Squeaker

I'll share my thoughts on this. First and most important - it's exciting to see this happen. MDA has done a great job of assembling an intl faculty. Since it's so close to San Antonio Symposium, I do worry that attendance would maybe suffer w/budgets so tight these days. Clearly, the medical profession needs to tune in to our plight better. Education/advocacy from Peer to Peer ...that's a cirriculum/conference thing this event addresses very well!  Prof to Pt or Pt to Pt or Educational Advocate to Pt is a whole different world, I think to still be defined. My medical team feels that while MDA has the prime team, they are not always the best for open and equal collaboration among other facilities & peers.  I wonder if education and advocacy for the 3 other groups I mentioned above is best served by some group stepping out from the umbrella of MDA to seek a focused and collaborative mission on education and advocacy. Maybe this is the place to start. Certainly questions for smarter people than me to ponder!  I'll look forward to seeing the outcome of this event.  Happy weekend All!

Hi Jinan - TMs remain a mystery to some degree for me  too and I've been at this for 4 yrs in another few weeks! So don't feel alone!!

Here's the simple layman's view - There are different marker tests done on bloodwork. Mine are CA 27-29 and CEA. The mere fact that your Mom's numbers are going down is GOOD news. It shows evidence that the disease is less active. Yes, they can go up again and that's one of the tools her onc will use to evaluate her status as she progresses through treatment and hopefully achieves a stable status.. That said, there are those like me, who don't really show elevated TM numbers with active disease.  I was confirmed w/a recurrence in August and the only hint was my numbers on both tests were at the high mark of normal over a 4 mo period. We confirmed suspicions w/a PET. These tests will probably continue throughout her treatment, so view them as just one piece of a complex picture.  GOOD LUCK!!

Lloyd - Just as those who've mentioned it above, don't forget that radiation is the standard 3rd leg of this IBC race. It's the element that should clean up any residual disease and really lays the foundation in some ways for 'where to next?' ... back to chemo or forward to NED. Hopefully, between the surgical path report and the radiation results, you both will see clear options ahead. Best of luck to you both.  Squeaker

Bailey - I started a reply the other day and then got called away. This is my first chance back, so I apologize. I first learned about IBC from my best friend in college - we're grads from Eugene. Who knew I'd join the club so many yrs later!!  Anyway, you should probably ask your MD for a referral to a breast specialist in the Breast Center up 'on the hill' there. My friend was treated there, but had additional help from Fred Hutchinson up in Seattle. Remember, even if this just turns out to be an imbalance, you need the experts on your side NOW. If this doesn't work, PM me. I have another friend who's a NP at a woman's health clinic up on the hill and maybe she could pass along a few names?  Thinking good thoughts that you'll get the answers you seek.

Squeaker

Hey Ladies - Happy Fall out there. Foggy here in the mountains this AM. It's so calming, I love it!

I was dx 11/04 w/IBC on my RT side. Did 8 rnds of AC/T, dbl mast and rads. Only 1 node was taken from my L side in surgery. That was clean, yet here we are several yrs later w/ it now spread on my left. 4/13 nodes were pos after surgery.I am trip neg, although path on new tissue suggests it may now be ER+. Go figure. They are retesting, since it's not often it morphs that way ... or so I was told.  Time between then and now has been uneventful. 3 mo checks, TMs and a pat on the fanny as I waltzed out the door. My TMs did not spike w/this recurrence. They remain high normal - 35-37 on CEAs. Onc says he'll continue to do TMs since I'm obviously in a lower range??!! 

I started the new drugs this past week. Carbo-taxotere-zometa. Not bad, just slight headaches and flu-like feeling in the AM. Claritin is the new wonder drug for muscle/bone aches. 1 @ day and so far, no problem. I used Glutamine before and that was just OK. I hope this will carry on as long as possible. 1 down 17 more to go!

I think it's crucial for us all to check our scar lines and skin on a regular basis, but don't forget your neck, underarms, et all as well.. We need to know what our own bodies tell & show us. If something doesn't feel right - ask when you see your doc next.   

So much for my Sun AM thoughts. Enjoy your day.

Patrice - Your first apt is hard, hands down, just hard. But it's also the first step in regaining some control over the roller coaster you've been on. If you can take someone with you for support and a second set of ears, you most likely will be glad you did. The doc should go over all your test results to date that he has access too. If he doesn't have them all - make notes to get the missing ones to him. He's the new captain of your treatment team. He's there for as long as you want, but he needs access to all current info. He'll describe the overall treatment plan, the drugs, the timing, surgery and radiation. Ask him about tials you may qualify for - important to do before you start chemo. Remember IBC is best treated by those who are experienced w/it and are current on protocols. Bring a notebook to write this all down in. You can do this ... we're here to help too!

Squeaker

Bette - Take it from all of us  here... the shock & numbness fades as you begin to get your head around this news. You can do it ... you must ... for yourself, Tom, your family and friends.  The circle just gets bigger from there!  We've all been there, the fatigue, anxiety, the treatment. It's all very hard. Please be gentle with yourself as you get into the cycle of another battle. WE all fight this IBC fight for the women who come behind us as well. We're here to prove  every day that we're doing it, Stay strong.

Squeaker

This is mainly to my IBC vet sisters ... Anyone had a recurrence in their

supraclavicular nodes??  Waiting for results from Tu biopsies, but It's not easy!!

Came home from vacation last Fri to hear I'd flunked my annual PT scan I took

before I left. Still, I'll deal with what I need to deal with ... just like we all do, right?

Just curious if someone else has had this experience.   ~Squeaker

FISTS UP, STEPH !

Oh Ladies ... you are all such treasured inspirations to me and others. While I continue my journey on a stable IIIB platform, I check in here always to see how you're all doing. Familiar names are getting smaller in number, but know you are all cared for from near and far!

My offering is from a neighbor, a hospice nurse. While talking about a friend nearing the end of her journey last Fall, I was concerned about small kids about to lose their Mom. Rhonda suggested Build A Bear shops. You can apparently get personal recordings in the bear, so kids could have something to hang onto ... a familiar voice and a comforting bear. I know they're not inexpensive, but I thought it was a cool idea for little people. I wish you all sunshine and strength every day.