Calling all TNs

Anonymous

Paint- the A is probably Aloxi, a strong anti-nausea drug that works on the (vagus?) nerve to keep you from feeling nauseated.

My back is getting better. The cramping has subsided and now it's just tired and achy. Xray and MRI were typical of someone my age. I'll take it, compared to the 24/7 charly horse. Always something about horses...lol.

Pattismiles

I am SO glad to find this discussion group.  I am 55 and went for my regular mammogram which I have never missed since age 35.  I was shocked when they called me back in to retest and then do ultrasound.  I was told then by the radiologists that biospy was a must. I had a "oversized" lumpectomy due to two separate things to check. Turns out it was IDC, 1.4 cm.  My surgeon explained about the hormone situation and told me I was triple neg. which he explained the oral meds would not be offered.  Then I was on other sights and got really scared that I was one of the very few that was neg. and did not know if there was help for it!  Thank goodness I found out here that there IS help for us! I am still having test run (lymph node biospy next week) and them my first oncology appt. after results get back.  Thank you all for letting me join your group to talk about all of this!  Blessings and friendship!

Maria_Malta

Hello and welcome Pattismiles..I'm 56 and and have been having neo-adjuvant chemo since March.

Pattismiles

Helo Maria_Malta!  Pardon my little knowlege of the terms, but does neo-adjuvant chemo mean done before surgery?  How is it going?

Paintingmywaythru

Pattismiles..I was just diagnosed MAy 26th and had my first chemo today..We are all her to support one another. There is a wealth of information form these wonderful woman and it is a great palce to share your fears, vent, anyhing.

HeidiToo you are right it was aloxi. So hopefully I will feel Ok for a bit.

Maria_Malta

Yes precisely Pattismiles...Most women with TNBC usually have chemo before surgery to shrink the tumour as well as to be able to judge how well it is reacting to the particular combination of chemo drugs chosen.

riley702

Congrats, Suze!

(((Stupidboob))) Vent away, that's what we're here for. I got the Lexapro, too, and have stayed on it. I probably should have been on an anti-depressant years ago, it's made such a difference. What gets me are the people who expect me to never have a bad day because I'm on the Lexapro. I was venting to my sister during chemo, and she asked me if I had stopped taking the Lexapro! I said no, that this was me with the anti-depressant, and aren't you glad I'm taking it?

My kitten Lucy, has been sick with a cold/flu. Besides the antibiotic drops, the vet gave me some lysine paste to give her twice a day to help her fight off anything viral. Does anyone know how lysine works? Seems to be working, because she's more active, which led to...

I'd forgotten I had even put some glue traps for spiders in the utility room, but guess who found it tucked away in a corner? I heard this weird thrashing, flapping noise and here comes Lucy with the trap stuck to one paw. Trying to hold her still while I got it off wasn't easy, especially as she kept trying to put her other paw in it, too. She's sulking in the windowsill, now. Oh, Lucy... she's a 1 pound, 12 ounce ball of fire.

Titan

Stupidboob...ugh..the nuelasta shot...I hated that thing..I think it was the cause of all my problems also

bak94

Sylvia, I think your post got a bit lost, but I want to say congrats on the 6 month appointments instead of 3 months. So they did 6 years of every 3 months? When I had my first breast cancer I was released to 6 months after 3 years, yikes!

mamachick

Titan I agree, at first I thought it might have been the tax. but then we found out that my white counts were really high on the Nuelasta. They cut the dose in half and the bone aches and pains were very minimal, but after that first shot I was miserable!

GuyGirl

Ok l think I had a period.  I had some breast tenderness and then yesterday had light and I mean very light spotting.  How do I know if it was a real period.  My last one was last August.  I hope this doesn't mean it is coming back for good.  Sigh!

NavyMom

Guygirl-You might want to give your gyne a call.  I know that you have to be 12 months without a period to be considered in menopause.  You are so close...it might be worth a phone call.

  I went 20 months without a period and all of a sudden started spotting last month and has now elevated to real bleeding.  My gyne tried to do an endometrial biopsy in the office but couldn't pass the catheter so next week I go for a D & C and biopsy.  Cripes...I am sick of going to that hospital.  Hopefully just a bump in the road.

Navy

NavyMom

Glad the back pain is getting better, Heidi

Stupidboob

Titan:  Thanks for the hug..........:)   I started my farming when our beloved "angel" furbaby was going through chemo.   She was resting one day and I got bored so I tried it as many friends had ask me too and I never would, to keep from disturbing her while she rested I thought let me see what this farming is all about and I have been hooked since .   Ok to funny about freaking people out with taking your wig off at redlights.   Never thought of that.     I just feel naked without my hair.   I could not explain what I was feeling until earlier and that is the way I have to describe it.   One thing that shocked me was how hot being bald would be.

