bone mets survivors

riverinerabbit · September 2007

H Pat, thanks for all your supportive comments. I wondered how your jaw necrosis begun. I had an abscess on my gum after my last chemo, bit it's cleared now.

I often wondered if my pathology could have changed to HER 2 +? What is a MUGA scan ?

I am so glad you are doing well! Am on CEF, sure gets harder the 3rd time around with chemo.

Blessings to you all,

River

DEAK95 · September 2007

Hi again River,

The Jaw necrosis started feeling like a wisdome tooth was coming in sideways on my lower jaw for about 4-6 months and then poked out like a chancre sore but then came through the gum and extended sideways about 1 inch. I even had to shave down the teeth on upper and lower jaw during this process since i couldnt close the jaw properly. I had Hyperbaric Oxygen treatment and the exposed bone has broke off and it's seemed to heal behind this area so there is no more exposed bone, for the moment. This has been going on since last Nov/Dec till now!!!! It's good, right now!!!! Pat

macs56931 · September 2007

Dear River,

I was diagnosed with bc in 1993, had mastectomy, Adrio/Cytox chemo (I'm one of those old timers who spent three days hanging over the toilet after each treatment), and radiation. In 1997 I was diagnosed with bone mets. Since then I have been on Tamoxifen, Aromasin, Fermara, Faslodex, massive doses of Estrodial, Zometa, Xeloda, and in July was diagnosed with liver mets and am now on abraxane and avastin. I've had two radiation rounds on my legs but mets elsewhere became inactive after hormonal treatment.

I normally have a bit of discomfort in the bones where the cancer is becoming active enough for treatment so in that way I'm lucky. I catch it early in the process. The bone mets in my femurs have led to other issues but I won't go into that now. Just know that I'm 10 years with bone mets and counting.

Hang in there,

Diane

riverinerabbit · September 2007

Dear Diane,

I am sorry to hear your livers involved - It gives me so much hope and encouragement when I hear of bone met survivors like you. How wonderful to have 10 years like that (and counting). I cherish each day, and hope to paint many a masterpiece.

Thank you for your inspiration.

love River

riverinerabbit · September 2007

Pat, what an awful experience for you. I am glad it's getting better. Take care,

River

Helen1 · September 2007

I was dx March 05 w/ extensive bone mets to the mid thoracic spine. Over the next 2 years I took taxol & carboplatin, then taxotere, aredia (stopped due to ONJ) arimidex, femara, and tamoxifen, with no results. In January I started on xeloda. Tumor markers went from 734 to 91 as of last August. Other than side effects of the xeloda, and fatigue, I have very little pain, work full time as I have since May 05, and I do pretty much what I want to most of the time

Helen

riverinerabbit · September 2007

Hi Helen,

Seems to be a trend Xeloda for bone mets, being the most effective ?

Hanging in there !

X River

mom2acat · October 2007

Hello ladies;

Just an update on me. Today I had my 7th Zometa and my 7th Faslodex injection. My lab work continues to show improvement, but my doctor said it was time for another bone scan. He didn't seem to be worried about anything so I think it's just to see how the treatment is working. It's scheduled for October 30th.

riverinerabbit · October 2007

So glad your lab tests are improving. Good lck for the 30th.

River

holdenbryc · October 2007

how long did it take for the faslodex to take effect? onc is saying 5-6 months b4 see any improvements

riverinerabbit · October 2007

I was only on it for 6 months and it did not respond. Maybe we should have tried it longer ?

How can one find out more ?

mom2acat · October 2007

My tumor markers started going down after just a couple of injections; however, I also had radiation and am getting Zometa too, so maybe mine went down because of a combination of those things.

My CA 27-29 was 84 in April; and my labs from 2 weeks ago showed it to be down to 19.

riverinerabbit · October 2007

It's a good sign any way ! Rads/Zometa and Faslodex, good combination. I've been onto the web site for Faslodex, and can't find time scale info! Perhaps that sort of info's only for Physicians.

Let us know about your bone scans, holding thumbs.

