Calling all TNs
Comments
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Got my port out today, and I was so scared! Anyways I guess it went good, numbness is now wearing off and the pain is setting in. Cant believe after all this year has been, it is over. I am ready for 2012 with no BC.
Hopefully all of us have a better year nxt year.
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ksmathews - Congrats on getting your port out! That was such a happy day for me. The pain doesn't stick around too long and it was so nice to not feel it under my skin. Yay for you . . . Kathy
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Path report is back and my SNB showed negative and margins are clear! The tumor had grown 0.2 more in the last 3 weeks and ended up being 1.8 cm after only a few months (it was under 1 cm the first month I found it). I am still sore and bruised from surgery and having some stitches removed yesterday which pulled off some skin. The BS is worried that I might have a bleeding disorder as I warned him that I always bruise a lot after surgery. Both him and his nurse went "whoa" when they saw my black/blue chest/abdomen yesterday. Anyway, I had my sister cut off my long hair yesterday and am sending it to have a hairpiece made to get ready for chemo. I see my onc on Jan 9. I am not in a very festive mood either and haven't done anything about xmas. I hope sleeping gets better as I am very tired and not sleeping well at night. I went back to work for a few hours every morning which is tiring but a good distraction.
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Tina yeah for negative nodes and clear margins!
Good luck starting chemo!
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My middle name is Ann too...my initials were JAM b-4 I got married..now they are JAW...
Cat..Tina...my tumor was 1.8 cm also...keeps you in stage 1...freaky how fast the tumors grow doesn't it...
I really wish there could be some study that finds out exactly how fast TN tumors grow. We know they grow fast..gues they really don't need a study..we know it already.
I got an e-mail today about a new vaccine that has proven to reduce tumors in mice for tn's...the only issue is..it probably won't be available for trial until late 2013...gah...that is way too late..we tn's need this now.
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I am counting from the day I had my PET scan and was found to be all clear. My blood type is O+.
Rads #10 of 30 done. So far, so good.
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Blood type A positive. Middle name Ann. Also known for being Scrooge for holidays.
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Yay, Tina! That is great news that you have no positive nodes and clear margins!!
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I didn't feel much like celebrating Christmas last year, either. I had my last surgery Dec. 14 (prophy RMX after rads), and just really didn't care. My father died in Autumn '03 and I lost interest in Christmas for several years then, too, so it doesn't seem odd to me that others would react the same way.
Titan, my tumor went from marble-sized to 4.5 cm in a month, and six mos of chemo only knocked it back to 1.1 cm. That little sucker meant business! Unfortunately for it, so did I. There's another grading scale (can't remember the name) that breaks Grade 1 into 1-2-3, Grade 2 into 4-5-6, and Grade 3 into 7-8-9, and mine pegged out at 9. I don't think I'm ever going to not be afraid of this disease.
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Riley - that's called the Nottingham Scale and my tumor also pegged out at 9. My Ki67 was 90% so I had a screamer, too! Another couple of weeks and I would have been Stage IV. That's why I went with the BMX first, a decision supported by my MO. I wanted that beast out of me ASAP and I wasn't comfortable with neoadjuvant chemo, just in case it didn't work in my case.
I love Christmas and love putting up the biggest tree that will fit in our room (9 ft this year). Many years ago we were being relocated from CT to MO, and we had to be out of our house on 12/15. We lived in a Residence Inn for a couple of weeks and I put up a real tree in our unit! Everyone thought I was nuts, but I had to do it! And the past seven years we've traveled from MO to MA for Christmas to spend with our grandchildren. We still put up a real tree every year except once when we took an extended trip for three weeks and didn't return home until 1/15.
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Tina... that is good news and yes sleep and holiday cheer are elusive when you are dealing with bc. hang in there.
Not in a festive mood but will try.
ksmatthews ...yea! port is out ...so glad for you.
