Calling all TNs
Comments
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After having the flu 4 years ago, I will never not get a flu shot, especially now when immune system is weak. I plan on my whole family getting ours in Oct.
Suze still thinking of you! ((((hugs))))
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I missed mine last year due surgery, chemo and recovery. My job usually offers it so when the annoucement comes out I will go and get mine.
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Suzy35 - Damn and Blast! I am so sorry to hear your news, but it doesn't seem like you are letting any moss grow. Wishing you the strength you need. A NYC trip in the spring, sounds fun. I use to go all the time when I was younger, and could fly People's Express, for $29 each way.
TifJ - thanks for sharing.
Healing thoughts to you who are in treatment or broken hearted.
Karen0 -
They just called with my BRCA results - Negative!
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OBXK -
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OBXK: Great news!!!
I haven't had the flu since my diagnosis. I guess I have been lucky, but again, my husband gets sick all of the time and doesn't take supplements and I take tons so I have to say it helps. Beats getting a shot-I have had enough needles to last me a lifetime, lol.
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Susan and others - Thanks for the thoughts about the flu shot. I was considering getting one before surgery and now I'll definitely go ahead and get one.
OBKX - Good news on your results. As if BC on its own doesn't come with enough of its own problems, being BRCA positive just adds even more anxiety and concerns.
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I always got the flu shot - they used to come to our office to give it, in addition, my onc strongly suggests it, so I get it yearly.
OBXK: Great news to hear! And a relief to you, I'm sure.
MBJ: Hugs right back at 'cha!
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OBXK-
doin the happy dance for you.0 -
Suze- Please know I'm thinking of you and hope you got some exciting news about some new clinical trials available to you at DF. I was so impressed with all of your knowledge about this FC. I also now know for a fact that you have absolutely incredible taste when it comes to shoes! I also really enjoyed our like what? 3 hour lunch! LOL. I had such a great time with you in N Y. and look forward to meeting up again soon.
Kym and others- Im so sorry you are going through this with your spouses. As many of these gals on here know I went through something very similiar last year with my BF. My BF and I have worked things out and have never been closer. LOL I'm saying this today! Ha Ha! I hope that if you want things to work out they will but you can also celebrate your new freedom and the wonderful strong women you have become.
I had my port finally put back in last Friday. Markers were up and new tumors have popped up but the skin mets have decreased so my onc has now put me on weekly Abraxane and Avastin starting yesterday. The last Avastin I had was 3 weeks ago and man, it sure reduced things including pain fairly quickly but then started creeping back. She is optimistic and so am I.
I've missed all of you and Ive been playing catch up on all of the posts. Some very sad news . Does anyone remember last year when we started posting at least one nice, funny or crazy thing that happened to us that day. It always put a smile on my face. So the best thing that has happened to me today was that my daughter stopped by with my smiling hug filled grandson and my son in law worked around here building some new holding beds for my plants. Housekeeper came and cleaned my house so it smells nice and feels good. I sat out by the pond today watching my koi swim, dragon flies flying around and worked on plant labels. I'm going to fix terriyaki chicken and rice for dinner ( My boyfriend will grill it) and I've got a nice warm happy feeling that I'm here today to enjoy it all. I hope something nice happened to all of you today that at least put a smile on your face too!
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I can't even begin to express my thanks for all the good thoughts. You all brought me to tears with your kindness, Linda, you are so eloquent, thank you for your touching post. MBJ, Fighter, Painting, OBXK, Luah, Lynn, Sylvia, and everyone i have missed, thank you. I will come back tomorrow and post more. I have been vascillating between calm and collected, and just plain broken. But reading here makes me smile.
LJ - Next time, I'm buying shoes!! Lol. And we'll close down a restaurant for dinner
. I'm glad your MO is changing up your schedule and that the Avastin seems to be working. Good stuff!
