Any Stage 3, HER2+ (only), Node(s) + Girls here?

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  • janie44
    janie44 Member Posts: 1,460
    edited May 2010

    Hi ladies,

    I will chime in here too.  I was also diagnosed  ER-/PR-, HER+++, with node involvement, stage IIIA.  Just passed the sixth year mark in March with No Evidence of Disease!

     Janie Smile

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  • Leslie1962
    Leslie1962 Member Posts: 233
    edited May 2010

    Janie44 - That is so awesome to see you 6 years out. I have the same diagnosis and am very hopeful.

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  • Pure
    Pure Member Posts: 1,796
    edited May 2010

    I have a facebook friend who is er/pr neg and her 2 positive. She was diagnosed in her mid 30"s and it had traveled to her collarbone area. ( a node) She was considered 3 c.

    Anyway she is 6 years out. She use to post here on bc.org many years ago.

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  • Frankie_
    Frankie_ Member Posts: 422
    edited May 2010

    Janie44- THAT'S Smile WONDERFUL!!!

    Pure- Thanks for sharing!!!!!!!!

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  • Frankie_
    Frankie_ Member Posts: 422
    edited May 2010

    Leslie1962- How are you doing with your rads? I will be going on to my 4th week starting Monday. Wow, can't believe 3 weeks have past. I have a total of 6 weeks. I'm experiencing soreness and tenderness to the chest and underarm. It's becoming a bit sore to sleep on the affected side. My skin is tingling. I keep putting the prescribed lotion on but the area is still red. I have 4 fields of radiation. Getting a bit tired too.

    Frankie

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  • Leslie1962
    Leslie1962 Member Posts: 233
    edited May 2010

    Hi Frankie - I also have four fields. No redness yet, the area under the arm just feels tight, but I continue to stretch several times daily. The only thing I have been told to use is 100% aloe vera. Is there something else out there that you think is better that I might ask about? Hope you continue to do well through your appointments this week!

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  • annamari
    annamari Member Posts: 82
    edited May 2010

    The Neratineb trail is a year long study for Her +++ breast canncer patients who have finished 1 year Herceptin.  It is to see if this drug will help prevent reoccurance to the brain.  This drug is supposed to cross the blood brain barrier where as Herceptin does not.  I hope tis will help you.  There is a tread on here about the Trial.

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  • Brenda_R
    Brenda_R Member Posts: 509
    edited May 2010

    Her 2+++, ER-, PR-

    I'm not around the forum much anymore. I am now 3 and 1/2 years out from dx and still NED. 

    Oh yeah, 1 positive IM node under breastbone, couldn't be removed. Chemo and targeted rads exterminated it.

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  • Frankie_
    Frankie_ Member Posts: 422
    edited May 2010

    Hey Brenda,

    Glad you popped in and happy your'e doing well at 3.5 years out of dx!!!

    Smile

    Frankie

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  • Leslie1962
    Leslie1962 Member Posts: 233
    edited May 2010

    I second what Frankie had to say - yeah!!!

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  • kmn0701
    kmn0701 Member Posts: 117
    edited May 2010

    I fit this category too. I'm not around the forum as much as I used to be....sometimes it's SO difficult to try to get past it all when you're surrounded by it, you know? I finished Herceptin in February & had reconstruction that month also. Working on getting the foobies to look the same, as the left (cancer) side had the radiation & radical mastectomy....so the skin is much tighter/thinner. Might have to have another reconstruction, time will tell. Going to see a new Oncologist as I was never really happy with mine. When I finished chemo she basically sent me on my way with blood work follow ups every three months for awhile. No scans of any sort. I have two little girls (ages 6 & 4) so that's not good enough for me. I want a scan for some confirmation that the damn drugs did their job.

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  • earthtokj
    earthtokj Member Posts: 1
    edited May 2010

    Hi  Frankie and all:

     Brand new to the board.  I was diagnosed in Jan 2009 with Stage IIIB, Grade III IDC, HER2+, ER/PR-.  MRI showed significant lymph node involvement under arm (left side) and within my chest wall.  Had AC and Taxol/Herceptin before double mastectomy.  By the time I had surgery in June 2009, my tumor (larger than 5cm) was no longer present and all of my nodes were negative!  I finished 7 weeks of rads in Oct 2009 and am currently recovering from the first phases of reconstruction (TRAM flap on left with expander, expander on right).  I am in the land of NED and feeling fantastic.  I will start clinical trial of Neratnib this month as well.  Nice to see so many here who are doing well.  And I pray for all of you who are having a difficult time!    

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  • Frankie_
    Frankie_ Member Posts: 422
    edited June 2010

    Hi Kmn0701-I agree with you-find an Onc you feel comfortable with and one that you feel will give you that kind of care and attention that you are looking for!

