How Many Are We?

GoodbyeGirl I can only go from my own experience but this flipping back and forth to the dark side is totally normal. We spend too much time there in the beginning and we learn to stay on the side of hope and light. How about when you start feeling low set an egg timer for five or ten minutes depending how crappy your feeling let in run. Recognize your feelings and then when the timer goes it's time to stop. I found the crying and at times it was bad only made me feel worse. Then I started thinking how it makes my family feel and do I want this to be my legacy. Baggy eyes and a red face ...no. I don't think the doctors know everything this disease is different for every person that has it. At their statistics I frown my husband is a scientist a physicist and he finds it very interesting how they come up with their life expectation. I just ignore that crap no doctor is going to tell me when my number is up.

Do you have family or friends close to keep you busy? Crowds of positive folks help tremendously . Spring helps too , exercise diet. There is a ton we can do to help our body . Sorry I rambled a bit. Don't let yourself stay down its not good for you.

Wendy

not sure what number I am but i was diagnosed a month ago. Original dx was 2009 idc llb 3/10 lymph nodes. I did a clinical trial with more chemo than most to see if it would help in recurrance. It didnt.

I am now 39 and a single mom with 6 children. 3 at home. 2 out of the house grown and 1 that i had to send to his fathers house because he isnt handling this divorce or me being sick well and has been showing out more than normal(he has adhd and i believe he is bipolar or high functioning autism) His tantrums at the age of 12 are horrific and he can be so hateful.

I feel like i cannot get a grip in my life. Many times i feel alone and wish i just had my family back even if it is dysfunctional. My oldest hasnt spoken to me in a year and still hasnt spoken to me since the diagnosis. I try to keep focus on the children that are here and especially my onky daughter thay is just 10 years old.

How do you tell what stage after youve been told still a stage 1. ????

Ive had reccurence x 3 and cancr x 4 no nodes until Feb 2016. Pet left axilla. 3 nodes Pectoral region. 2 nodes?

Skin mets after TCH. Locally. Sept. 2015.

Anyways fasoldex and ibrance.

What's crazy about the different terminology used for metastatic recurrences (and Stephanie is correct, although "Stage IV" is commonly used, even by oncologists and here) is that it seems to have prevented us from getting a true handle on how many women are actually living with mbc. In other words, those dx'd out of the gate as Stage IV are counted, but as far as I know and often hear lamented, there is no reporting nor accurate stats when it comes to patients who recur as metastatic. This is so wrong, because it only aids in the lack of seriousness about our numbers and the need for research.

Sorry if this is off tangent, but felt it needed to be mentioned. I wish someone would take on the task of figuring out how many truly are living with mbc, in the hopes that we can continue to shed light on the need for mbc research over pink awareness.

Thank you all for the response. I remember the 2009 post of mine . 4% chance reccurence cute little 0.8 cm no nodes.

I bet no one took it as a pissed off ds. That wont stop.

MileHighMetavivor-

Welcome to BCO! We're sorry you find yourself here, especially so long after your initial diagnosis, but we're glad you've joined us, and hope you find this community to be a source of support!

The Mods

Please add me to the list as well. I am new to this site but not new to this disease. I was diagnosed in Feb. 2014 with Stage 4 MBC after being in "remission" for almost 5 years. I have been fighting ever since. I have 2 Clinical Trials, 2 Gamma Knifes and 1 Hormone Therapy treatment under my belt. This week I get my third Gamma Knife and start another Chemo.

So happy I found this site!

Hello to everyone!

I was diagnosed Stage IV 2 years ago July. I was diagnosed Stage I in 1/2007. I've posted a few times in other areas, but never here. I have mets to my bones and liver. My liver is progressing and I've done 7 different types of chemos. None are working so next steps are Clinical Trials, if any are available at Northwestern Memorial Hospital.

My question: do any of you get extremely tired and need to sleep a lot? I am in between Docs so I'm feeling very nervous right now and would love to hear any suggestions! I certainly pray, read what's latest in news and read discussion boards as much as I can. But the side effects from this disease is making me go crazy!

Bev

1. hi wendy3 I have metastasis to bone and liver. Liver is progressing . Currently on clinical trial pill alisertib and taxol. Where is a reliable source to get cbd oil. Have you ever heard of anyone using turkey tail mushroom for immune support? I have had to halt treatment 3 times due to dangerously low wbc. Can I be eliminated from a clinical trial if they find out I am doing naturopathic treatments too ? Any help is greatly appreciated.

Dnmnly - can you update your diagnosis and treatment information. it gives everyone context to respond.

you can be eliminated from a clinical trial for pursuing complementary treatments. it's best to be be up front and see what they allow. some things they care about some things they do not. i would not give up my complementary therapy for a clinical trial at this time, but there a situations where i would.

the liver mets thread has members who had done the gamma knife thing. getting rid of metastatic tumors doesn't get rid of cancer, except maybe in a specific cases. it can get rid of symptoms if you are having them. it's worth talking through what you expect to accomplish and what you can accomplish with gamma knife surgery.

Hi to all our wonderful members!

Just a gentle reminder that this forum is for our Stage IV members only so we do ask that you respect the reserved nature of this forum.

If you have not been diagnosed but have questions about Stage IV Breast Cancer, you can certainly post in the following threads:

If you are not Stage IV but have questions you may post here'

Not diagnosed with a Recurrence or Metastases but concerned

If you are a caregiver or family member with a stage IV diagnosis, there is also a forum entitled: For family and Caregiver's with Stage IV.

Hugs to all,

The Mods.

Z, this has always been that -- a list and just a list of those of us living w/mets. Q & A's (as mods said) need to be directed elsewhere so that we don't lose the integrity of this list.

Hi All - I don't think this "list" is being actively maintained. I thought it was only for a particular time frame as described in the seminal post by DivineMrsM:

"This isn't meant to be an "ongoing" list. It is merely a genereal idea of how many women were both members of breastcancer.org AND stage iv at the time I originally posted this question. Please do not be upset if you don't fall into those parameters. After all, this isn't a list anyone really wants to be on. I'll continue to add names of any women who were members of breastcancer.org and who've received a stage iv diagnosis up to and including April of 2013. Just let me know if you'd like to be included."

At any rate I think it would be a good list to update and maintain. What do others think?

Z, that's probably a good idea, if it hasn't been done already. But I'll leave it to Divine to weigh in. In the past, this thread wasn't so much an actual count, but more just a place to check in, especially since many of us have known each other or recognize a screen i.d. and avatar from early stage forums -- a central place to simply post that you've joined the mbc ranks, whether due to a re- or de novo dx.

Divine, are you still keeping a list???

There must be a better way to do the count in a semi-automatic way. I only post in two other forums of interest for my wife's condition and for sure there are many who do the same.