Mccrimmon324 thanks for the support and hey if you ever want to talk-talk let me know and I will give you my number.    I like the boards but sometimes a real voice from someone who understand makes a big difference.   I join the Reach for recovery through the ACS but you can't call those people, they call you when they have time.   

Babs37 thanks for all the info.

Suze35 congrats on being done with the rads and THANK YOU so much for telling me about sucking on ice during treatments as it has helped with the mouth sores.   I still get them but not like that first time.   The magic mouthwash is wonderful.............:)    Thanks for the info. on the Taxol too.

Mamachick I laughed when I read about your marshmallow, but I know how serious it was to you, as I am the same way on certain things and shoot some days it is like nothing really happens but the crying.   No reason for it, just the floodgates and being a weeping willow.   My hubby likes his xbox360 games as much as I like my farms so he thinks hey if she is playing her games I get to play mine.......:) Thanks for the prayers as well, it means alot

Paintingmywaythru  I extend my offer to you as well if you would like to talk-talk,  the loneliness is not good for those of us it bothers.   Some people like to be alone, and that is fine, but some of us don't and that is fine too.   What are cooling mitts and what are they used for?   Are they to help keep the nails from coming off?  

Why does the nails fall off?

Did you all get any of the neurothpy *sp* with the Taxol?

A lady came over to sit with me a few minutes after my last post and then I got in the pool for a little bit to see if it would help with the BLAH and the pain in general.    I did good tonight, and stayed in about an hour. 

thanks for all the support gang

Stupidboob

Pattismiles:  Good luck to you

Titan:  I am glad that yet another thinks that the Neulasta was horrible.  Not that you went through it but that I am probably right that it causes alot of my issues.   Reading what others say just makes me know it.

Riley702: That is sad/funny about Lucy getting on the glue strip, I know they sure freak out when something gets on their paws.    The lady who came and got our ferals for being spayed/neutered and shots told me to get some Lysine for an upper respiratory issue with one of them and I was cautious about ordering it but now that I read you feel it works I will get it.   I was a little leary because you can't believe everything being said.  So, two people liking it I will get it for him.  Hope Lucy feels better soon.

Maria_Malta:  Thanks for all the info.     I tell you what one of the things that has ticked me off more than anything is "SUCK IT UP"  I get tired of being told that, it is rude for one thing and just so non-caring to me.  Just don't say anything is what I say, that is not helping anyone.   I also get tired of people saying so and so got through it and hers was a WHOLE LOT worse than yours.   I think if it is bad to us it is bad regardless of who got through it and what they went through.   I mean I am sorry people even have to go through it but to say the things people say is just strange to me.    Oh sorry got to rattling..:)   thanks again

MBJ

Heidi:  Glad to hear you're doing better!!! 

Titan:  re:  Taking your wig off at stoplights to freak people out-LOL!!!!

Painter:  The steroids should keep you up for a couple days.  Hope you have some food planned for the days you don't feel so hot.  Is anyone coming to look in on you?

Suze & Fighter:  Have fun getting your party on!!!  Having a glass with you all!! Cheers!

MBJ

Stupidboob:  Know that it does get better with time--chemo sucks, loosing your hair sucks even more, having your life turned upside down can be challenging but we have all been there and we will be here to help you through.  Hang in there, ok?  Hugs!!!

Titan

There is a blood test you can take to see if you are through menopause..ask about it...I had it done..very embarrassing moment for me..I asked my onc if I could have..uh..well..you know...and he said can  you have sex w/o protection...and I was like yes..and we did the blood test. gosh..BC encompasses all kinds of things doesn't it???? it was weird that I didn't have to worry about becoming pregnant..at the same time it was like...ok..that part is done..so..no estrogen for me, no nothing..so  I shrivel up and become an old woman now???  You know they aren't going to give us any estrogen..even though TN isn't estrogen driven...oh well..bring on the wrinkle cream!

I still hate to hear the word neulasta...I think I hated those shots worse than any of the chemo...yeah..I'm whining but I think I would have sailed through the chemo if not for the neulasta..and yes..my WBC were extremely high thoughout the whole chemo...I had to have them during taxol also..if I had to do over I would have said NO to them during the taxol part of the chemo.

Paintingmywaythru

TITAN:

What were you Se's from neulasta? Did anything help?

Getting ready for tomorrow's shot.

Huskerkkc

Take an aleve and a Claritin the day before, the same day and the day after you get the shot. I did mich better after asking for a half-dose since my counts were so high. A warm bath helped before bed to help e/aches and pains.