So, DF was very good today. The one downer is that the MO said there are suspicious shadows on my liver, she can't rule out the FC. But she said to not let that get me down, I still have options and it doesn't change anything. I've decided to do a clinical trial with Abraxane and Tigatuzumab (a monoclonal antibody that targets the tumor cells death receptors.) I asked about resistance to Taxol, and she said that it was formulated differently, and that it could very well work. She also indicated that she'd even give Taxol and Carbo another go down the road since it has been more than six months. Im going to take a leap here and give it a go. This is a large study, 15 centers across the nation, and the results are promising. It is opening up in a week or so, and she said they'd probably fill it in a week! I'm #2 on the list, so I won't have a problem.
She also presented two other studies for me, but both were Phase I and I'm not quite ready for that. She then looked over the 7 other studies I brought in at other centers, and gave me feedback on which were good for me and which ones weren't. Very thorough. In the end, she said her recommendation is the Abraxane trial first, then on to an Ixempra or Parp inhibitor trial if that fails.
The trial is randomized at a 2:1 ratio - two will get the Abraxane/Tig, one just Abraxane. If I get the chemo arm only and have progression, they will add in the Tig. I'll be scanned at 8 weeks, sooner if symptoms arise, she uses CTs.
I have to have a biopsy, so they will probably go for the bone met in my hip. She said mayyyyybe the liver, but she can't really be sure it is mets, and the bone met is an easy grab. I do have to wait a little for my last Avastin to clear, but if all goes smoothly, I'll be starting in 2.5 weeks. They are literally just getting ready to open it!
I think that is it. Other than the possible liver issues, no new surprises. Mets to pelvis, lower back and medistinal nodes. Ironically, the area I was so concerned about - supraclavicular nodes - was clear. Go figure.
I will be back tomorrow, ready to fight for as much time as I can get. 20 years should about do it.
You guys are awesome.0 -
Suze...You are amazing and this is very very promising. I am so impressed that you were able to do all your research and I know you will get the best of care for yourself.Dana Farber is so excellent. I can't imagine what you are going through but I know that you will do everything possible to get what you need and that I am with you on 20 years and as Teka says " At the very least!".
Hugs and prayers and all good thoughts.
As a side note, My dear friend from Albany, NY is getting a stem cell transplant through DF...she is at B and W as they are harvesting her stem cells and she has been given the best of care and everyone has been super positive regarding treatment.
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Suze- I'm so glad that things are moving fast with treatments at DF and that you will be starting the new one soon. There's so many new trials out there for you to do, ONE WILL WORK ON THAT FC!!!
And I wish for you many, many, many great years to come. Big hugs. xx
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Rachelvk--I will call my onc to find out if I should have the flu shot now or if I should wait until chemo is over.
Suze--We are all behind you!0 -
Laurajane- I love the idea of posting one nice thing in our day. For me today it was watching my little boy about to get on the school bus this morning and as he was about to get on, he stopped, turned around, came back to see me and gave me a great big kiss. Just made my day then and there. God I love this kid.........He's my sunshine.
Take care everyone.
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Suze,
I agree with paintingmywaythru...and thought the exact same thing. You are amazing! I am so glad that you will be able to get the best treatment and very soon. I hope that you can stay calm and collected as much as possible.
I was off the boards for a while but the last time I was here was when you were getting your new little car. Suze, when I think of you it will be with a wonderful pair of NY shoes behind the wheel of your convertable!
Dear one, you and your family will be in my thoughts often. I wish only the BEST for you.
BarbaraJo
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MBJ....I think you are just chicken..ha ha...after all you have been though and you don't want a flu shot.
Seriously though..after having 8 chemos through IV (needles)..blood tests all the time and surgery...I do freak out when when they give me the flu shot... I sit there and literally want to scream..but I do it...I don't even like giving blood anymore..in fact..here's a rant..I HATE NEEDLES!!!
Oh..I was 30 months out from surgery the other day...still hanging in there, still feeling ok....waiting for the other shoe to drop..maybe...but trying to just move on...
