Sisterhood of the Secret Handshake

Rachel_BC

kookiesmom- sounds like fun!  If you feel the pins then they are doing soemthing wrong in acupuncture. Generally the appointment goes like this... first there's a long consultation where the acupuncturist asks you questions about stuff you think has nothing to do with why you are there, but you go along, figuring the Chinese have been doing this for a couple thousand years and might just have another way of doing things, so what the heck. You lie down in your undies and the acupuncturist starts doing their thing, I can't watch, so I think about other stuff.  If I pin hurts, you say OW and the acupuncturist adjusts the pin so it doesn't hurt.  Now nothing hurts but you know if you turn over that's going to be a problem, and you are getting sleepy and you're just about to think of something to say when... you wake up.  You had no idea you were going to go to sleep but you did, and it was a special nice refreshing sleep.  And the acupuncturist takes the pins out and gives you a nice but strange back massage.

As you go about your days after that you usually feel so much better than you did before you went.

Sometimes they give you some weird tea to drink.  

Now this is the Chinese type acupuncture, not the hippy-dippy crystals type acupuncture.

 

lbrewer

rachel, i tried going with the effexor for one day and was miserable.  it really does help,  fresh ground falx seed ( grind your own) is supposed to as well

lbrewer

leah,

 who knows??

cold hands is just an interesting statistical connection.  My body made SO much less estrogen than most and I still end up with BC.  I was even tested becasue I didn't havwe periods till after my first daughter was born!  HAd to use fertility drugs.  THen had 2 more, nursed and nursed them. 

Personally I think a lot of it is environmental and the way our genes react to the onslaught of stuff our bodies are subjected to.

inspiewriter

Have to chime in as one of those women not interested in chocolate! LOL

Give me a creme brulee or vanilla custard anytime!

Also saw someone post about flax--- be cautious using raw flax since it may have that estrogenic affect (I avoid both flax and soy for that reason.) 

inspiewriter

My hubby has gotten acupuncture!  It did help his lower back.

I am afraid to try it due to lymphedema.

lbrewer

rachel,

found this;

Cold hands and feet, often caused by low thyroid function, may be a symptom of estrogen excess or low progesterone influencing thyroid function.

WHO KNOWS!!

smithlme

I have a cold left hand and left foot, which started during chemo. I also have neuropathy in my left arm and hand, so my left side seems to be quite compromised. Taxol's to blame for my neuropathy and the LE is another of the lovely SE's from node removal. Once my hand gets cold it starts to hurt until I put it in warm water to warm it up. Winter weather makes it worse...

Linda

Rachel_BC

I thought people were taking flaxseed for constipation????  What's the flaxseed for?

People who are weird: lbrewer, no periods until after her first kid (!) and inspie who doesn't like chocolate (!!!!) Little Red's son is off the hook because he's a teenager, and I am claiming that he's just rebelling...

Yeah, I can't keep up with everyone either- but its fun trying!

Mixed bag... anyone read about WendyV?  She was another BC org Stage IV gal who passed this week, and I was reading over her last posts.  So amazing.  So well written.  She was giving advice about how to explain to toddlers about losing hair to chemo, and talking about how she made it fun for her 3 year old, using Fuzzy Wuzzy was a bear.  By the time her kid was 5 he was helping her shave her head for the next round. She was Stage IV at DX and by my calculations she was late 30s at DX.  She was 10,000 times cooler than I would ever be.  I hate this fucking disease more than I can express. I am carrying her around with me like I am carrying Heidi Ho, and each time reasserting my efforts to fight this shit, and paying more and more attention to my son, being grateful that I can. 

And I wasn't going to say anything about that because- well you all know.  But I just got an email from a gal I met during RADs.  31 years old, Stage III, works in health care/social work, daughter and son in elementary school.  She went after SFBC like hell on wheels.  Tiny girl, HUGE sense of humor, hard to believe she had double MX 'cause she had no boobs to start with.  She got into a clinical trial at NYU, they threw so much TX at her all at once it was unbelievable. She was doing chemo at the same time as i was  going through RADs with her.  Then she had the double MX, and then more chemo.  We were doing RADs in May, she had her last chemo about a month ago, then had her PET/CT scan about 2 weeks ago.  Here's her email:

Met with the Oncologist yesterday.  It's official: No Evidence of Disease. B"H As per the oncologist- I'm all clear.

