Calling all TNs

CharB22

lisajcj - no, the Neulasta shot is given to me in my arm, the day after the treatment (today for me as yesterday was #2)

I'm doing remarkably well after this 2nd treatment -  just tired. And my mouth is icky - I've been sucking on peppermint candy. My MO recommended peppermint to help with nausea. I've been a little more proactive with the nausea meds this time around and I think that's made all the difference....was pretty nauseaus after 1st treatment.

annie3310

I've not been on this forum more than a day or two, so I apologize if this question has been addressed. I'm wondering how everyone's feelings about being triple negative have evolved. I'm just a month away from my diagnosis, and the TN news shook me up. It's settled a little bit as I've gotten into my treatment plan, but I still have my dark moments, not knowing really what it means in terms of my chances, for lack of a better way to put it. Perhaps there is no way to know that, but there are undoubtedly ways to cope with the slightly darker prognosis with triple negatives. Any thoughts you can share?



Annie

michelleo13

Annie, I just had my last radiation tx yesterday and now the reality of "that's all folks" is starting to set in! I have to admit, I'm scared s*%tless! Not sure how I'll manage to get back to "normal" but I guess I'll figure it out! I've been able to stay pretty positive throughout my treatments but now they're done, I feel like I've been cast adrift!



I also didn't have any issues with the Neulasta shot. I didn't take any Claritin or other pain killers. I gave myself the shot each time too. When the nurse first came to my house after the first treatment, she asked if I thought I could do it myself. I told her I'd give it a try! She showed me what to do and I did give myself the shot. Then she told me she'd only had one other patient be able to to that. I laughed! I think if she'd told me that first I might not have been so willing to try it!

Babs37

I had my DH give me my Neupogen shots. I had to have Neupogen shots for 7 days starting 2 days  after each AC chemo. I had 4 DD AC. So I remember that my pain used to start on the tuesday,after 4 shots, afternoon and was at it's peak on the following saturday(the day after my last shot). I ached from my waist to my neck. I felt like my neck nodes were going to explode, I don't know why it did that. And my skin...... OMG!!! Everybody in the house knew not to touch me! I got so nervous after the fourth shot because my skin ached just to the touch so you can imagine how it felt being poked by the needle! I tried Claritin, Motrin,Tylenol, you name it and nothing worked. My onc gave me a RX for morphine for the pain, very low dosage, and I tried it once after the third AC treatment/ Neupogen shots  and it didn't even work! I hated those shots! I was so happy when my doctor told me I didn't need them on Taxol.

Sugar77

Riley 2 years as a great milestone. Wishes for many, many years of continued good health.

Michelleo congrats on finishing rads! I know it's scary but you'll get used to your "new normal" with time.  

beckyv

michelle013 - So happy to hear you are done with all your treatments.  I am just starting my 4 months of chemo - so I can only imagine that your life was all consumed with your treatments.  BUT NOW - it is time for you and for you to move on and enjoy!!!!  I can't wait to be at that point.  You Deserve some pampering.

beckyv

Annie3310- I love my oncologist and have absolute faith in her.  Believe it or not - she did not make a huge deal of the TN status.   Just told me why my chemo treatment was so important - but also indicated chemo is usully more effective on TN.  I believe any woman dealing with BC probably has the same fears we TNs do.  Some days I feel charged and ready to fight this and know I will be around to see my children flourish, and my grandchildren be born - then other days I just keep thinking what if that doesn't happen.  Laying here in bed - with my dog on one side of me and my kitty laying on the other - feeling pretty well after BMX on 12/22 and T/Es - I CAN DO THIS!!!!!!!

Anonymous

Annie- When I was first diagnosed I was scared sh*tless. Those were very dark days.

Now, 2 1/2 years later I'm 99.5 % back to being myself. That .5% reflects those times when I allow myself to think about recurrence. I don't think anyone gets over that fear. You just learn how to live with it.

In my case, I have learned to put it out of my mind and get on with my life. The only reason, IMO, I even allow that .5% to remain is to protect myself from being broad-sided by another diagnosis.

You and I have similar diagnosis... I had zero node involvement. I still check this thread frequently because I feel I can help lighten the mood in here from time to time.

OBXK

KSteve - my 5 pound, Yorkie - poo keeps me company. How wonderful you daughter has you to look after her baby so well. my is my shadow, and if he thinks o need DH - he goes and gets him !



Wishing everyone a peaceful seemed. I have to get up at 4:30 to leave at 5:30 to go with my 12 year old to the regional Science Olympiad. Hope I can find the motion suckers pills, for the bus rode.

christina1961

Congrats, Riley!!  That is awesome news! 

