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Old 08-21-2011, 09:38 PM   #1
Laurie7
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Join Date: Jul 2011
Location: Pingree Grove, Il
Posts: 15
Re: TDM-1 side effects

Hi All...
I too am on the T-DM1 trial...August 30th will be my 3rd treatment..My dose was also changed due to a drop in platelets and high liver enzymes. I also noticed my period was heavier with the second treatment and experienced the nose bleed but not bad. I'm starting to have dry mouth as well. What I would like to know is has anyone experienced difficulty taking a deep breathe or a heavy chest feeling while lying down..this happens to me after the first few days of treatment and usually lasts 3-4 days. Also, this is the first time I'm hearing about the BBB

Laurie
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Laurie :)

*2006..Dx w Stage1 DCIS age32 Had lft breast mastectomy
-4 cycles A/C 12wks..4 cycles Taxol/Herceptin 12 wks (herceptin 1yr total)
*2007..prophylactic rt breast mastectomy
*May2011..was told I was CURED & within 2 days was reDX w stageIV mets to my liver,lungs,&bone
-6wks Herceptin(little progression to liver)
-started clinical trial on July 19th T-DM1....Hopeful!
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Old 08-22-2011, 08:58 AM   #2
Vicky
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Posts: 137
Re: TDM-1 side effects

Hi everyone-

Yes Laurie, I too have had the feeling of an elephant sitting on my chest the first few days after TDM1 treatment, as well as thickening feeling in my throat for a few days. I just completed round 7 and I have an achy-flu-like feeling the first few days, drippy nose/nosebleed, dry mouth and break through nausea on occasion.

But it continues to keep me stable! I had a mastectomy last Friday, came home Saturday and was fit for chemo with TDM1 by Tuesday. Pretty amazing I would say. I continue to feel well two out of the three weeks after I have completed chemo. I truly feel fortunate to be on the trial and continuing on with TDM1, but definitely need to ask my ONC about the BBB and TDM1's ability to cross it.
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3-16-11 dx IDC 4.4 cm tumor, right breast,HER-2 neu 3+++, Stage III
3-25-11 PET scan shows 3 mets to liver and 1 to spine, Stage IV
4-12-11 start clinical trial of TDM1 infusion 1x every 3 weeks.
6-14-11 CT scan after 3 cycles shows NO liver spots, reduced spinal met from 18mm to 13mm and right breast mass from 4.4 to 4.2 cm.
8-12-11 Mastectomy rt. breast.
10-11 scans reflect stable cancer
12-11 MRI reveals area of concern in brain, CT scan reveals 3mm spot on lung. Watch and wait and rescan in a few weeks. Round 13 TDM1 complete.
2-21-12 Scans reveal progression in lungs with 4 new small mets. Officially off tdm1. Start halaven and radiation for single brain met, 1 spot in spine.
3-13 stereotactic radiosurgery for single brain met.
5-31-12 Halaven stopped due to low blood counts. Start tamoxifen and cont. Herceptin 1x3 weeks.
7-11-12- brain mri shows shrinking brain met and no new lesions. Cont. Herceptin and Tamoxifen
10-2-12 Stable tumor markers. Continue Herceptin and Tamoxifen
4-9-13 progression in lymph node under arm and new lung spots. Stop Tamoxifen. Add Xeloda to Herceptin.
6-10-13 Stereotactic radiosurgery to two new brain mets. Stop Xeloda due to lung mets progression. begin Tykerb 7-2-13.
10-29-13 Begin radiation to my lungs and one lymph node under my arm. Stop Tykerb until completion and then recommence.
1-31-14 Progression in lungs. Oophorectomy performed.
2-18-14 Begin Arimidex and continue Herceptin
7-7-15 progression with spots on colon, in pelvic region, and in lungs. Begin Taxotere, Perjeta and Herceptin.
11-15 Switch to weekly Taxol, and continue with Perjeta and Herceptin.
12-23-16 PET scan shows Complete Response with no new spots. Continue on with TPH indefinitely.
3-16-16 Still no evidence of disease, break from Taxol. Continue on with Perjeta and Herceptin.
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Old 08-22-2011, 08:44 PM   #3
Laurie7
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Join Date: Jul 2011
Location: Pingree Grove, Il
Posts: 15
Re: TDM-1 side effects

Hi again...
All my symptoms are pretty mild, and from the way it sounds pretty normal, but the heavy chest feeling bothers me a bit...Vicky, did you mention it to your onc? If so, what did they say? My onc did a CT after the first treatment and everything came back normal, then it happened again with 2nd treatment...Just wondering if its a common side affect...

Laurie
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Laurie :)

*2006..Dx w Stage1 DCIS age32 Had lft breast mastectomy
-4 cycles A/C 12wks..4 cycles Taxol/Herceptin 12 wks (herceptin 1yr total)
*2007..prophylactic rt breast mastectomy
*May2011..was told I was CURED & within 2 days was reDX w stageIV mets to my liver,lungs,&bone
-6wks Herceptin(little progression to liver)
-started clinical trial on July 19th T-DM1....Hopeful!
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Old 11-22-2012, 03:32 AM   #4
michka
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Location: Paris, France
Posts: 858
Re: TDM-1 side effects

I have had my 11th round of TDM1. The dose was reduced 20% round 10.
I would like to know if others are coping with very very dry eyes. Loss of saliva. Sore throat. Dry nose. (although it is often runny!) Sort of bad acne on the face during a week in the middle of each round. If yes how bad is it and what do you do?
Michka
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08.2006 3 cm IDC Stage 2-3, HER2 3+ ER+90% PR 20%
FEC, Taxol+ Herceptin, Mastectomy, Radiation, Herceptin 1 year followed by Tykerb 1 year,Aromasin /Faslodex

12.2010 Mets to liver,Herceptin+Tykerb
03.2011 Liver resection ER+70% PR-
04.2011 Herceptin+Navelbine+750mg Tykerb
06.2011 Liver ned, Met to sternum. Added Zometa 09.2011 Cyberknife for sternum
11.2011 Pet clear. Stop Navelbine, continuing on Hercpetin+Tykerb+Aromasin
02.2012 Mets to lungs, nodes, liver
04.2012 TDM1, Ned in 07.2012
04.2015 Stop TDM1/Kadcyla, still Ned, liver problems
04.2016 Liver mets. Back on Kadcyla
08.2016 Kadcyla stopped working. mets to liver lungs bones
09.2016 Biopsy to liver. no more HER2, still ER+
09.2016 CMF Afinitor/Aromasin/ Xgeva.Met to eye muscle Cyberknife
01.2017 Gemzar/Carboplatin/ Ibrance/Faslodex then Taxotere
02.2017 30 micro mets to brain breathing getting worse and worse
04.2017 Liquid biopsy/CTC indicates HER2 again. Start Herceptin with Halaven
06.2017 all tumors shrunk 60% . more micro mets to brain (1mm mets) no symptoms
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