Anybody did University of Washington adoptive T cell therapy?
 

Is there anybody who participated in the adoptive T cell therapy clinical trial from University of Washington?
I would really appreciate if somebody can share their experiences and how they are doing now.

Thanks,
Julie

Re: Anybody did University of Washington adoptive T cell therapy?
 

I think this is the one that Courtney L is doing.I'm sure she will chime in soon with lots of information. She is such an inspiration and always happy to share her experiences.

Ellie

Re: Anybody did University of Washington adoptive T cell therapy?
 

Hi Julie - Yes I am currently finishing up this trial. I go for my last booster vaccine shot in January.

I am feeling great physically (with a little lower back pain) but how the trial is working against my disease is a bit of a mystery. Going into the trial in May of this year I had bone-only disease. My PET right before the t-cell infusion showed bone-only disease as well. The whole time I've been on the trial, my CA 15-3 has been slowly creeping up - causing me some amount of worry. Dr. Salazar has told me that it is within the range that they see as being associated with inflammation from the vaccine, but they can't say for sure. I had my routine brain MRI in September which showed 7 new brain mets. I don't know if these were already seeded and started growing before the trial or if they developed while on the trial but before any immune response developed (if one has developed at all).

The interesting part is that when I went in for Gamma Knife treatment, several of the brain lesions had already shrunk by several millimeters. So I don't know if that was from the vaccine finally ramping up to cause an immune response or if it is from the Tykerb I started.

To add to the confusion, my follow-up PET in Seattle last month showed bone-only disease again (thank goodness) but the SUV uptake values were significantly higher and the report stated it was progression of disease. Dr. Salazar explained that there was no way for them to know whether it was actually bone met progression or if the increased SUV is a result of t-cell activity in those areas. Meanwhile my tumor markers are climbing upwards again.

Here is what I think is going on. When I had brain mets the last time, my tumor markers were normal. So I don't think the spike is being caused by those (which have now been treated). I also don't have the crazy bone pain that I had with the initial bone mets. They were incredibly painful almost all of the time. This time, I have a dull ache in my pelvis and sometimes in my sternum (site of mets). However, this is also where t-cells are produced (in the marrow in the pelvis) and processed (in the thymus under the sternum). So I like to think that my immune system has now ramped up and is doing its thing. I've read that CA 15-3 is also a measure of inflammation and that could be the reason for the spike (mine is now at about 60, normal is below 30).

Anecdotal, I was talking to a non-HER2 stage IV BC friend who went through a vaccine trial and also said that her pelvis lit up on the PET even though she never had any mets there - it was t-cell activity for her too. And she also said that it took about 6 months for the vaccine to actually mount a response and start causing disease regression.

So now I'm in watch and wait mode. My regular onc is switching me over to Denosumab (instead of Zometa) and we are just going to see where I'm at in a few months. I'll scan my brain in January and probably do another PET in February. In the meantime, I'm trying to not get too worked up about tumor markers and am embracing the fact that physically, I feel great. I just ran my first race (a Turkey Trot) over Thanksgiving and I did the Alcatraz Challenge swim this past July - can't ask for more than that!

If you'd like to chat more about the trial, please feel free to pm me for my phone number and email address. I'd be happy to share more with you.

Good luck!

Re: Anybody did University of Washington adoptive T cell therapy?
 

Thanks for the latest info Courtney!

Julie - I too am trying to get into this trial. I hope to start in early February if I qualify.

Re: Anybody did University of Washington adoptive T cell therapy?
 

Deena
I have also looked at this trial even though it means a journey across the big pond.My onc was told that you needed confirmed mets of greater than 1 cm so they could measure/evaluate the response? Is this the case for you?

Ellie

Re: Anybody did University of Washington adoptive T cell therapy?
 

Just to clarify - there are several HER2 vaccine trials at the University of Washington. The one I did involves infusions of t-cells in addition to the vaccine injections. For this trial (see the link in my signature), I do believe you have to have measurable disease. For the trial that is vaccine only, I do not believe this is the case.

Re: Anybody did University of Washington adoptive T cell therapy?
 

Thanks for clarifying Courtney. I notice there are 2 vaccines that use T-cells. To be eligible for the first T-cell trial you have to have already had a vaccine approved by the U of Washington. The second trial I believe is yours but as you say you need measurable disease.
I sincerely hope they will expand their program in the near future as I believe it offers hope for a 'cure'for us all. Waking up the immune system so it can do it's job well again must be the way forward!!

Cheers
Ellie

Re: Anybody did University of Washington adoptive T cell therapy?
 

Ellie - I have the paperwork with the requirements of the study I am trying to get into. Courtney is right, in this study, I will only get the vaccine, not the Tcell infusions. I wish!! For this Phase II study, you have to have originally been diagnosed with Stage IIIb, IIIC or IV, and be NED or with bone only disease at time of entering the trial. I just read through all of the requirements, and I am pretty sure I will qualify after I finish rads. Unfortunately, the doctor who qualified people for the trial will not even look at my file until I finish radiation. I can't start the trial until 30 days after radiation is finished.

Re: Anybody did University of Washington adoptive T cell therapy?
 

Really hope you get into the trial. It was the t-cell component that confused me!! (not hard after chemo) At least you will get a vaccine which is really positive and quite a few women on the board have had a lot of success with it. I will keep my fingers tightly crossed for you.

Ellie

Re: Anybody did University of Washington adoptive T cell therapy?
 

I have the paperwork for this trial as well, and will probably be moving forward with it after a brain MRI the middle of January...

It sounds like a pretty good one.

Re: Anybody did University of Washington adoptive T cell therapy?
 

Courtney,

Thank you very much for a detailed message. I hope this vaciine and T cell therapy will work well and give us hope for the future.

Thanks,
Julie

Re: Anybody did University of Washington adoptive T cell therapy?
 

I found out yesterday that I am officially in the trial!! I start January 13th!

Courtney - When are you going in January for your last vaccine? Wouldn't it be funny if we were there at the same time?

Re: Anybody did University of Washington adoptive T cell therapy?
 

DeenaH,
Congratulations on getting in the trial so quickly...that's great! You sure are focused and know how to get it done! You go girl. Woo hoo.

Chelee

Re: Anybody did University of Washington adoptive T cell therapy?
 

Deena H,

Glad you have gotten into the trial. I am thinking about applying also.

Amelia

Re: Anybody did University of Washington adoptive T cell therapy?
 

Congratulations, I really hope this is a big success for you.
Ellie

Re: Anybody did University of Washington adoptive T cell therapy?
 

Julie -
Have you already done this vaccine trial? I am a little confused about your status.

Or was it another vaccine trial you participated in a few years back?

Re: Anybody did University of Washington adoptive T cell therapy?
 

Hi Steph,

I took vaccine from UW 4 years ago. I didn't develop mesurable immune response at that time. Recently I participated in just the adoptive T cell therapy trial without the vaccine. This trial is for people who participated in the vaccine trial before.

Julie

Re: Anybody did University of Washington adoptive T cell therapy?
 

Thanks, Julie -
That helps. Are you currently NED?
Do you know if you have a measurable response this time with the adoptive T cell therapy?
I am not sure what they look for.

Asking the above questions as not sure why you would qualify for T-DM1 now. Is it a trial?

Sorry we did not get a chance to meet when you were making your trips to Seattle.