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Suze, I am glad you are getting into a trial so quickly, seems there are so many drugs I have not even heard about! So the rads did kick the fc out of the supraclavicular nodes!
My doc did say I will be getting a flu shot even though I am on chemo.
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Summary of Life
GREAT TRUTHS THAT LITTLE CHILDREN HAVE LEARNED:
1) No matter how hard you try, you can't baptize cats..
2) When your Mom is mad at your Dad, don't let her brush your hair.
3) If your sister hits you, don't hit her back. They always catch the second person.
4) Never ask your 3-year old brother to hold a tomato.
5) You can't trust dogs to watch your food..
6) Don't sneeze when someone is cutting your hair..
7) Never hold a Dust-Buster and a cat at the same time.
8) You can't hide a piece of broccoli in a glass of milk.
9) Don't wear polka-dot underwear under white shorts.
10) The best place to be when you're sad is Grandma's lap.
GREAT TRUTHS THAT ADULTS HAVE LEARNED:
1) Raising teenagers is like nailing jelly to a tree.
2) Wrinkles don't hurt.
3) Families are like fudge...mostly sweet, with a few nuts
4) Today's mighty oak is just yesterday's nut that held its ground...
5) Laughing is good exercise. It's like jogging on the inside.
6) Middle age is when you choose your cereal for the fiber, not the toy..
GREAT TRUTHS ABOUT GROWING OLD
1) Growing old is mandatory; growing up is optional..
2) Forget the health food. I need all the preservatives I can get.
3) When you fall down, you wonder what else you can do while you're down there.
4) You're getting old when you get the same sensation from a
rocking chair that you once got from a roller coaster.
5) It's frustrating when you know all the answers but nobody bothers to
ask you the questions
6) Time may be a great healer, but it's a lousy beautician
7) Wisdom comes with age, but sometimes age comes alone.
THE FOUR STAGES OF LIFE:
1) You believe in Santa Claus.
2) You don't believe in Santa Claus.
3) You are Santa Claus.
4) You look like Santa Claus.
SUCCESS:
At age 4 success is . . . . Not piddling in your pants.
At age 12 success is . . . Having friends.
At age 17 success is . . Having a driver's license.
At age 35 success is . . . ...having money.
At age 50 success is . . . Having money..
At age 70 success is . .. . Having a drivers license.
At age 75 success is . ... . Having friends.
At age 80 success is . .. Not piddling in your pants.
Pass this on to someone who could use a laugh.
Always remember to forget the troubles that pass your way;
BUT NEVER forget the blessings that come each day.
Have a wonderful day with many *smiles*
Take the time to live!!!
Life is too short.
Dance naked. Woo-hoo!
"If you can't take the heat don't tickle the dragon."
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Heidi,....thanks for the smiles, today was a good day for it.
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MBJ- Thank-you for the healing CD. I will listen to it today. I also need to listen to my other one. Did you want a copy of mine from Depak Chapra?
Suze- This clinical trial sounds promising! I feel like this is meant to be. I hope the 2 1/2 week wait goes by really fast and that this works for you. Will you be with a new onc? How did you like the docs you met with? I'm right with you on this 20 year fight. One of the many things I love about you.
Babs- Your story just melted my heart, I loved it and it read like a Hallmark card! Thank-you for sharing. How old is your son?
Titan- I'll be calling my onc today about the flu shot. I remember another woman talking about it at chemo on Tuesday. I have asked my BF and son to get them. 30 months? That is fabulous and sure puts a smile on my face. Congratulations!
Heidi, Heidi, Heidi - Thanks for the humor. My coffee tasted even better supplemented with the chuckles (Happy Dust) you've shared. Thank-you. P.S. I'm smiling!
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Laurajane- He is 5. He just started kindergarden these past 2 weeks. The first days were rough on him (and me
) but he loves it now. We've been together everyday since he was born so we have to adjust to our new "normal". Gives me a little more "me" time but still, I can't wait to see his little face when he comes home after school. Didn't sing "it's the most wonderful time of the year" when school started. Everyone tells me that I will sing it next year
..................Heidi- Thanks for the good laugh this morning.
