Hi! Lobular BC with bone mets....

[Kats3]

Hello everyone. I'm Kats3 and was first diagnosed with lobular BC in my left breast, very tiny area, in 2012. I had a lumpectomy which showed one positive sentinel node. It was felt that I didn't need chemo but had 33 rounds of radiation. I was put on Arimidex for 1 1/2 years. I'm ER+, Progesterone -, and Her2-. Bloodwork was never done on me in the 1 1/2 years, and one day I had excruciating pain in my left rib. Went to my primary doctor who sent me for x-rays, scans, and at the end, a bone biopsy in 2014. This showed metastisis to both ribs, spine, and pelvis. I could never reach my Oncologist who practiced in a large hospital 25 miles from me. I left him and now have a wonderful doctor who actually cares. He does tumor markers on me and is following me carefully. I did not respond well with the anti- hormone drugs Arimidex, Tamoxifen, or Faslodex.

I am currently on Xeloda, an oral chemo pill, and am responding pretty well. I just completed 24 infusions or 2 years of Zometa, a bone strengthener. I'll get the infusions now every 3 months, then every 6 months. Zometa has helped recalcify the fractures that I had in my bones. I feel so much better.

Scans show negative for progression. Skeletal x-rays show cancer "beads" scattered in various bones. My bloodwork shows the CA tumor markers going up and down as the months go by, but they're within acceptable ranges. I would love to be told that I have NO evidence of disease!! Miracles do happen! I try to eat well, think positive, go for walks, meditate, take vitamin supplements, and pray!

Wishing you all good days ahead. Would love to hear from someone who matches my symptoms and subtypes. Thanks. Kats3

[summeratty]

I am also ER+, Progesterone -, and Her2-. After chemo, my oncologist started me on Arimidex, Faslodex, Femara, and Xgeva. After I had my ovaries removed, I remained on everything except Arimidex. After about 6 months, we stopped Xgeva. Six months later, I had bone mets come back. Most doctors would have determined that the Femara and Faslodex combo had failed and put me on a new drug, but my doctor (rightly) did not think that was it. After radiation, I stayed on that drug combo, with Xgeva added back in and I have not had a recurrence to date. That was a little over 2 years ago. I don't think I can stop taking Xgeva again. The femara/faslodex combo is not "standard of care," but it works for me. Food for thought... It sounds like you're doing everything else that you can. I find those things really matter!

[Kats3 in reply to summeratty]

Thanks for replying. Your drug combination is interesting. I was told that with bone mets only, one drug at a time would be given. Then, if after 3 months that drug doesn't work, the doctor moves on with another single drug and watches how that one works. I went through 3 drugs like that with tumor markers rising indicating that the drug wasn't helping me enough. So now I'm on the oral chemo drug and it's keeping the cancer in check for the time being. I think there's a Paloma trial that shows 2 drugs being used at the same time for bone mets with ER+ women. I think it's Letrozole ( Femara) + one other...not sure of the name.

Have you ever been on Ibrance? My doctor mentioned that drug to me a couple of times.

I'm very happy to hear that your drug combo plus the Xgeva is working for you! It sounds like you have a good doctor who thinks outside the box. Mine does too. I'm not sure how long a person can get Xgeva shots. It's a biophosphate like Zometa and I was told that there's a time allotment that those drugs can be given. I'll ask my doctor when I see him after Christmas.

Many good wishes and continued progress for you in the New Year! Kats3

P.S. Did you have the Braca1-2 genetic test done? Is that why you had your ovaries removed? I had that testing and it didn't show any DNA mutations for breast cancer, ovarian, liver, and many other types of cancer. I'm past menopause and maybe you're not + that might be the reason for the ovary surgery, to stop extra production of estrogen? Let me know about that. I'm curious....

Thanks again for writing. Kats3

[summeratty in reply to Kats3]

You are right. Ovaries were removed because I was pre-menopausal. I did all of the genetic testing you mentioned. Mine was all negative as well.

Yes, my new oncologist (who I don't like and doesn't think outside of the box) talked me into coming off of Faslodex and going on Ibrance in conjunction with Femara (letrozole), as that's the way it's supposed to be prescribed due to the clinical trials. That thoroughly confused the insurance company who decided that meant Femara had failed, and therefore, denied coverage despite the doctor's appeals and explanations. I ended up getting it directly from Phizer through it's patient assistance program.

I took it for 3 months, but the side effects were pretty severe for me. I felt like it wasn't worth it since I didn't have any detectable tumors at that time. It was basically like being on a mild chemo. If I had tumors, I would reconsider it though. I have heard a lot of people say the side effects from Ibrance aren't that bad for them.

And yes, I think there is a term date for the biophosphates, and that is worrisome!

[Kats3 in reply to summeratty]

The two drugs that you took were in the Paloma trial. My Oncologist mentioned it to me. Wonder if that'll be recommended for me down the road? I don't like bad side effects! What are you on now? Ibrance? If we don't have actual tumors in our bones, what did your Oncologist say it is? Mine said they were "beads."They certainly did a number on my bones!

Was wondering if the Faslodex was working for you before your doctor pulled you off of the shots. I was told you're supposed to be on a treatment for 3 months before being taken off.

I'm finding out that there are many drugs out there and it seems to be in the Oncologist's hands as to what he puts you on. I thought there was a certain protocol that needed to be followed. Hmmmm...

Too bad about the insurance hassle. They can be tough to deal with at times.

What bones were affected with you? Does your doctor do tumor markers every month on you? And how often do you get scans? My doctor isn't big on them because of the radiation factor. He likes to follow the markers instead.

Thanks again for getting back to me. Hope you enjoy the upcoming holidays.

[Rhwright12]

Hi Kats3!

I also have bone mets. I've been on Zometa since July. Tumor marker numbers have been normal for 1 month now! Yea! Got to celebrate each mile stone no matter how small.

Glad u found a good doctor. Hard to believe the first didn't do any blood work to compare scans to. But definitely glad that's fixed now.

I use tamoxifen for me ER+. So far so good.

Have great Christmas! Many prayers for a cure for cancer!

-Heather

[Kats3 in reply to Rhwright12]

Sounds like you're doing great! I hope you can stay on Tamoxifen for a long long time! Best wishes! Kats3

[Solochabe1 in reply to Rhwright12]

How bad are the side effects while you are on Zometa?

[Rhwright12 in reply to Solochabe1]

Zometa didn't give me side effects, It made the bone mets feel better. It's like reclasp that you get for oteoprosis. So it's not actually a chemo. So no cheno side effects! And I get it next Thursday and it's only 15 minutes. They were joking that I needed drive thru services for that one.

-Heather

[Kats3 in reply to Solochabe1]

Hi. I didn't have any side effects on Zometa either. Had 24 months of it and it strengthened my bones a lot! Will get the infusions every 3 months now, then every 6 months. So glad that there's something for us with bone mets! Kats3

[Markayjay]

I'm not as formal as you are with medical terms, just know I have metastc breast /bone cancer. On chemo pills , just here taking pills 🙏🏼🙏🏼🏋🏿🏋🏿

[Kats3 in reply to Markayjay]

Markayjay,

Hi! How are you doing on your chemo pills? Drop us a line.......and Happy New Year!!

[Kats3]

Do you know the name of the pills? I have a feeling it's Xeloda also called Capecetabine. Are they helping to keep the cancer in check? Wishing you good luck with your treatment. Are you getting something to strengthen your bones? Thanks for writing! I guess there are a lot of us out there with bone mets. Kats3