Have you taken part in a clinical trial for breast cancer?

@mssewest, are you considering taking part in a clinical trial? Is this the one you're referring to?
- Clinical Trial of Atezolizumab With Paclitaxel, Trastuzumab, and Pertuzumab in Patients With Metastatic HER-2 Positive Breast Cancer https://www.clinicaltrials.gov/ct2/show/NCT03125928

What things are you considering to help decide whether to take part in a clinical trial or not? Do you have concerns? Hopes?

@mssewest, are you considering taking part in a clinical trial? Is this the one you're referring to?
- Clinical Trial of Atezolizumab With Paclitaxel, Trastuzumab, and Pertuzumab in Patients With Metastatic HER-2 Positive Breast Cancer https://www.clinicaltrials.gov/ct2/show/NCT03125928

What things are you considering to help decide whether to take part in a clinical trial or not? Do you have concerns? Hopes?

Hello, I received the first 3 drugs of the 4 you listed when I did my clinical trial. The 4th drug of my trial was called Interferon-gamma. In my case (I was diagnosed May 2019 with Stage 2b Invasive Ductal Carcinoma: Her2+, ER+, PR+), I endured neo-adjuvant chemo (prior to my partial mastectomy surgery). To this day, I suffer from neuropathy in my toes, even though I applied ice throughout each chemo session to my hands and feet. The Paclitaxel clinical trial regimen seemed the lesser of two evils - my Oncologist also offered the chemo combo called A-C, which sounded worse because it comes with nausea, and I abhor vomiting. Once my chemo trial ended, I had no hair and a rash across my chest that lasted months. After surgery, the pathology indicated live cancer, so the trial combo of Paclitaxel, Herceptin and Perjeta with Interferon-gamma didn't work, which meant I still had to have the A-C post-surgery to ensure a better outcome over the long haul. The A-C made me very nauseous, but it worked. The Herceptin and Perjeta weren't awful, but I only had 4 doses before I was switched to 14 doses of Kadcyla. I was prescribed Tamoxifen and became menopausal from the drugs, so my oncologist switched me to Letrozole (aka Femara) a year ago. Letrozole side effects include joint pain, which I am suffering from. I have taken Gabapentin for the neuropathy, but Gabapentin doesn't do the trick anymore, so I have found better success dealing with the neuropathy by seeing Occupational Therapy weekly, keeping active, overstimulating the nerve endings using TENS and massage, which is labor intensive, but a much more effective remedy long-term. Side effects don't go away as fast as you'd think...choose wisely. I hope this helps you with your decision. If you are a candidate for Kadcyla, I would strongly promote it because it was super-tolerable. The A-C is the gold standard and has been around forever. Avoid getting neuropathy-which is a constant, nagging "stone in my shoe". I chose a clinical trial because I wanted to contribute to medicine and my research about the Interferon Gamma made me think I was going to have a better outcome than I did. Mine was a Phase II trial - I have since been advised by my Stage 4 friend that it is better to save clinical trials for those end of life, last ditch effort decisions. There's no badge or medal for being a guinea pig! I could have saved myself from losing my hair twice and receiving 2 sets of chemo if I had just done the A-C first. Let me know if you have any other questions.

You are a brave soul, there should be a badge of courage award for you. The gift you gave by entering this trial means that future patients will stand on your shoulders. Thank You. I am sorry to hear you are still going through side effects from all of that. I think neuropathy is a gift many of us receive. How are doing now? May I ask, what is the status of your cancer?

I had my first clean mammogram Sept 2021. My next imaging is set for MRI March 2022. I have fears the cancer will return, but push positive thoughts in the way of self defeating thoughts. Hopefully I can keep up the progress and I hope you will stay in touch to let me know your thoughts if you want to. I need that as much as anyone.

Hello, I received the first 3 drugs of the 4 you listed when I did my clinical trial. The 4th drug of my trial was called Interferon-gamma. In my case (I was diagnosed May 2019 with Stage 2b Invasive Ductal Carcinoma: Her2+, ER+, PR+), I endured neo-adjuvant chemo (prior to my partial mastectomy surgery). To this day, I suffer from neuropathy in my toes, even though I applied ice throughout each chemo session to my hands and feet. The Paclitaxel clinical trial regimen seemed the lesser of two evils - my Oncologist also offered the chemo combo called A-C, which sounded worse because it comes with nausea, and I abhor vomiting. Once my chemo trial ended, I had no hair and a rash across my chest that lasted months. After surgery, the pathology indicated live cancer, so the trial combo of Paclitaxel, Herceptin and Perjeta with Interferon-gamma didn't work, which meant I still had to have the A-C post-surgery to ensure a better outcome over the long haul. The A-C made me very nauseous, but it worked. The Herceptin and Perjeta weren't awful, but I only had 4 doses before I was switched to 14 doses of Kadcyla. I was prescribed Tamoxifen and became menopausal from the drugs, so my oncologist switched me to Letrozole (aka Femara) a year ago. Letrozole side effects include joint pain, which I am suffering from. I have taken Gabapentin for the neuropathy, but Gabapentin doesn't do the trick anymore, so I have found better success dealing with the neuropathy by seeing Occupational Therapy weekly, keeping active, overstimulating the nerve endings using TENS and massage, which is labor intensive, but a much more effective remedy long-term. Side effects don't go away as fast as you'd think...choose wisely. I hope this helps you with your decision. If you are a candidate for Kadcyla, I would strongly promote it because it was super-tolerable. The A-C is the gold standard and has been around forever. Avoid getting neuropathy-which is a constant, nagging "stone in my shoe". I chose a clinical trial because I wanted to contribute to medicine and my research about the Interferon Gamma made me think I was going to have a better outcome than I did. Mine was a Phase II trial - I have since been advised by my Stage 4 friend that it is better to save clinical trials for those end of life, last ditch effort decisions. There's no badge or medal for being a guinea pig! I could have saved myself from losing my hair twice and receiving 2 sets of chemo if I had just done the A-C first. Let me know if you have any other questions.

Hi Colleen,

How are you doing? Are you a cancer survivor also?
I am considering it and yes I do have concerns. I wanted to see if anyone had participated and kind of what to expect other than additional scans, Echos, EKGs, etc.

Sincerely,
Sheila