Calling all TNs
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Annie, Phyllis: Congrats on reaching your chemo milestones!
Heather: Congrats on your one-year cancerversary... sorry hubby is having second thoughts; I'm sure you'll get it sorted out.
Kitty: Welcome back.
Inmate: for what it's worth the American Cancer Society describes Stage 4 as spread to distant organs or nodes far from the breast (not internal mammary nodes). In any case, I know you will kicks its ass - love your fighting spirit!
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I don't know if any of you follow Living Beyond Breast Cancer www.lbbc.org. There was a TN medical update teleconference on Tuesday. Frankly I was a little disappointed because it didn't give details on any recent research, mainly talked about what TN is... which we all know of course. However, for the benefit of our newcomers, I thought I'd reiterate what the speaker (Edith Mitchell, oncologist at Thomas Jefferson) said were 4 myths of TN: 1. there is no effective treatment. 2. all TNs relapse 3. TNs are doomed to die. 4. TN means you should have a Mx. All FALSE!
(To clarify point 4, there may be good reasons to consider Mx, but TN status is not one of them, according to medical experts.)
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Thank you Luah, I think we all need to be reminded of those points too.
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Luah - thanks so much. I totally agree with your comment on the Mx. I would remind all newcomers that 1) There is very effective treatments for TN's, chemos are pretty effective 2) Most TN's Don't Relapse 3) Most TN's will live their whole normal lives up to age 90's 4) Actually having a Mx shouldn't be a TN's top dilemma, as my doc explained to me, TN's are more likely to have a distant met then a recurrence in the same area. Newcomers - Do not Fear TN. On another level, honestly, maybe just maybe, havng TN is better than the other types as after 5 years, the recurrence rates get lower and lower. Maybe someone can say this better than I.
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Heather - e-mail him back! This is your life and there is no stupid. Oh and if there really is "stupid" who cares? He has a staff that can help him give you information.
Luah - I agree with Heather, it helps to be reminded.
Inmate - I hope your new chemo is relatively easy to tolerate. How are all of your bulbs? Are they all blooming, bloomed, or to be bloomed?
Phyllis
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Hi All,
I am new to the boards and am hoping to join your thread. I found my tumor by dumb luck after a good friend of mine mother was diagnosed with stage 0. The next morning I grabbed my right breast to look at it and I ended up putting my thumb right on the tumor. My journey started that day and I was officially diagnosed on 11/11/11 but the surgeon told me a few days before that that he was 99.9% sure that I had cancer by just looking at the ultrasound. My family has a history of cysts and I went into the appointment believing that is what the lump was. I was devastated when he told me his opinion. Turns out he was right, and I am triple negative Stage 2A grade 3. Since then I have had a lumpectomy, a port put in and did chemo - 4 rounds AC and 4 Taxol and have just started radiation on Monday - 30 rounds.
A little about me...I am 42, married, have 2 girls and work full time.
It has been an interesting ride so far and I am finally ready to talk to people about it.
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Huskerkkc - I will pm you this week about your rads in Lincoln. I'm still working on my best options for that. I've heard that Kearney may have a good program also.
I moved to NE from Houston, three years ago so I'm less familiar with medical facilities up here. But I'm learning! I chose MD Anderson in Houston for primary treatment because I was familiar with it and my son and other family are there so I have a place to stay.
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Annie, Phyllis: Congrats!
Heather: Big BIg BIG Congrats on your one-year cancerversary... as to your spouse, it has got to be a momentary freak out...we all get scared sometimes. Must be hard to remember one year ago today but look at you know. BEAUTIFUL! Kick your hubby's ass and tell him he will get over it.
Luah...thanks for the great reminder.
Wishn4one...wow, you are one brave woman and you are starting radiation...not nearly as bad as chemo but tiring. I found the drive draining after about session 23. I had 30 also. I had friends take me to the last 5 sessions because I was still working and found myself incredibly tired....the fun thing is you will start to get some soft fuzzy baby hair on your head during rads as your hair grows back and you know things will go back to a new level of normal. I loved talking to the ladies in the waiting room while waiting for rads...we were all so supportive of one another. How old are your daughters? And how are you faring with work? I found I had to take 5 days off after each chemo because I had TC and felt like, well...crappy. But, again, really glad you are writing here. It helps a lot. I found the starting rads in (month) thread very helpful as I got a chance to hear what people ahead of me were experiencing.
Actually ladies it is all of YOU WHO HAVE GOT ME THROUGH THIS. A big THANK YOU to you all and to Ttian for starting this thread.
On a ncie note, I have an opening tonight for work I have in a group show in Providence, RI and my onions and kale are popping up nicely.
