Re: Treatment Decision Time
 

A friend of mine with bone mets only for 16 years now has had benefit from Navelbine on two occasions several years apart. It was given with Herceptin.

Re: Treatment Decision Time
 

So...no bisphosphonates or rads?

Re: Treatment Decision Time
 

So here is the latest after speaking with both Dr. Salazar at U of W and my own oncologist, Dr. Smith, here in San Francisco. They were both in total agreement that, even if I weren't on the trial, they would not recommend starting systemic chemotherapy at this point. They would watch and wait since some of the bones are improving and only a few aren't. They both agree with the switch to Denosumab to see what it can do.

And they both agree that since systemic treatment isn't really needed at this time, that I should absolutely proceed with the t-cell therapy at this time. Dr. Salazar even thinks that the vaccine and immune response could be responsible for some of the flair up. I don't exactly understand the mechanism of action for this but my oncologist analogized it by saying that it was like dumping lighter fluid on the bone mets - they flared up but they will die down and hopefully go away completely with the t-cell therapy.

So that's the deal. The apparent progression may be caused by the vaccine and immune response itself. It doesn't necessarily mean the vaccine is not working. They've seen this kind of inflammation before and are not concerned. They make it sound so simple and matter of fact. But there lack of concern (not for me but for the results of the PET) really put me at ease and made me agree that it isn't time to bring out the big chemo guns right now.

Thank you all so much for your input. It was immeasurably helpful in helping me to sort this all out. I went in with the right questions thanks to you and that made all the difference in the world.

The plan is to unthaw the t-cells in the next week or so and go for the t-cell injections over a three week period in August. Looking forward to another fun visit with you StephN! I'll let you know when I've got some confirmed dates.

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Rich - even though Denosumab is not a bisphosphonate, the effect is the same, but through an entirely different method. And no rads are being recommended at this time. If I did rads, I'd have to hold off on the t-cells even longer.

Re: Treatment Decision Time
 

Yeah..regarding the bisphosphonates and rads, was referring to Denise's post.

You wrote:

"Dr. Salazar even thinks that the vaccine and immune response could be responsible for some of the flair up."

I would be interested to know if the vaccine protocol includes GM-CSF, G-CSF or similar. The bit I read recently suggested Zometa could block the negative effects of GM-CSF, which is sometimes combined with vaccines.
I talked recently with a researcher who was investigating using Cytoxan to block unhelpful immune responses to cryotherapy so that helpful responses could turn local therapy into something with a systemic benefit. He seemed to think inflammation was helpful to the immune system. Strange..since inflammation has been considered largely negative to cancer patients.

Re: Treatment Decision Time
 

Rich: She has had Zometa but never any rads. She has been on Herceptin since 1998. She has had many chemos and is being encouraged to try a trial with LY2382770. She has been fortunate enough to never have any bone pain. Her markers always have stayed on the high end.

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Denise,
So she had Zometa and progressed?

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Rich: She has been on Zometa every 6 weeks for a number of years and has had some progression. Not new areas in the bone, just increased activity. Her recent set of scans showed two lymph nodes in the chest. Onc relies on her tumor markers a lot.

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Courtney,

Glad things are settled. Thanks for the update and the valuable information you've shared with us.

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Re: Treatment Decision Time
 

Courtney,

I agree with what Brenda said. Did they say anything about a biopsy? The nature of the mets may have changed. Do you think they will biopsy? There is some type of inverse relationship between estrogen and HER2.

Amelia