Titan

He**..I didn't even know TN was a scary thing until I read about it on line....but...my onc still doesn't make much of it...when I was whining to him about him not letting me take metformin because "since I'm tn there are no drugs for me (us) to take...he just kinda of shook his head..I could tell he felt bad.

Ok..I'm gonna rant a second..there is going to be a new Facebook thing about breast cancer..remember one was your bra color, one was something about your purse...and one of the ladies was talking about Suzanne Sommers..about how she didn't "want" chemo..well hello??? I kinda got on there and said that no one "wants" chemo but there are tons of different kinds of breast cancer and if I wouldn't have had chemo I would probably be dead by now..and then I said that Breast Cancer isn't pretty like Suzanne Sommers, and that it kills 40,000 women per year and that they should come on here and read about alternative through the Stage 4 thread and see what women are facing every day, every minute...gah...I was pissed.

Ok..I'm done now.

gillyone

Good for you Titan!!!

CharB22

Annie- I'm pretty freaked about the TN diagnosis, too. I'm debating about a prophylactic mastecomy because of it, even though my nodes were clear and there was no vascular involvement, which according to my MO, is the best case scenario. The risk of recurrance and mets scrares the crap out of me - I've got a teen and tween that I want to see graduate, married, and have kids of their own.

mccrimmon324

Annie, I'm 4 months out from my last chemo, I can tell you, like Hiedi, the beginning was a very very dark place for me.  My birthday was last Sunday, I honestly could tell you then I didn't think I was going to make it.  I ended up asking for an anti-depressant and forcing myself to NOT google TN anything anymore.  Now, I come straight to these boards and this is where I stay.  The women on here are extremely supportive and definitely helped me get thru treatment.  I'm trying my best to move on but it's still new and I do still think about it every single day, almost every hour but the paralyzing fear isn't as bad.  I think as each day goes by it gets slowly better but it's a long road.  I do my best to eat well (not doing so good) exercise (doing excellent) take vitamins, supplements...

As I have been told 100's of times on this board, while TN is scary, the risk of recurrance drops significantly after 3 years I believe, unlike our ER+ sisters and chemo works great on TN.  I still have that on auto repeat in my head...  Treatment will be over before you know it.  You'll start to get back into your old routines and you'll find a new normal.  Just take one day at a time and you'll get thru this. 

Sorry for the ramble, too much caffiene already. 

Hope everyone has a wonderfull weekend.

Hope60

Annie - As others have said, I was terrified when I was diagnosed....dark days indeed.  But at my first consult with my onc, she downplayed my TN status.  She feels a little too much has been made of it.  She also explained that it tends to respond well to chemo. That made me feel better right away. Now that I'm 9 months out from the end of all my treatment I still think about it, but not as constantly as I used to.  I still have bouts of fear....especially around doc appointments and mammos....and I'm still working on finding my "new normal".    I think that just comes with the territory of BC in general.  Just try to take one day at a time....

ksmatthews

Heather I agree completely with what you said.

I have said this before.  My BS told me TN isn't better or worse, just has to be treated differently.  He also said it responds very well to chemo.  After chemo I was ned when they did my surgery.  So I am staying positve that this crap will NOT come back.

Also stay off any web sites other than here.  That is very important. 

eva57

Hello All

Diagnosed just before Christmas (my early Christmas present not impressed) Have not been staged yet... doing chemo first 4 months evry 3 weeks AC then surgery then Taxol 4 months every week scared more about losing my hair than the chemo 1st chem was Jan 12th and hair is starting to come out noticed this morning . Wig? Hat? Just wondering if anyone else worried this much about their hair am I being vain?

Sugar77

My onc didn't seem too concerned about TN status either. He said it's treated with chemo and that it is very effective. He also said it's front loaded so if it's going to come back, it will generally do so earlier than in a hormone positive patient.

journey4life

Eva - I haven't had chemo yet so I don't know how I'll feel about my hair. I've decided that BC is all about sacrifices - our breasts, our hair, our sense of "normal", and sometimes our confidence. BC may take all that but I refuse to let it take my spirit or my life!!

mtnbiker

Yes, I too felt very vain.  bc takes away everything im my eyes that makes you a women..okay with that being said, my hair started falling out after chemo 3 at 5 i shaved my head, needed to move on was my thoughts and I did... I have wigs, hat's scarves.... its good to have options when I wear my wig, I feel more like a women less than a cancer patient...... I am so done with feeling like crap!!!!!!!!!!! I never thought you could physically be so tired............

I too have chemo first 12 , then surgery then rads...

Thank god we have each other ........... on these blogs........

my thoughts are to Be In The Moment;;; especially when there are good days!!!!

