Calling all TNs
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Hope this link works. It's a hoot!
Merry Christmas!
http://www.facebook.com/#!/video/video.php?v=10150132868629152&comments
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Heidi Too - Thanks for sharing the link.....that was so funny - havent laughed like that in awhile!0
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alamik, I got my diagnosis right after new years last year... and the roller coaster began. I had a very fast growing tumor, it was 9.5cm when they started me on neoadjuvant! Cripes! I totally recognize, as everyone else here does, that everyone is different -- but I also agree with others to get a second opinion about neoadjuvant treatment now that you know that it's triple negative. Of course, as you know, surgeons can get scopelocked on surgery -- I left my first (diagnosing) surgeon because I felt she was rushing me into a double radical mastectomy and switched facilities entirely. Then, I was fortunate that my new breast cancer surgery specialist, after found out that I had TN, she stepped back and really wanted my oncologist to take the lead. I was lucky and got in somewhere where surgery, oncology, radiation are all under one roof so they cooperate and collaborate. I ended up with a total pathological response and lumpectomy, no node involvement. Thank the lord. (and I do, every day now!)
Second opinions are so good. Even if to confirm the first or your intuition but you know that -- we're all just here to help support you, tell crazy stories, make you laugh when you need, give you practical feedback. I was told to stay off the internet by the first oncologist I went to (I left her too...) - which I think is pretty good advice, but these boards got me through and kept me sane throughout chemotherapy and the rest. I joined a chemo board that started the month I did -- and peeked at boards in the previous months, just to get a sense of what others were going through.
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Swiftbird- did you know your nodes were negative *before* starting chemo? Your signature says 0/0 nodes which tells me they didn't remove any?
I've always wondered about nodal status when neoadjuvent is used because any pathology report after chemo has begun could be negative as a result of chemo clearing out the nodes.
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Thanks loads TifJ .. I'm heading for CVS now - just as the ulcer is kicking up.
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I just wanted to pop in and say Happy Holidays...........
For those of you in the funk over the weight thing, now isn't the time to beat yourself up. Eat what you can tolerate and what taste good and worry about the weight later. I started out eating really healthy, organic, etc - by the time I was one month into treatment instant mashed potatoes, homemade chicken noodle soup, sprite, room temp lemon water, and I loved getting fried shrimp and oysters the day of treatment (when I didn't have mouth sores). My onc used to say what is important is that you are eating. I just passed the one year anniversary of my last chemo and in all honesty am just starting to feel more and more like my old self. Chemo is hard on your body and you need to recover physcially and emotionally.
slcst - glad to know you're home and doing well. Take care, although I know it's hard with young children and at this time of year (((hugs)))
moe - glad you're home and doing well, sorry you had such a terrible reaction to chemo.
alamik - Wow!!! How frustrating to be a nurse, know they are giving you the run around and not getting the answers you need or want. I ditto what the others said - another opinion may be in order, or at least another onc that is more sensitive towards you.
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Heidi, thanks for the laugh! "Allen! Allen! Al! Allen!" I'm still giggling.
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Thank you all for the great advice! This Monday, my husband and I are going into the surgeons office with our list of questions. Since I didn't get the triple neg diagnosis until a few days ago, maybe thats why he didn't offer chemo first. Not too sure at this point. My cancer support specialist agrees that we need a second opinion. I actually asked for a bilateral mastectomy but was told that I didn't need it. I still believe it's the way to go for me. Although I have been quite dissapointed with the staff in my surgeons office... I have met so many wonderful women recently who have given me support. I am meeting with an oncologist this coming week as well. I have an MRI, blood tests, and x-rays scheduled for Tuesday. I would feel better if my treatment plan was being handled with my oncologist at this point, regardless of what the surgeon says. He's already a little miffed at me anyway. I don't think he gets my sometimes irreverent sense of humor. haha!! Thanks again to you all for the awesome words!! Hope you all have a very Merry Christmas!!
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Hi everyone - just wanted to stop in to say Merry Christmas to those of you who celebrate. Not much snow here in Toronto but there's a bit of the white stuff on the ground...it'll have to do. A year ago I was bald and in the midst of chemo. I had my wig on in all the family photos. I thought of that tonight at my in-laws when we did our annual group photo. This year is already so much better but hang in there those of you who are going through treatment right now...before you know it you'll be on the road to recovery.
