Calling all TNs
Comments
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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.
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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....
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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.
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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?0 -
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.
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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!!
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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!!!!
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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.
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thanks for the article...were getting closer!!!WOOHOO
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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.
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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".0 -
Michelle - I totally agree with you! My onc gave me lots of hope.
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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.
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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!
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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!
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Thank you, "Christina19".....and I'm happy to learn of your being downgraded from Stage IIB to Stage IIA.
Enjoy your day!
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Thanks for the positive attitudes about TN. As my MO said, it is what it is, meaning, I suppose, that we treat it in the best way possible. There's nothing I can do to be non-TN, right? And I am encouraged by many stories of how effective the chemotherapy is.
The biggest SE I'm experiencing is fatigue, so that's not so bad. It just makes me feel a little lazy/guilty, but that's my head that needs adjusting - not my meds.
Annie
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Eva,
I read all the posts here but don't often post. But I can relate to yours. I had a lumpectomy a year ago next week, with dose-dense chemo every two weeks and 33 radiation treatments. My hair started to fall out just over 2 weeks after my first chemo (day 17 I think!) I got a shorter cut to prepare, then had a friend buzz it, but very soon after (2-3 days) had my husband shave it. I cried and cried that night. I really was more upset about the hair than the chemo.I even said I would have prefered to lose my breast than my hair. Now that my hair has grown back and I'm having my third hair cut next week to tame the chemo-curls, I might soften that statement but it was very true at the time and I was ashamed of myself for the vanity. I got a good wig that I wore every day for months. I am a school counselor and did not want my kids to know about my illness. Honestly, I looked good in the wig, better than pre-cancer. Which made me sad and made me feel like a fraud, but everyone thought I looked so good. You'll find many feel that way. I took the wig off at home and wore scarves and hats. Don't get too carried away in buying a lot. I had a hard time with scarves unless they were pre-tied. I also hate hats, but wore a ballcap at home a lot. There is a thread on here that gives suggestions for head-coverings and places where you can get things for free. There is also a hair-hair-hair thread where gals post pictures of hair growth and offer suggestions and support. Some love wigs; some hate them. Some swear by hats, others not so much. Some rocked the topless look, others are not so brave. You'll have to see what you are comfortable with and it may take awhile to find that. But as scary as the hair loss is, it does grow back. I lost my hair in early April and was wearing my own (very short) hair by late August-early September. You'll do great. Stay with 2-3 threads here and be supported by those who have walked the path ahead of you!
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Eva...you are certainly not vain at all..when I got my wig from a local salon (this salon really takes care of BC patients..they got me the coolest wig..and at cost)...the owner took me to her office (for privacy) we talked alot...she said that your hair is what people first notice about you..so of course losing it is quite a shock....
I got a wig that was totally different than my real hair...kinda blonde..very sassy looking.....once people got used to it it is was no big deal...this person was ME..at the time...
Actually, looking totally different was kinda fun..I got carded when I bought wine..and also if you see someone you really don't want to talk to (or have to explain things)..you can just kinda slink away from them and they won't even know it is you.
I really don't know where I'm going with this but please understand that maybe losing your hair isn't really part of the "big picture" when it comes to getting rid of the freaking cancer..but it is a big part of your self image and how you see yourself as a breast cancer patient...
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Read the article too if the drugs are fda approved and just sitting on the shelves then why are we all not being treated with it... i would be willing to try anything and the article was written 03/11
Going to ask my onc about it... Also thank you for the hair advice and comments. I did cut it really short.. it is my 16th day after 1st chemo having another thursday this coming week guess it is the actual shock of it actually happening that hit me
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Hello everyone!
Just saying Hi to everyone!!!! Great to hear from Laurajane! Suze - we have been missing you, hope you are too busy with your trip preparation that is why you have not posted. MBJ - Where are you these days? Have missed your posts. Everyone else - hope you all are having a great, peaceful weekend.
BTW, I am having my 6-monthly MRI tomorrow morning, hoping there are no false positives! My head/neck pain is still there. Blueshield sent me a letter saying they are looking at my appeal to approve the MRI. It is taking them forever.
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Sugar - thanks for posting the article....sounds encouraging. Maybe we're getting closer!
Eva - I understand how you feel about the hair. My hair started falling out a few days after my 2nd chemo, when I was already feeling pretty lousy. Of course I knew it was coming, but it was still hard when it actually happened. Between the chemo se's and the hair falling out, it was a bad week for me....the worst of my treatment...and I cried alot. But once it was over, I actually got used to it quickly. I always had crazy curly hair and always wanted it long and straight....so I got a long, straight wig. Figured it was my chance to have the hair of my dreams....lol. I always wore the wig in public, walked around bald at home. Pretty soon I didn't think about the baldness much anymore & focused more on getting thru treatment and getting well. Hang in there, it gets easier.
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annie3310 I m use to being very active, chemo, has stoped me in my tracks..Oh well, something to look forward to when all is said and done. train, train, train...
