Fam-trastuzumab deruxtecan for Breast Cancer, Metastatic User Reviews

• Emi...
• Taken for less than 1 month
• February 5, 2023

Fam-trastuzumab deruxtecan "I took this drug under pressure from my doctors. I have been through many protocols in the last 6 years: Fulvestrant shots, letrozole, tamoxifen, ACT, CMF, HERCEPTIN, XELODA, +++ AND A LOT OF RADIATION. I wish I had trusted my own instincts and refused to even try this drug. There comes a point when no more means NO more. But I took this dose, probably enough to harm an elephant, and I have been sick ever since. There was no concern for the quality of life that I was still able to maintain, but had to try this big money-hyped drug until the next one comes along. Plus, very hard to find any, if at all, the negative clinical trial info. I guess every one of the less than 300 patients (have only qty I found) came out with flying colors. Not enough honest patient info on this drug. May be great for new and young patients. But for those who ran the marathon already, they need to do some real clinical trials before they give us mega doses and take what QOL we had left."

• Suz...
• Taken for 1 to 2 years
• May 15, 2025

Fam-trastuzumab deruxtecan "Been on Enhertu for one year. I have low HER2. Recent CT scans show no significant changes (remission). The lesion on the lumbar vertebrae resolved, same with lymph node (per PET scan done 9 months ago). For the first 7 to 10 days of each infusion, I have severe fatigue, some nausea, and lack of energy, but I force myself into moving no matter what. I try to squeeze in naps too. I work full time because of medical benefits. Overall, I feel 'toxic', neuropathy controllable. I keep telling myself it's better than going the 'other way'. I'm also on an estrogen blocker too, so I am a hot mess. Hair is slowly growing back but a fraction of a millimeter/month. I am on it till it stops working or I can't tolerate it anymore."

• bem...
• Taken for 1 to 6 months
• June 13, 2023

Fam-trastuzumab deruxtecan "Had 2 treatments with Enhertu. The side effects were bad and did not go away for a long time: dizziness, jitteriness in the entire body, fatigue, weakness, diarrhea, sick stomach, felt unwell all over and inside the body. Never, never would have another treatment with Enhertu!!"

• Bet...
• Taken for 6 months to 1 year
• July 26, 2024

Fam-trastuzumab deruxtecan "I have received treatments for 6 months. My liver lesions have all but disappeared. All of my lymph nodes shrank or healed completely. Side effects have been minimal, especially compared to the weekly chemo I was receiving. I have pretty severe fatigue and mild to moderate nausea for 5-7 days, my blood counts have stayed stable. I'm honestly not sure of the dose, but I am going every 21 days and will continue it until it no longer works or side effects are unbearable."

• SLJ...
• November 30, 2023

Fam-trastuzumab deruxtecan "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 6 months
• August 13, 2023

Fam-trastuzumab deruxtecan "I have been on Enhertu for a little over six months. I found it more tolerable when the dosage was decreased. It was good not to have the constant diarrhea I had on a previous drug. You can feel pretty blah a week or so after the infusion, but you get used to its 'schedule' in your body. I was obviously encouraged by the shrinkage of the tumors and hope this continues. I was happier before I began getting a 'tight' feeling in my lower legs, but so far so good. I have recently had a break from the treatment, as I realized it is possible to increase the quality of your life by doing this from time to time. I worried about how the next infusion post-break would affect me, but I haven't had that bad a time. The problem I encountered sadly was that halfway through the break I caught a viral cough which did not have time to clear before the next due infusion. Such bad timing. I am aware that I am on this drug until the side effects or the tumor create a serious problem."

• Ano...
• Taken for 1 to 2 years
• April 19, 2025

Fam-trastuzumab deruxtecan "Have been on this for 16 months, and it is working on the cancer that traveled to the liver. At first, nausea regularly, but that has been virtually gone for 8 months. Fatigue is the big issue faced daily. Sometimes takes me down. Cancer markers have dropped from 250 to 45."

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

Fam-trastuzumab deruxtecan "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!!!!"

• Mal...
• Taken for less than 1 month
• March 19, 2024

Fam-trastuzumab deruxtecan "I had a response/reaction during the first dose that required stopping infusion halfway through. Emergency team came. Received rescue medication and evaluation in the ER. Ruled out cardiac event. Went home okay. Side effects included: profound fatigue, nausea, dizziness, malaise, mouth and nose sores, persistent bad taste, indigestion. By day 12, felt better and was able to do short walks, light social activities, sewing, light gardening, etc. Side effects above persisted but less. Second infusion 21 days later. Received full dose but given at slower rate (over three hours). Tolerated well. Side effects so far (day 0-7) post-infusion are heavier. Extreme exhaustion. Difficult to be out of bed. Nausea, bad taste, indigestion. Vertigo, dizziness, malaise."

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

Fam-trastuzumab deruxtecan "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."

• Per...
• Taken for 6 months to 1 year
• December 4, 2023

Fam-trastuzumab deruxtecan "I've had Enhertu infusions for 10 months. Experienced constipation, fatigue & hair loss. I did have my dosage lowered slightly which helped side effects. Hair did grow back before complete loss, constipation side effects were manageable with magnesium citrate supplement. Cancer responded favorably but now after 10 months may be subsiding."

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

"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 "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 "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!!!!"

• Lee...
• Taken for 1 to 2 years
• August 8, 2023

Fam-trastuzumab deruxtecan "I am on a trial and have had 24 infusions. Most of my mets (brain, bone, and lung) have either shrunk or are stable."

• Anonymous
• Taken for 1 to 6 months
• January 1, 2025

Fam-trastuzumab deruxtecan "100% clear no meta after four infusions every 21 days. I have meta in liver."

• Ang...
• Taken for 6 months to 1 year
• August 15, 2023

Fam-trastuzumab deruxtecan "Primary persistent side effects are dry mouth, change in taste, fatigue, some nausea. Hair loss but some regrowing even during treatment. Mixed results on effectiveness."

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

Fam-trastuzumab deruxtecan "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."

• Eli...
• Taken for 6 months to 1 year
• January 13, 2024

Fam-trastuzumab deruxtecan "I am coping okay, but there are times when symptoms are pretty bad. Fatigue and appetite are not so good. Hair thinning."

• bem...
• Taken for 1 to 6 months
• June 22, 2023

Fam-trastuzumab deruxtecan "Side effects became worse after each treatment, and the side effects lasted for a long time."