    Earthtokj-Glad to hear that the chemo combo kicked the cancer's butt! I too am interested in the Neratnib clinical trail, but I have to finish up my herceptin treatments first-February 2010. Not to sure if they will still be looking for participants by then. I hope so!

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  • janincanada
    janincanada Member Posts: 258
    edited June 2010

    Just found this thread. I'm Her2++++ and had 4/10 nodes +. Did 3FEC, 3Taxol and 1 year Herceptin. Finished Herceptin in July 09 and celebrated by going hiking and camping for a month. Had prophy mast on left side and started recon in DEC 09. Currently waiting for exchage and feeling great. Exercising every day and hav ing fun!

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  • Frankie_
    Frankie_ Member Posts: 422
    edited June 2010

    Janincanada-Where are you from in Canada. I sometimes wonder why we get different chemo combo's. I did 4 AC DD & 4 Taxol. I will finish my herceptin treatments in Feb/10. Sounds like a great idea to go camping and hiking for a month to celebrate being done with herceptin! Way to go!!!

    I just turned 39 and I am so fatigued. I have 5 more rads left to go and of course herceptin. Were you fatigued? When did you reagin your energy level. I want to get into regular exercing and I know that it's good for your overall health. I am 5'5 and weigh 138lbs-could shed 10-15 lbs but I am so TIRED! I can't seem to motivate myself...everyday I say okay I will start today. Any suggestions?

    Frankie

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  • lizzyanne
    lizzyanne Member Posts: 73
    edited June 2010

    Hi - this is my first post. I have stage 3 - grade 3 Her2+ involving 4 nodes. "Ihatescreenname" chemo sounds just like what I am starting on Monday - I have already had a mastectomy on right side and then had to have a surgical lung biopsy - with removal of the suspected area -  to rule out the possibiity of cancer in my lung - negative thank God. I am having my port inserted on Friday. I am terrified of this whole chemo process.  They say the AC cycle is the worst...but it is something I have to do. Glad to have this group to chat with

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  • Frankie_
    Frankie_ Member Posts: 422
    edited June 2010

    lizzyanne-The not knowing is a scary process and everybody reacts different with the chemo combos. Just try and take 'one day at a time'. For me AC (DD) was very doable not fun but doable. The steroids will help you from getting nauseous and you will likely find yourself energized while on them. Take advantage of this newfound energy. You may also find your appetite is good too. You may find that after you come off the steroids you may have 1-3 days -down time. Food will likely taste off (metallic taste). You may experience chemo brain (where you forget things, can't focus and/or communicate clearly). These are the SE's that I experienced and although bothersome/annoying they were doable. I experienced more troublesome SE's with Taxol than AC. I recommend that you check out some of the active chemo boards and/or drop in here should you have any further questions relating to chemo. Good Luck! Keep us posted!

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  • Estepp
    Estepp Member Posts: 6,416
    edited June 2010

    How did I miss this thread...:) Hi Frankie and everyone.!

    I was like " fightingbird".. I did chemo first... But my tumor was over 3cm and they know from biopsy and mri I had at least three nodes positive. Er/Pr neg.

    June 25th I will be two yrs. out..:)

    I was told I was probably stage 3 from the get go...who cares... just a number... at least if you are 3 and UNDER. I would NEVER say being stage 4 is just a number.

    A/C Taxol and Herceptin.. Bi-lat ( by choice only) FULL not dissection... 36 rads...

    Dancing NED...

    SO SO GREAT to see some of the ladies above, writing in... some of you SWEET SWEET ladies helped ME stay calm two yrs ago... THANK YOU... xxxooo

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  • lfasano44
    lfasano44 Member Posts: 50
    edited June 2010

    I haven't been on here in a long time but wanted to pop in and say I am her2+++, 8/14 pos and I am about to reach my 2 year cancer free mark!!!!

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  • Frankie_
    Frankie_ Member Posts: 422
    edited June 2010
    Thanks for popping in Estepp & Ifasano44 and great news that you two are nearing you 2 year cancer free mark Smile
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  • lizzyanne
    lizzyanne Member Posts: 73
    edited June 2010

    Had my first chemo yesterday. The nurses were wonderful. They made me feel very comfortable and explained everything that was going on.  My port acted a bit funny when she was trying to get blood but had no trouble with the chemo. I didn't cry but did have a brief "weepy" moment. 

    As I was sitting in the waiting room - a woman came bouncing in with her scarf and baseball cap on and carrying her "bag of distractions" as I had. I was shocked as she had a big smile on her face while I was trying not to just burst into tears. Turns out that we shared a room and this was her last chemo treatment. We chatted a bit but it was good to meet someone at the end of her treatments- as I tend to not see an end right now. 

