Calling all TNs
Comments
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HeidiToo: Great story!!
I am O-
My onc said since my surgery was 1/14/2010 and I finished chemo 5/20/2010, we'll use March as my anniversary date. So I am 1 year and 9 mos out!!!
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I am starting my date from day of dx, cause that is when I learned of this beast and every year on that day is another year I am a survivor. So I am 9 months out!
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Ok I am confused, I really dont study this whole cancer thing and really dont ask questions. So you can only do a type of chemo med one time in your life? Even though it worked great the first time? Maybe I should start studying more....
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If you guys are bored and want to play with your phones text 9304 for Josh Krajcik on the x-factor..he is from my home town!
Karen..from what I have heard there is a lifetime limit on certain chemo drugs...I know that I have not reached that limit at this time with 4 ac and 4 taxol (I asked the nurses)...I had a friend who had ovarian cancer and she had at least 100 taxol treatments over her time with cancer...she told me this when I was freaking out about having taxol so you probably shouldn't worry too much about more chemo..if you would need to have it again..and hopefully that is not even in the equation.
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I sure hope not! thanks for the info though
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Olive - so sorry you are looking at more chemo. I don't know what you will get next but there are many options.
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Having a touch of insomnia tonight...
Olive - I'm sorry to hear about the additional node that lit up. I can't say for sure what chemo would be next, but many TNs do very well on platin-based drugs, i.e. Carboplatin or Cisplatin, paired with Gemzar. Xeloda is another drug that is well-tolerated, but maybe not quite as effective. I hope you come up with an action plan soon!
Titan - I actually just asked my MO about my limit of Adriamycin because it is one drug that did elicit a response from my cancer. She said I still have about 10 more treatments before I hit my limit... it is something we'd consider last ditch, maybe just to get me a little more time if my QOL was okay on a reduced dose. Basically, I could probably do 4-6 months on a reduced dose down the road. We'll see.
ksmatthews - some drugs have a limit due to cardio-toxicity, such as Adriamyacin. For Stage IV, most of the chemos can be used long-term, generally only being stopped when they no longer work,or the SEs become unmanageable, such as neuropathy. I know someone who has been on Abraxane (Taxol) for almost 2 years!
Heidi - funny stuff! I'll have to ask my DH if he'd go the distance for me lolol.
christina - I've definitely noticed the Eribulin being a bit harder on me, especially day 2-3. But it is still very manageable. I asked my MO what her longest run on this drug was for Stage IV, and she said it is so new (less than a year old) and typically used as "salvage" that she can't give me good numbers. Just that "they" are very excited about it and are pushing for earlier use. I really hope the clinical trial does the job for you! It sounds like a promising drug.
painting - its a date
. I'm thinking The Melting Pot for a great lunch/early dinner. Yum.
Okay, took my Morphine and Ativan, let's see if I can get some sleep!0 -
mccrimmon - congrats on finishing treatment. I know what you mean by the constant concern - If I have pain anywhere, I start thinking about mets....Although I am not looking forward to starting oral chemo next month as part of a research study, I am glad that I will be closely monitored for two years. It seems so strange for me to say that, as I used to stay away from med offices as much as I possibly could - now they are a security blanket!
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Anandagram - are you doing the Xeloda study or the CMF/Avastin study at Dana Farber? I did Xeloda for 3 rounds (outside of a study) and can tell you that I tolerated it very well. The biggest concerns are hand/foot issues and fatigue. I'm happy to share any tips/info for you if you'd like. I think it's great you are doing a study, I'm a big proponent of them
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Susan0 -
Susan thanks for the info. I really should study more about cancer and treatments, but I just hate to let it consume me. I have 3 kids and I just would rather spend the time with them. And when I do to the dr my mind goes blank. I usually take a list of questions, but they are only what I think of a few days before visits.
I hope you are doing well.
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GuyGirl- Great news!!! Olive-I am sorry that you will be facing more chemo, but as know it is very doable and if you need to b^tch and scream we are here. Sending strong positive vibes your way.
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Always a good laugh:
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Ok, today is my 6 month checkup with my oncologist. On Tuesday I felt a lump above my right breast (original cancer location). I was NED after my BMX on 1/8/11 and then had radiation. I'm trying to tell myself that it's nothing, but I am thankful that I already had this appointment schedule. Life has been going so wonderfully. This is the first time that I've had a scare since finishing treatments. All I can think of is that it CAN'T be cancer again. My daughter is going to Italy to study abroad for a semester beginning in January and this can't happen to her! This morning my stomach is in knots and I'm praying that it's nothing. Just had to share because I know you all understand the fear.