Wishing everyone a good day. Hang in there gang. Hugs to all.
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Babs, I remember the first day my son started kindergarden. My husband took off work to take me out to breakfast to try to get my mind off of it so I would stop crying. I'm not sure I've ever done the happy dance about either going back to school afte the summer before this year. Now, I'm just glad they have that to occupy their minds while I go through all this.
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Suze: Feeling very positive for you. Sounds like your meet at DF went well, and you have a good treatment plan in place.
Babs: Can so relate to your story, although it's been 14 years for me. As a mother, you never forget that wrenching feeling (which, beware, also comes from overnight visits, starting high school, first parties, going to camp, driving a car, going to college and a hundred other "farewells")... but at the same time, you're excited for them and how their life is unfolding. Very bittersweet!
Best thing that's happening to me today: older son is coming for dinner.
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Slightly disappointed today. My onc decided to hold off my last treatment today until tuesday. Had been running a temp and they had me on some serious iv antibiotics. No more temp since yesterday morning but he precautious.
Suze very glad to hear your appt went well, I've been keeping you in my thoughts.0 -
Suze,
I'm glad you have a good plan in place. I've been thinking about you throughout each day.
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Heidi - that was awesome! Loved the Friggin Fairy, HAH!! Thank you for the smiles.
LJ - Your good response to your treatment is helping me be calm about using Abraxane - keeping my fingers crossed it works for me also! I will be transferring my care over to DF - the MO is wonderful! She is young, and does a ton of research studies, and she never once gave me the sad face or a timeframe. She just said I am doing the right thing going for a trial, and she believes chemo with a biological agent is the way to go for TN. I will miss my old MO, but my case is becoming even more complicated, so we understand it is time for me to move on.
Babs - what a sweet, sweet boy! I am so glad he is enjoying school so much. I can say that I do feel some relief when school comes around, lol, but that is because my boys are at the age where all they do is fight with each other!! My daughter, on the other hand, is so amazingly sweet, it will be hard to see her start full time. And I plan on at least seeing THAT!!
Titan - I'm with you. I HATE the stabs. I can take any IV insertion, any blood draw, etc. that they throw at me, but something about the violent stab of a shot just sends shivers down my spine!! And 30 months out? That is just AWESOME!
McCrimmon - hang in there - it sucks being your last treatment, but better safe than sorry with a fever. It will be over before you know it.
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So its amazing how finding out you have cancer in parts of your body brings out the symptoms, lol. I am noticing now when I take a deep breath, I feel some discomfort at the end - my lungs are completely clear, so I'm pretty sure that is due to the swollen medistinal nodes.
My right side ribs are also KILLING me - and I don't have mets there apparently! I think I might have badly bruised one because something showed up on the PET, but my DF MO didn't think it was cancer. She also said that even if the shadows in my liver WERE cancer, they were far to small to be causing this type of pain. I guess my trip to NYC was better than even I realized!!
After three days of whirlwind activity, I'm taking a break today. Whew. Have a great day everyone!
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Laurajane: So great to hear from you--Your post about sitting in your garden is causing me to yearn for the one I am about to create! We are in the middle of packing, so enjoy your CD (it works on a very deep level) and when I get all unpacked I will have to see what CD's I already have. The one I sent you is my favorite-very healing. So glad your treatment is working!
Best thing today is having my coffee with all of you while simultaneously sitting here cozied up on the couch with my DH. I hit my 2 year mark this week-hoping you and Suze and all of us will still be posting in 20 years!!!!
Titan: Darn straight I'm scared-hate, hate, hate needles, lol!
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Heidi: Thanks for the laughs! #3 great truths---soooo true!
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MBJ - I like the image of being cozied up on the couch. Great way to start the day!!
I forgot to post my best thing today - hmmm.... so far, I'd have to say the leftover pizza from Regina's in Boston
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