New to the boards

[swanky]

<TABLE class=tborder id=post128098 cellSpacing=0 cellPadding=6 width="100%" align=center border=0><TBODY><TR vAlign=top><TD class=alt1 id=td_post_128098 style="BORDER-RIGHT: #cc0033 1px solid">Hello all! Let me introduce myself - I am 34 and was dx last September while pregnant. I did neadjuvant chemo, 4 AC DD and then had bi lat, one node positive. ER PR negative, slightly her2 neu positive. Finished up with 6 taxol and herceptin which ended 6/18. Now I have had a recurrance in the mast site, above expander and in a supraclavicle node. My onc is going to start me in a trial for BRCA 1 positive which just opened up at Cedars- sinai in los angeles, ca. It was originally for ovarian cancer and now they just opened up for bc patients. After the trial I will probably do more chemo (xeloda and tykerb) then rads.

My question is this: this rapid recurrence is bad, but are there stories out there with people who have gone on to the NED happy place? Are neck nodes common? I also post on ysc boards and have never heard of this. Am I just one step closer to mets? I guess these are rhetorical questions because nobody knows for sure, but man am I looking for the light at the end of the tunnel and happy side of things...any input would be appreciated! Much love to all of you ladies who are fighting this disease and helping all us newbies out.

I think I got my signature up. Thanks again.
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[R.B.]

Please excuse this post if you have "done" diet, but I would rather your ire than you not have the opportunity to add this to your knowledge.

If you brain is not too numb this thread gives a sense of the importance of diet.

http://her2support.org/vbulletin/showthread.php?t=24410&highlight=greek+diet

There is a lot of evidence that fat intake (type) plays a large part in the risk profile for breast cancer (and other conditions).

Women with high long chain omega threes in breast tissue had about a 70% lower risk than those with low DHA and EPA.

Babies demand DHA from the mother to make their brains etc. IF the mother has insufficient supplies they will even hoover it from the mothers brain. Womens brains can shrink in pregnancy. It gets a little worse with each pregnancy if Omega threes DHA etc is not replaced.

Balancing the omega threes and sixes is arguably a good target.

Fish oil is a good source of DHA and long chain omega threes. Watch cod liver as it is also high in A and D. A trial suggested women's uptake drops off at about 2 grams a day.

There are lots of posts on omega threes and sixes you can search by clicking on search above. (it took me a while to find it and hence the tip).

The mother omega threes can be found in flax oil or seed (oil or seed is another topic of debate)

Fats are powerful so please ensure you discuss supplementation with your medical advisor. Fish oil can cause blood thinning.

http://www.ncbi.nlm.nih.gov/

You can use this to search for DHA EPA etc with your treatment regime print out the result and take it along for consultations etc.

Please come back if you need more resources, or scream done that.

I so admire your courage.


RB

[lexigirl]

Welcome Swanky, although sorry that you are going through this. This is a terrific site to get great and updated information from knowledgable people. Many women who have had recurrence and are many years out doing fine! Hang in there sweetie!

Hugs,
Lexi

[SoCalGal]

I know, nothing to really laugh about, but I liked your comment about kids not minding bald, etc. Oy, you have a lot of kids in your house. (I have a 17 & 19 year old).

My advise, stay tough - listen to RB...I am seeing a doc at UCLA, if you can, try to get in to see Dr Kenneth Conklin. He's an MD who specializes in supplemental support for women in treatment for BR CA. He works out of their Integrative Oncology Dept.

Stay strong. You found one hell of a support site here. I've been posting for 3 months and have found this to be not just supportive, but there are many with brilliant research minds.

I don't have the answers to your questions but I was in hot water more than once and things turned around. I was determined to raise my kids and I did. I am now determined to get my youngest settled in college this fall and I will.

My "team" is at Cedars, too. I've been at this a LONG time, so if I can help you in any way let me know. Blessings...Flori

[BonnieR]

Swanky, I am also new here and the warm welcome everyone offered was amazing. You might not find all the answers but you will find people who will share their experience strength and hope with you.
Keep the faith...Bonnie

[R.B.]

