Calling all TNs
Comments
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Congrats AMW and Gina!
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Well, shoot, Angtee15, I reviewed the trial again and, as Tulipsanddaffodils noted, it looks like you have a 50% chance of getting Cytoxan. Although most of my adverse side effects may well have been related to the Adriamyicin rather than the Cytoxan, I probably should have been in assisted living for 3-4 weeks I was so debilitated. I was also neutropenic after 3 of my 4 AC treatments. Further, another six months of exposure to a drug that might give me leukemia and will probably keep me bald for many more months has little appeal. I really wish they'd confined the trial to the alpha peptide vaccine. Very disappointing.
Lyn
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Thanks Amw and Lovemyvizsla.
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Congrats Amw and gmmiph on finishing chemo. I did my last Taxol on Tuesday. Yay! Feels so great after two months of A/C and three months of Taxol.
Now just have to meet with my surgeon tomorrow to schedule a date for surgery. Probably sometime late in March.
I left you a reply about nail problems in the Taxol thread, VLH. Hope yours don't get any worse.
Trish
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Thanks, Trish!
Lyn
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Thanks Trish and wishing youthe best of luck on your surgery!
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Congratulations gmmiph and amw on finishing chemo!
I finished chemo and radiation on February 10. I've had the worse sore throat of my life from treatment. Yesterday was the first day i could eat solid food. I still have no voice it's just a whisper. The radiation burns are healing and itching like crazy so that's a good sign. Surgery scheduled for march 20.
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Glad yo hear you're finally able to eat solid food again, DiV. You've already been through so much, with so much more to come, that every small improvement must be something to celebrate.
Sending gentle hugs and wishes for a relaxing and healing next four weeks before your surgery.
Trish
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Trishyla thank you so much! Gotta tell you this. I have a cat named Shyla too funny! Yes was never so happy to be able to eat. Praying my voice comes back soon.
Everyone has been so supportive i appreciate all of you for that!
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Thx ladies. It feels good to have that chapter done.
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Congrats ladies on finishing chemo!!! High fives and fist bumps all around!
Tulips & VLH--there is no placebo in this trial. Everyone gets the vaccine. You are getting the high dose or low dose depending on what arm you are randomized into. The Cytoxan gave me pause too. But I was told you get just one low dose of Cytoxan a few days before the first vaccine injection and it's not at a chemo-level dose that would cause hair loss. I guess the objective for administering Cytoxan is to get any bad immune cells out of the way before you get the first dose of the vaccine.
Tulips--it's an injection under your skin and nothing like an infusion. So far the biggest challenge for me is just getting to the center and back since I live in Chicago and the nearest trial site is in Detroit.
Feel free to PM me!
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Angtee, thanks for the information about the trial and your experiences. I always want to learn more about what's on the horizon. So many of the research efforts one reads about are still pre-clinical--promising but probably won't help any of us since clinical application is so far away. Still bless their hearts for the tedious lab work that moves the field forward and leads to actual patient based trials such as yours!
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gmmiph, congratulations! Very proud of you! Happy dance for sure!
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Meadow, Div and Angtee,
Thank you for the congrats and kind words. Those words of support and encouragement sure help me to go on knowing i am not alone on this journey.
I am always including all of you in my prayers and that in whatever condition each of you may be in, God will keep you safe and protected.
Take care.
Love,
Gina
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ladies congrats on finishing chemo. Very happy for you all
Today I am 1 year post treatment. So 4 more years to go. I am happy sad today as my mom died 6 months agotoday. I just miss her a lot. I kept hearing her voice in my head all day telling by me that she loved me more than life itself. She would say that to me all thru my chemo treatments. I would just want to have her hug me now and tell me that she was proud of me.
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Oh, Shopgal! *BIG HUGS*!!!
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amw5 and gmmiph...BIG CONGRATULATIONS
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Thanks for the clarification, Angtee15. Do they disclose any side effects from earlier patients?
Lyn
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checking in after 4 long months!
missed reading all the posts. hope everyone is doing good
hugs!!
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Thx ladies. (((hugs)))
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Hi BanR....so good to hear from you and know you are well. Keep going strong❤️
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Thanks for the congratulations ladies.
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On October 25, 2016, the lump in my breast was 4.5 cm.
On January 3, 2017, the lump in my breast was 2.3 cm (after four rounds of A/C).
On February 27 2017, the lump in my breast was 1.9 cm (after four rounds of Taxol).
Thank God!
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Amw5 - You go, girl!! That's awesome news! Keep strong before your surgery. Build muscle as that will help you heal. Pray as that will give you strength. Keep us up to date on your progress!
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yay for you, AMW! More taxol rounds?
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Awesome news Amw5. hugs to you
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suprsurvivr, just curious what have you decide regarding your next treatment, did you decide to go for platinum chemo or Xeloda, I have finished yesterday my first cycle of Xeloda and so far so good. No side effects till now 😊
Amw5, great news. Wish you all the best in your surgery & recovery
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Thx Momy4ever.
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Angtee15, saw your trial is in Detroit, will you share what hospital system? I live in SE MI and am interested in knowing more about this. Thanks!
Anne
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