Calling all TNs
Comments
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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
Thankyou all for being here...so glad I found you -
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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Hello mtnbiker.....I've actually just joined this site this Month. As far as my treatment plan, I had a recent PetScan two weeks ago which came back clean.....whew. I can breathe again!
I was bad and didn't finish my Chemo. treatments back in 2008. Only completed two A/C's then chose to have the Port removed and didn't finish. I was supposed to have four A/C's (every two weeks) then onto 12 weeks of Taxol followed by 33 rounds of Rads. I'm happy to say that I finished the Radiation treatments.
Having other Female issues (Bloodwork # came back at "36" - GYN advised it should be "30" or less). So, due to have a Pelvic Ultrasound/Endometrial Biopsy back-to-back on February 6th.
Other than that, just going through the motions in keeping up with my Doctor visits and tests. Truth-be-told, should the Cancer begin to rear it's ugly head again, I sincerely doubt that I'll entertain the thought of Chemo. again, although my Doctor has been having this conversation with me each time we see each other.
I moved to Florida a few months ago and have been completing things (albeit slowly but surely) on my Bucket List. Can't remember when I've had this much fun and "peace of mind" as I've had in these past four months. No fooling!
Finally have the type of Dog I've always wanted (Pembroke Welsh Corgi).....Car I love to drive (Jaguar).....living where I want to live (Florida).....and the icing on the Cake is that I've met a wonderful man who treats me with respect.
I honestly couldn't ask for anything more! Always lived "my life" making everyone else happy.....worrying about everybody else's needs BUT MY OWN! Once I became sick, I saw exactly how much "I mean't", or shall I say, "didn't mean" to several people.
Hence, my attitude is now "me first". And for once in "my life", I call the shots. No more explaining myself and the choices I make. Not to my Doctors nor anyone else. I'm not saying people have to like it, I simply ask that they respect it.
I hope I didn't come across as rude, because that was not my intent. It's just that Cancer has taught me so many lessons. Some good.....some bad.
But I wish all of the Women on this site the very best in their choices about their Health. We all have our own Cross to Bare.
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Heather- I think you're right! The girls will be more fun! My husband is very cheap (frugal in his words). So, it will be nice to take a vacation and not hear how expensive everything is!!
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Suze: So sorry to hear about your recent virus - and all the medications -yuk! But soooo glad to hear you're home and feeling better and resting up for that fab trip.
1Candle - I think we all change and have certain revelations following a cancer diagnosis. I know I am working big-time on my bucket list, cherish a lot of things I once took for granted, and refuse to spend time with people who bring me down.
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1candleburningbright,
WOW. I am so glad you are living for yourself..I must say bc does make you rethink your life. I often wonder about not finishing chemo but honestly, I think Im just talking sh t....LOL
You sound awesome
. I'm so glad for you!!!!I WOW.... happy about your scan......I must say, I told my hubby if chemo didn't fix this the first time, I don't really think It will fix the second.. that's my thoughts . I dont think, I would do again either, ??????.....I was so against chemo, but I did.it.... 4 to go....Love your new Jayuar (what color) , I mentioned a new car to my husband he looked at me like I was crazy, i think i am crazy now ...lol .....I just feel like I need change.. I guess ,I want to be in control...LOL
happy for you and your new love...you go girl...
have an awesome night.........
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tifJ.
I went to New York the week after ,I was diagnosed with bc..I had a trip planned with the girls...It was awesome. We were so busy, I never had time to think.Some trips are better without the husbands....like NEW YORK...
Have a super time. Watch out for the martini's on the roof top in the rain they get very expensive...LOL
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1candle: You ROCK girl! Go for it!
Suze..have fun in Florida..I know you will! I think this is what you need.
And wishing everyone a good week...even though I have BC I still hate Mondays..lol
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Susan,
I'm so sorry you went through all that last week. I am very glad to hear the words stable and regression! The tumor markers decrease is great, too! Glad you are feeling better and I hope you have a great time on your cruise and have fantastic weather.
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Luah: I totally agree with you about ditching the people that bring you down. What's "UP" with that anyway?!?! I'm so glad I moved away from the State I was living in. That in and of itself was a HUGE part of my problem and I didn't do myself or my Health any favors by staying there. Problem resolved.....moved away.....NEXT!!!! As for the "Bucket List", I wish I were smart enough to come to that conclusion long before my Cancer diagnosis came along. But again, just happy that my feet hit the floor this morning and I'm still able to do something about it.
