Hello ladies.
I am hoping I can get some feedback from some of you. I am a 33-year-old mother of three small children. I was diagnosed with stage iv breast cancer on Nov. 15, 2010 with mets to several areas of bone including my hip and my skull. I am ER/PR positive with a BRCA 2 mutation.
I was lucky to respond very well to 6 rounds of chemo, a lumpectomy and oophrectomy as well as 6 weeks of daily radiation. I am on Aromasin now in addition to monthly Zometa infusions. For now, the cancer has backed off and I am doing well but I need some advice.
Firstly, how do you all keep your anxiety in check?

Secondly, how the heck do you lose the weight from all this? I am exercising daily as well as watching EVERYTHING I eat but no luck?

Did any of you have your thyroid checked post radiation/chemo?

Does your body feel very different? I feel sluggish and sore when I wake up in the morning? My body is stiff. I feel like I have the body of an 82 year old!

I would LOVE feedback of any kind. Based on what I have read here you all seem to be so hopeful with one another.

Thanks!
Kate

Hi Kate,
 
I'm not stage iv but know the other ladies will be along to comment shortly but do want to say that Arimidex leaves me just as stiff etc in the mornings and after exercise too so Aromasin may be your culprit!
Glad to know you're doing so well after treatments too!!

Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

Hi Kate....welcome, but sorry you find yourself here with the rest of us stage IV people. Good to hear you are responding to your treatments. 

Your soreness and stiffness is most likely due to the Aromasin which can cause joint pain. I am on Femara (a similar hormone therapy) and have the same symptoms. I have heard some of the ladies here talking about trying the different drugs and some do better on one versus the other. It is something you could talk to your doctor about. I myself haven't tried one of the other drugs.

As far as the anxiety....I don't know if it ever goes away but I am able to not let it control my daily life. My situation is different as I don't have young children at home, but try to live in the day to day moments. Yoga and walking my dogs seem to help me. Going to Starbucks and losing myself in a book, probably something hard for you to find the time for. I guess what I am trying to say is try to so something you love and be kind to yourself everyday. Give yourself something to look forward to and enjoy the simple things.

I know this may be easier said than done but it is helping me tremendously. 

gail

Age @ DX 47
12/05 Axilla lymph node biopsy pos
1/31/06 bilateral mast
IDC 3cm 10+ lymph nodes
Stage IIIc/High Grade
A/C x4 Taxol x4
Rads x 35
TX done 9/06, Tamoxifen 5/09,Femara
5/09 PET Scan mets to liver & nodes
7/09 Avastin/Ixempra x8
1/10 Avastin/Xeloda x ?

Thank you Tricia and Gail.
It is interesting with the stage iv cancer, sometimes I really feel like I am an island. So, it is terrific to have people to check in with and ask questions. I really appreciate your feedback. I will ask about the aromasin. I just can't figure out the stiffness and soreness very strange.

Any suggestions for the weight loss? You guys are such a nice resource, I figure I ought to tap you for that too?

Suggestions welcome ;)
Thanks again ladies!
Kate

Kate my Onc suggested I take a daily supplement of Glucosamine/Chondroitn for the stiffness and it does help but you need to be taking it about 4-6 weeks to notice a difference.
 
As to the weightloss I find walking an hour most days or swimming help me to keep my weight stable (although that may change as I recently finally quit smoking !!)   but although weight loss is great sometimes even toning up can help us look like we've lost some, I find the aqua aerobics great for this and really good fun too. 
Not many people post here but thought I'd copy the link for you in case you see any tips to help, one of our members, (Elaine) has posted quite a lot on these threads about working out and weight loss so you could also send her a pm if you like.
Good luck and keep us posted!!
 
http://apps.komen.org/Forums/tt.aspx?forumid=71

Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

My mother is the soon to be non-survivor in this case. I am on here in hopes of making friends with a few women who may be able to walk with me through this time in my life, as i am slowly saying goodbye to my mother my best friend everyday. the doctors have given her between a week and a month. there is a lot more to her story i will get more in depth with anyone interested in it.
i also am interested in seeing my personal doctor as soon as i make it back to my home state once this is all done and over with to find out about a mastectomy and reconstruction as i have several factors that make me very high risk for getting breast cancer. i look forward to meeting new friends and hopefully making many new lasting relationships!
thank you a head of time for any support and information you can help me with,
jeri-lynn evans My mother is the soon to be non-survivor in this case. I am on here in hopes of making friends with a few women who may be able to walk with me through this time in my life, as i am slowly saying goodbye to my mother my best friend everyday. the doctors have given her between a week and a month. there is a lot more to her story i will get more in depth with anyone interested in it.
i also am interested in seeing my personal doctor as soon as i make it back to my home state once this is all done and over with to find out about a mastectomy and reconstruction as i have several factors that make me very high risk for getting breast cancer. i look forward to meeting new friends and hopefully making many new lasting relationships!
thank you a head of time for any support and information you can help me with,
jeri-lynn evans

For Momma

Hi,
 
I'm so sorry to read about your Mom and hope she gets longer than the Dr says, is she still being treated or under Hospice care?   I lost my own Mother eighteen months ago but not to  breastcancer but can relate to how you feel as she was my best friend too.  I found much support on the Motherless Daughters group on Facebook so if you have a page there you may like to search for this group.
 
Regarding your plans of a mast and recon, of course this is your decision but please dont jump into making it right now while your emotions are so high, once done it can't be reversed of course so do reseach more into this, have you had a gene test done ?   If you take a look through the recon/surgery forum you may get some idea of whats involved and also google Facing our risk where you'll get lots of advice about this. 
My best wishes to you and your Mom at this time and I'll be keeping her in my thoughts..

Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

Hello ladies.  I know that I don't post regularly but I have on many occasions received wonderful support and information from the ladies on the Sunbearz forum so I wanted to write a post to let you know that my mother passed away on the 15th.  We found out the week before Christmas that the cancer had spread to her brain and then about two months later a tumor on her spine paralyzed her.  We started hospice on 4/3 and she was gone by 4/15.  It was very peaceful and we had a couple of great days that last week that I will cherish forever.

I cannot tell you how many times I came to this forum scared and looking for support and you all were always so caring and forthcoming with information.  The support I received on this message board has surely helped me to get through these past 4 (almost 5) years.  Again, thank you all from the bottom of my heart.

Warmly -

Brooke

Caregiver to my mother, 61yo dx 10/19/07
stage IIIB, 6cm, grade 3, triple negative
1 +node
4 A/C finished 12/17/07
1 Taxol started/finished 1/2/08
3 Taxotere finished 3/4/08
radical mod mastecotmy 4/2/08
36 rads after surgery
dx stage IV with mets to the lungs 11/9/09
taxotere/avastin 11/09 to 1/10
Since 1/10 she has tried the following: abraxane, xeloda, ixempra, gemzar/carboplatin.
Begins navelbine 10/11.

Brooke thank you for coming here to tell us but I'm so very sorry to read about your Mum, it must be comforting though to know she's at peace now and her passing was a calm and peaceful one too. 
I know this is a very sad and emotional time for you so please know we're here for you too should you need any support over the coming months and my deepest sympathy to you and your family once again. (((((hugs)))))

Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

my name is peggy, diagnosed in 12 /2010, finished six months of chemo in sept of 2011. Now dealing with more skeletal pain---but trying to exercise as much as possible. Still holding a full time job.