a big thank you and some neuroses

[Joy]

Thankyou, thank you, thank you so much for all of your kind words and great thoughts. I have made notes for my onc visit on Thursday. I am excited to see some creative approaches that have been mentioned by some of you.

To answer a question, I had met with a interventional radiologist in the spring and they had, at that time, ruled out RFA due to the number of tumors (and possible locations/sizes-if I remember right). Also we had collectively discussed SIRspheres. The concern with that was that due to past tumors and treatments there is some cirrhosis and the SIR spheres can afffect healthy tissue to some degree. We were being cautions about that. None of these were ruled out forever, but for now I am thinking these are not too realistic. I am curious about Cyberknife and have begun looking at that. I may not be currently eligible, but possibly the future. I appreciate the suggestions that brought this back on the radar.

I stayed up too late in a crazy emotional state last night researching and overthinking. You all know what a great combination all that is. I have been curious about a biopsy as I am worried that the HER2 status may have changed. I have had a lot of herceptin over time and tykerb. We tried the DM-1 and it isn't working either, so maybe that receptor status is now negative. Then I started thinking that maybe my hormone status has changed from positive to negative as well. Then I started freaking that I might be a triple negative after being triple positive all of this time. Is that at all possible? Could all 3 have flipped? And is resistance caused by the flip or is it sometimes another change that fuels resistance? This is what ran around my head most of the night. The idea of losing 2 big families of options is really frightening to me. What are the odds, for real?

Then I was wondering if I had done something to interfere with the DM-1 to make it less effective? I don't know what exactly, but I am willing to entertain that. And I have to call the coordinator, but I am assuming I will be pulled off trial. I mean would it be silly, even if possible, to give it a smidge more time? Actually, now that I'm rambling I don't want any more progression so it probably would be silly. SEE how crazy I am?

Again, for all of you smart people here, I would love any insight into the odds of triple pos becoming triple neg. And anything else you have come across. I am still doing research on my own and I am good at it, I just don't want another bleary, teary-eyed, heart palpitatey night. I don't want that for any of us. I don't want this disease for anyone. I am feeling like a 9 year old whose favorite phrase is, "It's not fair."

[chrisy]

Dearest Joy,

I guess being up all night researching-worrying-whatifing probably makes you long for the days (nights) when you were just up cleaning the house all night from the steroids.

You have had a lot of different treatments - and as you know cancer can be tricky and when you shut down one pathway, it will find others. Sort of like throwing rocks in the creek - you have to block off the whole darn thing.

So I can see why you would wonder if getting a new biopsy is in order - that's a valid question and something I would pursue (in fact, I've considered it myself). This would give you more information to play with, for sure.

Actually, I thought I'd recently seen something posted here about herceptin RE-activating ER +. Or I might have dreamt it. But you know that "our favorite study" with blocking all the pathways and completely stopping the cancer began as studies trying to restore tamoxifen efficacy after acquiring resistance. My point is, hard to know what's going on after fighting on so many fronts.

In the meantime, let's not get all crazy...easy to say I know.

Another thing you might consider, although it is not ASCO approved, is a cell assay test in which they take a tissue sample and actually try different chemos to see which ones are most effective in killing the cells. I think one of the places that does this is called "Rational Theraputics". The test might be costly and may or may not be covered by insurance. But again, could provide helpful information.

I don't really know how much/how many lesions you are dealing with. But keeping on top of local treatments may still present some options. Esther recently had cyberknife on a single lesion in her liver. She had to push for it, but it may be worth looking into.

As for systemic treatments, I know there are always trials you can look into...but then they are trials. If you indeed have progression on the DM1 they will probably DQ you from that trial. But if it is not working, it is time to move on anyway.

Have you tried Ixempra?

Many prayers for you, Joy. You are my hero and I love you. Now go get that dumb cancer and squash it.

[chrisy]

Hey Joy, I'm not a psychiatrist (and never played one on TV), but I think that neuroses have to be unjustified and irrational. I don't think you are neurotic, just justifiably freaking out a bit.

I prescribe some dark cbocolate and repeating the following:

Breathe in
Breathe out

Much love
Chris

[Barbara H.]

Hi Joy,
I think it would be a good idea to have a biopsy to learn more about your tumor. I had a bone biopsy a year and a half ago for exactly that reason. My oncologist wanted to see if the cancer had become ER+. Unfortunately, they could not get enough of the sample to find out this information.

I am sending my thoughts your way and hope that your team will find a treatment that works.

Best regards,
Barbara H.

[Rich66]

I went to the Rational Therapeutics site and am pretty curious about it.
http://www.rational-t.com/default.aspx
Relies on a "living" cell sample that has specific time constraints from sample to delivery. So..I'm thinking a very regimented biopsy setting would have to happen. Looks like it would cost $3,500 out of pocket. An extra $500 for individual consult. I filled out a contact form. Unfortunately, at one point it asked if patient could provide sample after 4 or so weeks without chemo. I hope this doesn't mean chemo invalidates sample.

[jones7676]

I don't know the answers...but I do understand how you are feeling. I just wanted you to know.