1candleburning,sorry your back on the blog:) But happy to chat with you.what is you tx plan.?
I read an article in the Mercury News.com about Avastin again..sounds promising. I am o
n Avastin and it is shrinking from 5 down to 3 will know more on tuesday..Happy sunday to all !!!!!!!!!!
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lovelyface,
you can ask for an expedited appeal which should take 72 hours.... if 30 days will be life threatening or interfere with your tx .....I have had to fight with my medical group a lot and my insurance has overturned them.. on a few issues...woohoo for that... but when you fighting cancer, I don't think we should have to fight anything else.....
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I'm here guys, just laying low and trying to be ready for my trip.
I had another week-long stay in the hospital last week, and just wasn't up to posting. I caught the awful Norwalk Virus (Norovirus), the one you hear about tearing through cruise ships, ironically. It is going like wildfire up here, and we think I actually picked it up during my first hospital stay. All three of my kids have now had it, but it looks like my mom and DH will be spared. I don't know 100% this was it, but we had a sample sent to the state, so I'll know for sure in a few days.
I went from mobile and functional at 8:30 AM to needing an ambulance by 11:30 am, unable to walk or even sit up. I was basically incontinent, which was just awful. Everyone was very nice though, and the nurses helped me through a very difficult night of not even being able to get out of bed to go to the bathroom. I can't express how lovely they were in making me not feel embarassed.
Anyway, I kept spiking a fever, which they never found a source for, so I was stuck there for a full 5 days. Fun. The hospitalist had me on so many antibiotics between the two hospitalizations (3 the first visit for pneumonia, one at home, and 3 this visit both oral and IV "just in case" it was C-Diff, which all the nurses said it wasn't based on experience and the 2 initially clear samples), and on top of that, two anti-emetics, morphine, magnesium, potassium, it was just a cascade of medications! I finally said ENOUGH!, and my MO was on the same page. She took me off every antibiotic, which got me off the anti-emetics, and I didn't need the Mag or Potassium anymore either. After getting a scheduled CT scan, I was released.
But, the two hospitalizations really took a toll, and my back pain returned in full force, so I've been dealing with getting that under control - tweaking my pain plan, and going back on the hated steroids (but at a very small dose, to be weaned as soon as possible).
If you've read all this, thank you, lol. Sorry to long-winded, I think I just needed to get it out.
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Good news is I pretty much have that under control again, my energy levels are finally coming back, and I think I will actually be ready for chemo on Monday, and leaving for Florida on Tuesday! I think my strong will has gotten me there, lol, as I was simply NOT missing this trip. Mind over matter!
Another positive note is my CT scan showed my cancer as stable - and my tumor makers have come down even more (from 100 to 72 to 52), my doctor thinks the scans are lagging a little and I probably have a little regression. So we will maintain the Halaven protocol and I don't have me to make any decisions for at least 6-9 weeks. Yay!
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I can read I've missed so many newcomers - welcome everyone, even though I hate that you are all here!
For the not-so-newcomers, thank you all for your continued good thoughts for me. They are cherished.
Laura Jane - such wonderful news on meeting someone new, someone who reinforces what we all know - that you are a beautiful, lovely person, inside and out. He sounds like someone sent from above, and I hope you enjoy every last moment with him. It sounds like you your son have reached a turning point in your relationship, and that is wonderful. You've raised some great people LJ, and that reflects on you. I hope YOU have continued success with the Halaven. Keep us posted on that! What are your scans showing these days?
Tif - Go to NYC!!!!! I can tell you of some great places to eat, stay, visit... Your DH will have a blast! It is one of my favorite places as you know, lol.
bak - I am so frustrated FOR you!! Ugh, I hope you heal up soon and get those rads started. I think you are okay timewise, but it is just so hard knowing you are reaching that last step, and you can't quite get there. Hang in there, I am thinking about you.
I won't be very active over the coming weeks with my trip coming, but I'll poke in here and there to let you know how I'm doing.
Hugs - Have a great Sunday everyone!
Susan
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Susan- Soooooo good to hear from you!!!! Sad to hear about your last week, with all that you went through. Man.... can't a girl catch a break!! And super happy that the Halaven is working! I wish you a great vacation with you family. You deserve it! Hugs xx
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So happy to hear from you Susan! Sorry you have been dealing with more crap. I think you deserve a break!! Sounds like the halaven is doing its job- GO HALAVEN!!
I have a feeling my husband won't be taking me to New York, but I think my 2 best friends will be going with me. If we do, I will defintely need some suggestions from you! Thank you! I hope you have an amazing cruise and feel good the entire trip! We want to see some pictures of you having fun!!
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Susan - sorry you had to go through all of that. Hope you enjoy your trip!
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Suze, so sorry to hear you've been so sick but very glad to hear your up for your next chemo and your trip. Estatic to hear stable/regression with Havalen. Have a fantastic trip you absolutely deserve it.
Tif, you'll have more fun with your girlfriends anyway!! GO! Have fun. You won't regret it.
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