Calling all TNs

hot flashes...oh boy..hate em...my MO suggested taking the new product called Ice ( I think ) it is available at all the big chains and Walmart too. As long as chemo is done you can take almost anything from a health food store except hormones or synthetic hormones.  Just go in and ask a clerk if you have a good store nearby. 

Mags--off to pour me some red wine!

Luv - a pioneer woman!  Love it!  Good luck with your first dose tomorrow!

Luv, thank you - wouldn't be wonderful if this turns out to be TNBC's herceptin?! 

Bernie, that would be great!  I don't post much on the triple negative sites that are already on facebook for privacy reasons, but if it was composed of the ladies here, that would be great! 

Inmate, good to hear from you and "but not today" is a good tool.

Mumtobe, I have swelling on the inside of my elbow since dec while doing chemo. I had a port. I have had a ER dr,my reg dr,my sub mo,my mo look at it,they all felt it,went hmmmm. No one can tell me what caused it or what it is. I think it is getting bigger. When i go back to my mo in oct,i'm going to insist on some type of scan. I hope you find some answers.

Luv - I echo the sisters who thank you.  I'm so happy you were able to get on this study. 

Inmate - I'm going to make "but not today" my mantra.  Keeping you in my heart.

I saw my BS yesterday to arrange having my "surviving" breast removed prophylactically.  I'm going to go FLAT!  My breast form is so heavy and hot and uncomfortable and on and on.  Friends think I'm crazy, but I'm so ready to burn my bras!

Hoping each of you found some joy today.  Jan

Luv--UGOGIRL!!!! Thanks so much for doing the study for all of us!

Jan.......good for you.  you will absolutely love being flat.  flat chicks are hot!

Luv........thank you!

welcome Yodie!

Hope.....well FUCK!

ladies, I started my trial yesterday.  Love the doc and nurse and am very hopeful this is going to do its job.  she said hat thankfully my skin mets had not burst through the skin yet, gross!  Yeah, ya think?  i'm pretty happy they haven't yet either!i i get a drip of abraxane once a week for three weeks and 4 times  a week i administer a lotion to a target area of my mets  the trial drug is called imiqumid.ithas had great results in the first phase.  since i am a healthy cancer patient she is hopeful i will have limited side effects.  most of the side effects come from abraxane.  well, i'm already barely able to function from the fatigue.  so far it all just sucks! 

jan............we are all about the staycation.  i need to start getting stuff ready to sell in one epic garage sale.  i am a life long junk picker and want to get rid of my stuff so my husband doesn't have to deal with it when i'm gone.besides to him it is all just junk.......foolish, foolish, man it is all super cool amazing stuff worth lots of money. he won't be manning he price gun or the cash register.

enjoy your long weekend ladies!

love to you all.............................dawn 

belleast - had my last neo-adjuvent chemo yest and met with doc for usual checkup while in day ward. Showed him the swelling and he said "that's not a lump", I said "I know but it's slightly swollen" and he assured me that it's nothing serious and is a fibrous tissue rather than a lymph node/gland issue. In typical 'me' fashion, I woke today and it seems to be gone, I wonder sometimes does the mind and it's worries make things worse and once you just relax a bit these symptoms go aswell?  I will be meeting my onc & surgeon in coming week so will get their opinion on it aswell but for now I am not going to let it worry me, have enough worries to be dealing with

Annie - the drug is called ARQ 197 which is code name for tivantinib.  It has been tested extensively in other cancers (colon, lung) and Phase III trials are beginning for treating those cancers.  Mine is a Phase II trial.  It is called a c-Met inhibitor, a new class of chemo drugs.  You can read a bit more here, but it's quite technical.  It will give you a bit of an idea, though.

