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Stage IV Breast Cancer with Mets to Bone

amayberrymy's picture
amayberrymy
Posts: 1
Joined: Jun 2011

I am just looking for others out there in a similar situation as me.  I'm 35, married with a 4 year old daughter.  I am going into my 3rd year since my original dx which was Stage 2 April 2011.  Reoccurence in Sept 2012 with Mets to bone.  I am taking Xeloda now after trying Tamoxifen and Femera both of which failed.  Hoping for some success with this new treatment.

New Flower
Posts: 4141
Joined: Aug 2009

Welcome to the board.

I have similar diagnosis and just completed 8 months of Xeloda. I am also on Xgeva monthly shot to improve structure of my bones and prevent fractures.

My initial diagnosis was Stage III in 2008 at the age of 46. Four years later cancer has progressed to my bones showing in 10 different bones. Last year my son has graduated from college, in this respect my situation is different.

Xeloda treatment was reasonable for me, however when I learned about mets all over my body while on Tamoxifen,  and that Chemo is the only option for me I was in shock. 

All ledies and gentelments on this board are very supportive. Please come back for support and advice. If you have any questions about Xeloda please PM me I will be happy to help. We have seen improvement from Xeloda treatment and very optimistic for the future

New Flower

 

Debaludoll's picture
Debaludoll
Posts: 3
Joined: Mar 2013

Hello, I know exactally what you are going through. 10yrs later I had my reoccuence tomy bones. That was in Sept. of 2013. My children where 5,2 and 1 yrs. of age and I was VERY aggresive with my treatments and did ALL the surgery I was suppose to. So no I did not and was shocked it came back after 10 yrs. Although in the back of my mind I always knew it was a possibility. So bone mets are fine for me and its been 6 months on Fulvestrant and Xgeva {denosumab}- to make bones stronger. I feel much better and bones are healing and Im actually able to get back to being active. I fractured my Clavicle bone { PAINFUL} and on the tennis courts, who knew you can fracture a bone with no impact of any kind. I posted just the other day for my first time so Im also new here.  If you ever feel like talking inbox me your number. Best Wishes to US! Debbie

col43
Posts: 1
Joined: Sep 2013

I have bone mets and 2 days ago my clavicle fractured.  I had a lesion on that bone.   i am in excruciating pain and can't do anything for myself since it is on my right side and I am right handed.  How long did it take for the severe pain to subside and how long til it healed?   I'm so depressed right now.  All I did was push myself off from bed and it popped.  

SIROD's picture
SIROD
Posts: 2204
Joined: Jun 2010

Hi,

If that is your daughter, she is very beautiful like the lady behind her.  I am sorry that you have a need to join us.  You came to a good discussion board and there are many women who have bone mets.  My bone mets were found in 2000 in two ribs.  For me Arimidex gave me 8 years of NEAD (no evidence of active disease).  Then it returned full blast in both lungs, lining and the ribs too in 2008, so I am still here.  

I am on Taxol as I didn't have this chemo the first time (CMF) in 1994.   Xeloda would interfere with the folic acid that I used to offset side effects of Methotrexate (another chemo drug) used for my uveitis.  I can't answer your questions on Xeloda but New Flower can and she is very good.

I failed Tamoxifen before going on Arimidex, sometimes, drugs don't work for whatever reason.  Down the line I might try them all over again.  So don't despair.

Wishing you well on this journey you didn't want to make, none of use wish we had. 

If you have questions, ask them, someone will have some insight.

Best wishes,

Doris

hope67's picture
hope67
Posts: 169
Joined: Apr 2013

I am sorry for the reason you came here and I am sorry for all you are dealing with. I am not in similar situation, just wanted to wish you all the best.

Carmen

fauxma's picture
fauxma
Posts: 3547
Joined: Dec 2008

Hoping that this will do a good job for you.  I have not experienced what you are going through but there are others who have, among them New Flower, who can share their knowledge with you.  Good thoughts for this to be successful.