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According to the Mammo I had a 2.9 cm tumor, at the time of surgery I had 3.3 cm and .6 DCIS, (didn't show up on Mammo) I'm assuming it was all attached. I was 8 of 9, don't know what my Ki67 was, if that is the Oncotype score I've asked to not know the number, my anxiety over this crap is bad enough, no reason to have that info if I can't do anything about it. I've heard exercise helps, so I've been doing about an hour plus on my eliptical 6 days a week. If nothing else, I'm actually losing weight at a nice steady rate.
Christmas has always been my favorite time of year. I love to do up the whole house and really get into the spirit of things. Unforturnately my husband hates the holidays and really has to force himself not to be a Scrooge, he can be such a downer sometimes! There's nothing better than a real tree, something magical about the way it smells. We broke down and got an artificial a couple of years ago, and I use the Yankee Candle plug ins Christmas scents all over the house, not the same but better than nothing.
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McCrimmon - the Ki67 is the rate of cell growth, not the Oncotype score. It is definitely something completely out of your control!
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LuvRVing, certainly don't need to know mine then. All I can do is eat as healthly as possible and keep on exercising. Been trying to stress less, hate to say it but I really need to cut some people out of my life. Their constant drama is just not worth it to me anymore. So sad, the person in question has been a friend for over 10 years but the negativity just rolls off of her and I'm done with that.
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You beat me to it, Michelle. I try to exercise, but I'm bad about not wanting to go out walking when the weather is bad, and it's the time of year when the weather is going to be bad for awhile, so... I just ordered a recumbent bike that should be here either Sat or Mon. They have a more comfortable seat than the upright bikes or spin bikes, and it's supposed to be easier on your back. I liked that I can also pedal to my heart's content while watching TV or reading a book. Now I just have to figure out how to assemble it. LOL
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Blood type - I'm O+
Yay on the port removal ksmatthews!!
Catwhispurrer - awesome news on your path report! Good luck with your chemo!
Painting - I hope you are able to take some joy in the season. I know you have so much on your plate right now. If all goes well with my chemo, let's try and do lunch in a few weeks. Someplace totally indulgent
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Titan - JAM - I can see that! Thanks for the article. I've been following the MUC1 trial, it is moving slowly
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My tumor characteristics were the nastiest of nasties, for sure. Nottingham 9, ki67 over 90%. Blech. Water under the bridge.
I'm happy to say it looks as though the Eribulin is helping. My pleural effusion appears to be down, and I am feeling better physically. I'm in the chair now getting treatment.
So I think I'll be able to do my Xmas trip - yay!!! I have to cut it a few days short for tx, but that's ok.
Have a good day everyone.0 -
Suze, so glad to hear the Eribulin is helping. Enjoy that trip, you deserve it!
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Suze- so happy to hear you are feeling a bit better and yes, YAY!!! for the trip! i hope you have a wonderful time!
Michelle- good to hear from you! Sounds like you are doing well and will be finished with rads before you know it!!
Ks- having the port removed is a little piece of heaven!! Congrats!
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Hello suze35, I was so glad to know that the eribulin is helping and that you are feeling better.
I am sending best wishes and fondest thoughts your way from the UK.
Best wishes
Sylvia.
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Don't know my bloodtype, and don't figure it matters anyway. Wait a week and they'll have a different opinion anyway. I don't put too much stock in the "science" of BC anyway--- it changes too much. I believe treating cancer is as much an art as it is a science... not to mention a crapshoot. How people fare during and after treatment is due, IMO, to individual factors that are still not fully understood.
My Ki67 was 99% and I don't put too much stock in that either. My surgeon at Sloan-Kettering told me it is simply a function of where the needle punch took place during the biopsy---- doesn't mean the entire tumor was "fast & furious". Nonetheless, I wanted that sucker *out* and was glad to have surgery ASAP followed by adjuvant therapy.... just in case my 2.3 cm tumor turned out to be chemo resistant. Knocking cancer cells out of the bloodstream via chemo is not a tricky as shrinking an intact tumor.
F*ck this... here's some humor:
If you didn't see this on the Tonight show, I hope you're sitting down
when you read it. This is probably the funniest date story ever, first
date or not!!! We have all had bad dates but this takes the cake.
