Up for the challenge: Hi everyone, I... - SHARE Metastatic ...

SHARE Metastatic Breast Cancer

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Chellebelle1 profile image
9 Replies

Hi everyone, I was diagnosed with Invasive Lobular Breast Cancer in March, 2016, just 9 months ago.....found out the following month, there were bone mets as well. So far, everything seems to be controlled.....with the help of these amazing online support groups, i am able to feel comfortable and confidant that i am not alone and there are so many others out there that not only offer support, but validate all of the insanity of this challenge we were given.

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Chellebelle1 profile image
Chellebelle1
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9 Replies
Rhwright12 profile image
Rhwright12

Hi Chellebelle1!

I MBC to the bones also. Was diagnosed in July. In remission now but still on Herceptin for a year and Zometa for the bones till next July also. Let me know if u have any questions.

-Blessings!

Solochabe1 profile image
Solochabe1 in reply to Rhwright12

Can you be in remission when you have MBC with bone Mets?

Rhwright12 profile image
Rhwright12 in reply to Solochabe1

I know they don't use the term remission with MBC. But they don't tell u what term to use so it's confusing. However my cancer biomarker count went down to normal after my 6th Perjetta.

I'm still on Herceptin and Zometa till July.

I know unfortunately this will return at some point in the near or distant future. But for now I'm concentrating on eating healthy, exercising and getting back to work. And a Disney vacation in May. ..😀

-Heather

janetjanssen profile image
janetjanssen in reply to Rhwright12

Great for you! Enjoy planning that trip!

daf10 profile image
daf10

Welcome aboard I am glad that you found our community WE are here to support you, so please feel free to post and we will be there to respond

Partia profile image
Partia

Hello. I was diagnosed in Feb 2016. I hope things continue to go smooth.

Mariannem profile image
Mariannem

Bone only MBC patients do much better and survive longer than those with mets in other places. (i.e. Lung, liver). Lobular breast cancer however is harder to diagnose and to follow for progression of disease. You are not alone. Fortunately or unfortunately there are a lot of us. It does take a while to find your new norm of living with MBC. You will find it. I have been living with ER+ ductal MBC for 3 years and 3 months. I have mets to pleura(lining of lung cavity), liver, ovaries and too many bones to list including extensive mets to spine. I have had periods of stable disease with treatment.

I have metastatic, ductal, HER2 positive breast cancer since 2007 and have had spread to the lung and brain. Recently several clinicians and scientists held a first international conference on lobular breast cancer, since it's different from ductal carcinoma and doesn't always act in the same way. Here is a link if you would like to follow up for more information:

community.breastcancer.org/...

Joan

Kats3 profile image
Kats3

Hello. I too have invasive lobular BC and mets to bones. I'm ER+, Progesterone-, and Her2 - What type of treatment are you getting? I was diagnosed with bone mets in 2012. I'm on Xeloda pills and have just finished 2 years of monthly infusions of Zometa. I'll now get the infusions every 3 months and then every 6 months. X-rays show that the fractures to my ribs, spine, and pelvis have recalcified. The pain is very much reduced but not completely gone. Hopefully I can stay on the Xeloda for a good long time as it's agreeing with me. I take 3 500 mg pills a day, 2 in am and 1 in pm for 3 1/2 days, then have 3 1/2 days off. My tumor markers are checked each month and so far are in an acceptable range.

I'm curious to know what your treatment plan is. Good luck with everything!

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