Diagnosed at extensive Bone mets Stage IV

leez · 03-06-2011, 05:54 PM

Hi, I am a long time reader of this forum but a first time poster. I really appreciate all of the active members. Your information and support are always helpful. I am posting here for a friend in China. I myself is a cancer survivor but I amTriple Negative. This friend of mine is her2 positive. Here is her information:

1/2010 Diagnose: 1cm IDC Breast Cancer. ER++, PR-, Her2+. Extensive bone mets. 8 Rounds of TAC. Followed by Herceptin + Xeloda 2 rounds.
2 months later (October 2010), metastsis to Lung and Liver. So she is on Lapatinib + Xeloda 5 rounds till now. Recently her CEA is up to 17.

Please note that she didn't have a surgery as her doctors in China thought it would be useless. Is that true? I would think it is necessary to remove the site of original tumor.

Also, she is only on Herceptin 2 times. In China, Herceptin is very expensive and is not covered by insurance. I would think she should be on herceptin all the way. Don't you?

What about Zometa? When she was first diagnosed, she had such an extensive bone pain that a minor move of her body could cause her to faint. PET/CT showed extensive bone mets. She is better now. Can type, move around and do simple stuff. So the chemo is doing the job but we all hope chemo can do a better job.

Thanks for all your help!

flynny · 03-06-2011, 07:44 PM

I don't have bone mets, but just want to let you know that I am sending her prayers and I hope she gets the medical attention she needs!

Jackie07 · 03-06-2011, 08:16 PM

Hi,

If you look at the treatment history of many of our long-term members, you will find that doctors often alternate between Herceptin and Tykerb (Lapatinib) when new tumor sites are found.

Tykerb is a smaller molecule that can penetrate blood-brain barrier and prevent/control brain metastasis besides curbing the cancer spread in other organs.

Since the more pressing issue is to stop/treat the cancer spread in her vital organs, her doctor probably is wise not to do surgery at the moment - the breast tumor is small and possibly has already shrunk from Tykerb.

Sounded like her doctor has been keeping up with the current research and practice. Please give your friend the reassurance as 'positive thinking' increases the release of endorphin which improves our immune system to fight cancer and other possible complications.

leez · 03-06-2011, 09:33 PM

Thank you both for your prayers and your information. It is very helpful. It will certainly help my friend build up confidence in the treatment plan. Thank you so much!

Trish · 03-06-2011, 09:53 PM

I agree it would be well worth asking about Zometa. I have been on it since my bone metastases were diagnosed in 2007. Before I had the bone met diagnosis and commenced Zometa I had 2 unexplained fractures of the ribs but have had no fractures since then and I have extensive bone mets. I only have Zometa every 6 weeks now. My best wishes to your friend-she is lucky to have a friend like you.
Trish

tricia keegan · 03-07-2011, 04:59 PM

I think in the past it was believed removing the original tumour site gave no benefit to prognosis but this was changed some time ago.
I'd also agree to have zometa or similar to strengthen the bones!

Lori R · 03-09-2011, 09:05 PM

Please encourage your friend to pursue removal of the original tumor. It is very old thinking to assume a Stage IV breast cancer survivor is on a short timeline.

There are many of us on this site that have either been completely cured of Stage IV cancer or have lived full lives for many years.

Keep on fighting!!!

leez · 03-10-2011, 02:23 PM

Thank you so much for all of your replies. I have let my friend know about it.