Jay Leno went into the audience to find the most embarrassing first
date that a woman ever had. The winner described her worst first date
experience.
There was absolutely no question as to why her tale took the prize!
She said it was midwinter...Snowing and quite cold... and the guy had
taken her skiing in the mountains outside Salt Lake City , Utah .
It was a day trip (no overnight). They were strangers, after all, and
had never met before. The outing was fun but relatively uneventful
until they were headed home late that afternoon.
They were driving back down the mountain, when she gradually began to
realize that she should not have had that extra latte. ! ! They were
about an hour away from anywhere with a rest room and in the middle of
nowhere! Her companion suggested she try to hold it, which she did for
a while. Unfortunately, because of the heavy snow and slow going,
there came a point where she told him that he had better stop and let
her go beside the road, or it would be the front seat of his car.
They stopped and she quickly crawled out beside the car, yanked her
pants down and started. In the deep snow she didn't have good footing,
so she let her butt rest against the rear fender to steady herself.
Her companion stood on the side of the car watching for traffic and
indeed was a real gentleman and refrained from peeking. All she could
think about was the relief she felt despite the rather embarrassing
nature of the situation.
Upon finishing however, she soon became aware of another sensation. As
she bent to pull up her pants, the young lady discovered her buttocks
were firmly glued against the car's fender. Thoughts of tongues frozen
to poles immediately came to mind as she attempted to disengage her
flesh from the icy metal.. It was quickly apparent that she had a
brand new problem, due to the extreme cold.
Horrified by her plight and yet aware of the humor of the moment,
she answered her date's concerns about' what is taking so long' with a
reply that indeed, she was 'freezing her butt off' and in need of some
assistance! He came around the car as she tried to cover herself with
her sweater and then, as she looked imploringly into his eyes, he
burst out laughing. She too, got the giggles and when they finally
managed to compose themselves, they assessed her dilemma. Obviously,
as hysterical as the situation was, they also were faced with a real
problem.
Both agreed it would take something hot to free her chilly cheeks from
the grip of the icy metal! Thinking about what had gotten her into the
predicament in the first place, both quickly realized that there was
only one way to get her free. So, as she looked the other way, her
first time date proceeded to unzip his pants and pee her butt off the
fender.
As the audience screamed in laughter, she took the Tonight Show
prize hands down. Or perhaps that should be 'pants down'. And you
thought your first date was embarrassing. Jay Leno's comment... 'This
gives a whole new meaning to being pissed off.'
Oh and how did the first date turn out? He became her husband and was
sitting next to her on the Leno show.
If you laughed at this pass it on.
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Yeah Susan!!!! So happy to hear the new chemo is working. Hugs.
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Heidi: I so wished it didn't hurt to laugh-that was hysterical!!! My Ki67 was 99%, too, but it is dead and gone.
Blood type O Neg
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YEAH SUSAN!!!! Wonderful..and yes let's indulge!
Heidi...I loved it!!! What a story.
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Got good news yesterday. PT/CT was clean. No evidence of disease. I am doing the happy dance and praying for all of you to receive the same news.
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WOOOHOO!!!!! Doing the happy dance with you GuyGirl...................
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Susan, YAY!!!! I'm so glad the eribulin is working!!!! It is kind of a rough chemo, but seems to be effective for many.
GuyGirl, Great news!!! I'm very happy for you!
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Heidi, That is hysterically funny!!
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Here's the update. Another node lit up in my abdomen near my kidney. We don't know yet what the prognosis is but will do ct scan of my abdomen on March, 2012 and if necessary a biopsy. Surgery not in future as there are too many blood vessels and the node is small, so they only option is chemo. Since I had chemo in 2009, can anyone let me know which we may try now. Thanks to all TNS.Sorry, already had taxotere & cytoxan, and 26 rads.
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Heidi, thanks for sharing that, LOL it was so funny
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HeidiToo - OMG, that is too damn funny! I passed it on, for sure!
Suze - glad you are getting some good results!
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