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Hi Alamik: I agree with the others: Neojuvent chemo is the way to go! I had a complete response, though I still had a bit left inside me, it was 100% dead. Find a team that will answer your questions and work with you! Get 3 opinions, too.
Sugar: I was going through chemo this time last year, too. It's kind of surreal now to think about.
Merry Christmas everyone!!!!
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Hope everyone is having a joyous Holiday Season! Merry Christmas to those celebrating today. Here's to a much better 2011 for us all!!
Tiffany
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Merry Christmas Every One! Watching the Christmas story for the 100th time..plus Home Alone, plus the Grinch...oh..and talking to you guys..can't go a day without doing that.
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Hope all are enjoying their Christmas. I am waiting until tomorrow to go to my daughters, and a visit with my doggie friends. I found another lump, actually another 2 lumps, one in each breast. I have mammo. booked for the 4th and will have an appointment with my BS after that. Please keep your fingers crossed for me.
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kelben - I will keep my fingers crossed for you! Enjoy your visit with you doggie friends. My dog is being boarded right now because we are going on a trip tomorrow morning and we really, really missed him today. He was wagging his tail when my DH and DD dropped him off yesterday so that made me feel better. Let us know how it goes on the 4th. Take care.
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HeidiToo, that node question is a good one -- I never quite figured out how one notes their status about nodes -- is that ones they took out or came back positive/negative? Anyway, my answer is they saw nothing (MRI, PET, etc) before I started chemo in my nodes; and when I had surgery, they did SNB on 5 and all came back negative. I can totally understand why some would just want surgery over and done with, and to get the tumor out, but in my situation, the Mayo clinic folks recommended chemo first and it worked out extremely well -- and the nice thing is that you can see the effect of chemo prior to surgery, and with such a good response, that in turn told my onc and myself valuable information. I'm glad I did it.
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kelben: hope the lumps are nothing. Let us know and try to enjoy the holidays.
Had a good day today. Went to my cousins house about 2 hours away for Xmas dinner. Was nice to see family. Tomorrow I think I will go spend a couple of hours at the casino. Not much to do around here (except clean and who wants to do that). I am dog sitting for 10 days for my niece while she is in sunny AZ. The dogs are good company but they don't carry on a great conversation.
Merry Xmas and Happy New Year to ALL!
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swiftbird- In your signature line it should then read 0/5. That would mean they removed 5 nodes and 0 were found to have cancer in them.
kelben - man, that s*cks. Keeping my fingers crossed for you.
Hoping for snow tomorrow so I can get my sleigh out.
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>Moe, I was in the ER for a reaction to Taxol as well, hives, hard to breathe, fever etc. Last week after my first infusion of Abraxane, I got my shot of Neulasta and had a whole new, equally distrubing reaction of skin blisters and rashes and PAIN in hands. I take Claritan, Benadryl, Singular, Oxycodone, Ibuprofin etc. for all of this but right now my hands are tied up in ace bandages tingling from pain that we think is from the neulasta on Wednesday. Upshot, delayed chemo one week to avoid another neulasta shot, I definitely tolerated and enjoy the short infusion of Abraxane also. Two to go. I am trying to squeeze in ski week after lumpectomy and another trip after chemo. Can someone give me the full drill on a normal lumpetomy with sentinal node removal? Recuperation times, the drain, etc? Thanks!
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Kelben: That is really not what one wants to hear during the holidays. Hoping everything comes back showing a clean bill of health. Please keep us informed as to what is going on with you and we are all going to be sending good thoughts your way. Hugs.
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MERRY CHRISTMAS and HAPPY HOLIDAYS!!
I hope everyone is doing well, and I am looking forward to a better, healthier New Year for all of us
Kelben - thinking of you and keeping my fingers crossed that those lumps are benign!
Heidi-Too - 4 of my nodes were swollen and biopsied and came back positive, so it is possible I have more. My last MRI (before I started Carbo/Taxol) still showed 4 nodes, but indicated that they were down by "considerably more" than 50%, so I'm hoping that they all come back negative at surgery lol.
alamik - welcome, and I am so sorry you are here. I also recommend the neo-adjuvant therapy. I started on the "traditional" DD AC followed by DD Taxol, but my doctor wasn't happy with the 50% response to AC so she added Carboplatin to my Taxol and spread it over 12 weeks. I am thrilled to say that in 4 weeks, that combo has knocked out my palpable tumor (I had 2, one wasn't palpable), and with 8 weeks to go, things look good. This is the benefit of neo-adjuvant - it can be adjusted as you go along to get the best response, which is so critical for us TN's.
