Topic: Needing some support newly diagnosed with bone mets

Hi Cat, 

I know how frightened you must be.  Fifteen years after original bout with BC I was diagnosed with extensive bone mets.  I thought I had terrible arthritis until I could no longer walk. And yes, radiation helps a lot.  I also needed a hip replacement because the top of the femur was too involved to support my weight.   I needed radiation to my spine in order to be able to sit up...I had 10 sessions and noticed a big difference shortly after the treatments were over.  I was already past menopause so was put on femera and zometa.  While I deal with some pain daily...it is manageable just on ibuprofen.  I know everyone is different but I think many of the women on this board have learned how to manage their pain so they can continue with their everyday lives.

 I am fairly new to this board...but know that you can learn so much about your dx from these extraordinary women.

Jackie 

Cat, welcome to the best club no one wants to join. I had bone mets from the get go. lots of pain in my neck. Radiation is a glorious relief.

Yes, i have heard that boney mets have the best prognosis but all you can do is live it one day at a time and react as necessary. Zometa should build up your bones. Honey, I feel like an old hand (having 10 whole months of diagnosis under my belt :). Ask all the questions you need. PM me if you want to whine. You'll be helping newbees in no time. hugs -donna

Hi Cat -- I don't have anything to add to what the previous women have said.  With Zometa and rads this can be very doable and live a long life.  The oophrectomy is not a difficult operation and I am glad I had it -- it's good to get rid of all that estrogen and have a lot more drugs (AIs) available to treat your mets.  A lot of women have done great on AIs. 

There are lots of women with bone mets here (I have liver and bone) so you will get tons of support.  Take care,

Elizabeth

Dear Cat,

I was also stage iv with extensive bone mets.  My first bone scan - my entire spinal column, all the bones in my pelvis, and sternum were completely black - black spots on some ribs also.  Never had severe pain - just thought I needed a new mattress.  I have not had radiation yet to reduce the pain - although an acquaitance has for mets in her spine, and it has helped her greatly. 

I have been on arimidex and zometa since July 08.  PET scans in Dec 08 and Mar 09 showed no active cancer (in breast or in bones).  I had mastectomy in May, so primary issue now is dealing with the bone mets.  Glad I did have surgery, as even though PET scans showed no active cancer, there were residual small tumors and cancer cells throughout the breast according to the pathology report. 

I have all my bone scans on one cd (about 6 total up to now).  It is really interesting to look at the later ones side by side with the first scan.  You can see the black areas becoming gray (which is how normal bone appears) - almost seeing the damage from the cancer being repaired.  My understanding is that the zometa serves to make the bones an inhospitable place for the cancer and so that coupled with the elimination of estrogen causes the cancer in the bones to be shrunk and the bones can repair.  First two zometa treatments took me down for a couple of days - now after 16 months, I go in every month, get my infusion, and head on to work - doesn't really bother me anymore - I make sure I drink lots of water every day - was told that with zometa, I needed to make sure I drank my water to avoid kidney issues.

The ladies on this board are great - I have learned so much from them and they have always responded very quickly to my questions with lots of good information and suggestions.

Will keep you in my prayers. 

Becky

P.S. Cat, I go to MD Anderson, even though I live in Mississippi - everyone there has been so positive - very different attitudes that I found here at home - doctors here were very grim and offered no hope - I am very glad I chose to go to MDA for my treatment.  I am now going out there every 5 months for scans (last visit July, next visit November - will have PET and bone scans) and my local internal medicine doctor deals with the monthly zometa infusions, and flushing my port. 

Hello everyone and thank you so very much for all of your stories and your hugs and your support....you are all so very incredible and encouraging and strong.  I feel so honored (if that is even the right thing to say) to be here with all of you.

First off, sorry for the delay in my response as I'm sure most of you can understand...these past 3 weeks have been rough....all the emotional ups and downs and the information overload. :)  Let's see, I received my 1st Zometa injection 2 weeks ago and I can say that it has really helped with my pain...in fact last Thur I finally really felt like my "old" self again.  I'm starting to get a little bit more painful though and from what I'm hearing this can often happen when it is time for another injection?  The side effects were absolutely aweful  after the 1st infusion....severe pain, fever, weakness, nausea....but thankfully they resided in about 30 hrs (I was counting the minutes) :)   I meet again with my local oncologist on Wed morning and then I go back to MD Anderson for a consultation Wed afternoon.  I've also been referred to another oncologist in the Houston area that I see next week....so a little scared but also kind of excited to hear what they may have to say.   So far, I have been encouraged by what I've heard about bone mets and that they can possibly be managed for several years.  That has really lifted my spirits....The next step after determining my treatment plan is to start working on diet, exercise, my spiritual life and relaxation....lots of work I'm afraid needed in all of those area. :)

Thank you all so much for taking the time to respond to my post and for sharing your stories and your hugs....I can't tell you how much I appreciate all of you.....hugs, thoughts and prayers to each and everyone of you ....