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Paintingmywaythru... Thank you for the welcome! My daughters are 7 and 10 and have been great through all of the days of Mommy not feeling good. The days that I was really run down they would lay with me in bed and snuggle while we watched TV so they could get some Mommy time. The younger one has had more issues with dealing with this than the older one. I have tried my best to keep things as normal for them as I can so they are less affected.
Work has been tremendously supportive through all of this. I have been working from home since my lumpectomy and can take whatever time I need for doctor appointments and such. I actually would take my laptop with me to chemo and I would work while I was getting my toxic cocktails. For the days afterward when I was sick I was literally working from my bed with my laptop on a TV tray. I am stubborn and didn't want to take time off and it gave me something to focus on. Yesterday I went into the office for the first time since this journey started and I put in a shortened day then headed to the hospital for rad and just logged back in once I got home to finish up what I needed to do for the day. It was a pretty overwhelming day as I had to give a presentation to the company that is buying mine and I was stressed over my coworkers seeing me again after 4 months. I was so pleased that everyone was supportive and encouraging. I have to say overall it was exhausting! I do not have a planned schedule to ease back into the office as of yet, but I was doing 2 days in the office and 3 at home prior to all of this. Thankfully work isn't rushing me to come back.
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Hello to everyone just would like to share - not a care in the world 0 -
How adorable Bernie!!
Welcome Wishn4one, Wow, can't believe how much you worked during chemo! That's pretty impressive. Glad to hear your almost done. Don't rush back into full time work, take your time and let your body heal. I worked all thru chemo and it wasn't until weeks after my last treatment that the body aches and soreness got really bad! But, it didn't last very long and I'm back to my almost old self again.
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Hello Wishn4one, I worked through chemo but in the end I decided to take time off to rest and it was the best decision I made. We do not realise how tired and stressed we are until we slow down and take stock. thinking of you.
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Love those dogs, Bernie. They look like they love snuggling together.
Welcome, Wishin. Come back often. We are all at different stages of tx and post tx. Lots and Lots of info and support here.
I have 5 doses of Metformin under my belt and no SE's so far!
Beautiful day here in the midwest. I love Spring.
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I wish i could take a nap right now Bernie Ellen...but great pic...the dogs look so peaceful....
Welcome wishin!
Luah..thanks for the 4 "myths"....we need to read this over and over and over and over and over.
Everytime we get freaked out someone needs to knock us in the head.
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BernieEllen - I LOVE that pic
Luah - Thanks so much for posting the 4 myths. It came at a really good time ...have an onc appointment tomorrow and the anxiety is starting to kick in......I think I will re-read your post a few times between now and then...
Wishin - Welcome, you've come to a good place. Wow....I never could have kept up with my usual work schedule during chemo...you must be very strong!
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Bernie Allen-- that looks like me at the moment. Totally spent after a godawful morning getting my neck injections. Only reason I'm still up is because they don't want me to sleep for 6 hours so I can record my pain level. I'm in bed, body is exhausted but mind is full throttle tryiing to get everything in order for tomorrow's early morning departure to CA.
I am so f*cking tired of being side-lined by chronic neck pain. Sorry for the gripe.... my problems are so minor compared to others.
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Heidi, sorry your having so much pain. I know when I had a pinched nerve in my neck, the pain last for weeks into months and it was horrendous! I guess pain meds are out if you have to record the pain level.
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Bernie,
What a relaxing photo! They look like wonderful pups, very cuddly. That baby on the right has a french manicure.
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Hi there Wishin---welcome to our group. I am about your age. Did the same chemo and then Finished my rads (35 of em) about a month ago. Be sure to join the thead for rads starting same time as you. Helpful to have support of those being tx at same time! Wishing you the best thru the rest of your treatments!!
maggie
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Good Morning Ladies
What a lot of posts to reply to.
Luah - thank you for that wonderful information. This is just what we all need. So nice to know its false.
BernieEllen - great photo. I just love babies and all animals. Real sucker for them but they are all so cuddly and wonderful.
Wishin - you have come to a wonderful site. The ladies on here will take your hand and help you every step of the way. You have a great attitude and will fight way beyond endurance for your kiddies. My work is very supportive as well. They set me up at home so that I can still work and I still do full time although I find it a bit of a struggle from the three days after chemo so I just plod my way through on those days and hope for the best. They are very very understanding though and have been just great.
NavyMom - great you have no side effects from the Metformin. Hope this carries on that way for you.
Inmate - how are you doing kicking arse. You can do this. I am just waiting to hear about those wonderful bulbs you have been waiting for. Just don't kick the bulbs they took a long while to grow.