Kathy
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Good one Heidi!!!
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Good Luck today Ksteve.
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Praying for you Ksteve. It could be scar tissue.
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Sending good thoughts Ksteve!
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Ksteve- Keeping my fingers crossed for scar tissue! Good luck today.0
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Thanks everyone! You guys are awesome. Leaving work now, going to lunch with my 21-year old DD (who doesn't know my concerns) and then going to the appointment at 2:15 p.m. with my DH (who's freaking out a bit right now too!). I will channel all of your positive thoughts! I'm hoping for scar tissue too. Had my nipple reconstruction last Tuesday, so maybe my breasts aren't very happy with me right now! Again, thanks for the kind thoughts. I'll let you know what my ONC says when I get home!
Kathy
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Thank you all for the great positive thoughts. I wish everyone here a happy holidays.
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Kathy - thinking of you and hoping all went well with your appointment! Fingers crossed it is just something simple related to your recent surgery...
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I have a question.... Are you still triple negative even after you have had your breasts removed , had chemo etc...can another cancer come back and not be TN ?
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tracie: Anything is possible: recurrence of the same TN, a new primary that's TN, a new BC that's something else... or, as in the majority of cases - NED.
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Kathy...hoping your appointment went well and all is OK. Hugs!!!
And on another note...ARGHHH...we were supposed to get our commitment letter today from the buyer of our house but she was slow with her insurance binder so it is postponed until Tuesday...still supposed to close on the 28th
Susan....Melting Pot...I don't know it but would love to go...
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Well, I think all of your positive thoughts and prayers worked . . . my ONC thinks the lump is the top of the implant. He was very confident it wasn't a problem. He doesn't need to see me back for another 6 months! That side does continue to change and tighten due to the rads, but it's strange that it wasn't there one day and appeared the next. I check my upper body every morning while soaping up in the shower. I trust my ONC completely, but I will feel better when I confirm with my PS when I go in to get stitches out of the new nipples on Tuesday.
This was my first glimpse of what my future holds . . . every new ache, pain, lump or bump makes you sick to your stomach! Time for a deep breath and I will sleep good tonight! Thanks again to all of you wonderful ladies that are always there to support, no questions asked. Happy Holidays everyone!
Kathy
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I want to ask your guys opinions: I'm going thought this for the 3rd time in 15 months. Time1: triple negative, breast recurrence: HER2 positive, brain nets: triple negative.
What do I call myself? Triple negative? Melting pot (and not a good one like the restaurant!) HER2+?
I know overall it really doesn't matter, but I just like to be consistent!0 -
Ksteve..thinking of you lady! I hope that lumpy thing was just FAT!
About the lifetime limit of AC...after my 4th treatment I asked if that was my limit and the nurse said no...I guess that is a good thing..if I ever need it again. I may be a weird one but for me..the AC wasn't that bad...took the emend..never felt sick...maybe felt a little high..couldn't sleep very well...a little metal mouth...the neulasta shot was what bothered me the most ( and I know..I know..I keep whining about it..but I still think about that damn thing..I just hated it)... taxol bothered me the most..I didn't have the "high" or the metal mouth or nausea but my body just hurt...if I sat for too long I would have to work out the aches and pains..walk around like an 80 year old woman..my bones just literally ached and ached...
Ah well..chemo sucks but being tn we gotta do it...sometimes I feel that the chemo time was all a dream..(or nightmare)...and that the whole entire BC thing was a nightmare...but then something will jolt me back into reality...
My onc said that with some cancers..like colon..once it is gone after a certain amount of time..it will not come back...He said that he couldn't promise me anything with breast cancer..I sure wish we could say that we are cured after a certain amount of time..dang it.
Guess we will all be hanging here together forever...and that's ok...
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Kathy, great news!!!
Melting Pot, think we had one up near Philadelphia but never got a chance to go, none down here in florida that I know of. I've heard they are excellant.
Hope everyone has a great weekend.
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Suze, I'm sorry you are having trouble sleeping. That makes everything harder.
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mccrimmon324 - I went to Melting Pot in Orlando (Sand Lake Road) when on vacation a few years ago and another time in St. Petersburg, for New Year's Eve. Not sure how far you are from Orlando or Tampa area but there could very well be one near you. It's definately worth going.
Hello to everyone....hope you all have a great day!
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