Calling all TNs
Comments
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Well I did it, GI Jane eat your heart out lmao, had DH shave it all off today, not so bad, will be an adjustment but hey this whole ride has been one. Anyhow just wanted to let you all know I bit the bullet
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hi ladies thanks for the welcome .. im on day 4 rads .. still going
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Kymm-Hugs to you and your DH. I remember when We went out on the deck and my DH shaved my head. Most of my hair just blew away in the wind.......But, to give you hope, I just had a real haircut, color and style last week. Stay strong. This will get better.
Welcome to AprilNJ and Angelise and Hello to everyone else.
And to those going to Washington for the Cherry Blossoms..........Have a great time. It sounds like it will be a wonderful get away.
Navy
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Kymm, I know it wasn't easy to have your head shaved. Kudos to you for a good attitude....its only hair, right? And in no time, you'll have hair again! And hopefully having fun with it as I am...short, curly and so easy to maintain! I was a (hi-lighted) blonde, it came in brown and I'm thinking of having it dyed dark red next week!
You sound so strong
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This DX is very frightening and down right scary, but knowing you ladies has made this journey much easier. I think I would have lost my mind if I didn't know you ladies.
Plus most DOCTORS are saying we will be the largest group of surviving TNBC patients, and I am holding on to this.
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Good Morning from snowy Alberta, yes we woke up to more snow having to scrape and brush off our vehicles yet again when will it ever end.
Heidi that is too funny I think I may have my masters in this lol.
April good for you and your doctor, I had two lumpectomies but also am doing chemo being stage 1, chemo is a great choice for us TN sisters its our best defense. I am doing FEC x 3 Dx 3.
Jenn it is so nice to have cancer free days isnt it I just enjoy them so much
Navymom When was your last chemo? I look forward to the day I have to decided what colour to dye my hair lol.
Ruth. thanks for the encourging words, I am trying to enjoy it. It sure was easy this morning getting ready for work. Although I am wearing my wig at work but it is pretty I like it. And hubby loves the GI Jane look
To everyone out there has anyone heard from Michelle67 I havent seen her on in a few days and sent her a couple of PM's but havnet heard anything back. Does anyone know her here and can let us know if she is doing alright?
Hope you all have a great monday just 4 more days till friday lol
Hugs Kymn
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Melissa: So sorry to hear about your awful SE's! I didn't know it was on you if there were any side effects. This is terrible! Hang in there and I hope it can be repaired.
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Welcome April, I'm sorry you have to join, but it's a great place. It sounds like your doctor is on top of things, which is very important for TNs!
Kymn - I'm glad to hear you sound so positive about your hair. I wish my DH had liked the GI Jane look, lol. He used to play with my hair before bed all the time, but not having any nixed that. Now that I have about an inch, he's more comfortable with it. He's a great guy though, so I'll give him a pass on that one.
Heidi - love, love , love your dump instructions. Red wine has become my aid of choice, but I might have to squeeze in some Captain one of these days. I'm going to print out your instructions and tape them to the cover of my iPad!
I had a great vertigo-free day yesterday. DH and I took the boys to the movies. I saw Rango with my youngest. Johnny Depp is just amazing, and the story was a bit existential I thought. DS loved it! Unfortunately, I'm a little vertigo-y again today, I think I spent too much time on my side last night. We just got a new bed on Friday also, so I think I'm having back/leg pain as I adjust. Sigh, hope that's the reason anyway.
So - would you guys push for a PET in my shoes? I'm sure my doctor can convince insurance, and a part of me wants to know if I'm clear. It would change the game plan a bit, I'm sure. But OTOH, would it really? I'd still do a round of chemo, with f/u after that...and ignorance can be bliss...0 -
Melissa - that really stinks, and then to make you cover the SEs? Ugh. My doctor is really making a push for me to get Avastin with my adjuvant chemo, I will keep your experiences in mind should she manage to get it approved...I'm not sure I want it.
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Suze35: I have been wanting to see that Rango movie. I love Johnny Depp.
About your PET scan, if it might change the game plan, and if part of you wants to know, then I would push to have it. My slow chemo brain is trying to figure out what OTOH means.
Heidi: Great advice and Kelben, I think dogs are one of the best distractions. Mine has seen me through the worst of this.
Jenn3: I am glad you had a "cancer free" weekend. I hope you have many more of those!
April: Welcome, I think your doctor is right by treating you aggressively. I am sure many here will agree.
Why do I not know what Captain Morgan is? lol
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Here's the details on the clinical study ladies:
WRAMC 07-20029 A Prospective , Randomized , Single-Blinded, Multi-Center Phase II Trail of the HER2/neu Peptide GP2 + GM-CSF Vaccine versus GM-CSF Alone in HLA-A2+ OR the Modified HER2/neu Peptide AE37 + GM-CSF Vaccine versus GM-CSF alone in HLA-A2-Node-Positive and High Risk Node-Negative Breast Cancer Patients to Prevent Recurrence
I will be recieving the shots from www.sibley.org ONC dept., and hey my doctor is even pictured on the ONC opening page.
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Lynn -
OTOH = on the other hand
Captain Morgan = Rum
So,... OTOH + Captain Morgan =
(Heidi's Math...)
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Fighter: Thanks for sharing that info. Very interesting. I see my onc next month and I should talk to her to see if there are any clinical trials that I could do.
Heidi: Well I do have plenty of rum but not Captain, OTOH-I should have known that. Thanks!
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wonder if we could get a prescription for the captain....hmmmm....lol
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Kymn: Catching up here... saw you'd bit the bullet. I was actually relieved once I bit the bullet and cut off the remaining of what was falling out by literal handfulls. I knew that would mean I was that much closer to the finish line, where I could finally recover. And it's true, this is just one step closer... a step that had to be taken.
