Fam-trastuzumab deruxtecan and Hair Loss: What Users Say

• SLJ...
• November 30, 2023

Fam-trastuzumab deruxtecan for Breast Cancer, Metastatic "Have had 3 treatments. The treatment was presented as chemo 'light.' But it knocked me down pretty bad anyway. It takes at least 10 days to recover. This includes a lot of extra pills to make it bearable. Also was said, less hair loss. Well, I lost 90% again. It is true that some side effects are less intense. But now I have to endure this treatment without the knowledge of knowing that you can stop and recover after 7 or 8 treatments. I do think it works because my spine pain is gone, but scans have to confirm. Reading here that the dosage can be lowered gives me hope because this will be difficult to uphold. Don't know what that will do to the effectiveness though..."

• mar...
• Taken for 1 to 2 years
• February 9, 2024

Fam-trastuzumab deruxtecan for Breast Cancer, Metastatic "I have been on this drug for 15 months, lost my hair after 1 treatment, starting growing back after a month. Right now, I have neuropathy pretty bad, other than that, can't complain. My PET scan showed 2 new very small spots on my left ribs, and another on my lower spine. I will get another PET in 3 months and go from there. May have to change chemo, been through a lot of it. It's been 5 years and 3 months, been metastatic to the bone."

• TGB...
• Taken for 6 months to 1 year
• November 1, 2022

For Breast Cancer, Metastatic "Although this drug does appear to work, the supposed description by clinicians of 'well tolerated' needs to be taken with several large grains of salt. My experience on this drug, two times now, has been utter misery. The GI damage this drug causes makes daily functioning impossible. The first time I tried this, I vomited so frequently over six cycles that a hernia appeared on my scans. The second try, I discovered that massive hydration greatly reduces vomiting, but then the bloating caused is so severe the skin on my abdomen has very literally torn apart. Tack on the total hair loss, fatigue, and weakness, and this drug will make one question if it's worth continuing to exist if your existence is so miserable."

• mar...
• Taken for 1 to 2 years
• February 9, 2024

Fam-trastuzumab deruxtecan for Breast Cancer, Metastatic "I have been on this drug for 15 months, lost my hair after 1 treatment, starting growing back after a month. Right now, I have neuropathy pretty bad, other than that, can't complain. My PET scan showed 2 new very small spots on my left ribs, and another on my lower spine. I will get another PET in 3 months and go from there. May have to change chemo, been through a lot of it. It's been 5 years and 3 months, been metastatic to the bone."

• Ano...
• Taken for 1 to 6 months
• April 3, 2025

Fam-trastuzumab deruxtecan for Breast Cancer, Metastatic "Had done #6 cycle and dosage had reduced to 80% after the 2nd infusion due to liver dysfunction. The side effects are bowel system haywire, nausea, constipation, diarrhea, skin rashes, body heat, hair loss, and so on. The side effects are not getting better after each cycle. So helpless!!!!"

• Ano...
• Taken for 1 to 6 months
• April 3, 2025

Fam-trastuzumab deruxtecan for Breast Cancer, Metastatic "Had done #6 cycle and dosage had reduced to 80% after the 2nd infusion due to liver dysfunction. The side effects are bowel system haywire, nausea, constipation, diarrhea, skin rashes, body heat, hair loss, and so on. The side effects are not getting better after each cycle. So helpless!!!!"

• Pus...
• Taken for less than 1 month
• May 27, 2023

Fam-trastuzumab deruxtecan for Breast Cancer, Metastatic "I experienced stomach pain and fatigue during the first week. After week three, my hair started to thin, and my blood count is very low."