[CourtneyL]

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!