Calling all TNs
Comments
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I too have done the questions to John Hopkins. They are very responsive, sometimes within hours, and they have always given me pretty clear and concise answers, and it's always been very helpful.
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Placid44 - thanks!
Debra - did you just send me a message or is there literally a private chat on here? I'm about to leave work so I can't do an IM but I will log back in when I get home.
Thank you both for your suggestions! I can't tell you how much I appreciate it!0 -
It was a little longer than I thought, my message. LOL - I just hit the PM button.
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Hi ladies! Thank you for the warm welcome! For an update, I thought I was going to be done with radiation tomorrow but was just told today my RO added five more. I also saw my MO today and I will be starting Ixempra with Xeloda on April 1st. Would love to wake up that morning and be told this is all an April fools joke but alas I must fight on. Hope everyone is doing well! Deyla
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Hello, Lady Miz,
Although the enlarged cervical nodes warrant concern, I am really bothered by your neurological symptoms (headache, dizziness, and nausea). I have been through all that at one time or another with MS, so know that it is very disturbing for you to be suffering with. NO - I am not suggesting MS - it's just that during the course of my disease, these types of symptoms are all considered seriously. Seems like a brain MRI would be in order, especially since it is not invasive. There are many things, besides brain mets, that could cause headaches and dizziness, and subsequently balance problems. Many benign causes, such as vascular. With all that we've been through, it's no wonder our brains get a little frazzled!
You saw an ENT - did they rule out inner ear disturbance? Believe me...that causes major dizziness and nausea. Vision problems can also cause them - especially "eye migraines".
Push your doc for more tests and answers. Stay strong -we're all here for you.
Take care ~ Shar (aka Dizzy Dame/Grandma Wobbles)
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ok ladies...4 years out tomorrow....it feels good...haven't had any scans or anything but I feel fine...the past 4 years have been good...have never felt sick except for se's from chemo and that was over a long time ago....saw my son graduate from high school and is now a senior at Ohio State...my daughter graduated and has a job in her field and has been married...my husband and I are trying to find out what life is like without the kids which has been a challenge but that is normall
just wanted to say that there is life after bc....and it can be good....yes..I still see the onc and bs and it freaks me out but it is what it is.
Love all of you from the past and the present...could not have done without you all.
so...anyojne got some good picks for me for the March Madness b-ball tournament...could use some help
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Four years - already!!!! Yeah!!!
Funnily enough I was thinking of you when the brackets were announced. (I'm sure I said way back, DH is a Purdue alum and so we watch a lot of basketball this time of year to see how the big ten teams are doing.)
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Loved your post, Titan. Bravo to you!
No help with march madness....but good luck if ya money on it!
I am feeling lucky at the moment. DH and I decided that we would start playing our state Lotto. 2 weeks ago he got 3 numbers and won 3 bucks. Last night I got 4 numbers and won $29. Yippee! Not a bad return for $1 ticket. We have teased each other about buying a house on the beach if we ever won....which sounds pretty good right now. Damn cold here in the midwest and more snow coming on the weekend.
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Congrats Titan and here's to many, many more years!!
My pick- Kansas! I am a 1988 graduate! Unfortunately, they tend to choke first round against some obscure college! But I say not this year- KU all the way!
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tijk...I have Kansas until the elite 8 and having Miami beating them..
Gilly...the Big 10 is a meat grinder....i am biased with the Big 10 but if Purdue would have played in any other conference they would have been in the Big Dance
Of course..I have my beloved Buckeye's winning it alll...but I'm going to do another bracket...went with my heart on the first one
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Congrats Titan! I'm a huge sports fan especially basketball, football, and baseball! I have Louisville taking it all they're going into the tourney hot! Good luck!
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Dra..agree that l-ville has a great team and great coach in Pitino...but just hanging on the thought of the Big 10 coming out on top this year..alot of great teams in this league...it is going to be a great tournament...will see how good the big 10 teams really are,,,,I'm so excited for this time of year...had my surgery during this time so got to watch lots of b-ball whiile I was laying around... I was up watching the Buckeye's play until 2 am i4 years ago the day of my surgery and still couldn't go to sleep...lol
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First thing's first...
Titan, that's AWESOME!!! Congratulations! I hope to be saying the same thing 2 1/2 years from now! You have a blast and keep us updated on the fun and good ju-ju!
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Shar - thanks for the thoughts. Yes, they ruled out everything ear, nose, throat and upper/lower respiratory...no dice. I'm going to push for an MRI if they don't want to biopsy yet. I think that's a fair compromise. I'm irritated by the neuro stuff too - mostly the inability to speak & function in the manner that I was able to just a few months ago & the fact that I can be typing and think I'm reading what I type properly, only to then go back and see its complete gibberish. It's the strangest thing! It's like chemo brain, only exponentially magnified & accompanied by dizziness & nausea at a moments notice.
