Sorry

[jones7676]

Hello, I'm sorry I haven't posted here, but I'm not quite sure how to be help accepter rather than the helper.

Things are not going well. While I've started on a new chemo which may or may not be working and supposed to add a second after my whole brain radiation - the biggest thing is my brain.

The one spot I had zapped before (about 3 months) is growing again. They won't do it in the U.P. because of the type of radiation I had before and they won't do it in Chicago because I had the wafers put into the tumor that was very close by.

I had a special brain scan yesterday...we will see what comes of it.

It isn't that I haven't wanted to post here. It is just that I didn't feel I could be of any help to anyone else. I finally made up my mind that I was going to post today and try and keep up agian. After all, I could be of help to someone else even if I just "listen".

Anyway, sorry about the delay, I just couldn't help myself.

[Faith in Him]

Barb,

You are helping just by posting. Your strength and determination to beat this is an inspiration to me and I am sure others. I hope that a new plan is made quickly to deal with the brain mets. Please let us know how you are doing.

Tonya

[Mary Jo]

Barb you are always an ecouragement. Even when you need encouragement. We're all here for each other through good and bad.

Sending love and prayers to you sweet sister.

Thanks for sending us your post. We missed you.

Mary Jo

[Hopeful]

Barb,

I am sorry you felt your participation could not be of help to anyone else. Nothing could be further from the truth. This disease distorts what "normal" is for all of us. Your "normal" is likely the "normal" for many others. Just showing up is more valuable than you will ever know.

Best of luck to you with whatever new treatment plan you embark on.

Hopeful

[DanaRT]

Dear Barb,

Listening is good and very welcome.

I am sorry to read you're not doing well on the new chemo. Hang in there. Many hugs and prayers heading north for you.

btw, my husband is heading to our cabin in the UP today.

Hugs,
Dana

[tricia keegan]

Hi Barb, I'm sorry to hear your news and really hope things improve soon for you:)

[nitewind]

Barb, everyone, everywhere needs someone to listen. We will be here and ready to lend an ear whenever you need it. I would like to say welcome back but not under these circumstances. Just that we're glad you know where you can come.
Hugs

[schoolteacher]

Barb,

I am glad just to hear from you. You have always been an inspiration to me. God Bless You.

Amelia

[Laurel]

Barb,

Never feel your fight isn't OUR fight! That is what this site is all about. I am happy to sympathize with your travails and rejoice in your triumphs whatever comes your way. For now I will pray you respond well to your current treatment and that fear and despair stay at bay.

[Ruth]

Barb - glad you are back...no apology we are just so happy to hear from you. We will pray that the new chemo will take care of it and helpfully keep some fear away. You are in my thoughts.
Hugs ~ Ruth

[Tom]

Any more talk like that Barb, and I'm going to have to come up
there and slap you silly...lol. I for one, have always learned something from hearing about anyone's experiences with this stinking rotten disease. Each story is a little piece of the puzzle for someone else. Keep relaying your latest problem, and we will all worry about it for you so you have more time to relax. I never felt this was a "take a penny, leave a penny" message board. Please don't ever hesitate to post. I think all would agree. And if they don't, I'll be handing out some more justice.

Sincerely,
Tom

[caya]

Barb,

Chime in when you feel like it, and just listen when you don't.

I hope things turn around for you ASAP.

all the best
caya

[lexigirl]

Sending you a big hug. I am hopeful that your scan will show shrinkage. Stinkin' cancer.

Hugs,
Lexi

[ElaineM]

Feel free to share your concerns whenever you need to do that. This is the place where everyone understands the ups and downs of breast cancer. Take care and keep going no matter what happens.

[Believe51]

Hey Love, I relate to this entire post, especially that you feel you have nothing to offer....but, even listening is enough. There are things that can help you. Please give me your phone number, life is busy and this will be best for me. I emptied my mailbox so pm me. Do not give up hope. Calling you will also allow me to open different windows as you take notes rather than me go back and forth and recheck, etc. PM me now and I will get back to you ASAP....Hospice has been involved here. I am so sad and tired...HoHum......talk in person soon.>>Believe51

[Joan M]

Barb,

Glad to hear from you, but sorry about the persistent brain met. Let us know about the special scan and what your onc is recommending.

Joan

[sassy]

Barb,

So many people told me that the best thing to do for your friends during this journey, is to let them help however they can. It makes them feel better.

So if we friends can be of help---by listening, responding, caring and supporting----its the best thing you can do for us. So the helper continues to help.

Thanks for letting us help you, for sharing your thoughts, fears, life with us.

We are here for you.

Praying that new treatment will be the answer.

[michka]

Barb, you are right to reach out for support. You are part of our very special members so don't feel "sorry" as if you were bothering us. I am thinking of you. Please post when you have the results of the brain scan.
Hugs. Michka.

[Sheila]

Barb
We are here for YOU to listen, give suggestions, prayers or a big hug...you have given so much to others on this board, never feel guilty about coming here...just posting is bringing something to the table....you are going through a rough time right now...we are here to be your support, your guidance, your love.....hoping that you get a plan that will turn things around and begin to feel better.

