Calling all TNs

Cocker_Spaniel

Hi Ladies

Mags - thank God for over sleeping.  Can imagine how worried you were and being a mum of fearing the worst as well. When my daughter was going through a marriage break up I knew she was depressed and I felt just like you if I couldn't get hold of her.  So very glad all was well.  I'm sure your son is going to be fine given a little time. 

Naan - I don't know much about getting chemo twice but I agree with the other ladies, if in doubt get a 2nd opinion to put your mind at rest.

Karen - your poor little Augie. Probably so very hot for him too.  Send him to me.  My Chole will teach him a few tricks!!  

Luah - sounds like a wonderful trip you and your dear sister will be taking together.  Can just imagine the peace and calm  you will both be feeling and so lovely that you can be together in beautiful surroundings.  Have a wonderful time, you both deserve it so much and don't forget to take lots of pics.   

Have a good day ladies.  Praying for some rain for all those that need some.  Annie           

Cocker_Spaniel

Two old ladies were rocking in their chairs
on the nursing home porch.
One says "Martha, do you remember the minuet?"
Martha answers,
"Heck, I don't even remember the ones I slept with."

naan1004

Maggie, what is a complete response, all I know is my tumor didn't shrink at all, but at least I had no mets.

Luah, I had 8 treatments and he wants me to have 4 more!

naan1004

Anybody know any good TN specializing onc in southern CA area?

Cocker_Spaniel

Naan - was it Taxol you was talking about because you can have 12 of those.  

BernieEllen

mags20487

Complete response or PCR means that there is no longer any evidence of the disease in the tissues.  You can google to get the full definition.  Perhaps your Onc does not feel that the chemo got rid of all the diseased cells and wishes to do more chemo to "clean up"?  I would definitely find out what the rationale is there and as the others suggested get another opinion.

Maggie

naan1004

CS, I have already had 4 AC every 3 wks then 12 Taxol weekly, they want to give me 4 additional A and Taxane every 2-3wks or 12 weekly.

gillyone

Ladies - I would caution all of us to be careful about giving medical advice to each other. I am a little concerned about things that have been said to Naan - regarding doing more chemo, don't do it, get another onc, you can have 12 of that kind etc. None of us are in full possession of all the facts regarding anyone's dx and tx, unlike one's oncologist.

The most important thing we can do is support each other as we go through treatment.

edited for typo

OBXK

Luah - have a lovely time!

onvacation

Have any of you tried drinking green tea for prevention?  I am hearing both sides, it does help, it doesn't help.  Guess it can't hurt, and now that I'm done with chemo taking the antioxidants should be good.  Just wondered if anyone is drinking it now that they had a diagnosis.

naan1004

Gill, thanks for the input, I really wanted to know if anyone else was in my situation with my similar dx, cause I have never heard of this.



Thanks to all who have given me input, it is up to me to decide what's best for me in the long run, but all your input will be taken into consideration since more chemo can't be taken lightly.

JAN69

Naan,  Julie---I wish you  strength and wisdom for all your decisions ahead.  If you do find an oncologist specializing in TN, please let me know.  I live about 300 miles from LA and don't want to go back to my current center if I need more treatment.  You might google UCLA oncologists and see what shows up.  I have a vague memory that there is one on its list---though I could be wrong.  Jan

cupcakies

onvacation - i drink green tea ALL THE TIME, every day! it can't hurt.. i drink regular in the morning and decaf at night

LJH1004

Hello everyone!  My sister is the one with TNBC.  I joined this club to find out all the information I can possibly get. My sister is an amazing person and I want to be by her side thru all of this.  My sister is 33 years young and is up for the challenge!  Cancer picked the wrong person to mess with Everything I read before was nothing but negative news.  I have enjoyed reading the stories on all the amazing survivors out there! 

Tazzy

Wow.. so much to catch up on.

I know I will never answer you all - I agree Luv, Annie does such a great job of that.  

Luah - have a wonderful trip and have fun with your Sister.  Maritimes - I will visit one day !

Lovely - that is very sad about your family.   Sometimes even family do not know how to deal with our dx.

Mags pleased everything turned out well with your son.   Please take care of yourself working all those hours.

Annie - happy you and the old feller had a nice trip.  Love the joke.

Bernie - laughed out loud at the dog and cat.