Thank you ladies again for all of your thoughts and feedback. I actually feel bad whining about this! Sometimes, I guess I just need to hear the words (read, actually) of those who get it! Much love and only happy thoughts to all of you!0 -
...& Shar, I just read your bio info and we were almost diagnosed, operated on and treated at the exact same time!
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Hi everyone just an update im 25 and was diagnosed at the end of January with breast cancer then had a right masectomy on valentines day ... After surgery found out I have stage 2a no lymph nodes involved but triple negative ... Met with oncologist last week and will be starting chemo. I will be given FEC for 3 treatments then DOX for three treatments .. Just was wondering if anyone else was on anything like this for treatment..
Any responses would be great
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Hi TasiaB..I'm 27 and was diagnosed end jan 23rd...I had a bilateral mastectomy with no lymph nodes involved and I'm also triple negative....I don't know much about the different types of chemo, but I start mine on the 25th and I'm doing 4 cycles of A/c and 4 cycles of Taxol....I'm not sure why you would hat any diffrent than most of us ladies but I'm also not a doctor..so I'm sure he/she has a good reason for giving you what they're giving you... Sorry I can't be much hep to u except support since we're both going though this so young!
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That's what I was wondering like I do know my mother has the braca 1 mutated gene but other then that I have no clue why I'm on this treatment .. I'm seeing a lot of people with the same treatment you are on .. I guess I will have to ask on Thursday when I go for my first treatment.
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I also curious why they didn't recommend you to do a bilateral mastectomy instead of just your left if the gene is on your family... I tested negative for the gene, but I was told by my breast doctor that if I was to test positive for it (which i eas negative) we would have to also discuss removing my ovaries since I would be at high risk for cervical cancer also...I don't want to scare you, and your treatment is completely up to you...I was in no way pushed to do the surgery...it as my decision in the end, but the doctors recommendation was important to me...was it the doctors recommendation that you only have your left removed? Or did you choose to go that path?
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Well the thing was I just found out about my moms genetic thing ... And know knowing this my oncologist has already sent out urgent genetic testing for me to see if I have the gene and if I do he wants to talk about removing my left breast .. So once the testing and chemo is done we will talk about other surgery ..
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Ohh ok ok..good good! Well I hope you test negative for it! It's a scary thing for sure! I was a wreck waiting for the results to come back! Keep me updated if Can and stay positive :-)
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Titan hip hip hooray. You made it to four years. Congratulations girl. I bet you will be around for the next forty years or so. So go party and have a ball. Luv yer. Annie
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Titan...Many congratulations to you! I love your spirit and of course all your advice! I'm glad that you have remained on these boards to help us newbies through this! Thank you! And party hearty!! Whoo hoo!
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Michelle ~ you're right -we could have sung duets during that year!
Take good care of yourself, bosum buddy ~ Shar
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Titan ~ You go, Girl!!!
but about Ohio State...ahem, I'm originally from Michigan...so you know how that goes...
Luv ~ belated Whoo Hoo!!!
Think Spring! ~ Shar
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TasiaB, hi, diagnosed in jan. also. Are you in Canada or Australia by any chance? I'm in Canada and FEC D is pretty common from what I've read-that is what I'm on. Wishing you minimal SE, I have found the FEC part very doable. I start next segment next wed so can't comment yet. Make sure you hydrate before during and after and keep smiling!
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Titan, Way to go. So happy for you.
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Congratulations, Titan! Wishing you many more years!!!
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Tasia, welcome. FEC-D is considered equivalent to AC-T (though the E is easier on your heart than the A) and is commonly used in regions other than the U.S. Your treatment plans sounds pretty typical, imo. Good luck with it.
Titan: Big congrats on your 4 years -- and all the life milestones you have experienced!! I can't believe how the time slips by - seems like yesterday that you were starting up this thread, which is now the only one I regularly visit.
LadyMiz: I'm with navymom. If you're not getting action fast enough from your onc, pop in on your PCP. When I had pain in my back, mine ordered up a bone scan right away. You deserve to have an explanation for your symptoms, it's just too worrisome to be waiting so long. Hugs to you.
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Slv58 thank you for the response and the heads up on fec I Amin Saskatchewan .
Luah thanks for the response didnt know it was common.0 -
Thanks Luah!
I have my question in to Johns-Hopkins and have my scans and reports with another MO for a second opinion and evaluation. I will keep y'all posted on this latest little adventure. Cancer - the gift that keeps on giving!
xoxo...
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