Mtnbiker: As for the Jaguar, it is a "used" one, but mine nonetheless, and it's White with Tan interior. I bought it one month before I left Rhode Island to ensure a comfortable ride with my Dog down to Florida. You couldn't wipe the smile off of my face with a shovel if you had to. Can you say "Happy"?!
And "thank you" for the well wishes with my new beau. I've received more compliments, the most awesome birthday a few weeks back, doors being opened for me, rides to Doctor appointments, etc., from a Man I've only known a few months. I left behind a Man I was with for 14 longggg years who barely knew I existed and once I said the words, "I have Breast Cancer" in 2008, he advised me that I was a "burden" to him and his lifestyle. The relationship went from "bad" to worse".....but I've got the BEST of all World's now. I told my new beau about my Breast Cancer as soon as he made it known that he was interested in me. I thought, he's NEVER going to call me back. Well, he did, and we've been together ever since. No alterior motives.....he's a hard worker.....always looking out for me.....doesn't want me to go without. I have to pinch myself sometimes because I can't believe how lucky I am that he has come into my life. The best part is that I wasn't even looking!
Titan: Thank you for your well wishes also. LIFE IS GOOD! The best to all of you lovely ladies.
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Susan-glad to hear that treatment is working for you! Sorry to hear that you were in the hospital again, glad you were tested for c-diff. They originally thought I had norro virus before I was tested for c-diff and I tested positive. I know what you mean about being on all the antibiotics! I am on 2 right now, one for the infection and one to prevent the c-diff from coming back! I just want off of them! Have a wonderful vacation!!
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Hello Suze35,
I was so sorry to read that you have been having such an awful time in hospital, but glad to know that you are a bit better now. I had no idea that these hospital bugs were a problem in the US. They are an absolute plague here in the UK. We have MRSA, C-difficle, Norovirus (called the vomiting bug) and who knows what else! We have bugs that are becoming resisitant to treatment.
I do hope you will have a great time with your family in Florida.
You are such a strong woman.
Best wishes
Sylvia
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Sylvia - thank you so much for your thoughts and wonderfully kind words. I haven't been keeping up with your thread as much as I'd like too, it is a struggle sometimes to even come here...
Those diseases are starting to hit us hard here in the states also! Bak struggled with both Staph and C-Diff, and I was "lucky" just to have the Norwalk virus. It is scary how these bugs are becoming drug-resistant!
I never really see myself as strong, just doing what I need to do so my kids have as many memories as I can give them. That is my ultimate goal, so I put all of my energy there. I hope it pays off!
Best to you Sylvia. I'll try and pop over to the UK thread and update on my trip as well :-).
And thank you to everyone here for the well wishes! You guys are just awesome!
Susan -
Hello Susan,
Thank you for taking the time to reply. With all that is going on in your life I really appreciated it.
I do hope that you will have a wonderful time with your husband and children and I know that you will all treasure every moment of it. You will be in my thoughts. I look forward to hearing about your adventures.
Take great care of yourself,
Warm wishes to you and to all the great people on this thread.
Sylvia.
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Hi Everyone. Sorry I have not been here for a while.... last week I went into surgery again to revove 3 lumps from my breast muscle. The doctor had been monitoring for about 6 months and finally decided to take it out . Well, it turns out that 2 of the lumps were actually 2 small clamps forgotten inside me from my Open Heart Surgery. And the other lump .. I just got the news it was benign.... I cannot express in words how relieved i am feeling right now... I was panicking because I am approaching the so dreaded 2 year mark next month! Just felt i needed to share the good news before i go to work! Have a great day ladies.... XOXO Monika
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Monika- that's great news!!
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Monika - that is fantastic news! Celebrate in a special way tonight.
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Monica - Whoa! clamps left inside of you? I thought that was only in the movies! So glad you have all of the foreign stuff out :-) What a relief for you.
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Susan:
Can't say much more any better than all of the others already have. But know that you always remain in my thoughts and prayers, and am so hoping you are amassing massive amounts of strength to enjoy this Disney trip. It will be so wondrous for you and the kids. Enjoy, enjoy, enjoy. Never forget how loved you are on this forum, and all the arms encircling you.
Love,
Linda
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