Immunotherapy and clinical trials

Byrd11

Hi All,

My mom was recently diagnosed with stage four metastatic breast cancer. When she went to meet with the oncologist they did not suggest doing any further scans to see where exactly the cancer was in her body, they only went off of a chest scan that had been done a few weeks prior. The doctor suggested my mom follow a hercepton and taxoll chemo treatment (pardon if I spelt those incorrectly). Since our visit to the oncologist my mom was having headaches and went to her family doctor where they did a scan and found the cancer has traveled to her brain. Now that they know it's in her brain they have completely changed their original treatment plan. This really makes me doubt the oncologist we are working with. I'm questioning why she didn't do a scan when we first saw her and got my mom started on the proper treatment from the get go... When we brought up clinical trials she had a negative response to them and sort of brushed the idea aside. Which now, because of my doubts with this doctor, I'm wondering if I should explore this more with another doctor. Is there anyone here who has experience with clinical trials or doctors they might recommend? My mom lives in London, ON but would be willing to travel. I hear wonderful things about Princess Margaret and Sunnyside.

I regret that my mom is sick and that I have to post here, but I am deeply grateful for this community and I look forward to contributing as best I can.

Mamiya

Byrd11,

The discovery of brain mets would change the treatment plan for any doctor. Typically brain scans are not done unless there are symptoms so I wouldn't dwell on that too much. So, what to do now? The first priority has to be to address the brain, that would be the most dangerous of the locations for the cancer to be. Likely some sort of radiation will be the plan for that, probably along with a systemic therapy like taxol etc. You should ask about and research clinical trials, but know that the brain mets will need to be stable before most trial will even be an option. I wish you and your mom the best, and keep reading and sharing here, there are so many smart people and so much good info.

JohnSmith

Sorry to hear about your experience and having to join this group.

While I can't suggest doctors, I can suggest some resources for finding Clinical Trials. You'll need to know as much of her Pathology as possible. i.e. Breast cancer subtype (IDC, ILC, IBC, etc.), biomarkers (ER, PR, HER2), etc.

1. Cancer Research Institute's: Immunotherapy "Clinical Trial Finder"
If you prefer, you call (toll-free) 1-855-216-0127 to reach a Clinical Trial Navigator who will help identify appropriate trials.

2. NIH Clinical Trials: ClinicalTrials.gov

3. Breast Cancer Trials: BreastCancerTrials.org

Byrd11

Thank you, John and Mayima. I appreciate your prompt response. This whole experience is incredibly scary and overwhelming. I'm going to continue to be patient with the oncologist (I am a tad reactionary - it's often easier to look to blame someone than to process the reality), and learn as much as I can if we do explore the clinical trial route.

Byrd11

Hi All,

I have another question about trials, as I've been having a hard time processing what might be the best next step. My mom is starting radiation tomorrow and chemo right after. She has expressed quite a bit of interest in a trial, but we're unsure about when she could start one. Does anyone out there know, if she should go through radiation and chemo before starting a trial, or if it's best for her to start one before chemo and radiation? Her doctor hasn't been the easiest to reach, and we're all a little confused about what is the protocol and timing for joining trials.

Byrd11

After having re-read your initial response Mamiya, it seems she should go through radiation prior to engaging in any sort of trial. I tend to get a little overwhelmed when searing for a trial, because of the clinical terminology, so it's been a little unclear to me as to when she should, what she qualifies for, etc…