Immunotherapy trials - let's post our experiences here

Mamiya

Hi! I wanted to start this thread here so that maybe others who are participating in trials for immunotherapy drugs can post and we can share experiences (like many of us did in the "starting chemo in..." threads).

I am 47 years old, diagnosed at 46 with triple negative IBC. I had a good response to the first chemo (carbo/taxol) but not much response and skin progression on the second (FEC). So, my doctor suggested that before we just start trying more chemo (that might not work anyway) we look at immunotherapy. I am enrolled in a single arm phase 2 trial (NCT02536794). I begin treatments on 2/3/16. I will post my experiences here, as I hope others will too.

Lots of red tape up front is my first experience, which I will elaborate on later.

Meadow

Bumping to top of active threads

Mamiya

Thanks Meadow!

So, red tape. So many tests and scans. And an insurance Pre-Certification that should have taken MINUTES ended up taking over a week. Word to the wise: ask up front if your insurance needs to do a pre-cert and get it started early. My treatment has been delayed at least a week as a result of a piece of paper that was literally one phone call away.

I needed blood work, CT scan, bone scan and a fresh biopsy. I had a PET scan the week prior but since not everyone can get a PET I still had to have a new CT for the study.

This is a phase 2, single arm trial so everyone gets the study drugs.

I get my first treatment Friday, 5 February 2016. I will update then!

Mamiya

So I finally got my first infusion today! It was almost exactly like getting chemo, benadryl premeds included. No reactions so I am really happy! They were supposed to take photos of the skin mets and called me when I was almost home so I ended up taking pics here and emailing them and they want me to come back Monday for more "official" pics. It is about five hours after the fact and other than tired and a slight headache I feel NOTHING like the night after any chemo, I feel a lot better. Hoping this is the ticket. Is there anyone else out there doing immunotherapy as a clinical trial?

Geeper

Mamiya- This is great! I am glad you are doing well after your first infusion. I hope that you respond to this trial. I hear many good things about immunotherapy. I saw my onc. nurse today for lab work and she told me she had some patients on immunotherapy trials and that it was working for them. I don't know if you know who Big Ang is (Mob Wives show) but she is suppose to start immunotherapy next week. I'm sure we will hear more about immunotherapy. Cancer sites are saying this is most exciting development in cancer treatment in years. Excited for you!  

Meow13

Please keep us posted on progress. Very excited for you, hope things go well.

Mamiya

Thanks Geeper and Meow, I find it hard to believe that NOBODY else on this whole board is in a trial for immunotherapy because I keep running into people who are in studies! Hey you guys (shouted in an electric company voice)!!!

JanetCO

I am not or was I ever offered Immunotherapy after my diagnosis and starting chemo. I am a little different as my surgeon took my tumor 2.4 out before I started chemo so my chemo is preventative. I have heard from a person I know with a different cancer that nothing was stopping. He got into a Immunotherapy trial and it has worked for him to stop and shrink the cancer. He will still have stem cell transplant at some time soon.

Pretty sure Insurance won't pay for Immunology Therapy unless Chemo doesn't work here in Colorado. Anyone know?

SpecialK

I am a participant in a Phase II Her2+ recurrence prevention vaccine-based immunotherapy trial. My insurance is not involved, all costs (except travel to the trial location) are paid for by the trial sponsors. There is another triple positive BCO member who is also a participant in this trial at a different location, and a number of other BCO members as well. Here is a link:

https://clinicaltrials.gov/ct2/show/NCT00524277

mcmurry2015

I am also a triple negative breast cancer patient. Began clinical trial of opdiva and Ixobepolum. 9 months, not much change and more growth. Taken off trial. Just started taxtere. Awful side effects. I want to start on another trial that is specifically for triple negative. I'd love feed

rdeesides

How do you get involved in a clinical trial? Does your MO recommend you or are there places you can sign up?

Sam0623

I am participating in a few clinical trials which were both recommended to me when I was diagnosed. The involvement varies- one was just a blood sample for young women with BC, and for another I am taking a statin (Lipitor I believe) or a placebo to prevent heart damage because I recieved adriamycin. I'm surprised no one else has responded here- depending on the final pathology after my surgery (I'm getting neoadjuvant chemo) my doctor is recommending either a immunotherapy trial with Keytruda or getting adjuvant Xeloda. I brought up the Xeloda, she brought up the trial.

I also found another immunotherapy trial involving a vaccine. I reached out to the study coordinator myself today to get more information.

So I guess to answer your question, in my case both my MO has brought up options and I am also doing my own research and bringing them up to her. I've called about at least 2 other trials as well- I want to feel like I know what is out there before I make a decision.

I would see if there are any study coordinators where you are receiving care to see what is available. You can also go to clinicaltrials.gov to search (that's what I do) but it does take time to weed through them to find ones you are eligible for.

SpecialK

I found my own trial, although my center does participate in a number of trials, I was not eligible for any of the ones they are currently involved in. My onc cooperates with my Her2 vaccine trial in terms of supplying lab and imaging results ordered by him, as well as his notes from appointments. I have enrolled in some studies through Army of Women, Dr Susan Love's organization, and others I have found on my own. I was also referred by my BS to a study right after I finished chemo that focused on a quantified view of whether mindful meditation had an effect on cortisol (stress hormone) in breast cancer patients. Elevated cortisol is thought to inhibit the immune system.