Mccrimmon - Glad to hear you are back to your old self. I just love reading your posts about you and your hubby. They make me giggle for some reason. I bet there is a lot of fun in your household. I say tell him to get over it and move nearer to your family. He has just got cold feet but things will fall into place.
Christine - how are you and your dear girl doing now. Still missing that wonderful lady and will for a time yet. Mum-in-laws are just a second mum and its heartbreaking when something happens to them. Thinking of you every day and sending lots of love.
Have a good day ladies. Sending big hugs to you all. I am off to see my oncologist this afternoon. When I first started I had a lovely oncologist but she has just been made head of department so now I have to have a man. God knows what he will be like. I hope he is on the same wave link as her because she was really into metaplastic triple negative and that made be feel reassured. Oh well, onwards and upwards. Annie
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This was on the news today, hoping the link opens up. I am unable to cut and paste using firefox as my internet explorer, so I will type the link. If it doesn't open up, please cut and paste in your browser, very interesting stuff!
presstv.com/detail/237033.html
Did anyone else see this?
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I am so glad 2 hear some of you are on the metforim and other things...I think I am about to yell at my onc because he doesn't let me be on anything! dang it..I'm pissed Navy is your glucose level high?
oh Heidi..I hope these injections work for you...I have had some neck pain..comes and goes and it really sucks...dont think that this is a small thing and we shouldn't worry about you...pain is pain no matter what the cause..cancer sucks but so does neck pain...ok??.
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Hi girls. Thanks for the welcome wishes back to the forum. I've been just living life, working, traveling. My onco appointment went ok yesterday. My hubby surprised me and showed up for the appointment. I told my onco that I still have a minor burning pain in my right leg and mild headaches. Sooo.... I'm getting an MRI of the brain and of the lower spine. My onco wasn't terribly concerned over it, but she has to always rule out cancer. Yuck!
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I was diagnosed on Friday the 13th of this month. I am triple negative and very scared. 2A, invasive papilloma that didn't show up on mammography, ultrasound or MRI. 3.4 cm Infiltrating lymphatic channels. I am so frightened. I am sixty. My sister was 59 when she passed from metastatic cancer. I need support. I was so hoping for an estrogen/progesterone receptive cancer so I could be treated. Are we left with few options?
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Welcome, Clowngirl. Sorry you have to be here, but you will find a lot of support on this board. Triple negative BC is most definitely NOT a death sentence, and we definitely have treatment options. Most of us have had/are having some combination of surgery, chemotherapy, and radiation. Chemo is the usual treatment for TN, because tamoxifen and the other hormonal treatments won't work for us. But the good news is...TNBC is generally very responsive to chemo. I know how scary this news must be for you....try to take a deep breath.....you can fight this thing! I'm sure others will be along soon with more info and support for you. Sending you hugs....
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Welcome Clowngirl. Good advice from Hope60. Take a breath. Then start gathering information. That being said, be careful when surfing the net. BCO and the triple negative foundation are 2 good places to learn. So many websites are old and do not have current treatment advise and stats. Come here often, ask as many questions as you need or simply just vent. This is a very active thread and there will be someone along quickly that will respond to your post. You are NOT alone.
Titan, my glucose was only slightly elevated. Hgb A1C was 6.0 Should be less than 5.8. My PCP would not normally put me on meds for this, but I went armed with pages of info regarding Metformin and breast cancer. He already knew what I was talking about.(his own sister is a BC patient) Was going to order me 500mg once daily. When I told him the study dose was 850mg twice daily that is what he wrote the script for. He asked me to start with half dosing for several weeks and gradually work up to full dosing. Also gave me an order to have my Hgb A1C rechecked in 3 months.
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Lovelyface - thanks for the link. Interesting stuff. BC is 10 diseases. Yikes. At least they're making some progress on figuring out how to treat the beasts.0
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I meet with my MO next week for my final chemo (yeah). I want to ask her about Metformin. I had gestational diabetes when I was pregnant 15 years ago and my sugars are high now due to the steroids. I wonder if I'd be a good candidate. Thoughts?
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Welcome Clowngirl, Sorry you have to be here but you've definitely come to the right place. Just as Hope and Navymom said you'll find tons of support.
I will say the beginning was the worse time for me, once a treatment plan was in place I started to feel better. I had found this site and the ladies on here pretty much walked me thru treatment. Not sure how I could have gotten thru this without them. I'll second Navymom's advice. BEWARE of the internet. I over googled myself into complete anxiety attacks almost daily in the beginning. Now I pretty much stick to this site only or TNBC Foundation.
Take one day at a time and you will get thru this!!
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