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Stage 4 - Bone Mets

MichelleLynn
Posts: 17
Joined: Apr 2013

Hello, everyone!

 

I was diagnosed a few months ago with Stage 3 breast cancer, but after the PET scan results, I have mets to the pelvic/spine areas.  I did several rounds of radiation and now I am on Tamoxifen and being given Zometa injections every month (going for my 2nd one this week). 

I am 42, married, and have 3 young children. I am scared, of course.  I know nobody has an expiration date, but I am worried about not being able to see my kids grow up.  Nobody can predict the future as it is, but having something like this really makes it something extra to worry about.

I have read some posts on here and feel encouraged about prognosis as I have read some very inspirational survival stories of others.  I hope I can be like those others who have been living with this for many years - and I hope you have many MORE years!! 

My breast surgeon did mention treating it as a "chronic" condition...I have heard of that elsewhere, as well.  I will take chronic any day of the week, if I can!

I just want to say that I am glad to have found this forum and thank you all for being here!

Take care!

Michelle

Patti1967
Posts: 186
Joined: Mar 2013

Welcome Michelle:) Stay strong and stay positive!  There are many great supportive Pinks here that will be there for you.

Best to you,

Patti

MichelleLynn
Posts: 17
Joined: Apr 2013

Thank you, Patti!!!!

New Flower
Posts: 4094
Joined: Aug 2009

Hi Michelle

welcome to our CSN family. I am among those lucky ones with stage IV. I was I initially diagnosed with stage III in 2008 and four years later with stage IV in June 2012. Both times I did Chemo and anti-estrogen therapy. I am not here as often as I used to. It is a good place for support and encouragement 

wishing you the best with your treatment

New Flower

VickiSam's picture
VickiSam
Posts: 8412
Joined: Aug 2009

I am so sorry that you have breast cancer --  Sweet Sister~ . As
wonderful as we all are, I think I am not going out on a limb by saying none of
us ever wanted to be HERE~ battling with and talking about Cancer. It has
affected so much of our lives, as you know only too well. And whereas we can be
smart-mouths, and silly, bottom line is, we have all been altered by this
disease.

Wish that I had The Magic for us all....but of course, I do not. I hope that
venting and being so brutally honest was cathartic for you, and I for one am
pleased that you feel the safe haven of this room to do just that. If this place
isn't the true definition of support, I don't know what is. 

Gentle hugs, prayers and positive thoughts going your direction.

Vicki Sam

 

MichelleLynn
Posts: 17
Joined: Apr 2013

You are right...nobody wants to be here, but if you have to be here, it's best to be among others who care and understand, so I'll take that.  :)

I wish you had the Magic Pill, too...I wish I had it for everyone, as well. 

I appreciate your words, Vicki.  Thank you so very much. 

Hugs to you!!

MichelleLynn
Posts: 17
Joined: Apr 2013

I appreciate that, New Flower!  Thank you so very much! It's encouraging to see people still going strong - like yourself!  Living your life, I see.  Very happy for you!  :)

camul's picture
camul
Posts: 2117
Joined: Dec 2010

I too am stage iv. I was diagnosed 1/2 IDC in 2002, went 8 1/2 years with ned.  Was diagnose iv 9/2010.  Have been on 5 different chemos, Xgeva, etc...   everytiime one stops it seems there is another one!  It is not an easy road by any means, but this group is very supportive and encouraging. 

Found keeping a sense of humor helps, as well as a lot of support from whereever I can get it:)) 

Wish you the best!  How old are your children?  I think it is the kids that keep us going...

 

Hugs,

Carol

MichelleLynn
Posts: 17
Joined: Apr 2013

Hi, Carol!

 

Thank you for your kind words.  I appreciate that. 

I'm just really glad that we have options with this crud.  If one chemo doesn't work, they try another...and THAT is a good thing.  I hope you have continued success with it all!

 

My kids are 12, 8, and 2 (well, she will be on May 2nd).  You are right!  Kids really DO keep us going!  I'm just tring to maintain a positive outlook, but I do have my moments.  Definitely need the humor and the support!  You've got me, if you'd like!  Just know that, too!  :)

 

Thank YOU!!

SIROD's picture
SIROD
Posts: 2198
Joined: Jun 2010

Dear MichelleLyn,

 

I was diagnosed with breast cancer 18 1/2+ years ago at the age of 47.  I am ER+ and after the initial treatment with chemotherapy, I went on hormonal drug therapies and used them for 18 years.  I still have one more hormonal drug therapy to use but I am giving those renegade cells a chance to forget them before trying Afinitor and Aromasin.

 

MBCN (Metastatic Breast Cancer Network) have wonderful stories of women who have lived 10+ years with the disease.  My heroine is Rita Arditti who began her journey at age 39 and lived to the 30 years with metastatic breast cancer.

 

You can read her story or listen to it.  

