IBC questions

[sarah]

Hello,
As an HER2+++ person with a friend with IBC, I feel more comfortable asking IBC questions here than on an IBC site where I would feel like a stranger - you're my family!
I have a couple of IBC questions:
1. who's the Dr. Slamon for IBC? in other words who and where is the best and most knowledgeable people?
2. Do you feel supplements have helped you and if so, which ones do you think are good for someone who is ER- & PR-?
3. my friend will join a tyberb trial here in Marseilles which is very exciting and I'm wondering if there are any supplements that would interfer with it? or increase its efficacy?
I know next to nothing about IBC except that it's aggressive so I'd appreciate any and all information so I can get up to speed on it for my friend's sake. We support each other through our HER2 and chemo treatments.
thanks
sarah

[Sandy H]

Where this is a trial it is recommended not to take any supplements, over the counter or prescription drugs without checking with the oncologist. He will then have to check the protocal before letting you know. When I had severe diarrhea I had to call him and they got the big book out of 500 pages or more and went to it to find out what they could give me. If it wasn't there then they would have to call the drug company. I hope this helps. Wishing your friend well and she is fortunate to have you for a friend. I have had it for nearly 6 years so if I can help feel free to e-mail me. hugs, Sandy

[Krysti]

Dear Sarah,

The "Dr. Slaymon" for IBC treatment is Dr. Christofanelli at M.D. Anderson. He just opened up the new IBC Center there. Glad your friend has you there for her to help in her fight with the beast!

I left NED land last week and I tried to get on a Tykerb study this week, but no luck - one just closed and one hadn't opened yet that I would fit into - all others needed more chemo after recurrance...on to KOS-1022 and Herceptin.

Krysti - Indy
dx IBC bi-lateral 3/05, ER/PR-, Her2+
4 T/4 AC dose dense
bi-lateral MRM 7/05, nodes negative
48 rads/2x per day
Herceptin 12/05 late because of bad tests
10/06 spots on lungs get bigger
Clinical trial starts 11/7, Herceptin and KOS-1022
May we find the cure!

[sarah]

Thank you Sandy and Krysti for the information.
I'll pass the info about supplements on to my friend and also the name of the expert.
Krysti, I hope you get in a trial soon, it sounds like a very promising drug that all of us with HER2 would also like to be on.
My friend goes for the interview Nov. 9th and we'll see how it all goes. I think it's wonderful she found a trial and one only 2 housrs away from where we both live.
Good luck with you health
Thanks
sarah

[madubois63]

If God forbid, the IBC came back - Tykerb is next on my list. My girlfriend is having great results so far (not IBC - bc spread to the brain)...As to supplements - check with your onc. My onc center offers a nutritionist...

[sarah]

Hi Mary Ann!
We're all thinking of you. You're such an inspiration to all of us. so courageous and with such a positive attitude.
Here in France, apparently, brain mets or IBC make you eligible for Tyberb trials. Let's hope it also opens up very soon the way Herceptin has.
Good luck with your transplant, keep your strength up. You're so sweet you must be everyone's favorite patient!
luck and love
sarah

[vickie h]

Hi Sarah,
I have been on the Taxtore/Taxol/Carbo/Herceptin/ Avastin in differing doses at different times for almost 3 years. I started with a new Onc in July 06 because the cancer was spreading across the lymph nodes in my chest and neck and paratreacheal areas. She is phenomenol and will only see women , with BC her specialty. I have IBC and after 3 months with her on a new regimine (I also don't qualify for Tykerb because of no AC chemo) Navelbine?herceptin I had a PET and CAT scan done last week. For the first time in 3 years (after being given a 2% chance of surviving 2 years or less) my scan came back completely clean. I know I have been blessed with a miracle from God, but I am convinced that he sent me to Dr. Linnea Chap in Santa Monica because my other Onc was going in a different direction completely. I would go to her site, one of which is Premeireoncology.com or google Linnea Chap and you can see what's there. She was voted on of the top 10 breast cancer doctors in America in a national magazine, Redbook. I wish your friend the best and will pray for her guidance and healing. Love, Vickie

[sarah]

thank you Vickie, I'll add the name to the list of people to be in touch with.
thanks
wishing you continued good health
sarah