Having my bone scans and CT end of next week to see if the CEF's working. It's really been TOUGH. Another three to go. It's sure 'touch and go'.

callie447 · October 2007

A MUGA scan is a heart scan done to see if your heart is strong enough to endure the treatment that is planned for you. I just had one done a couple weeks ago as I have bc (breast removed in Aug) and was due to start chemo today BUT I found out yesterday that the bone and CAT scans show bone mets to spine and skull so I have to do a PET scan and skull x-ray before chemo starts. They likely will need to change my treatment plan. The bone mets really scare me. It felt like it was a death sentence and I am afraid the skull met may go to the brain. So glad to find this site and see there is some hope.

riverinerabbit · October 2007

Don't worry to much. The bone mets will be dealt with.

PET scan will indicate what's active. I showed skull mets as well, and some have gone with hormone treatment. Others are still active. I dont know if that could go into your brain, but radiation would sort that out. Many options open.

Take care,

ahaha · October 2007

We must be on about the same schedule. I'm taking Zometa and Faslodex at Mercy Hospital in Baltimore. It's been working well. I started this in Feb. of 2007.

riverinerabbit · October 2007

Hi,

Has your specialist told you how long before the Faslodex kicks in ? My bone mets are active again, I was on Faslodex for 6 months and am now back on chemo ? I've heard it can take a few months to kick in, might be we didn't keep at it for long enough?

callie447 · October 2007

Thank you for the reply and encouragement. Hearing that from someone who is already dealing with bone mets certainly helps. Bless everyone who is going through dealing with this ugly disease. I am doing well "holding together" and trying to stay positive but some days it is more difficult than others.

Janice54 · October 2007

Hi River,

I was dx first time with bone mets in Oct 06. Started tamoxifen in Nov 06 and in July 07 I was NED. I also have had no side effects. I am er+, her2-. I believe a positive attitude and a change of diet also helped alot.

Anonymous · October 2007

Hi

Was intially diagnosed at stage II in 2003 at age 32. (30 of 36 nodes positive!, ER+, PR+, Her2neu+++) Did 4CEF+ radiation + 4 Taxotere. Then tamoxifen for 3 years. Arimidex for 6mnths. NED for almost 4 years

During a routine annual bone scan in April 2007, they found a single area on the spine. Did Aromasin + Bondronate (bone strengthening med) for 3 months. As we (me n the onc) wanted to tackle it aggresively, am now on 2 cycles of Herceptin + taxotere followed by 10 of herceptin + navalbine.(all cycles of 21 days) Bondronate continues.

Will beat it this time.

Love n luck

Shafali

debman · October 2007

I've had bone mets since 5/04. Have been on EVERY hormone known to man (I was ER+) but they didn't work. I was on Xeloda from 1/05 until 7/07 and that worked wonders.

Started Gemzar on 8/07 - just had PET scan that showed stable mets (no organ involvement) and my CA 27/29 went from 333 down to 221 after two rounds.

Hoping to get the CA 27/29 back down to 28 (which it was a year ago this summer).

I also don't eat sugar. Nothing white (potatoes, pasta, etc.) and take a regular vitamin, calcium and 1000 mg of vitamin D a day.

Hope that helps. You CAN survive this.

Deb

riverinerabbit · October 2007

Deb, you are an inspiration. THank you. My bone mets started in 2005, no organs, only nodes in mediastinal area. My Ct results today, no organs and more nodes diagnosed again in July are all gone. Bone mets still there and look more active on the bone scan. No new ones. Onco thinks it's the chemo doing it's bit. (CEF again). No more hormone options open for me, I am pr+ and er+ Her2 -. I am an 8 year all in all survivor. My PET scan in Feb was clear, in July, it lit up like your xmas tree. Xeloda seems a good option all round. I've heard 7 days on and 7 days off helps with the side affects, also a low dose non stop.

God luck with the Gemzar. Please keep in touch, I like your attitude towards this disease. I always tell people that this cancer doesn't define who I am.

X

riverinerabbit · October 2007

Hi Janice, Glad to hear you have NED. I so agree with diet changes and a positive approach. I took owner ship of my Onco visit today. Armed with my note book of questions I learnt from all of you.

My Onco was kept ON HIS TOES. Great guy and it makes it easier, (I think), when a little brainstorming can be done.

Cheers.

feeval · November 2007