New here. Would like info on bone mets....

[Kats2]

Hi everyone. I'm 67 and was first diagnosed with lobular bc, very tiny, in 2012. Left Breast. Had a lumpectomy and radiation. One sentinel node had Metastisis but it was felt that I didn't need chemo. 2014 pain in ribs led to finding of bone mets to spine, pelvis, and ribs. We believe that it had already metastisized much earlier, perhaps in 2008. I'm on Xeloda and receive Zometa infusions once a month in order to strengthen my bones. I have been on Xeloda for 1 1/2 yrs and Zometa for 2 yrs. the Zometa will be spaced out to every 3 months starting in Dec. I'm Est+, Progesterone - and Her2 -. Is there anyone out there that is similar to me in their diagnosis? My latest scans show that it's strictly in my bones. I take Ibuprophen, rub on Voltaren cream, and use heat for pain. If I do too much physically, I pay the price! I've slowed down substantially.

Hoping to hear from anyone! Kats2

[NancyBraman]

Hi i have bone mets too..I get Faslodex and Xjeva shots monthly for hormone therapy and Xjeva is bone health. I have it in four spots in my spine, both hips, shoulder, femur, skull.. I'm 51..I take ms morphine for pain, I just recently reduced my pain meds and can get around pretty good. Extra activity is very painful and I end up paying dearly for doing yard work, playing with my grand daughter or just walking too much. I don't think I could just do ibuprofen...I have absolutely slowed down. I didn't want to take pain meds, but my quality of life was horrible, I couldn't go grocery shopping, work drive or do anything so after 8 months I started pain meds, and honestly it has given me my life back. I want to be able to enjoy any time I have left. Please try not to suffer too much physical pain when there are things you can possibly look into so you can do things. My doctor has been great to talk with about quality of life... I wish you the best of luck...

[Kats3 in reply to NancyBraman]

Thank you Nancy for getting back to me. Yes, I probably should look into the pain meds more as I definitely don't like the limitations that I'm experiencing now. I was pretty active before this took place. I'm still trying to come to terms with the fact that I can't do everything that I used to and I don't like it one bit! I agree with you about the walking too much part. I find that if I go clothes shopping and walk around a lot in the store, and also try on clothes, I end up in awful pain later. I was and am still a member of the YMCA but haven't been there in ages. This saddens me. I'm trying so hard to act normally but my body is telling me to slow down. Oh well, guess we have to accept a "new normal." Wishing you well.

[Hidden]

I am 70 and have been treated for mets to liver and bones for 7 years since 2009. ER, Her2 -. Like you I've been taking Zometa every 3 months and have cycled through all the anti-estrogen drugs, zeloda and Ibrance. I had little bone pain until I fractured ribs (healed with heat) and then had compression fractures (L-3 from coughing), (T-8 from lifting weights over my head) that healed in time. I continue to have back aches (though no pain from mets in hips, or skull) so I limit my exercise routines, lie down a lot, and use a lumbar cushion when sitting. I take Tramadol (I have had a allergic rash from Ibuprophen) when I want to overdue my routine, as in activities with grandchildren or a weekly 5 mile hike. I am now on taxotere (infusion chemo) which has reduced tumor markers for 6 months but seems to have run its course. I have decided to stop CT scans which I have had every 3 months for 7 years and am worried about the radiation. I get bone scans a couple times a year. What scans do you get and how often? Some folks get radiation treatment on bones; I have not. Have you? Good luck.

