Vaccine Clinical Trial, may not be able to go

[JillaryJill]

Hi Steph,

I asked about the trial through my onc's nurse practicioner via email and she responded that my onc would not recommend the trial and if I wanted her to elaborate to email her directly. This was the John Hopkins trial, not the trial that you participated in. That trial is low dose cytoxan/ Herceptin/ vaccine and 4 rounds of scans, very intense trial. So my language was too strong in stating she said no to the trial. She is very pro clinical trials, because participation nationwide is historically low and she admires the women that participate in them. I have not pursued asking her for an elaboration of why should would not recommend the trial for me.

I just got done with my treatment and I am feeling insecure about not being treated anymore...sort of a Herceptin withdrawal or something. I don't know if I am reaching for a clinical trial just to be treated again. I have no reason to think that the treatment that I just completed was not successful but I feel with the Stage III Her2, 12 positive nodes at initial diagnosis that I was knocking on the Stage IV door and I want to do everything in my power not to get a reocurrance. My onc is at a large teaching hospital and is very renowned so I do value her opinion. Rush University Chicago was at the forefront of treating patients with Herceptin. Trying to balance my own decisions with my onc's recommendations. Another balancing act. When I first got diagnosed, I made the decision to get a bilateral mastectomy, with expanders at the same time, made the decision to have 6 rounds of TCH, rather than AC -T, then Herceptin. My radiation oncologist and my plastic surgeon has a bit of a disagreement about the amount of saline fill in the expanders prior to radiation, and I had to be involved in that decision. So I have been making my own decisions all along.

Since I am fresh out of treatment, unlike when I was first diagnosed and it was urgent that I made so many important decisions, maybe I need to just enjoy this time of not being treated, collect my thoughts and then think about if I want to participate in a clinical trial.

Since I did not have my chemo/Herceptin before I had my surgery, I feel like I don't know what my response was to the chemo or Herceptin. I had my surgery done at a suburban hospital, then when I found out my complete pathology and node involvement I went to Rush for a second opinion oncology appointment and decided to be treated by them. Rush probably would have treated me with the chemo and Herceptin first and I would have known what my response was. I think that is what makes me so nervous about what is lurking in my body.

Sorry to ramble, but thanks for your support!

[SoCalGal]

Ha ha Steph! Some people still let their docs boss them around. Us tough ol' warriors know we have to be our own boss :-)
I am also looking into these vaccine trials. Spoke w S at the U of W and have a bunch of emails to review. Will discuss w/my onc next week, too. Not sure I qualify. Thanks for updating on your experience!

[Lauriesh]

Hi Steph, I do have one more trip for the final blood draw next week. I sent you a pm awhile ago, don't know if you ever got it.

My husband and I are just flying in the evening before and then leaving after my appointment. With the time change, and getting everything set with our three kids before we leave, it has been exhausting.

I also have had no side effects, and am glad that I did it.

To JIllaryjill, I would want to do everthing I could to help prevent the cancer from coming back. Her2+ cancer can be so tricky. I went five years before my stage 2 cancer came back as mets to my liver, to the shock of my drs, as I was er/pr- and was on no meds for 4 years after finishing my year of Herceptin. My onc told me at my five year check up that I had less than a 1% chance of it coming back and yet here I am.

Laurie