Mets to spine???
 

Hi ladies,

Just found out I have metasis to my spine in 5 or 6 places. This is my first experience with bone metasis. I am feeling pretty sad as the taxol/herceptin combo seems to be working everywhere else. I am wondering:

-Has anyone from this group experienced something like this before?
-What can I expect with spine/bone metasis?
-Can spine metasis be resolved with treatment?
-What types of treatment are there?
-Could Xgeva caused this?

If anyone is able to answer these questions or perhaps share their experiences, I would be forever grateful. Thank you in advance.

N

Re: Mets to spine???
 

Are you on Tamoxifen as hormone positive bc loves to go to the bones. Zometa or Xgeva are good bone gardeners and have some minor chemo effect too. Stay strong. You will get thru this.

Re: Mets to spine???
 

Hi Becky, I had tamoxifen in 2010 but they took me off it when I progressed. I am on Xgeva now. The Dr called me today and asked me how I felt about SBRT to the affected levels in my spine. Not really sure how he explained it, but its in T3, T4, T5, T6, T7, and T9 of my spine. I wonder if it is the entire vertebrae or just spots?

He ended up recommending we wait 2 months, get another MRI, and then re-evaluate what we should do. He is unsure whether the right approach is to go aggressive because I am so young. My Onc wants to keep me on Taxol/Herceptin bc it is keeping things everywhere else at bay.

Re: Mets to spine???
 

I'm so sorry to hear about this. I don't have any experience with mets to the spine but I know that Tracy (MaineRotteweillers) was recently diagnosed with mets to the spine also. You may want to PM her or read some of her posts to see if they answer any of your questions.

As Becky said, you will get thru this!

Take Care,
Brenda

Re: Mets to spine???
 

Nelly, I went right to your PM before reading this thread so I won't duplicate the information that I sent you privately but I will do my best to answer these Qs so anyone reading here will be able to follow along.

WayTooYoung wrote:

-Has anyone from this group experienced something like this before? Yes! Me, now. I was diagnosed with a compression fracture in late August and have been in treatment since October.
-What can I expect with spine/bone metasis? Expect anything. You could do really well and have very little pain or few side effects, or you could be very painful and develop fractures and nerve pain, or anything in between. Everyone's case is unique. I pray that yours is the first case. How did you learn that you had developed vertebral mets?
-Can spine metasis be resolved with treatment? I understand they can be resolved and with the help of Zometa, Xgeva et.al., you can actually heal the lesions. In cases where you can't, you can get treatments to stabilize fractures (in the case of long bones, you can have sx to stabilize before fracture occurs). I had a kyphoplasty on a Wednesday and went for a three mile hike, in the woods, on Saturday. I hasn't been able to dress myself alone on Wednesday morning. That's how dramatic the surgery was for me.
-What types of treatment are there? Systemics, radiation, hormone suppressors (when indicated) and sometimes surgery are the treatments offered and things to strengthen bone but it sounds like you are on some of these already so it may be a matter of changing things up.
-Could Xgeva caused this? I cannot speak directly to this but I do not believe so since it is thought to have some targeted benefit.
So sorry you are in this boat. I hope your pain is minimal and that your team comes up with a solid plan. The uncertainty was the worst for me. Now that I have a direction, a plan and objective, I am geared up and ready. Don't get me wrong, I have some very dark moments and I divulged in my PM to you some of the realities that I have come to terms with but I am ever optimistic.

Re: Mets to spine???
 

There is another anti hormonal you could try without having to shutdown your ovaries (which is an option) Faslodex which is what Dr Slamon prefers. You should discuss this and also the possibility of using Lupton or other drugs to shutdown the ovaries. If you are going for Herceptin treatments anyway, Faslodex is an option as it is a monthly injectable (after the loading doses which is a shot followed by another 2 weeks later then monthly after that). Or Lupton to shut down the ovaries from making estrogen. Discuss with your doctor.

Re: Mets to spine???
 

Thank you Tracy for your detailed responses to my questions. Now that I am not in pain anymore, I feel hopeful again. I PM you back a long response too. Saw this post after lol.

Becky, I had an oopherectomy awhile ago. I didn't want to but my former Dr kept pressuring me to. Finally gave in.

Re: Mets to spine???
 

Waytooyoung,

Whatever you do, do it quickly. Don't let anyone convince you that 1 or 2 months wait is the way to go. My wife had mets in her spinal fluid and they traveled to her brain. From diagnosis to the end was less than a month. Don't want to seem hyper or try to scare you, but waiting should not even enter into the discussion.

Ted

Re: Mets to spine???
 

Some ideas:
Add back in lower dose of Tykerb, concurrently w/regime (2 or 3 pills a day) OR add in Perjeta. If you've only been back on herceptin for a bit, I'd see if adding in Perjeta to your regime gives you control to mets. Whack a mole approach is probably as good as any -- ultimately we need systemic control but zapping can be very effective.