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

[Martha]

Hi there all, I'm sorry to say that I am out of the GW572016 trial that is so very promising. The CT I had a couple of weeks ago showed increase in tumor size and it was enough of an increase to pull me out of the study. They feel the study drug is no longer helping.

I am Stage IV IBC HER2+, 35 yrs. old, DX @ 33 in May 2003, easier to say what drugs I haven't done because I've done just about all of them. Now on one drug left at that is Gemzar.

Saw the doctor on Wed down in Indy and she gave me my first infusion of Navelbine w/ Herceptin. Didn't really have bad side effects, super tired, and bone pain from the devil, lol.

Does anyone on here know of anyone in my position that has actually survived this wicked diagnosis. I keep going to sleep hoping I'll wake from this terrible nightmare and be able to raise my four children but; I wake and I'm still in the nightmare.

Has anyone with IBC had a positive response on Navelbine. They won't scan me again till nine weeks from this past Wed. I'll be a ball of nerves till then and even if it does work, how long will that last, I have no clue. I'm so scared. I posted on the clinical trial board last week and got a couple of responses, someone suggested I put it on this board as well. Thank you all for taking the time to read this.
Blessings to all, Martha

I have IBC and I did great on navelbine and herceptin. I had ibc in right breast and had an mrm after much chemo. The results were great and everyone was estatic. Two weeks after 33 rads I had ibc in my left breast.
I was on ellence and taxol, ended up in hospital with neutapenia fever, chemo changed to herceptin with navelbine. Cannot remember how many treatments but it was every week probably 4 cycles , had an mri and pet which was ned. Had my mrm which showed a .5mm tumor, nothing, no positive lymph nodes. Went back on navelbine/herceptin for another 4 cycles
(I think) and will be on herceptin for a year. I am now doing 33 rads again. I have not had a break from this disease and I am mentally and emotionally exhaused from this battle. I am also grateful to be ned and pray that I will remain so. I pray for you that this will be your majic bullet and you will have the same results as me. I also had very few side effects from the chemo except for low blood counts, mainly white and I got procrit for red cells. Ellen from Long Island

[Martha]

You didn't leave your name but thank you so much for the reply. I'm so tired as well, I have not had a break either. Been doing this non stop since May 2003. I only had three sessions of Rads and then they stopped them because of mets behind clavicle and under right arm, that was back in 04 I think. They say surgery or rads is not an option. I currently have mets under right arm, I think subpec and nodules in lungs. I hope this slows things down. Do you know anyone on Navelbine long term? Martha

[jojo]

I am sorry that you have been going on a very long battle with BC. It is definitely NO fun business!! :-(

Have you thought about maybe making a quick getaway, like over a weekend, so you could recharge your batteries afterwards?? Sometimes it is a good time to get out of home, especially when you are feeling "the same old, same old" with ongoing fatigue.

I am a little exhausted, too. Yesterday, I just had a 3-hour nap throughout dinner time, as I had not done that in 2 years, ever since my original rounds of chemo's. I was surprised to find that it lasted very long, as I had predicted that my nap would take only an hour or so.

Las Vegas is actually one of my LEAST favorite towns -- I don't gamble, I only like Cirque du Soleil shows -- but since my husband's best friend's wife will be there next week, so I'm sure that I will enjoy having her company. :-)

I can't help you on anything about Navelbine, as I have never tried it before. But I do want you to know that there are a few 4-stagers that have been here more than 5 years since their recurrences (or rather their original diagnoses, if stage 4 that is).

Also, keep in mind that occasionally we could repeat the same chemo's just as long as there were significant time breaks in between. Perhaps you could ask your onc, if you could have some of the chemo's again, maybe even in a different combo??

Can you tell us why they cannot surgically remove your positive nodes under your arm??

Please do keep us posted, as you go along.

Good luck, you are in my thoughts & prayers.

[Beth]

Hi Martha,

I was dx 12/03 have been on Taxol/Herceptin, Taxol/Carbo/Herceptin,
and most recently Navelbine/Herceptin. I had 12 weeks of the Navelbine
and my CT scan showed 1 cm progression in a liver met but kept my lung
mets stable. Maybe it will work better for you. What all chemo treatments
have you been on since original dx?

Good Luck,

Beth

[Martha]

Hi Beth, thank you for the reply. It's easier to tell you what I have not done yet. Now that I am on the Nabelbine I can say the only thing I have not done is Gemzar. I've done them all, including Xeloda w/Herceptin combo. I know the Navelbine won't cure me, I'm just praying that it buys me as much time as possible, I have four little ones that desperately need me. Let's all pray for the best. Thanks again. Martha

Hi, I always have to ask this when I see IBC, is it Inflammatory Breast Cancer or Invasive Breast Cancer, there is a big difference.

Hugs Lyn

[mamacze]

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]

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]

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