Sugar77

Hi, have any of you seen this article? Hope for TN...

 

 http://news.harvard.edu/gazette/story/2011/03/new-hope-for-the-cure/?utm_source=alumniaffairs&utm_medium=harvardmonthlyemail&utm_campaign=april11&sms_ss=email&at_xt=4daf0fdaa1c99c77%2C0

 

khs113

Hi Eva57--You came to the right place. Lots of support. When I started losing my hair after the 2nd treatment had alot of the same feelings as you but then my scalp was so uncomfortable and I was  having to wear scarves while fixing meals so my hair wouldn't fall into the food that I went out and got it all shaved off. It felt much more comfortable. I invested in a wig which I wore religiously when I was out and about because it made me feel more normal. People didn't see you as a cancer patient. But then after awhile I really didn't care about it. I just wanted to be comfortable so I mostly wore pre-tied bandana-like scarves that I could just throw on when I went out. Once my hair started to make its reappearance the wig was just too uncomfortable to wear. You might want to also find something comfortable to wear on your head at night. It gets really chilly with no hair. I'm a knitter and knit myself a little night hat out of a soft yarn (Angel Hair from Joanns) that worked really well. At first the hair thing was a big issue but you'll find that getting and feeling better is the priority. Drink lots of water and let people take care of you. Hang in there---it gets better.

mtnbiker

thanks for the article...were getting closer!!!WOOHOO

mccrimmon324

Eva - I was terrrified of losing my hair just as much as I was of having Cancer.  I went out and spent ALOT of money on wigs & scarfs.  Wore my wig outside all the time, I was just more comfortable in it.  It also kept the questions and looks away.  At home was a completely different story.  I think I wore a scarf once, it was hot and I was uncomfortable, just walked around bald. 

I have to admit, while I didn't like being bald it wasn't nearly as traumatizing as I thought it would be. 

michelleo13

Beckyv, you're right about the pampering. I went out and treated myself to some retail therapy at my favourite store on the way home from my last rad tx on Thursday.



Like many of you, my ONC didn't make a big deal of the TN thing. In fact, she didn't refer to it as TN, she just said all of my receptors were negative. So, I went home, did some googling and then totally freaked out. When I went back to see the ONC again and asked her about it, she said "this is treatable" and that's why we're being aggressive with chemo. I just hate when I see anything on the new about TNBC, it's always doom and gloom which is not reality as far as I'm concerned.



Eva, the funny thing about hair loss for me was it hit me harder at first than I expected. The first day I had to wear the wig in public, I cried my heart out. After that, I was fine. I don't mind my wig but I don't really wear it very often. Given that it's winter, I just put on a wool hat when I go out most of the time. I'm now 10 weeks PFC and have a full head of very short hair! I'm hoping it grows enough by spring that I can go "topless".

Sugar77

Michelle - I totally agree with you! My onc gave me lots of hope.

christina1961

Sugar,

I saw that article and that looks very promising.  I have been in bed today following chemo and 12 hour workday yesterday so I have been researching cancer vaccines.  There are many promising vaccines in the pipeline to prevent recurrence - some of them appear to have broad application for different types of cancers - and many for breast cancer.  I am encouraged.  I also did the cancer math calculator for my cancer and it was less discouraging than I thought it would be.  I'm trying to stay positive.  I've been on a clinical trial with more chemo since late October and will have had almost a full year of treatment when I get through, so sometimes I get depressed because I just don't feel so great (plus all the usual reasons after a cancer diagnosis!)  So....I'm glad to say that I am very encouraged by all the research - and if vaccines help, that would be great because most seem to be given with monthly injections over a six month period. 

1CandleBurningBright

Yes, I agree with mtnbiker.....Woo Hoo!  Raise your glass girls.....here's to hoping all things "Positive" in the world of "Triple Negative Breast Cancer".  No where to go but "UP"!  Actually, mtnbiker, your diagnosis and mine are almost identical, however, my first diagnosis was April 2008 and second diagnosis in December 2010.

Finding this Breast Cancer site was like a God send.  I'm finally at a place where I can relate to people who are "just like me" so to speak.  Not on an Island adrift anymore.

Nice to meet all of you lovely Ladies.....and wishing us "all" the best!

P.S. - Thank you "Sugar77" for the article.  I found it very helpful!

christina1961

CandleBurning

Nice to meet you, too!  I am a 2b (downstaged to 2a after chemo) also.

Hoping everyone has a great weekend. I think I am going to take a shower and maybe go for a short walk!

1CandleBurningBright

Thank you, "Christina19".....and I'm happy to learn of your being downgraded from Stage IIB to Stage IIA.

Enjoy your day!