Swanky - I am sorry I should have said hello. I am afraid I was kind of overwhelmed and did not know what to say. Your post still brings a silent tear this morning for your your children family and life's injustices.


Thank you for your kind comment Flori.


RB

[Sheila]

Welcome Swanky....believe it or not this is THE SWANKY place to be for women or men with breast cancer...especially if you are in the Her2 club. Sorry you had to become a member, but you will find a wealth of information from first hand experience here. I began having a problem with a recurrence in my neck nodes during my reconstruction 1 year after my diagnosis. A biopsy confirmed it was the breast cancer, her2+ back again...(I started as Stage 1, neg nodes). Well I began Herceptin then, and that was 4 years ago...since then, I have had a few more recurrences to the same spot. I was on Xeloda Herceptin for a year, and just switched to Taxol, Avastin, Herceptin, which is also kicking butt on the nodes. Something about the neck nodes...they can be a pain in the butt. They just seem to have a mind of their own, and keep coming back. Lolly on this site also has had problems with them for years. I loved your comment, kids like bald but no stuble....please let us know what the plan of attack will be for your nodes....they may even try radiation.

[suzan w]

Welcome, Swanky!!! You have come to the right place! I do not have answers to your questions, but I can tell you that I come here first to ask my questions...and then call my oncologist!!!

[Joy]

again sorry that you have to be here, but this is THE place. I also just want to babysit my grandbabies someday!!! I hope Lolly posts to you as she has experience with dumb nodes. But you can search her posts or search nodes and NED and I think you will find some encouragement. Sheila is another gal who comes to mind-these are AMAZING women-so look for them.

Keep us posted!

[hutchibk]

Hi Swanky - welcome to the Jr Oncologists League!! LOL. All of us here could probably pass some kind of medical exam thanks to all we have learned on this board, and due to how it has inspired us to learn more and contribute... Stay tuned, someone here will always have an idea for you to pursue! Best of luck.

[Mary Jo]

Welcome Swanky,

It's so nice to have you as part of our board. I'm sorry you were diagnosed with breast cancer but I'm happy you found this board. You will find many of the women and men of this board very, very knowledgeable in her2 breast cancer, diet and other things. I feel blessed to be a part of this board. I've been strengthened and encouraged more times than I can count (I've learned a thing or two as well http://her2support.org/vbulletin/images/icons/icon7.gif).

Soooooooooooooo................welcome and a cyber hug I extend to you.

May God's Peace surround you today,

Mary Jo

[Believe51]

Welcome to the best place you can be for support, it is not the site for just negative imput as one may normally want to think. It is my husband who has stage IV Breast Cancer not me, but I have found the greatest support system here. Not only do we get educated, but we get silly too. Sorry you have to be here, sorry we all have to, but thank God we can come to a place that provides information, links, inspiration, life lessons, family stories, laughter and tears.

I consider these wonderful Angel Warriors our extended family and could never be the educated seasoned caregiver that I am today without their support.

Ask anything or mention anything to us all here, nothing you can say will shock us. We talk about anything and everything and shall care for you unconditionally. If you speak about something and the post falls behind others someone here will either respond with an answer or write something of support so the post stays alive.

I am wishing you and your family the best of luck on this journey. Keep the faith and sweetheart............never stop BELIEVING!!!! We are all here wishing and praying for the same things.

Waiting For A Miracle....and expecting one soon>>Believe51

[Grace]

Swanky--just want to add my welcome. There are some very knowledgeable women on the board and they've kept me from going into a panic on a number of occasions and lots of others on the board as well. It's like having your own college of physicians.

Good time now to say thank you to all who have pulled me through dizziness, urinary track infections, nausea, cough, and much more, and all with great advice on what to eat after cancer.

So thanks all and, again, welcome!

[Patb]

Swanky
You are at the right place. This is the best support group and the
smartest, bravest people you will ever talk to. It is a life saver when
you have questions or just can't sleep. Take care.
patb

[Jean]

you have found a wonderful home here!
I am with you on those Grandchildren!

Please keep us updated on your treatment and I send you
all good wishes and prayers.