Love to all,

Cat

Reneepals,  thanks I will ask next time....did that help with the nausea?  Do you (or anyone) ever have problems with loss of appetite or nausea at other times?  Just this week I started having problems with my appetite and feeling nauseous especially in the morning.  I also started getting painful again...perhaps because the effects of the Zometa are wearing off?  Just curious.

Cat

Hey skidoo....can you help me understand tumor flare?  When did it start for you?  Did anything help?  How long did it last?  I've been on tamoxifen for about 3 weeks and earlier this week I start having this horrible pain....different and worse than when I was first diagnosed.....it was almost similar to the reaction I had with zometa....terrible bone/joint/muscle pain everywhere but more pronounced in back, hips, legs, knees.  Could this be tumor flare?   Did anything help with the pain?  My oncologist put me on hydromorphone and Fentanyl patches which I think were a huge mistake for me.  I started the hydro at night and thought I was getting some response but frustrated i had to take it every 4hrs so I slapped on a Fentanyl patch....put it on wrong and so when I finally corrected it I really didn't get relief until Thursday evening.   Anyway, pain went away but today (about 36hrs of being on the patch) I developed horrible nausea, reflux and a loss of appetite....I really think this is from the drugs.  I took some famotidine and sucralfate and stopped all my pain meds (ripped off the patch even knowing about withdrawal) and I'm feeling better albeit not 100% normal.  No pain yet but we'll see.  I was wondering if this could all be due to tumor flare which is why my other pain meds weren't helping....they didn't help with my zometa reaction either.  Just curious...so far I feel like my treatments are making me feel worse than anything.....anyone who can share on this please let me know.  I'm very discouraged and down today and frustrated....it seems like I've gotten worse ever since I started treatments...

 Cat

Oh, and the thing you really won't want to hear, is that for me at least, tamoxifen and aromasin have caused my previously minor case of arthritis to become a major pain.  Increased arthritis pain is the tradeoff I'm very willing to accept to keep the cancer under control.  But it still sucks.

  Cat, I really feel bad that you and Skidoo have had so much pain and hope that something can be done soon to get it under control.  Pain is no fun.  The only time I really had bad bone pain with my mets was before they actually diagnosed it as mets to my sternum.  Then after they started me on pamidronate (pre zometa days med) it got better and also I think the tamoxifen helped me with the pain since it shrunk the tumors.  The next time I had bone pain was in my sacrum and a MRI of that area showed a tumor and biospy proved it to be BC mets.....radiaiton got rid of the pain that time.  Now I have some aches and every so often my right shin really hurts, but I recall when I did the hormonal drugs before I had pain like arthritis so I am hoping this means the aromasin  I have started taking again is doing something good.  Bone mets are not anything to be happy about, BUT they aren't going to kill you. 

An update....I'm pain free....for the most part. :)  I really really think (and hope) I was having tumor flare which makes sense why the tramadol and hydrocodone all of a sudden weren't working...same as was for Zometa.  I got so intensely nauseated this weekend that I ripped off my patch and stopped all my meds and voila the nausea went away with a little help from some phenergan (advice from niece who is a pharamacist).  So, here I am 2 days later and pain free and patch free and not nauseated and able to eat.  I think it was tumor flare and all the meds I was taking.  So, I'm so much happier. But, I have 1 more question perhaps some of you can help me with.   I have been terrible fatigued and depressed....is that a normal feeling some of you got after your first Lupron injection?  I had mine on Friday afternoon and the hot flashes and night sweats have been tolerabel but I feel like I'm so utterly depressed...like in this big black hole of despair...feeling like if it ain't one thing its another. :(   Does it get better?  What about the Effexor?  I've been honestly scared to take it after hearing side effects and problems from others and with my recent drug side effects not sure if I want to experience anymore.

Sorry for whining....so many have it worse than me.

Cat

i was also diagnosed with extensive bone mets and after 6 months of taxotere & avastin, i'm on lupron, femara & zometa.  for the most part, i feel pretty good, but there are days that my bones hurt so bad that it's all i can do to get out of bed.  since i'm new to this site, i'm wondering what the future holds for keeping the mets in the bones and out of the organs....do any of you have any feedback on this?