best I can give her

This is my first post on the board. My wife has bone mets .Intionally dx.in Feb 03with mets..Set back in Feb 04 progression still just in the bones .Last MRI of brain Sept.03neg. .I feel doctors may have let us down before and would like to be efficient enough to not let it happen again.I would like any knowledge or advise you have that could beniefet my wifes life.
Here is some back ground .
Her initial report go something like this;Nov. 01lumpectomy
Invasive adenocarcinoma,
Histologic type ;ductal w/lobular features
Size of invasive componet at least 3.6cm,gross tumor size 1.3cm,in situ present with DCIS extending outside the invasive tumor mass at least 5cm , ,+ margians .8 nodes all –
Dec 01
Mastectomy,no residual invasive adenocarcinoma,size of in situ reported 6cm
ER+3 PR+2 Her2/neu amplified by FISH
4AC
rads
tamoxifen sept.02 to feb 03 ,reconstution during this time sept.
leg pain Dec.02
.Feb03 dx. mets.
More rads March 03
Change docs May 03
June 03 oomphorectomy,start femara herceptin.
Feb 04 start navelbine/herceptin
Right now Roben has extensive bone mets., and.Spread 1feb 03 L hip lower R&L rib area T spine T –4, 10 ,11.Spread 2 feb. 04 R hip R femur, T-8 in spine,rib area uptake

I question several things that were done in the past but my knowledge wasn’t vast then either.I don’t know if this protocol is the best for us now or is there something else there that should be brought to the doctors attention or ours. I feel so far behind in everything I’m trying to do for my love,.she is a 38 yr old mother of 2.

Blood test have shown a drop in platelet,and white blood cells since the start of navelbine.Her second round of it was postponed until self injections of neupegen brought up the last w/counts.Her plate are down from 135-145 range to 118 at last count.We go back again fri. for more meds?Test are suppose to be May 5 after a few more cycles .

Should alarms be going off . Does brain mets caught early improve your chances or does that matter at this stage and if so how often should she be tested.Ya’ll who battle this disease are true heroes of mine.
God bless you each and everyone.What might be other treatments options.
Thanks in advance for you imput.
Jeff

Jeff,
First, let me say thanks for the tremendous support you're giving your wife.

I'm no doctor, but from her history, it appears everything has been done to protocol. Mets can appear very slyly, even after tests show no problems. The fact that they're doing regular scans (MRI or CT) of full body including brain is good. The Navelbine/Herceptin combo has worked very well for many women with bone mets, including me (bone and liver mets). It can be harsh on the system, but the results can certainly be worth it. ANY mets, including brain, can be treated more effectively when caught early.

If you have more, specific questions, please ask us. We have a lot of experience and knowledge as a group and aren't shy about sharing it and our opinions.

Love and healing light to Roben,

Lisa

I am sorry to hear that she's going through so much. I was diagnosed in 6/01 and I had brain met and currently I have liver met going on. They were some suspicious spots on my spine, so my doc put me on Zometa. He says it strengthens the bone and somewhat have treating power in the bones. It didn't sound like your wife is on Zometa. You might want to ask her doctor.

prayers to your wife and your family.

Dear Jeff,

By all accounts, I would say that you have performed in outstanding fashion. This is one of the most detailed treatment write-ups I have seen to date. Nice advocate work! I few thoughts --

As indicated below by many, Herceptin and Navelbine, as well as Herceptin, taxotere and carboplatin, are two of the best treatment combinations currently available. One post suggested Zometa in connection with bone mets -- consider Aredia as well.

Many doctors, in response to your question as to whether scans improve your chances, will respond "no." To this comment, you should respond "Poppycock!" Although many doctors say sooner is no better than later in Stage IV, a scan that detects brain mets early, for example, may change the nature of your treatment. There is a difference between gamma knife alone (if brain mets caught early), and whole brain radiation plus gamma knife (if brain mets caught later) in terms of side effects and quality of life. In terms of patient treatment, I can't think of a situation where not knowing or knowing later is better than knowing sooner. Because your wife is in the midst of active treatment, she should be able to obtain periodic scans to determine the effectiveness of her treatment. If that is not the case, insist that she get tested.

Femara is an excellent anti-estrogen choice. Arguably, it is one of the best aromatase inhibitors for HER-2 positive breast cancer, based upon a small study performed by Dr. Matthew Ellis (St. Louis). If at a later date, you feel that Femara is not effective, speak to your doctor regarding use of Faslodex (an estrogen receptor down-regulator).

You're doing great Jeff. Hang in there until May and let's see how well that Navelbine/Herceptin combination works.

Jeff, There are many women who see remission with the Herceptin/Navelbine combo. There are many other combo drugs that you and the Onc can discuss using once she is able to proceed. From the Herceptin trials there was a drug called Cisplatin that is very synergistic with Herceptin. I understand Taxotere has benefited many, but sometimes progress is SLOW, especially with bone mets. Herecptin, if FISH+ should work with the right chemo Also,Speak to your Onc about future Phase 3 trials tha look promising.
Keep your medical records and radiology reports to seek other opinions if necessary.
Ask as many ????'s as you want. Where do you live? I would be happy to call you if you e-mail me you tel#. Hugs to you both, and a kiss for the L'l ones, Christine