Jean

[carykim]

Hi Swanky--

It's like running into you at Target to see you on a different board. Hope you get the answers you are looking for.

xo
cary

[nitewind]

Hi Swankey, Just wanted to post my welcome to you. As everyone else says, this is the place to be. I believe I get more info from this board and these wonderful people than I get anywhere else. Whenever you have a question or just need to vent, just come here. You are not alone.
Hugs

[swanky]

Ladies - thanks for the warm welcome. The trial I am about to start officially begins tomorrow, so I will pick up my pills on Monday. My Onc seems pretty excited about it, so I have my fingers crossed.

Another question - I see some woman have been staged at IV because of mets to the neck nodes??? My onc calls this a local recurrence and not stage IV. However, I guess this is semantics and some say tomato, while others say tomahhhhto. LOL

Anyways...I plan on kicking the you-know-what out of this beast. Lots of things in the arsenal to try.

Cary - LOL!!! Yes, very much like Target!

Flori - You go to cedars too? My onc is Sarna, and Silberman did my bi lat - I am going to alsk him for a refund when I see him again! :-)

Well thanks again for the welcome and how do you get the pic to the side?

Leea

[Bev]

Hi there, not sure about mets or not. I would think the node activity has kicked your stage up a notch to 2B or 3 something. I know there is a discussion on this board, so find the purple tool bar at top of page and click search and enter staging.

RE photo, you could again go to search and enter photo. I know is it has been discussed and you enter thru the CP user tool. If you get impatient you can email Joe the webmaster.

I'm hoping you have great results with your new treeatment. Bev

[SoCalGal]

Just for the record - Dr Silberman saved my life. I think he is one of the most gifted and intuitive surgeons around. He was given a chair last year and is working on cancer research. For me, I feel safe with him because he is thorough and an uber control freak so I can breathe out when he's around, in charge. Also, David Kulber is my plastic fantastic another great surgeon...I had a 2nd opinion w/Sarna. He has an excellent reputation. My onc is Van Scoy Mosher. I've been at Cedars for 11 years, wish they would have cured me by now, but they've kept me alive...Really, we are all very lucky to have access to great medical care. Take good care!
Flori

[swanky]

Flori - that is too funny! My PS is Kulber as well. And I agree about Silberman, I checked around before my bilat because he doen not contact with insurance cos - after hearing of his reputation from other surgeons I decided to just go with him. I love his manner and support staff too.

11 yrs - wow! Did you do surgeries for the local recurrences? What is the normal protocol?

[Stephanie B.]

Swanky,

I am so glad you joined this board. I am also from Bakersfield and as a matter of fact our husbands work together. I also work for some of your family members - The Holberts. When I read your post I recognized your story and had Faye look at your picture and she confirmed it was you. If you ever want to talk you can email me at sbrantley@atginternet.com or call me at the store.

Good luck with your new treatment.

Stephanie

[Shell]

hi, swanky-

your supraclavicular nodes only puts you at stage IIIC, not 4. Welcome here, there is a wealth of knowledge, and your trial sounds interesting. Keep us posted - will you be having a treatment?

Regards,

[jojo]

Hi Swanky,

I was originally diagnosed 3b in 2003 (3c in new rulings since '04 or '05 or '06??) I didn't get to ask, if I just turned to stage 4 at that time; I just didn't think of it. Me duh!!

Then I recurred to a supra node. I had it a good long while. Abraxane finally wiped it out. I didn't get to ask, if I just turned to stage 4 at that time; I just didn't think of it. Me duh!!

Then a brain met was picked up by a routine brain MRI. THAT, I knew, would indicate that I advanced to stage 4.

So far, my brain is clear....

Hang in there!!

[Kathy S in Tokyo]

Hi Swanky,

I have 4 kids too, 14, 12, 10 and 8. My DX info is in my signature, and the speedy recurrence to my lymph nodes is similar to yours. At the time, my doctors agreed that I was stage IIIc but I got an upgrade halfway through chemo when they found some spots in my lungs. I wish the airlines were so quick to upgrade!

I was glad to be guided to this board by a friend in a yahoo group and find support here.

I think I managed to get my picture on the side by adding it as an avatar.

I love the brandname of your new pills and think it is very appropriate.

Keep kicking major you know what!

Best,