Lovely - sorry no advice to offer but sending healing vibes your way and hope you get to feel better soon.

Kim - I used to drink green tea daily before dx, not for prevention though, just cos I liked it.  Now I've finished chemo I will start drinking it again.   Like you say cant do any harm.

Julie -  good luck with whatever decision you decide on chemo.  That's a hard one.

LJH - you are a wonderful sister - that is so very very young.   You will find so much knowledge and support on this site.  Good luck.

Sorry to those I missed - hello.  Hope you are all having enjoyable days/evenings with minimal se's.

Take care all.

OBXK

LJH - how far along in treatment, is your sister? If you have any questions, ask away. Sometimes I think it's harder on our loved ones.

Wishing you both, all the strengh you need.

LNBCA

Onvacation: I've always read that green tea is great for many things. One thing I am trying to push on everyone I know is ALOE VERA JUICE! Lol. My mom and sister get sick and tired of hearing me preach about it. It is supposed to be a really good cancer preventer, ESPECIALLY for breast and ovarian! I originally started buying it for me and my kids to drink with our juice. After all of my obsessive online researching for preventing the stomach flu (I have a bizarre phobia called Emetaphobia, an irrational fear of vomiting), I read that it is really good for intestinal health, now I am reading that it may help prevent breast and ovarian cancer and other types of cancer.

Cocker_Spaniel

LNBCA - I also have Emetaphobia.  Have had it all my life and it rules it,  even through chemo.  The girls on here were wonderful when I was first diagnosed and was worried about nausea and vomiting and they helped me through that stage.  It is totally debilitating and totally irrational I know but for some reason I have it and have never been without it. Luckily my family are all very understanding and help me through that kind of thing as well if anyone is ever sick.  So I know exactly how you feel about trying to avoid stomach flu and other sickness.  Annie      

LNBCA

Wow Annie, I don't come across too many people who have emetaphobia. Most people make it out to be a joke, including most of my family. Funny thing is, my mom's second tn diagnosis has actually helped me get over this whole phobia thing, (at least a little bit). I've tried telling myself over and over, "if all you have to worry about is you or your kids getting the damn stomach flu, your pretty frickin lucky!" I see kids with cancer and tell myself "wow, and your worried about your kids getting the stomach flu". So now I'm really telling myself this. But I still REALLY worry about it! Lol. Don't think I will ever, ever get over it. I keep reading people's facebook status saying their whole family just got over the stomach flu and it sends me over the edge. One of my husband's best friends wrote on facebook two weeks ago that him and his wife and their baby all had the stomach flu and I told him "sorry, but stay away for two weeks, minimum!!" We had invited them over for a 4th of July bbq, but after reading that I had to turn them away. Luckily they know all about my phobia and are pretty understanding friends.  

Cocker_Spaniel

This is where I live isn't it beautiful

BernieEllen

Cocker_Spaniel

Good evening Ladies

Hope you are all ok. Where are all our ladies with their wonderful posts tonight.   

I'm off to see the oncologist tomorrow to see whether its more taxol, another chemo or straight to radiation.  My hands are a bit better but still sore to type with so will see what she says.   I'm not looking forward to any of it truthfully but I guess I will take what she says.  I really don't want to go away from home for six weeks although I will be able to come home at the weekends. 

Hope you are all well with no problems.  Annie   

LuvRVing

Annie - the picture of your homeland is breathtaking!  I hope everything goes OK with your oncologist visit.  I suspect, at the minimum, you'll be doing radiation.  Are they doing the new 3 week protocol in New Zealand?  Canada does it, it's being trialed here in the US.  Maybe you could suggest it as a way to reduce your time away from home.

I hope everyone has a good week with lots of love!

LJH1004

OBXK- My sister was diagnosed on 5-21-12, had a double mastectomy with reconstruction on 6-12-12. No lymph node involvement.   She has to wait to heal completely before she can start her chemo.  Hope to find out dates by the end of this month.  BRCA1/2 were both negative

Tazzy

Annie... truly spectacular - wow!  Good luck with the onc tomorrow.   Whatever they advice its another step closer to being NED eh?   Happy the fingers are a little better.  Keep us posted.

Take care everyone - hope you are all managing to enjoy your days.

Anonymous

Wow, CS!  How gorgeous!