BernieEllen

Hi to all, haven't been here for awhile.  Darling stupidboob.  Have been there and back but more with my bipolar.  I refer to everything as sod it information - i't won't get me down.  Won't bleat on about being positive but it works for me.  Maybe think about changing the "stoopidboob" to something a bit lighter.  Thinking of you all, hope you have a good weekend.

mccrimmon324

Painting, try the claritin / aleve like Huskerkkc suggests - I've had 2 treatments/shots and have used both times and have had no pain at all. 

tnbcRuth

I think one of the hardest things for me to get thru was everyone telling me how easily everyone else got thru the surgery, exchange and treatments.  It has (and still) makes me feel like I didn't do a 'good job'.  

lrr4993

I never did the nuelasta and was glad. It sounds terrible. My onco seems to be the only one who does not give it as a matter of course. I would have gotten it if my blood counts did not rebound or if I had problems with infections, but ended up not needing it.

sylviaexmouthuk

Hello bkj66,

I just wanted to say that I had three monthy check ups for about three years, and then went to six monthly check ups. I am still having six monthly check ups, even though I have now gone past six years since diagnosis. My oncologist has made an appointment in April 2012 for me and I shall see my breast cancer consultant in October 2011. I am glad to keep on with the check ups and am in no hurry to be discharged. With this disease we can take nothing for granted.

I hope all is well with you and hello to everyone from this side of the Atlantic.

Sylvia

Anonymous

Never had the Neulasta shot and d*mn glad I didn't. From the sounds of it, it would have made my chemo experience a lot more unpleasant. As it was, it was tolerable.

Heidi (hobbling about trying not to bend over or turn suddenly--- amazing how we take that stuff for granted until we can't do it!)

mccrimmon324

tnbcruth - I certainly didn't mean to sound like I'm bragging or think this is a breeze and should be no problem.  I'm only into my second treatment and honestly am surprised that going thru chemo is completely different from what I had always envisioned.  I seriously believed that from day one your hair fell out and you vomitted daily for 6 months.  Obviously I have no clue.  I'm happy that I only feel sick for a short while and have some good days in between but mentally I'm a disater, I dwell on this constantly, every ache, twinge, cough, whatever throws me into a complete panic.  I'm absolutely terrified.  As far as surgery, my lumpectomy was the first sugery I ever had, my port was my second and I cried like a baby for both I even apologized to my husband while in pre-op for my port.  He once had surgery on his elbow and was very nervous, internally I thought he was over-reacting and being a big baby and here I was crying so hard he could barely understand me.  This disease is absolutely horrible and I now have so much more respect for anyone who has gone thru or going thru this, its not easy, not physically, mentally or emotionally.  Nothing good can be said about it but you did get thru all of the treatments and to me that's a great job and when I come on here and read posts from you ladies that have already gone thru this it does help me see that I'm going to get thru it too.  About the claritin tip, it's something I found on here and tried, thankfully so far it has worked for me because I have read on here and talked to people who have had such horrendous pain from it that if I can spread the word that it can help I will.  My SIL's father is currently going thru chemo for pancreatic cancer and they are delaying his next treatment due to his low WBC, he won't take the nuelasta again because it cripples him and he can't even walk.  I'm really sorry if I offended you I would never intentionaly mean too.  Didn't mean to ramble either but I always do.  Take care everyone.

 Heather 

Titan

Dang Neulasta shot...I did take the claritin and I think it helped a little...I got it on a Thursday afternoon and by Friday afternoon I felt like I had the flu...not the intestinal but the body aches..my bones hurt.collar bone, arms, pelvic...my skin hurt when it was touched...the best thing to do was to go to bed and sleep it off...the se's usually lasted about 24 hours (or less)..then I felt better..I was just MAD that 8 Friday nights were a waste...I wanted to skip them badly but everyone talked me into taking them...."you might get sick, "it's part of your treatment"..blah, blah....

I didn't dread the chemo as much as the neulasta...

Sorry..I'm whining again..but I did hate that thing.

MBJ

Titan:  I guess it just goes to show how different we all are-I had zero problems with the neulasta shot but the chemo destroyed my stomach. 

Heather:  I thought chemo was going to be way worse then it was, however, I really NEVER want to have to go through that again and I really hate that I am continuing with SE's long after the fact.

tnbcRuth:  I get it that many people seem to say:  it's no big deal, blah, blah, blah but the truth is we all react differently, many of us have other issues, SE's that continue--it's just always a battle and it's not one I would wish on anyone.  How are your new supplements working?  http://www.eurohealth.ch/?active_product=PREGNENOLONE&id_page=55&id_owner=6&id_menu_main=31&lang=en
Hugs!

inmate4232010

Good Morning Ladies,

I have good news.  My cancer has not spread and is just localized in "lefty".  This was the best news I think I have ever heard in my life.  Now I can stop thinking about everything being my last and move on to concentrating on kicking some a**!  I will be scheduling my surgery soon and then off to chemo for the second summer in a row.  I can do this!  

Thanks for your kind thoughts.  I feel lucky to have found such a group to vent and share in the circle of encouragement.  I hate the reason we are all here but am blessed to be a part of such a strong group of fighters.  Love and white light to you all!