 

I'm still tired and recovering from Chemo and Radiation and have been told it can take up to a year.

 5 years of Meds to come + other things (tests, appts, procedures) but NED is good.

Then, because she's so efficient and selfless, she told us all to remove her name from our prayer list. 

Rachel_BC

lbrewer- I just have to get a hold of whoever is in charge and tell them they made a mistake giving me SFBC.  :P   And you too.  And everyone here!!!!!  Thanks for the update

lisa-e

This is a busy thread!!   Anyway, this is just a fly by as I am at work.  I dropped my laptop and broke the hinge.  It is unusable for now - my computer time has been severely limited.    I am taking it to the repair store tomorrow.; hopefully, it won't cost too much.

I will see you all - No Cal women - on Suday!   I am so looking forward to it.

inspiewriter

So what is everyone doing this weekend??

hrf

Some of us from the Toronto area are meeting up for dinner this evening. Everyone is welcome, even if you don't live in the Toronto area.

inspiewriter

That sound fun!  I will be thinking of you down here in Baltimore : )

lbrewer

Yea my body is wierd but I must admit the no periods was kinda nice!  Studies at MD Anderson have shown that flax inhibits tumor cell growth and they are using it in prostrate cancer treatment.  There are also on going studies of it as a replacement for Aromatase or in conjuction with aromatase as it appears to work in much the same way.  Its also being tested in pre surgical BC patients as it appears to shrink the tumors prior to surgery.

The only think ANYBODY konws for sure is NOBODY knows everything for sure!

Rachel_BC

Well I am throwing broccoli sprouts on everything...

http://clinicaltrials.gov/ct2/show/NCT00982319

(gak, I am allergic to mangos) 

it reminds me of after 9/11, I was thinking of leaving the city (surprise- NOT).  I thought: am I more stupid to stay here where its obviously a target, or would I be more stupid to leave town and maybe get caught in a bomb of the bridge or tunnel I took, or wherever I go if that becomes a second target... I decided I would feel more stupid if I left town and still got killed (natch, I'd be dead so I wouldn't been feeling anything but you get my point, OK if I survived an attack).  At least I get to live in my home until they come get me.  But I have my emergency gear and survival guides. 

So that's pretty much how I am handling SFBC too. 

lbrewer

Rachel, Please don't post mine.  Where I work it could get embarassing.  Everything we post here you can access thru Google.

No place is completely safe.  Did you see the newds about the shooting in Orlando.  10 minutes from the office.  Took the victims to the MD Anderson complex where I was yesterday! 

Thanks

j414

Rachel, last year Dr. Visvanathan (she is running the study in your link) demonstrated that sulforaphane (the chemoprotective chemical in broc sprouts) was found in breast tissue after a single oral dose of a broc sprout preparation. This and all the Hopkins stuff sold me.  So, every night I throw 1 ounce of brocco sprouts (the hopkins grown sprouts) into my vitamix with some organic lemon juice and a little bit of water and I mix it into a smoothie type consistency - and then I just gulp it. It's not tasty, but it's another weapon in the arsenal.

http://www.bcrfcure.org/action_0708grantees_visvanathan.html

Rachel_BC

lbrewer- no worries, never hurts to remind me but you said I can't post it, and  you warned me even when we took the pic that I can't post it so I won't!!! I didn't even put it on a link, its on my hard drive and I sent it to you and no where else! I am very big on privacy!!!!  but here's a question, could I post it if I put a big smiley face over your face or something?