http://en.wikipedia.org/wiki/C-Met_inhibitors

Inmate - abraxane is like Taxol and Taxotere so you'll find lots of information on it, if you haven't already.  It can cause some neuropathy, so talk to your doctor about taking Vitamin B6, acetyl-L-carnitine and L Glutamine while on it.  My Dana Farber oncologist had no problem with my taking this while I did Taxol and I avoided neuropathy.  There is a clinical trial underway to determine if this works (other than anecdotal evidence)

http://www.clinicaltrials.gov/ct2/show/NCT00775645?term=breast+cancer+neuropathy&rank=1

Also, I know it sounds crazy, but I took a pre-natal vitamin while doing Taxol and for a few months afterwards.  Again, my DF oncologist was OK with it.  There is an extra dose of iron and folic acid in the pre-natal that helps with anemia and fatigue.  It's a cheap solution that made a big difference to me.  And Pepcid for heartburn.  I received an infusion of Pepcid before I got the Taxol drip, Pepcid works on the specific proton-pumper that causes acid reflux from a Taxane.  I know...more pills.  But if they keep you more comfortable, it's worth it.  And remember, it's not forever.  I remember thinking I was a walking chemical waste dump during chemo.  But I functioned pretty well, all things considered, and I kept reminding myself (as did my best friend - a nursing instructor) that it was temporary. 

And thanks everyone for the well-wishes. The first dose went down this morning with my breakfast.  All is good.

Hugs to everyone!

bak,maggie,mumtobe-no cording,it's the opposite arm from the side of bc. It feels hard/firm,does le feel hard? Thanks for the suggestion,i'll ask the mo when i see her. It's just frustrating not knowing,my mind keeps taking me to that place -It's spread to the bone,this is a symptom of it,i've had it for months! I know it probably isn't but I'll be pretty p*ssed off if it is and no one caught it! LOL  Hope everyone here has a great day.

Cocker and Inmate- I am not a collector, but when we do have a garage sale I banish my husband to the house otherwise he just practically gives everything away! He says he just wants to get rid of it. He sold a dishwasher we pulled out of our new house and used once for $20! It was worth about $200-even at garage sale prices!

Hope- Thank you! Wishing you a peaceful, stress free weekend.

Bernie- I am sending you a PM.

Luv + Inmate - I hope the trials are just the ticket! Thanks for taking one for the team. My aunt was in the first taxol trials.



Jan - I had both removed at once. I love being a flattop.



Annie - Woo Hoo - on the hair! It helps you feel " well".



Belle - welcome!



Bernie - great idea - I'll PM you.



12 year old son, has 2 friends over for the night. They each have a laptop and are playing a game together. New world.



I see BS for 6 month check-up Tuesday. That should take 5 minutes. I hope!!!!!

Hi all, I'm going to hv to gt used 2 the acronyms!



Belleeast--Would your doc let you have a bone scan, for peace of mind?



BernieEllen--I would like to be part of FB, but I dunno what pm is?



Inmate & Cocker--I just down-sized recently too, and had my daughters (19 & 22) do the same. I, too, was thinking that it would make it easier for my family, whenever I'm gone. Now, I have some regrets about getting rid of some sentimental things that might have been fun for my kids to have. Oh well!



For all you ladies on clinical trials, I toast you every day. I know all this will help my daughters, my twin sister, my cousins, and generations of women to come.



Karen--Cheers to you for your decision to go flat! I know of someone who did the same and had a gorgeous tattoo placed on her chest. I am debating nipples. Not sure I want them and have to make a decision soon.



As for lymphedema, I've had quite a bit of trouble with it, particularly when I eat salty foods. And, I had major cord issues, with six very prominent cords that kept me from straightening my arm for a while. A physical thx helped me, although it was very painful to have them "popped". I have full range of motion now and no visible cords. Do any of you have tips for preventing lymphedema? I have twinges of pain down my arm often.



Hugs to you all!

InspiredbyDolce (Debra) - this picture is for you!

I was PM'ing with Debra and she said I should post a picture of my daughter's and my pedicure, so here it is! My feet are the dark ones - I have a great Xeloda tan and she has the skin tones of a redhead. 

Yodie - there is a very informative forum on Lymphedema and several very knowledgeable ladies who can answer your questions.  You might want to check it out.