Newly Dx. Bone Mets

[donnajean16]

Hello Community,

So glad to have found this site! I've been looking for several days, with some really depressing outcomes.

I was diagnosed with BC in April 2013 at the age of 46. Underwent bilateral mastectomy, identified as IIIA, 3 of 9 lymph nodes positive, ER and PR +, HER2 -. Following my mastectomy, had 6 rounds of chemo -TAC, then 28 sessions of radiation. For the past, almost 4 years feeling very good until this past April while working out had a sudden onset of pelvic and left hip pain. Thought it was an orthopedic type injury, so gave it time to heal. Unfortunately, shortly after this "injury" I got cellulitis of my breast implants, this was treated successful with oral antibiotics. In August, had to have a hysterectomy due to break through bleeding. Following my recovery, I was still having pelvic and left hip pain, ended up having an MRI that showed a stress fracture in my pelvis. Didn't think much of it, increased my protein, decreased my exercise and was starting to feel better. In November, saw my oncologist for my routine 6 month check up, blood work revealed significantly elevated tumor markers compared to the ones in April. In December, had a PET scan that revealed lesions in my pelvic region and some in my femur. It's been a world wind since then, many doctors, more scans and labs - all confirming bone mets into my pelvis, femur.

Last Saturday started on Ibrance! Tolerating ok, just a little nausea on and off during the day. Also fatigue, however, not sure if that's from he Ibrance or just the emotion of this entire process.

Again, SO glad to find this group and look forward to communicating and supporting everyone.

STAY STRONG!

[Kathyinmich]

Ibrance will lower your hemoglobin which will fatigue you. They should be monitoring it. It has been working for me for almost 2 years. Good luck. Kathy

[donnajean16 in reply to Kathyinmich]

Wonderful to hear that you have responded well for 2 years! I go for my first labs after being on Ibrance next Friday, hoping my WBC stay strong! Thank you for your reply -- really needed to hear from others going through this!!

[Kathyinmich in reply to donnajean16]

There are a number of treatment out there. This is my third different treatment. When one stops being effective there are others out there. Keep the positive attitude I think it is very important. It can be overwhelming and scary. Keep fighting. Kathy

[Rhwright12]

Hi Donnajean!

I was diagnosed with MBC with mets to the bones last summer at age 45. When googling bone cancer remember our type is breast cancer to the bone. Straight up bone cancer is different. I'm taking Zometa now for bone repair from the cancer. It's similar to a Reclaspe that u would take for osteoporosis. It puts calcium back in the bones. If u want. Google Zometa and their statistics for bone mets will undepress u. Ask your doctor about taking Zometa to repair lesions in pelvis. I had 6 Perjetta for this along with monthly Zometa. Finished November 10 with Perjetta. Herceptin and Zometa till June. Since u like to exercise I'll mention I did 2 walking 5K's in October and one on Thanksgiving. So don't give up. It'll take a few months but you'll be back to normal soon...

-Heather

[donnajean16 in reply to Rhwright12]

Hi Heather - Thank you for your reply, means the world to me. My doctors plans to start me on Xgeva next month, need to get dental clearance first due to potential risks. I'm hopeful Ibrance will stop the progression, and my bones will start to heal. Today I joined our local pool club, so next week I'm going to try some swimming, just a little for now. I hope to be back in yoga class soon, miss the peace that brings me.

I promise I won't give up!

Stay Strong!

Donna

[Solochabe1 in reply to donnajean16]

How long you need to wait after taking out a molar, to get Zometa?

[PJBinMI in reply to Solochabe1]

HI, It's often recommended to be off the bone drugs for 3 months before and 3 months after "invasive dental work" like extraction of a molar. But in the real world where we live, it is often not possible to have the 3 months before the dental work off the drug. I can tell you that when Zometa was still a new drug and the risk of ONJ was not well known, I had a tooth pulled without any change in receiving Zometa and I had no problems. But that would not be done today!

[PJBinMI in reply to Rhwright12]

You might like to know that those of us with bone mets only tend to do well for long periods of time. The bone drugs and the drugs for her2neu positive bc have made a huge difference in both length of survival and quality of life. I have an E + bc with bone mets and have been in treatment for just over 13 years for mbc. Started the month of my 58th birthday, am 71 now. You would never pick me out of a crowd as a cancer patient! Or as a 71 year old for that matter!

[Barbteeth in reply to PJBinMI]

Hi there

You have inspired me..recently diagnosed with extensive bone mets and a few pleural nodules..after 24 yrs!!.. thought I was ok how wrong can you be

On letrazole Ibrance and xgeva..when I feel miserable I will think of you and living well after 13 yrs..incredible

I’m 64 and trying to get back to doing normal stuff..it’s hard though..think still in shock

B x

[Loriterranova in reply to PJBinMI]

Hi PjBinMI,

So wonderful u have had no progression all these years! I was diagnosed Oct, 2012 and had a bilateral mastectomy and was stage 2B Her,pro+. Had chemo and then rads and was NED for 4 years. Was also taking tomoxifin cause I was not in menopause yet. November 2016 was diagnosed with bc in the T3 spinal vertebrae. Had 3 Stereotactic rad sessions to treat the metastatic breast cancer. Then I had my ovaries out and started Letrozole/femara and Xygeva ingections. Actually scheduled for a screening PET scan tomorrow to make sure cancer is till contained to the T3 area.