One time on a car group meet I took a pic of our friends and one smartass guy flipped me the bird.  That's typical him.  So he worked for Enron.  So Enron you know went bye bye and he was looking for a job.  He asked me to edit the pic and I managed to photoshop his gesture to look like he was just waving hello sweetly...

j414- I forgot where I read that broccoli sprout thing, maybe I got it from you?  I remember chasing it down and it was originally from Johns Hopkins in 1997 and they are just getting around to the study now.  I think it also required massive doses, and that and other reasons are why they are doing the clinical trial.  You are a much better patient than I am, doing the vitamix thing!  And does it make a difference where you get the sprouts?  Where do you buy the JH ones?  I just saw broccoli sprouts in Whole Foods and figured what the heck... They are easy to throw in all kinds of stuff, I made an omelette today that was gorgeous... mushrooms and cheese and scallions, then some very thin wheat toast with a touch of lite buttermilk dressing and some big blobs of broccoli sprouts.  Fab fab fab sandwich.

HelenaJ

Not a chocolate fan as well - give me salt and more salt mmmmm.

Just popping in to say have a great time you NoCal girls, would love to be there, thinking of you and just plain pissed off you are all so far away.    Hopefully will get to see some snaps - will check in next week.  Hugs to all.

smithlme

Are NoCal girls NorCal girls? I live in northern California and I'm not familiar with the term NoCal. I know what SoCal is...

Linda

lbrewer

Rache,

Sure turn me into a happy face!  I read the broccoli thing too.  And Sylvestor Cancer Clinic has a white button mushroom study going on.  Simething about a mushroom a day keeps BC away!

kfinnigan

feeling sad...just read WendyV's posts....SFBC!!!!!!!!!!!!!!!!!  

Rach-I want your acupuncturist!!  totally different experience had by me.  

kookiesmom-I was referred to Acupuncture thru my pcp because of the low back pain I've been experiencing since rads & Tamox started in Feb.  Did 6 mos of PT and have had 5 acupuncture sessions.  Only 1 visit helped and that's after she left the needles in for twice as long.  The table is so uncomfortable that its hard to relax at all, so I'm not sure what benefit I'll really get out of this but its worth trying and I'm very optimistic!!  I was a bit freaked out on how it will feel, but it feels like if you take your fingernail and tap your skin with it...

My vit. D level results just came back...last 2 times tested it was 41 and now after upping my vit d3 by 1,000 mg it went down to 40.  Guess I'm not absorbing the pills.  Also took the CYP2D6 via a blood test and will find out those results and go over them with my onc next week.

The shootings in Texas & Florida just break my heart in many places... 

lisa-e

Linda, yep NoCal = northern California.  How long does it take to drive to the Napa Valley from Fort Bragg?  If not too long, you should come on sunday.

kfinnigan

My Dad just emailed me this....very nice  (remembering our troops at Thanksgiving)

http://www.cpmsglife2.org/MSG/Pres/td/td1.html 

Ainm

Hi gang, just checking in to say I hope you all have a really good weekend.

ktym

Kari, a little warning before we open things that will make you cry please

kfinnigan

awwwwwwwwww...I know!!!!!!!!!!!!!!! sorry girls

smithlme

lisa-e,

Thanks for the invite but I'm about 4+ hours up north and my daughter borrowed my car for the weekend. One of her friends committed suicide this week so she's in the Bay Area dealing with some very emotional issues and friends. Too sad...

I love Napa Valley and haven't been there for years. Next time you all get together let me know and I'll drive down...

Linda

smithlme

Kari,

The words Tissue Alert should be attached! My son is a Marine and spent two Christmas' in Iraq. He's now in a Wounded Warrior unit and will be medically discharged some time after the first of the year.

To all of you with military ties, I send a huge hug...

Linda

carollynn79

Weekend plans, staying in my comfies, wrapping up in a blanket and try to fight off the blankity blank upper respiratory infection.  Went on antibiotocs yesterday have an awful cough and feel miserable, I don't even wan to cook anything, my hubby knows I am sick!!  On top of that we have people at work who have been confirmed with the seasonal flu so my Doc is hoping I don't get it but has told me to call if any changes or I do not improve in a day or so.  I did get a book at the library Fatally Flaky by Diane Mott Davision it is a mystery but an easy fun read.  Hope you all have better plans than I do!!

I definitly am a Chocolate lover!!!  I am going on a cruise to the western caribean with my 2 sisters Mom, one sister in law and niece in February it has been fun to plan and we have not been together for a whole week years so it will be fun.