TifJ

Annie- you live in paradise! Right now all I see out my window is dry, brown grass and cow poop (we back up to a cow pasture!)

kathyrnn

Wow, hope I don't miss anyone. Lots

of posts.



Spica- those chemo nurses definitely did rock! People will often surprise you. One of my poker buddies is bald on top, but wears one of those hippie man pony tails. I often wondered why he just didn't cut it off? He came in one day and it was gone, so I asked. He grows it till it gets long enough, then donates it to Lovely Locks. Definitely surprised me.



Tazzy - that was one very smart 12 year old!



Jan - you asked about the rationelle behind the Metformin trial (and someone else too) Here's what I understood from what I read in a nutshell. Researchers were examining relapse rates ( I don't know if it was TN or all breast cancers). They happened to notice that diabetics on Metformin had a lower relapse rate. Then they went back and looked some more and found out diabetics on Metformin had a better response to chemo. That was the basis for the studies. There is no proof yet that it works in non-diabetics, but the initial studies must have showed some promise. (we'll have to wait to see what the studies show. It could be that diabetic's altered metabolism is the reason and not the Metformin at all. Only time will tell)



Mags - so sorry for the scare with your son. Your story about work reminded me of a plaque my friend had on the wall of her business. "the best thing about owning your own business, is that you get to pick which 20 out of the 24 hours you work!"



Luah - congrats on your graduation to annual, and have a blast on your vacation!



Gemmy1 - welcome. This thread is a perfect mix of seriousness and silliness.



MarshaJFox - welcome. Very sorry about the loss of your Mom and Husband, and having to join us on this journey. The joint pain will get better.



Phgrahm - Congrats on your graduation from chemo. Rads are definitely easy, just more of a pain because they're daily.



OBXK - Yay on the test results.



CharB22 Congrats on being done. Please pop in and keep us updated.



Naan1004 - I agree with what Mags said about "clean up". I do have a suggestion for a question to ask onc. I had chemo before surgery so the could monitor the effectiveness of the chemo, by watching to see if the tumor shrunk. If you had no shrinkage from your first round, I would want

to know what their rationelle is for using the same drugs again?



Gabbi42 - lovely to have someone from Cocker's part of the world.



Lovely - no suggestion, but I hope you feel better soon.



LJH1004 - There are many survivors. (we love it when someone pops in just to tell us they're a long term survivor. You're a good sister!



Bernie - *gigglesnort*



Cocker - Wow, it's beautiful where you live!!! Sorry you'll have to be away from Old Fella (little chewing shit, not so much). After listening to you and Mags i'm glad I didn't worry my Mom when I got divorced. My Dad died 2 mo after I seperated, so we were busy going through that. Once we made it through our grieving my Mom's only worry was that I was out having way to much fun!



Luv - Mom is doing fine, but I have reverted to the term "old woman" this week!!! We have just spent a week battling. (Back story so you understand). I have been living at for 16 months without a bed. There was a full bed in my Dad's room, but apparently they bought his full size mattress from a granite counter store!!!'. I have slept on an old couch, in my Mom's bed with her (just ugly, plain ugly), in a recliner. For a short time I had an air bed but it died after 2 mo. Because I have an AC in Dad's room, I spent the last month on a nest of afghans on the granite mattress (doesn't help with granite). This has all wonderful for someone with a herniated disc *end sarcasm*

This week I told her my roommate was going to help me move my queen mattress down here. She didn't want it, a "queen is to big for the room"!!!!. We went back and forth all week! She insisted I buy a new full (I don't want a full, my feet hang off it) She then insisted she'd sleep in the couch and I move in her room (her oxygen is an her room and her bathroom is 10 feet from the bed. Dumbest idea ever!). Now let me tell you the real reason for all this fussing and fighting, she's bitched that I'm going to throw out a brand new mattress.........that cost $150. (can't be granite, that would be MUCH, more expensive!!!).

Well my roommate and I humped it down Saturday morning. When my Mom got up later, she immediately wheeled in to look at the room. Her remark: "oh you were right, it fits fine!!! (what..... You think I'm to stupid to take a tape measure and check the space before I do all that work??????)

I HAVE A REAL BED!!!!!!!!!!!!!!!!

GuyGirl

Please pray for my sister who has to have a biopsy on Friday.  Here MRI and Sonogram show something suspicious.