Curious what meds u have been on all these years..... My onc says its not necessary at this juncture to have to add ibrance to the letrozole cause the cancer is in just one bone.

Sorry so long winded.....

Thank You,

Lori

[theresac1 in reply to Rhwright12]

Hi Heather, did you have any significant side effects with Zometa? I am supposed to start a monthly infusion Friday. In addition, I have a temporary dental implant that is concerning me.

[Kattown]

Hi DonnaJean... I also have Mets to bone. I was stage IV at original diagnosis. I'm also on Ibrance and I'm currently in cycle 20. Are you also on Zometa or Xgeva? I get Zometa infusions to help repair the damaged bone.

If you are on facebook I am in an Ibrance support group that has been very helpful in comparing side effects. Let me know if you'd like to be in that group and I'll send you a link.

When I first started Ibrance my numbers were crazy. TM's spiked initially, platelets dropped, White blood cell counts dropped. But, over time everything sorted itself out and now all of my numbers are fairly normal aside from my platelets which continue to stay low. But, not dangerously low.

Glad you found this site too. I wish none of us had to be here...

[rlrastetter in reply to Kattown]

Kattown- Sounds like we are in a similar situation although my bone hets are gone & appear to have healed. I am very interested in the Ibrance support group on facebook if you wouldn't mind sending me the link. I have just started my second round after a decrease in dose so I am interested in connecting with others.

Thanks!

[Kattown in reply to rlrastetter]

Right now I'm No Evidence of Active Disease. So, doing well on this treatment plan. I got Zometa monthly for a year and now I only have to have it once every 3 months. Bones are stronger and now I can lift again. I had mets to the spine so was very paranoid about fractures. Happy to be able to be more active. Here is the link to the Ibrance group. Just hit join and someone will contact you through Private message so watch your message box. It may take a few days for the moderator to respond. She gets lots of requests.

facebook.com/groups/7441748...

[donnajean16 in reply to Kattown]

Kattown,

Thank you, thank you!! I submitting my request for the FB group and have been accepted - yeah! I look at the site a little, and it looks amazing, so very glad to have these outlets!!

I recently described being diagnosed with Stage IV BC, feels like you've been kicked out of the "cool kids" club. So many resources for BC, but metastatic BC not so much. I hope this changes, and thank you for your connection to the FB group.

I'm so happy you have no evidence of active disease -- AWESOME!! I pray that continues for a long, long time.

Keep in touch, and stay strong!!

DonnaJean

[Solochabe1 in reply to donnajean16]

What is the function group name

[Kattown in reply to Solochabe1]

It's called Metastatic Breast Cancer CDK 4/6 Inhibitor group: facebook.com/groups/7441748...

[Solochabe1 in reply to Kattown]

What are the side effects of Zometa?

[Kattown in reply to Solochabe1]

For my first few infusions I got flu like symptoms... lots of achiness all over. Over time it got better though and now I only get mild achiness for a couple of days after.

[Solochabe1 in reply to Kattown]

Thanks for the info

[Sheila100856]

Stay strong ladies I too recently had a diagonosis of bone mets,somedays it's like it nevr happena nd others I m still asking why..Through it all I trust GOD that we will all have along life span and be able to be completely healed...

[Kats3]

Hi donnajean 16,

Was wondering if you were on any hormone meds after your radiation was over? Like Arimidex, Tamoxifen, Faslodex shots?

It seems that Ibrance is being prescribed more and more. Must be good!

It seems that you had your tumor markers checked only after a long period...5 months. I have mine checked once a month 2 days before my doctor's appt. My first Oncologist did NOT check my markers at all. I was on Arimidex for 1 1/2 years before I was diagnosed with bone mets. Somewhere along the line the Arimidex stopped working. I could never get ahold of this Oncologist and ended up dropping him. I now have one who really cares and is keeping a close watch on me. Thank God!

I'm surprised that you only see your Oncologist twice a year. Is that routine for someone with metastasized breast cancer? I think it's routine for regular BC patients, but we "special" gals need careful and frequent monitoring. I'd ask about that if I were you. Maybe your doctor's will be seeing you more often now. I hope so.

I hope you're getting either Zometa or Xgeva to strengthen your bones. That's crucial. It'll help heal any fractures you have and ease bone pain too.

Good luck! Keep us posted! Kats3

[Barb5]

Welcome to the club no one truly wants to belong to. My BC actually was found in my pelvic bone back in 2013. I'm sure you will do well on new treatment.

[Blossomstix]

Dear Donna jean

Also have mets to pelvis from oesophageal cancer. How are you doing. I am reeling. Any advice?