HER2 Support Group Forums - View Single Post - TDM1 breathing/fatigue question

Hi Michka,

I had 16 rounds of tdm1 and did land in the er with the sensation of an "elephant" sitting on my chest after round 12 or 13. I too had a complete work up and we ruled out both heart and lungs. The only thing that helped somewhat, was taking a proton pump inhibitor each morning. Somehow for me, part of the effect was relieved when my acid reflux was better controlled, but it did not entirely resolve while on the drug.

I hope this helps! I hope Tdm1 proves effective for you- it was for me!

__________________
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.

06-16-2012, 08:43 AM	#2
Vicky Senior Member Join Date: May 2011 Posts: 137	Re: TDM1 breathing/fatigue question Hi Michka, I had 16 rounds of tdm1 and did land in the er with the sensation of an "elephant" sitting on my chest after round 12 or 13. I too had a complete work up and we ruled out both heart and lungs. The only thing that helped somewhat, was taking a proton pump inhibitor each morning. Somehow for me, part of the effect was relieved when my acid reflux was better controlled, but it did not entirely resolve while on the drug. I hope this helps! I hope Tdm1 proves effective for you- it was for me! __________________ 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.