    I came home and was very tired - took a nap and then managed to sleep thru the night with only one wake up. Happy right now that I don't have to go back for 2 weeks but am keeping my fingers crossed that I don't "crash" too hard with side effects in the next few days.

    Go today for my neulastin shot - keeping the tylenol close at hand.

     To my AZ friends - My oncologist says he will do his best to make sure I get some of that nice AZ weather this winter. In fact, if any of you can recommend a good oncologist - not too long a drive from Anthem, I would appreciate it. 


    Love to you all...
    Liz

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  • nobleanna007
    nobleanna007 Member Posts: 641
    edited June 2010

    I am sorry if I have offended anyone!!!!

    But this is a discussion board and I feel that I should be able to tell my thoughts to anyone who has a question. I am apositive person and hope to GOD this will not come back, but I am not going to realistically think I have a chance before I am 80 of it not returning!!!! I have many friends who are staged alot lower and better odds than me that it returns, so yes I do have my fears. This does not rule my life, but yes it is in my mind, everytime I have bloodwork or a PET SCAN! Why do I need this if I am totally cancer free is what I say to myself! Sorry just my opinion! 

    We have every right to feel good that advances have been made for us and continue to be made! HER-2+++ before was a death sentence so yes we do have alot to look forward to, but I am not going to sugar coat it if someone wants a honest answer.

    B

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  • Frankie_
    Frankie_ Member Posts: 422
    edited June 2010

    Nobleanna007-Welcome back! Yes, we definitely should ALL be able to share our thoughts, feelings and opinions on this board. How is the reconstruction going? Any improvements? I think if I recall you were undergoing some complications. I agree with you and share the same fears as you. In my case, I fight everyday for it not to rule my life and consume my thoughts (easier than said-some days). I certainly don't have the same confidence in my body as I did before bc and presently living through some questionable scans.

    Frankie

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  • nobleanna007
    nobleanna007 Member Posts: 641
    edited June 2010

    Thanks Frankie,

    I truly am not trying to make people neg. about treatment.But I am not going to sugar coat it either, some have it easy some not, luck of the draw!

    Reconstruction on hold for awhile. due too graduation, work, employee going out for materinty leave etc. hopefully this fall I can have it done!!

    Hugs-

    B

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  • thrmine
    thrmine Member Posts: 98
    edited June 2010

    HI

    I'm a newbi, Dx May 3 Her2+, Est & Progesteron -., IDC, Stage 3

    I'm in chemo now and contemplating my sugery options that should be in early December.

    Nice to have this resouce.

    Thanks,

    Alice

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  • sandiddstn
    sandiddstn Member Posts: 88
    edited June 2010

    Hello ladies!!!  Not sure about where I should be posting, but I am er/pr + and HER2 -.  Have not found a form for this yet cause I am new to all this.  If someone can point me in the right direction I will go to that form..

    Really enjoy reading about the ones who are 3-5 years out.. so encouraging.

    God Bless you ladies and thanks for the help.

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  • Frankie_
    Frankie_ Member Posts: 422
    edited July 2010

    Sandiddstn- Hello-Seeing that you're are a Stage 3'r you will find alot of info in the Stage 3-Forum. The ladies here are wonderful!

    Frankie

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  • redwolf8812
    redwolf8812 Member Posts: 2,463
    edited August 2010

    I'm so scared.  My pet scan showed metabolic activity in an internal mammary lymph node (can't be surgically removed).  Before the scan, we knew about the multricentric left breast and the lymph node under the arm.  Now they want to give me chemo before mastectomy to target the node that can't be removed.  How do they know what kind of chemo to use?  Do they assume the node has the same cancer as the breast?

     Prayers for all.

     - Penny

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  • MamaBlaze
    MamaBlaze Member Posts: 1
    edited August 2010

    Hi everyone! I am thrilled to have found this site! Yes, I am also a Stage 3 Her2+ only girl. I had a bilateral mastectomy last year as well as TC, radiation and a year of Herceptin. I finished Herceptin May 25, 2010 and got the "all clear" 5 weeks ago. Woo, hoo!!! I am now looking forward to reconstruction Oct 21st. Can't wait to have some boobs again :) 

    Thx to all of you 5+ years survivors for posting. It's a great feeling to read your stories.

    Thx also to Frankie for starting this thread :)

    Liz. 

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  • Brenda_R
    Brenda_R Member Posts: 509
    edited August 2010

    Redwolf (Penny), I also had a positive IM node that couldn't be removed, seen on my first Pet/CT scan, and subsequent ct scan prior to rads.

    I had Adriamycin and Cytoxin, double dose, and then 35 weeks of rads with the last few treatments targeted on that node area. I also had 1 year of Herceptin.

    The next Pet/ct showed no activity and the next yearly Pet/ct showed nothing.

    The chemo/rads combo, combined with the Herceptin, did it's job. 

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