[Kats3 in reply to Hidden]

Hi honey due. Thanks for writing. My doctor is not big on scans. I had lots of them before a final diagnosis was made on me that my bc had metastisized. These were ordered by my regular doctor. After that, with my Oncologist, it was 1 yr and 4 months before I had a CT scan, brain MRI ( he didn't recommend that, but I wanted it) and then a big set of skeletal x-rays. CT and MRI came out okay, but the mets are still there in my bones pretty much the same as when I started. I too had 2 compression fractures in my spine. Those have healed up with the Zometa infusions. My ribs also show improvement from where they were fractured in 2014. My Oncologist follows my tumor markers more it seems. When I was on Faslodex, they went up real high! That's when I was put on the Xeloda. I'm still on it but on a reduced dose as my Onc feels that the recommended dose is just too much for a body to take. He's mentioned several other drugs that I could take down the road if and when the Xeloda wears off. I think Taxotere is one of them.

CT scans every 3 months is a lot! Do you live in NY or FLA? My doctor says that they do them more there than in other states. I trust him though. He says he doesn't use book sense as much as he does horse sense! He knows quite a bit and also treats other types of cancer in his practice. At one time I went to a Breast Clinic in a city about an hour from me thinking that I'd get better care. That turned out to be an awful experience where I couldn't get ahold of my Oncologist at all! Not good!! So now I'm at a Cancer center right here in my hometown and am getting excellent care. Sometimes bigger is NOT better! I see my Oncologist once a month. My bloodwork is checked 2 days before I have my appointment. Then he tells me about the markers etc. I always hold my breath waiting to hear what he has to say. I'm trying to eat better, take a good multivitamin, and now am drinking mushroom tea! LOL! I also sprinkle tumeric on my food when I think of it. It's supposed to have anti-Cancer properties. I'll try anything at this point!

Sounds like you're doing pretty well. We need to be strong, for sure. Bye for now. Happy Thanksgiving.

[Hidden]

I too have metastatic breast cancer which spread to my lung and brain. The lung was the same pathology as my stage II diagnosis of ER-/PR-/HER2+, but my brain met was triple negative. I don't have lobular breast cancer but learned recently that the first international conference was held at University of Pittsburgh under the direction of Nancy Davidson. And I believe that SHARE may be scheduling a webinar early next year on lobular breast cancer, but that schedule isn't out yet. Are you in Europe? I notice that you use Voltaren cream. I'm new hear and not up to speed with how to use the message board, but hope to learn soon.

[Kats3 in reply to Hidden]

Hi Joan....No, I don't live in Europe. I'm from Massachusetts. The Voltaren cream is like a Ben Guay of sorts but you need a prescription for it. I get the generic brand called Diclofenac Sodium Topical Gel 1%. I rub it in liberally when I have bome pain in a certain area, like my ribs or neck. At first it doesn't seem to do much but as time goes on and you reapply it, the pain eases up.

I'm new to this site too. I'd be interested in watching that webinar on Lobular bc. My surgeon said it was a "sneaky" Breast cancer.

It's all so disturbing don't you think? I try to stay positive. I don't like the fact that I can't be as active as before. If I overdo, then I'm in awful pain with my spine, lower back, etc. Right now I'm getting over a cough and cold, and that just adds to my total pain.

Did you need surgery for your lung and brain? That must be a scary ordeal! I hope you're feeling better at this time. How long have you had Metestatic BC? For me, it's been 2 1/2 years. I see my doctor once a month. I have an apptmt tomorrow. It's always anxiety-provoking! What state do you live in?

Bye for now, Kats3

[Solochabe1]

I'm newly diagnosed,with stage 4 with Mets in my bones I have a spot on my ribs, left hip and lower spine I've been on Xeloda pills for 3 months and I will start on Zometa on January, initially breast cancer started on my left side, stage 3 hers positive I had mastectomy on 2013 chemotherapy before and after the surgery 64 lymph nodes removed but 11 positive and 32 rounds of radiation, I start having cramps on the surgery site every time it's cold I get this terrible cramps and don't know what it is, do you have this too

[Kats3]

No, I have no cramps. I think you have this because you had so much surgery on that side. Ask your Oncologist if there's something you can do for the cramps, like maybe put heat on that area or rub an analgesic cream there. He/she should have some suggestions for you. Good luck!