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Fighter34 thanks for sharing info. Please keep us up to date as things move along.
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Teka - thanks for the insight. I want to do all I can, and my doctor really seems to think it would help. I do have a family history of stroke and aneurysm though which scares me. Well, I'll cross that bridge if my doctor gets it approved for me.
So I am going to do the PET, next Monday. I was supposed to start chemo that day, but I think I really want to know what my situation is. If the cancer has spread, I don't want to "waste" chemos unnecessarily. Jeez I hate thinking about this. But my doctor pushed the insurance for it, so she must also think it's important.0 -
Overall I glad i took the Avastin...My BC is undetectable with the last ultrasound i had 3 weeks ago...so was it the Avastin or Taxol? I don't think i would have made a different choice to participate in the clinical trial This is the only major side effect that I have had...I go to my oncon tomorrow and have an appt with the ENT tomorrow at 1...I will find out at this point what can be done to fix this...I was suppose to start dd AC tomorrow with Avastin, but my guess is that i will not have chemo and definitely not Avastin...I will only be missing 3 treatments of the Avastin, At least i got the majority...This can show up for a year after treatment...I just keep praying! hope everyone has a wonderful day and night and thanks for listening!!!
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Moe - I was in an Avastin trial, I rec'd placebo. At the time, I was Stage III and in all honesty, I wanted the Avastin in hopes that it would keep me in remission longer. I'm wishing the same for you. Good luck with your appointment and I hope that you feel better soon.
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Hello all you beautiful ladies! This is my second rodeo. This is my 1st time as triple neg. though. I was 1st dx in 2003 with ER/PR+ and HER 2-. In Jan. of this year, I was dx with a second primary in opposite breast: triple neg., mets to bones and lymph nodes. Starting rads in one week to ease the pain and then it's off to the chemo races. Oh joy, I so wanted to do chemo again....lol ! But, it could be worse so I'll take it and grin & bear it.
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I dont see being TN as being bad, as my doc said to me, dont view it as bad or good, it just means you have a different treatment options but on the plus side NO Hormone pills and after 5 years we are considered "safe" while positives can reoccur 20 years later (not my words my onco)
She said being Stage 1 and node negative my chances/survival rtes are the same as a positive, unfortuately though I need chemo to guard against reoccurance, unlike positives who can take a pill at Stage 1 with node negative....oh well it is what is is.....I am POSITIVE, this too shall pass..Keep the Faith..being TN is not so bad........
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I did bilateral mascetomy and doc feels that was aggressive and lessened my risk for reoccurance b/c I am stage 1 and tumor vey small......
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April..I meant to tell you that I liked your avatar! Very sweet!
And hey kllong..welcome to our tn club..and good luck with the chemo rodeo!
Hope everyone has a good week...my DD went back to school today after spring break..we did some wedding things....My DS hasn't come home for awhile..I miss him! My son was a senior in high school when I was diagnosed..my daughter a sophomore in college..now she is getting married and he is transferring to OSU this fall..It has certainly been a whirlwind of activities and changes in our lives...It's not enough to get BC but dealing with the empty nest syndrome...It is hard to take sometimes that they are growing up..and away from me...I don't like it.
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Diagnosed at age 44 in May 2009 Found lump through self exam. Did not show on mammogram due to dense breast tissue. Original tumor was 4.8cm. Participated in neoadjuvant PARP inhibitor trail with Gemzar and Carboplatin chemo (4 rounds of 4 infusions every two weeks) Had bilat MX with tissue expanders post treatment and eventually implants. Had a pathological complete response from trial ( tumor was completely gone). No lymph nodes affected. Chose to do DD Taxol for 4 rounds as extra security.
4 months after finishing DD Taxol found inflamed subclavicular lymph node on same side as original tumor. Had it removed and rt. axillary lymph dissection. 10 of 12 nodes removed were cancerous. Same TN as before. Diagnosed with recurrence. Completed 4 rounds of Adrimycin/Cytoxin and 4 rounds of Taxotere in Jan 2011. Post chemo scan came back clear. Completed 30 days of rads on the 17th of March.
After 12 months of chemo over the last 16, I am cautiously optimistic that I have no evidence of disease. Looking forward to getting my life back and being healthy.
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I also had Avastin (8 rounds! clinical trial), and all four of my grandparents died of stroke. My only SE I could tie definitively to the Avastin was a slightly bloody nose most mornings.
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Hi all, I met with the RO, and the MO today. The RO wants me to get 1 more fill this week and then I meet her again next week to get my CT scan and simulation. I think rads will be starting in about 2 weeks. The MO wants to follow my tumor markers for a few months before deciding if I need more chemo. So...........1 more fill this Thursday, and then start back to work next Monday. I will be trying to keep all of my appts in the afternoons, so that I don't have to miss much. The MO nurse has already givien me a heads up that I will be kept as busy at work, (I am the nuclear medicine tech at our hospital. I will be doing scans on the patients that have not been being done. I only had 2 PRN techs that also had full time jobs, so they worked on Saturdays and did inpatients in the evenings.)
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Beets: You have certainly been through a lot, 12 months of chemo. Seems like that's what works for us as Triple Negatives. Mine didn't show up on my mammogram either. Welcome, I hope you are feeling stronger and healthier.
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I just read through all of your posts and I am too tired to post anything of worth, so I will just say, welcome to the newbies, and for everyone else I hope you are doing well with your treatments.I have 3 days of dr. appointments so I will only be checking in but wishing everyone a great week.
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Hi everyone, i'm still learning about all of this. Appointment on friday to find out if i'm to have chemo. Had lumpectomy and 3 nodes removed a month ago. Grade 3 - 3.1cm. Stage 1. Nodes clear. i'm TN. Worried about what happens next
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