Please copy and paste the following (still can't figure out how to make it work with a click)

 

http://mbcn.org/get-involved/details/my-story-rita-arditti/

 

You can read the other women stories by copy and pasting the following:

 

http://mbcn.org/get-involved/category/10-years/

 

I hope this helps.

 

Doris

 

 

MichelleLynn
Posts: 17
Joined: Apr 2013

Hi, Doris!

Wow!  18 1/2 years!  LOVE that!  YOU are amazing!!!  I am soooo happy for you. Sorry for your struggle as I know it hasn't been easy for you, but happy that you have done so well.

I wonder if this is the same person I have heard about, too, who lived for 30 years.  If we can all follow in her footsteps...!

Thank you so much for the links. I am a member of that site and visit often.

Wishing YOU a wonderful day, Doris!  Thank you because I have been having to snap myself out of some moments lately...and maybe you have done that for me today.  HUGS!  :)

McMarty's picture
McMarty
Posts: 200
Joined: Nov 2012

Hi Michelle, 

I was diagnosed at Stage IV (bone only metasitisis) back in 2009.  Maybe what my Dr says will be encouraging.  He keeps reminding me 'bone mets are not life threatening.  Organ mets are dangerous'  They have kept it out of my organs for 4 years now so that's good news. 

Also, everyday you get now is one more day for some researcher somewhere to think up that one combo that finally does the trick and cures this mess.  Pray for them!

This is not a gift by anymeans but realizing the value of time is!  You will see your priorities shift and your loves deepen.  Every minute will mean so much more from now on.  SEIZE THEM!

I'll admit there have been some painful days when I don't want to play anymore.  And I am weary now - sick of having cancer and I'd like to trade it for something else.  But when I think back over the years since my diagnosis, with 2 cruises, swimming with dolphins, scuba diving, lots of volunteering at my kids schools, Christmases that didn't seem possible as sick as I was in 2009, there have been SO MANY days and JOYS in those days that I am glad to still be here.

And they are closer to a cure.  It's a bumpy road, but its a road not a dead end so to speak!   

 

missrenee's picture
missrenee
Posts: 2137
Joined: Apr 2010

I was diagnosed in Nov. '09 with Stage 3 invasive ductal ca with 10 positive lymph nodes.  Had surgery, chemo, rads, then in Jan'12 I was diagnosed with bone mets in my spine/pelvis.  I have been on Faslodex injections/Xgeva injections monthly since then.  My last PET scan 6 months ago was clear!  I am due to have another PET this month.  If the PET continues to be clear, I will be the happiest girl on earth!

I try to keep a positive attitude, my 2-hour a week support group does wonders, I have a loving, caring family and great friends.  I don't want to squander whatever time I have left with saddness or worry--so I try really hard to make the most of each day.  We're only human, though, and from time to time the worries creep in.  I find joy and blessings in each and every day and I hope you can too.  With 3 beautiful children--you have a lot to live for.  Stay strong and keep on keeping on.  This forum is a wonderful place to visit--to talk, ask questions, cry, laugh or just vent.

Good luck to you.

Love and hugs, Renee

MichelleLynn
Posts: 17
Joined: Apr 2013

Thank you for chiming in, Renee.  The support here is outstanding and I appreciate you taking the time out to respond!! 

 

I am SOOOO happy for you!  I'm glad that your PET scan was clear. That is terrific!  I hope that it continues to be clear!! 

I am keeping a positive attitude, too.  I have had my moments (like you), but I am learning to stop reading so much here on the internet (I'm bad with that!) and just focus on what's important and live my life.  With 3 kids, a husband, and a job (and a biz that I am thinking about revamping and continuing) that my mind would be pretty occupied, right? :) 

I am so happy I found this forum and lovely and supportive people like yourself, Renee.  Thank YOU!

 

Hugs!  Hugs!  Hugs!!

debnbill526@com...
Posts: 6
Joined: Apr 2013

Your story is every enlightening.  If I may ask, were you HER positive or negative.  My mom was diagnosed 1 year ago with Stage IV mestatic breast cancer (IDC); she is negative.  She had a masectomy and they removed 5 lymph nodes (all tested positive for cancer).  She originally began IV chemo and did great on it; actually gaining weight.  After her masectomy, they put her on afinitor and arom??? (combo drug)--she has lost close to 20 lbs in two weeks; she has no appetite;she's really tires; and has developed some type of acne sores on her neck, back and face.  

I feel like I am falling apart watching her go through this; I know a bit selfish of me because she is the one actually going through it.  As a survivor, which you are, can you give me any advice on how I can help her through this? 

McMarty's picture
McMarty
Posts: 200
Joined: Nov 2012

Just being there means so much.  You know your mom, help with what is hard for her and let her do what she can do and likes to do.  If you think 'hey we didn't used to have dust bunnies under the TV' just sweep them up, they are probably bugging her too.  Let her use her energy for things she enjoys.  For me that's what gives me the will to keep fighting.

