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Calling all Stage IV Metastatic BC Survivors
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jbocean40 posted:
I was recently diagnosed with Stage IV metastatic BC. Original diagnosis was in May 2007. I was triple positive then. The latest biopsy shows ER+, HER2+, PR-

I have bone mets confirmed. In Mar, I started getting short of breath. My oncologist missed this classic sign of lung mets - at a minimum she should have looked for clots. 2 weeks later I was in the ICU fighting for my life, recovering from what I was told was a simple procedure called a Video Assisted Thoracotomy with Talc Pleurodesis. I spent 26 days in the month of Apr in the hospita, 14 in the ICU.

I am looking for anyone on this site that is stage IV with bone and or soft tissue mets. I want to hear your story. What treatments have you received? What has been your experience with the medical establishment? What side effects and how do you manage those? Particularly neuropathy and pain? What about working? What types of support have helped you cope?

Thank you! This seems to be such a great resource and community of survivors.
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rachael67 responded:
Welcome to the F2F Exchange...Tho' I am very sorry you have the need!

I am not able to give you any of the information you are seeking, but do hope others will come along who will do so.

I want, however, to acquaint you with two "sister" off-shoots to this exchange where you might find more information. One is the main locations for those of us dealing with breast cancer...including those dealing with mets. It is the Breast Cancer Exchange. It is usually pretty active and, hopefully, you will get several responses rather soon.

The other, tho' generally less active and more new, deals with alternative and natural approaches to the disease. Breast Cancer Treatments -- The non-toxic way It was founded by Melissa (Lizzardlee) who is quite knowedgeable in the area. I know she will have information for you. (This site is quite special as it offers us yet one more option in our arsenal...One that sometimes is not so available.)

Weight all places and all suggestions, and hopefully your choices will be a little easier to make.

Here we offer our experiences, knowledge and a great deal of support and comforting. Welcome to all three places!

Blessings and good responses.
Rachael
 
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jaydbraz replied to rachael67's response:
Rachael, where have they hid the Breast Cancer Exchange?? I can't find it.
 
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rachael67 replied to jaydbraz's response:
We tried our best to confuse you, and I am happy to see we have done so!!

Okay...Look at the top of this page...See just above "Breast Cancer Friend To Friend - Pinkie Central" are the words: WebMD> Exchanges> Breast Cancer ETC.....

Well, click on the "Exchanges"...That will take you to the whole list of Exchanges...There you will click on the "Exchanges A-Z" which will open with all the alphabet to choose from. Select "B"....(Okay...That was obvious but I know how you hate to ask for directions!!! ) Scroll down to Breast Cancer and you will see many exchanges...Most member created! Among those you will see the one you are on now which Bonnie created as well as an alternative one which Melissa created. Anyway, there you will find "WebMD Breast Cancer Exchange"....That is the main Exchange! All the others are sort of off-shoots.

I find myself checking into all three of these exchanges just to see what is happening, and where some of our members might be located. Keeps me busy but definitely out of too much trouble!

See you on one or 'tuther, Friend!

Blessings.
Rachael
 
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jaydbraz replied to rachael67's response:
To me this is a horrible way to run a discussion board. Not surprising that many members have disappeared. TOOOO many choices. Thanks Rachael.
 
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jbocean40 replied to jaydbraz's response:
Agreed, even with the instructions, I had a hard time finding the exchanges. They aren't really ordered by topic, so it's difficult to know where to post.
 
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jaydbraz replied to jbocean40's response:
Thank you jbocean40, I think that's the reason posting have dropped dramatically. Have a good day.
 
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rachael67 replied to jbocean40's response:
"JB" and "JD" (How cool is that salutation!!!???)

I asked Caprice about the navigation challenges and she sent some good ideas...I will post them here. Give them a try and let me know if this eases things for you two at all. Okay???

There are a few other ways to find the Breast Cancer Exchange (including just typing in 'breast cancer' in the search field available on the exchange home page which is my favorite and fastest way, looking at the Experts tab where less exchanges are listed, etc.). And take a look at the other tabs, what shows there. Even the A-Z list, that's pretty straightforward.

And from the home page there's a very easy to find link to the Breast Cancer Health Center and the Breast Cancer Exchange is linked from in there.

P.S. Another thing I would suggest to you and every member is to join an exchange/bookmark it via the WebMD bookmark on the upper right of an exchange once they're signed in.

Then it will be listed under My Exchanges on the left sidebar for easy access. AND will be listed in the My Watchlist tab on the Exchange home page.

I do hope these ideas help. I know when I clicked on the "join this exchange" at the top right, it made it so easy to jump from one BC exchange (or any othter exchanges) to another. They will line up on the left side of your page and you merely have to click onto which you wish to visit.

Please let me know how you are doing with these ideas.

Rachael
 
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jaydbraz replied to rachael67's response:
It may be easy for some, but from this information I had 858 choices, I wont live long enough to follow this route. Thanks Rachael, but life has become too complicated even for a 38 year old experienced IBMer.
 
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rachael67 replied to jaydbraz's response:
Sounds like my offerings are only serving to confuse you, my Friend! Let's just say I am sooo glad you have found us in at least one place...You know where we are, and I hope you retrun often. You are missed when you are not a frequent visitor!

Blesings.
Rachael
 
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jaydbraz replied to rachael67's response:
Thanks Rachael, I am surprised at the no responses to our friend.
I even opened 2 tabs so I could view your instructions and flip back and forth and navigate, but I saw nothing that you referred to. I shall post on this one site and be content I suppose.

Thanks for your help. The services for Denise is Monday 5/17.
 
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rachael67 replied to jaydbraz's response:
I posted about Denise on the main exchange and you posted on here. I responded to your post and Caprice responded to mine. No sure how often folks who knew her lurk.

I do know that Pinkie and all those who cared about her will be there on Monday! Also sent Simone a little note.

Blessings.
Rachael
 
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jaydbraz replied to rachael67's response:
Thanks Rachael, I saw Denise's obituary in the Warren, Ohio newspaper. They had a great picture of her. Have a great week.
 
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jbocean40 replied to jaydbraz's response:
Right. This is not working for me. I'm out. I've got no replies except how to acess the incomprehensible. Clearly I'm not alone. Thanks and good luck to all the BC warriors here.
 
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jaydbraz replied to jbocean40's response:
jbocean40, it seems they have made this site unnecessarily too complicated. It wasn't always this way. Take care, you're always welcome to this one site you did find. I check at least 2 times daily.


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