[jml]

Hi Friends~

Thanks so much for your sweet notes of encouragement.
Just got home from the Infusion Center -
No treatment again today b/c my counts have continued to drop - Hgb & Hct dropped a bunch, my platelets have dropped a bit, but more significantly my wbc's.
I've been feeling a little bit off the past few days and running a low grade temp.
BUT, I did get Herceptin...and I DID get one dose of Halaven two weeks ago - so strange how I COMPLETELY forgot and was truly confused about why my hair started falling out in the shower.
I feel sad for my bone marrow and that it's having such a hard time recuperating and just not bouncing back like it used to.
So here's the plan...
Today - Herceptin + started Neupogen (3 days)
Tomorrow - 2nd shot of Neupogen
Thursday - transfusion - 2 units.
It sounds like a lot, but I'm so glad we have a plan in place. In fact, if my wbc's come up w/the help of the Neupogen, I may even get Halaven on Thursday!
Cross fingers, toes and bone marrow!

Re: Clinical trials - I've done 3 now, in the past 9 years, one being the TDM1 EAP...the last trial, the PI3Kinase study was by far the worst experience.
I hate to even say that, because I like to think the nurses and the staff are doing their very best, but the amount of frustration and level of miscommunication just added up to sloppy research at best, and that is not good. I've thought about writing to the Sponsor but it's just seems like so much to have to deal with while I'm still trying to get this current treatment plan underway.
I hope my experience won't discourage you from participating or pursuing really good study drugs that are out there - like TDM1 through the EAP.
You just have to be vigilant that the study staff is working as hard as you are to give you every possible chance to get through the screening process and stay on the drug for as long as it is benefitting you. Unfortunately, there is no/very little room for flexibility or creative interpretation of the inclusion criteria and in my case, I think this Research group has so so many studies running concurrently that the nurses don't/can't keep all the details straight.
It's of course helpful if there's someone close to you that knows your treatment history and really understands research - fortunately for me, my sister works for BigPharma and did absolutely everything, short of chemo, to make sure we all stepped carefully forward with each part of the process.

Also, I think I have a really great team of primary docs/oncs - and the difference in the level of care that I receive from docs that have known me for 9 yrs vs. 1 yr is significant. Lastly, we are a rare breed - this group of BC survivors is without question the most well educated & informed population of BC fighters that most nurses or people in the in the medical community will come across, who are accustomed to participating in our care, questioning our options and really driving the bus.

Gonna take a little nap now - feel a little off & probably running a lil low grade temp again, but FYI -my TCM doc (traditional chinese medicine) said there's research to support that a fever is actually beneficial in the fight against the monsters, so if I can ride out the discomfort of a low grade fever, it would be a good thing.
Of course we have to be smart about it & if my temp goes above 100.5, it's time to intervene.

Hope everyone's week is off to a great start~

Keep the Faith

Jml