Stef

tasha_111's picture
tasha_111
Posts: 2052
Joined: Oct 2008

Hi, I was dx 2007 her+ and st2.  had 5 years and 3 months clear and it came back as st 4, spine, sternum, breast and lymph nodes.  I am on a differenty regime to you.  Daily exemestane pills and a once monthly infusion of pamidronate.  Got told yesterday that the spinal tumour is stable .  I  was finding the pain terrible  but a dose of dexemethesone daily has sorted all that out.  Wishing you only the very best.  TASH xxxx

New Flower
Posts: 4141
Joined: Aug 2009

Hi Col43

sorry for your painful experience . I had rib broken due to mets and it was not fun. I did nothing just a simple move to watch TV and pain was awful, like a spasm. I assume clav bone even more painful. We continue with treatment plan that was oral pill Chemo Xeloda and bone strengthing shots Xgeva. my bones healed as get control of cancer. I also used pain medications including Lidocaine patch which I wear every day for 12 hours for 1 months. There are stronger pain medication patches , please ask your doctor for help.

Your doctor and you need to figure out your treatment plan for metastasis which will help bones to heal. 

Please do not be depressed right out to suppress your pain.

hugs and let us know how are you doing

New Flower

Tasha35
Posts: 1
Joined: Jul 2012

I am 36 years, First diagnosed 2012 stage 2A Lumpectomy and just find out I have mets too the bone spine only, I just started xeloda 1week on and 1 week off, Not Sick at All, just no appeitite, How are you doing with the medication?

New Flower
Posts: 4141
Joined: Aug 2009

Hi Tasha35,

 I was on Xeloda for 9 months from 7/1 to 3/13, I also had Xgeva shots as well. My PET scan and ovllrall halth has improved as a results of this drug. I tolerated Xeloda well, was able to work while had several side effects. Please drink a lot of water, at least 1.5 L a day. Feel free to ask any additional questions.

After Xeloda I  started a clinical trial, which I had to leave de to the side effects. I am currentely on Faslodex shots.  My October CT showed stable. 

Good luck to you. Please update us in the future

New Flower

CypressCynthia's picture
CypressCynthia
Posts: 4017
Joined: Oct 2009

I am so very sorry to hear of your mets.  I had bone and lung mets after a very lengthy remission in 2005 (originally diagnosed at age 33 in 1987).  I was initially treated with radiation, arimidex and zometa (a bisphosphonate).  I was improving clinically, but my onc wasn't happy with my markers and slow progress.  Along the way, my onc switched me to faslodex and xgeva (a different bisphosphonate) and I then went into full remission.   Unfortunately, I had another mets to my liver this year-my ribs and lungs (although beat up) are still in remission.

Interestingly, each time I have had mets biopsied, my cancer has changed.  My initial tumor was ER +, PR + and her2 unknown (no testing back then).  Rib biopsy was ER+, PR neg and Her2 neg.  Liver biopsy was ER neg, PR neg and Her2 +. 

This year, because of the her2 status, I was switched to taxotere, herceptin and perjeta.  I am in remission again, but will be on herceptin and perjeta until they stop working.

The radiation for my bone mets (ribs) really, really eased my pain.  I had fractured 3-4 ribs and was having terrible pain.  The ribs still cause occasional pain, but they are much better.  I had to stop the xgeva this year because of jaw necrosis, but I am hoping that I still have enough in my bones to keep them strong while my jaw heals.

Along the way, I have gotten a lot of second opinions.  My onc appreciates this and I think he believes it is "brain storming" and helpful.  I have stayed with the same onc for all 27 years, but currently am seeing another one more because I choose to have my chemo close to home and have to see onc here too.

My daughter was just 4 when I was initially diagnosed and I know how hard this all must be for you and your family.  If I can help in any way, feel free to private message me.  Sending gentle hugs and prayers for a healthier year.

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