Out of GW..... trial, now on Navelbine/Herceptin.

mamacze · 10-05-2005, 06:44 AM

Dear Sweet Angel,
Your body and soul must be absolutely wrung out with exhaustion; going nonstop since 2003 and taking care of your 4 children. How fortunate for your children that they have a mama role modeling such a strong fighting spirit! How old are your wee ones?
You are right to sit back and reflect. Take stock in your situation...weigh out your options.
I will share some thoughts ... first, navelbine and herceptin worked great for me and many other sisters on this site. I am her2+++, er/pr -, with lots of skin involvement; altho they hesitated to call it IBC. I had the combo for 6 months, and am now on herceptin alone, along with the added boost of the tumor vaccine from Seattle.
Which brings me to my second thought; you may want to call the docs in Seattle and ask for their opinion. Perhaps even fly out for a second opinion. Dr. Devon has posted on this site (do a Dr. Devon search, you will find her)... and check out the clinical trials board for more contact information.
Finally, you will be more present to your children if you can get yourself some rest. I also have 4, and against my instincts I took a couple weekends away with my hubby; it was just what we both needed; it was precious private time to talk and melt down; and at the same time recharge batteries.
I will hold you up in prayer, Martha and ask the good lord to hold you in His arms when you are exhausted and give you spiritual wisdom and strength to do what is best for you and for your 4 beautiful children.
Love and hugs,
Kim from CT

StephN · 10-05-2005, 12:30 PM

Hi Good Mama -
And you ARE such a good Mom to you kids, I am sure.
Navelbine has been a very good drug for many of us who are not Invasive BC, but have had to fight mets.
I am an example where it worked well after 7 months of weekly treatment with Taxol and herceptin. Been NED for over 3 years with this combo.
Sandy may answer you here with her drugs that have worked over tha past five years.
A weekend away would be a good idea - go to the mtns or to a place set in nature nearby. There are few other stimuli this way and you can recharge.

Sandy H · 10-05-2005, 01:37 PM

First of all to clarify what Lyn said IBC is Inflammatory Breast Cancer and IDC is invasive ductal cancer. Both very different. I have been on only a few chemo combos for IBC. My oncologist and I were talking about this just a few weeks ago. I was diagnosed in March of 2001. Her2 pos. ER/PR neg. stage 111b (as all IBC is stage 111b or stage 4 if it has spread to organ or bone) This is what I have had for chemos. First was Adm/Taxatere, surgery, only 5 rads (because of skin mets) then Herceptin and Taxol has been the miracle drug for me. We tried Navelbine and then Xeloda neither one worked for me. Also added carboplatin to the Taxol for a couple of times then back to just Herceptin and taxol. This has all been for the skin mets that keep popping up. I stay on the chemo just long enough to clear up the skin mets and then we stop. My oncologist is very protective of my quality of life and does not believe on continuous chemo unless that is the only option. We treat this as a chronic illness and so far it has worked well for me. My oncologist says no two people are the same or react the same to chemo. There are two of us in my area with the same disease and skin mets to the chest wall I have done well and she has exhausted nearly all the chemo combos even Herceptin. I think there is a combo that will work but its finding the right one and we are all so different that the doctors have a hard time treating us. He tells me that I don't follow any pattern, book or directions. I wish you well and if I can help please e-mail me. This is a tough disease but there are survivors out there. You can go to the IBC board and see some postings. hugs, Sandy