chemo-chest ct-scan next.
2014- March Scans shows tumor's larger, CA2729 higher. Discontinue Herceptin.
2014 April Perjeta+ Halaven
2014 April CA2729 went down 60 points after one cycle. Cough does not want to go away.
2014 June Continue on Perjeta + Halaven-- no more cough. Stable
2014 June Back on Herceptin + abraxane
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07-19-2014, 05:30 PM
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#8
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Senior Member
Join Date: May 2011
Location: Denver, CO
Posts: 1,427
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Re: Need Advice - Scanxiety
I get scanxiety too. I tell myself "it's just information." I tell myself that knowledge is power. I tell myself I feel fine and everything should be fine. And that works, but not perfectly. A little anxiety still breaks through now and then. One thing that works for me, though probably not for many other people, is to imagine the worst that could happen. I'm still at the "let's try this other drug" phase, not the, "we've run out of options" phase, so I think about that and then decide I can handle that. That might be a bit too much reality for some people, though.
It sounds like you're doing fine. Since you had tumor markers and now basically have none, that's a very good sign.
Just do whatever you need to do to distract yourself or pamper yourself. It'll be OK.
__________________
Amy
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4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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07-20-2014, 01:51 PM
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#9
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Senior Member
Join Date: Feb 2014
Location: Washington State
Posts: 49
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Re: Need Advice - Scanxiety
Thank you all for the support! Adriana - thank you for the advice, I will talk to onc later this week and discuss my concern. Amy - I like your strategy! I do that sometimes too, I call it my plan for the worst, hope for the best approach. I find I am better prepared when things go wrong and delighted when they don't. It works for me too. Annette - I can't cross my toes at all (darn taxol) I just tried lol. But I'll keep my fingers crossed for you. Best of luck tomorrow!
I just put the nasty goop in the fridge that I have to drink (yuck) first dose tonight...I wish it had some alcohol in it, that would give me more incentive to drink it!!! Hehe
__________________
2009: dcis rt side, mastectomy, no chem or rads
2009: rt recon implant.
Jan 2014: stage 4. pain right side, found "too many to individually account for" liver mets. Found right axilla lymph nodes and nearby mass (source). Lung, lymph and bone mets. Brain clear by MRI. Er and pr neg, HER2 +++
Feb 2014: herceptin, perjeta, taxol
July 2014: no active disease, only bone scars and 1 liver scar! Tumor markers all normal again.
Dec 2014: seizure, 3 brain mets (15, 5 and 3 mm)
Feb 2015: Linac Stereotactic Radiation for brain mets
June 2015: no new brain mets, old ones greatly reduced in size. Bod still no active disease
October 2015: New brain Met, zapped by Stereotactic rads, watching another spot
Jan 2016: The other spot grew, zapped again. Still on herceptin and perjeta every 3 weeks
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