need help desperately

[kay b]

I don't know which way to go from here.

I was diagnosed with breast cancer on 10/03, had double mastectomy on 12/03. I did natural treatment for one year. On 12/04 they did CT & PET scan and it show metastesis to lungs and liver. In 01/05 I started chemo and Herceptin and continued for 2 months, then just did Herceptin until 9/05. Because I started getting big welts(like rash) on left side of my body. In 10/05 I did IPT(small dose of chemo with insulin shots) natural treatments. When my doctor took an X-ray in his office, my spots were the same size as before.

I lost my husband to a brain tumor on Dec 2001 and I have a beautiful 7 year old daughter to take care of and I just want to get well and not let my illness dominate and consume my life as it has been for last 2 years.

My options are: (according to my doctors)
1st)Radiofrequency Ablation-they zap the tumors on your liver with laser
2nd)chemo for lung spots
or
Arimidex or Tamoxifen
or
Zeloda(makes your finger tips and toes numb, chemo)

Please let me know if you have done any of the above treatments or if you have heard of any better treatments. I am only 44 years old and I want to see my daughter grow up and she needs me. I want to thank TriciaK for telling me about this support group. Now, I feel like I have more options.

Kay

[energystar]

I started Xeloda a few months ago, and it has been a wonder drug for me. It works very well for some people. I had a friend who could not tolerate it, so it is not for everyone.
I have a little bit of dryness on my finger tips, no numbness. And I just noticed my big toenails are looking funny. But these seem minor to me, and I am doing things to alleviate them.
But I had a lump on my back that went away within 1 week after starting this drug.
I think the important thing is to keep things moving in your body with this, keep well hydrated and eat healthy.
If you decide to use it, e-mail me and I will tell you some things I do to keep down the toxicity.
terry

[RobinP]

Just curious why did they take you off of Herceptin if it stabilized your lesions? I thought you were suppose to continue with Herceptin until disease progression.

Dear Robin- I have been on herceptin and xeloda since May. They have worked wonders for me. I had mets on the lungs, collarbone, axillary area, and between my lungs. I just had a scan last week which showed no evidence of disease! I praise the Lord for all He has done for me. Many prayers went up for this cause. The two drugs were not bad at all. Sometimes diahreah with xeloda , but after I have it twice, I just take an immodium and it stops. Also, hand-foot syndrome. Gold bond cream is really helping that. Think positive and pray constantly. God Bless- Cathy

[kay b]

I was developing rashes on my body and doctor said I was allergic to protein in Herceptin.

[Lisa]

Kay,


About your options. Radiofrequency ablation my help your liver spots, but you're still left with lung issues. Chemo would work (or should) for both. Hormone drugs like Tamoxafin won't kill the mets, I believe. As far as the Herceptin, I would contact Genentech, the drug's manufacturer to ask about the allergies. They are good with customer service. If you are HER2, you need to be on Herceptin combined with a chemo drug. As far as I can telll, that is your best option.

Keep us posted.

Love and light,

Lisa

[StephN]

I tend to go with Lisa in that you should try and find a way if possible to take Herceptin and just let a doc write you off on that very useful drug.
When I take my 3-week dose over 45 minutes I feel just fine, although never had a real problem with 1/2 hour infusion.
Seems I recall someone who had to get it over a 2-hour period so she could take it.

If you are ER positive the estrogen suppressor should work to slow down your tumors that feed on this hormone. It does have efficacy.

Stay with it and talk to the folks at Genentech yourself.