Titan - I adore my oncologist - she is just wonderful. She doesn't sugar coat things, but she is still very hopeful, I always walk away feeling like I will be just fine. And she is so open to listening to her patients. I'm very lucky.
I am hunkering down for the coming blizzard (we are expecting 17-24 inches of snow here in NE Mass), so if I don't get on again soon, everyone have a wonderful week!
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Suze: You sound so upbeat and positive! Glad chemo is working and that you found yourself a great Onc.
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Passing through to say Happy Holidays to all! Kelben sending up prayers for you and your family stay strong it's nothing until otherwise told. *smiles*
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Kelben - many times the lumps are benign, and I am hoping yours are also benign. I am definitely keeping my fingers crossed for you.
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I notice that many of us TN's are not positive for nodes, at least under this "Calling all TNS" subject. I read everyone's diagnosis and mostly we are 0/.... nodes, meaning node negative. Does anyone know whether TN's are mostly diagnosed with negative nodes? Or are there many positive nodes among the TN's as well? Is there any statistics out there?
Someone I have heard of, is currently in really bad shape. Kaiser has stopped all her treatments, however, her daughter who is soon to become a doctor herself, has enrolled her mother in a clinical trial at UCSF. I have heard that the mother is a TN, had her first set of chemo, then it reoccured, she went through chemo again, and now it has shown its ugly face a third time, this time very aggressively metastasized. I heard that the cancer is now showing outside on her body in many places. I had no idea that things could turn so badly. The family is still keeping hope with this clinical trial at UCSF.
Does anyone have any pointers or any knowledge which I can pass onto the grieving family. I had heard just this past summer that the lady was doing very well, she had all her hair back and she was looking as pretty as an actress. She was to be NED 3 years this December, when the ugly disease returned.
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Lovelyface - I had 4 positive nodes with my TN status.
Kelben (((hugs)))
I just wanted to pop in to say Happy Holidays - Merry Christmas. I had just finished chemo right before Christmas last year. I felt so good this year - so much more energy and didn't get tired at our big Christmas Eve party (that the in-laws throw). What a difference a year makes!
Hope everyone is having a great weekend.
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lovelyface- well, that is a sad story to read during this holiday season (or any other time, for that matter). As for nodes, TNBC doesn't really care if you are node positive or node negative. You can still go Stage 4 with negative nodes.
Nonetheless, I'd still want negative nodes. My husband likens it to being in a car wreck--- wouldn't you want your seatbelt on? Your still in a wreck, but if your nodes are clear you stand a better chance of coming out unscathed.That's *my* statistic.
No pointers here; everyone handles this in a different way. Her situation is just another sad example of the deadly and unpredictable nature of this disease.Very sad.
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It does seem a lot of women have no nodal involvement at first, particularly with the metaplastic subset. I, however, had one to begin, then 13 at recurrence or metastasis, (semantics). Giant eye roll,since I can't get a direct answer from my oncologist. My path report calls it both. This last time I had Xeloda before surgery, then radiation after.
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If you are taking or took a multivitamin during chemo...what kind did you take?
How soon did you make it into the office after your chemo treatments?
Thanks!
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mommafluff - I did not take a multivitamin during chemo but was told I could take one. However, I was told to stay away from supplements, particularly antioxidants.
I worked every day during chemo with the exception of the infusion day which was always an all day affair for me. For the first week after chemo, I sometimes worked a few hours less than normal, but for the most part I was immediately back to full time. I had one bad day each treatment that kept me asleep the whole day. It fell on saturday every time, so it never impacted work.
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mommafluff - I did not take a multivitamin during chemo but was told I could take one. However, I was told to stay away from supplements, particularly antioxidants.
I worked every day during chemo with the exception of the infusion day which was always an all day affair for me. For the first week after chemo, I sometimes worked a few hours less than normal, but for the most part I was immediately back to full time. I had one bad day each treatment that kept me asleep the whole day. It fell on saturday every time, so it never impacted work.
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