[juanita]

just sending some extra prayers!!!

[Jackie07]

Barb,

We are all sisters (and brothers). And we are just chit-chatting here with each other every day. I often do this while reclining in the couch (which is not a recliner and probably explains why I got neck strains often.)

And we talk about everything under the Sun: good, bad, inspiring, depressing...(or in another classification scheme: rated G, PG, R (such as Bill's postings sometimes,... :)

This is our 'home', and we'd like to see everyone every day - or at least once in a while. I think I joined the group back in 2004 and did not feel like I needed to stay (thinking that I was 'cured' - as the doctors had told me - my oncologist kept wondering why I wouldn't believe him this time :)

Then I came back after my recurrence in 2007 and draw strength from everyone here on the board.

"Good time, bad time, griping about our hubbies, celebrating our milestones...", these are the reasons why we are here - to support each other.

Remember all your 'sisters' when you are down, because we all care about you as you have cared about all of us.

Sending prayers from Central Texas...

[vickie h]

Barb,
I've been thinking of you so much. I, too, am not doing well, so haven't posted either. I am used to being the nurturer and not the one in need. I understand what you are going through as I feel the same way.
Thank you for letting us know how you are. I will pray for you, my dear friend even more now. I am so sorry to hear you are not doing well.
Please know you are well loved. This cancer just sucks! Please let me know how you are. (I will need to post soon with my own sad news...just hard to do)
Much love to you always,
Vickie

[DanaRT]

Vickie,

I hope things begin to look up for you. Your message to Barb is lovely and heartfelt. Many prayers to you and Barb.

Love,
Dana

[Lani]

have you had any of your brain mets biopsied?

If so, they could look for something called a sodium/iodine symporter on the cell surfaces. If it is there (and it is in the vast majority(80%) of her2+ brain mets) it may be possible to give a simple treatment, already FDA approved for
those with hyperthyroidism and thyroid cancer. Dr. Irene Wapnir at Stanford has approval to do this if the tumor is symporter positive and the patient hasn't had too much radiation to the area already.

Seems like you might want to inquire about it, as later you may have had too much radiation to qualify.

Hope this help!

I don't know when they might be trying using radioactive iodine (already FDA approved for thyroid cancer and widely used), but will try to find out if there are trials and if you have to have had a brain biopsy showing NaI symporter
present on the mets.

: J Neurooncol. 2009 Jul 19. [Epub ahead of print]

Breast cancer brain metastases express the sodium iodide symporter.

Renier C, Vogel H, Offor O, Yao C, Wapnir I.
Department of Surgery, Stanford University School of Medicine, 300 Pasteur Drive H 3625, Stanford, 94305-5655, CA, USA.
Breast cancer brain metastases are on the rise and their treatment is hampered by the limited entry and efficacy of anticancer drugs in this sanctuary. The sodium iodide symporter, NIS, actively transports iodide across the plasma membrane and is exploited clinically to deliver radioactive iodide into cells. As in thyroid cancers, NIS is expressed in many breast cancers including primary and metastatic tumors. In this study NIS expression was analyzed for the first time in 28 cases of breast cancer brain metastases using a polyclonal anti-NIS antibody directed against the terminal C-peptide of human NIS gene and immunohistochemical methods. Twenty-five tumors (84%) in this retrospective series were estrogen/progesterone receptor-negative and 15 (53.6%) were HER2+. Overall 21 (75%) cases and 80% of HER2 positive metastases were NIS positive. While the predominant pattern of NIS immunoreactivity is intracellular, plasma membrane immunopositivity was detected at least focally in 23.8% of NIS-positive samples. Altogether, these findings indicate that NIS expression is prevalent in breast cancer brain metastases and could have a therapeutic role via the delivery of radioactive iodide and selective ablation of tumor cells.
PMID: 19618116

Let me know(by psting on the board) if you need/want her contact info.
I

[Diane H]

Dear Barb - am sorry to hear that treatment is not going the right way right now. Am sending out those prayers and hopes that another direction in treatment will turn things around. Wish I could give you a hug in person, am sending out a cyber hug honey, and we're all here to listen to you anytime you need it.
Hugs,
Diane

[GemmaG]

Barb,
we are family here. i can't help thinking on how can i manage alone without my family here at Her2.
you are always in my thoughts and prayers.

Love,
Gemma

[jones7676]

Thanks so much to everybody! As soon as I hear something, good or bad I will post again. I have every part of my "body crossed" hoping for the best!

[WolverineFan]

Barb,
I was saddened to read your post, but echo everyone's response. Please don't ever feel like you can't vent, cry, scream...whatever you need, especially here. Your emotions are very real and all the people on this board are here to support you and help you put those boxing gloves back on when you don't feel like you can fight anymore. Please keep us posted on what the brain scan reveals. Until then, please know you remain in our prayers. Btw, I loved Tom's post!!

On another note, I grew up in Rogers City which is a small town just south of the Mackinac Bridge on Lake Huron. Hopefully, we will be going back home for Thanksgiving. I love, love, love, northern Michigan. It will always be home for me.

Please take care,

Hayley