MichelleLynn
Posts: 17
Joined: Apr 2013

Hi, there!

 

What your experiencing is quite normal with your mom.  You just need to be strong for her.  Falling apart is normal, but she will probably feed off of your strength and support - which I'm sure you give her plenty of.  :)  You are NOT being selfish, so please don't even think that. 

Support her. Make her laugh.  Probably just being there for her means the world to her. 

You might want to talk to her doctor about some help with the side effects.  There may be some things that can help her.  I only have done radiation, so I haven't done chemo, but I have heard that there are many areas doctors can help with to help ease the side effects. Definitely check!!

I did not have much of an appetite (and sometimes I still don't) while going through radiation.  She HAS to eat, though, to keep up her strength. Is there anything that she likes?  Let her indulge on what does sound good to her.  Sometimes there are things few and far between for me.  My husband tells me it's just like when I was pregnant!  LOL  I also will drink Ensure - especially in the morning because sometimes I am bad about a really good breakfast.  But just maybe ask your mom what she would like to munch on...maybe some vegetables, fruits...etc.  Fill her up on nutritious food rather than junk when she does eat. 

I know this is difficult.  She CAN do this...and so can YOU!  You are a GREAT daughter!!!

Wishing you all the best!!

debnbill526@com...
Posts: 6
Joined: Apr 2013

Your story is every enlightening.  If I may ask, were you HER positive or negative.  My mom was diagnosed 1 year ago with Stage IV mestatic breast cancer (IDC); she is negative.  She had a masectomy and they removed 5 lymph nodes (all tested positive for cancer).  She originally began IV chemo and did great on it; actually gaining weight.  After her masectomy, they put her on afinitor and arom??? (combo drug)--she has lost close to 20 lbs in two weeks; she has no appetite;she's really tires; and has developed some type of acne sores on her neck, back and face.  

I feel like I am falling apart watching her go through this; I know a bit selfish of me because she is the one actually going through it.  As a survivor, which you are, can you give me any advice on how I can help her through this? 

debnbill526@com...
Posts: 6
Joined: Apr 2013

Your story is every enlightening.  If I may ask, were you HER positive or negative.  My mom was diagnosed 1 year ago with Stage IV mestatic breast cancer (IDC); she is negative.  She had a masectomy and they removed 5 lymph nodes (all tested positive for cancer).  She originally began IV chemo and did great on it; actually gaining weight.  After her masectomy, they put her on afinitor and arom??? (combo drug)--she has lost close to 20 lbs in two weeks; she has no appetite;she's really tires; and has developed some type of acne sores on her neck, back and face.  

I feel like I am falling apart watching her go through this; I know a bit selfish of me because she is the one actually going through it.  As a survivor, which you are, can you give me any advice on how I can help her through this? 

debnbill526@com...
Posts: 6
Joined: Apr 2013

Your story is every enlightening.  If I may ask, were you HER positive or negative.  My mom was diagnosed 1 year ago with Stage IV mestatic breast cancer (IDC); she is negative.  She had a masectomy and they removed 5 lymph nodes (all tested positive for cancer).  She originally began IV chemo and did great on it; actually gaining weight.  After her masectomy, they put her on afinitor and arom??? (combo drug)--she has lost close to 20 lbs in two weeks; she has no appetite;she's really tires; and has developed some type of acne sores on her neck, back and face.  

I feel like I am falling apart watching her go through this; I know a bit selfish of me because she is the one actually going through it.  As a survivor, which you are, can you give me any advice on how I can help her through this? 

MichelleLynn
Posts: 17
Joined: Apr 2013

Thank you, McMarty!!

My doctor is encouraging, too.  We are lucky to have optimistic doctors because I have read some others' posts who don't seem to have that.  Nobody has an expiration date. That's for sure!

My doctor seems similar to yours...kind of treating it like more of a chronic condition.  I saw him today (because I had to go in for my Zometa injection) and he just pretty much acted like we will wait until next month to check the tumor markers to see if this is working...and if not, we'll move on to something else. Simple as that.  I'm not trying to make light of our situation, but you know...I like that there are other options out there for us and that this is not doom and gloom....because I have had my moments of feeling that way (we all have).

You are SO right about seizing moments.  I am due back at work on Monday and going to find some sort of normalcy with that for now.  I have been lucky to not miss out too much when it comes to things with the kids as my company has been very good about it, so I will continue to do that every chance I get.  Thank you for that. 

You are very inspiriing!  I LOVE that you swam with dolphins and went on 2 cruises!  That is fabulous!  Live your life! Definitely!! 

I just really want to say "Thank You!"  I think you are wonderful.  I wish you ALL the best and do hope that we can continue to communicate here. 

HUGS!

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