Calling all TNs

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  • moe0279
    moe0279 Member Posts: 200
    edited March 2011

    Thanks teka. I'm wondering what can be done at this point... I know there are surgeries but wonder how much extra that's going to cost... I know since I chose a clinical trial I will have to deal with some side affects..I just wish I had know about this particular side effect and if there had been anything I could have done to prevent it... Apparently I'm 1/10 of 1% that has this particular side affect..lucky me! I've been having lots of headaches this week and from what ive read that comes along with nasal perforation, Along with high blood pressure..I have all three again lucky me

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  • kelben
    kelben Member Posts: 269
    edited March 2011

    I just want to be informed enough to be able to ask my chemo. people questions when they come up, but I sure don't stew over it all.

    Heidi .... brain dumping.... just how do you do that???   I have a few different ways... 1.  Captain Morgan    2.   Soap opera.. general hospital.... they have way worse things going on  and 3.  Walking and playing with the dogs ...  May 1st I am retiring and the dogs will be front and centre for a lot of my time.

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  • Teka
    Teka Member Posts: 10,052
    edited February 2012

    moe0279,

    Otolaryngologist could check for any damage to ears, nose & throat.   There could be damage that only a doctor can see, and be able to treat with medication.   Take care.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2011

    Recipe for brain dumping:

    First, find your brain. After chemo it is often missing.

    Second, load it up with all kinds of scary cancer stuff.

    Third, scream, jump up and down, beat your hands against your head in anger and frustration.

    Fourth, pull what little remaining hair you might have out or, if you are on the "other end of treatment" what little appearing hair you have coming in.

    Fifth, find a nearby distraction (Capt. Morgan is as good a companion as many) and treat yourself to some well-deserved time out.

    Sixth, go to sleep (with or without the help of additional medicine)

    Seventh, wake up, repeat.

    No charge for the consult. Let me know how it works for you.

    Remember: practice makes perfect. In no time, you will acquire immunity to all of it. Think of it as vaccinating yourself against unwelcome fear obsession.

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  • APRILNJ
    APRILNJ Member Posts: 6
    edited March 2011

    Diagnosed 1/18/2011

    Age 42

    Found lump myself -always do annual mammo since 40

    No history of BC in family

    BRCA -Negative

    Bi-Lateral Masc w/ immedaite Recon (expanders)-

     Right Breast only involved 1.5cm tumor opted for Left as well, too be aggressive

    Sentinal Node Biopsy - 5 taken all clear/negative

    Path report - Grade 2..Nottingham Score 6  Stage 1

    Starting Chemo this week if al goes as planned (8) Treatments Dose Dense A/C the Taxol

    My Doc is treating this aggressively, she told me without chemo I have  a 20-25% chance of reoccurence,,may not sound like alot but if your in that 20% ITS HUGE!!!!!!

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  • Titan
    Titan Member Posts: 2,956
    edited March 2011

    Hey April NJ....good luck with your first chemo!   You had the same treatments as I did (and several others on here)...

    Heidi..LOL..except I may have a problem with Step one! 

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  • cc4npg
    cc4npg Member Posts: 764
    edited March 2011
    AprilNJ:  Hi!  Welcome to the thread and forum!  This place is great and really helped me get through everything from surgery to chemo and more.  Check out some of the other threads for chemo... a lot of us have had what you're getting.
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  • jenn3
    jenn3 Member Posts: 3,316
    edited March 2011

    Moe - nasal and gastro perforations are very common with Avastin.  Talk to your onc, but I'm thinking an ENT would be the one to see about either surgery or what can be done.  I am really sorry to hear that you have a nasal perforation - (((hugs))).

    Kym - I'm sure Laurie Ericksen/France Luxe delivers to Canada.

    Sugar - I haven't forgotten about the Mardi Gras goodies I'm sending to you (your daughter).  My friend asked me to not send the box because she had some really cool beads to add - which I just got this weekend.

    I had a very busy weekend and luckily it was "cancer free".  I went to one party out of town on Saturday, a lot of the people there were friends of BIL & SIL and a shower today for a friend's daughter, most people there didn't know either.  It was nice to talk to people without the "cancer" discussion coming up. 

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  • Kymn
    Kymn Member Posts: 999
    edited March 2011

    Well I did it, GI Jane eat your heart out lmao, had DH shave it all off today, not so bad, will be an adjustment but hey this whole ride has been one. Anyhow just wanted to let you all know I bit the bullet

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  • Teka
    Teka Member Posts: 10,052
    edited February 2012

    I knew a BC patient on Avastin who died from bowel perforation.   Wicked side effects.

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  • Angelice
    Angelice Member Posts: 1,739
    edited March 2011

    hi ladies thanks for the welcome .. im on day 4 rads .. still going

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  • NavyMom
    NavyMom Member Posts: 1,099
    edited March 2011

    Kymm-Hugs to you and your DH.   I remember when We went out on the deck and my DH shaved my head.  Most of my hair just blew away in the wind.......But, to give you hope, I just had a real haircut, color and style last week.  Stay strong.  This will get better.

    Welcome to AprilNJ and Angelise and Hello to everyone else.

    And to those going to Washington for the Cherry Blossoms..........Have a great time.  It sounds like it will be a wonderful get away.

    Navy

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  • tnbcRuth
    tnbcRuth Member Posts: 454
    edited March 2011

    Kymm, I know it wasn't easy to have your head shaved.  Kudos to you for a good attitude....its only hair, right?  And in no time, you'll have hair again!  And hopefully having fun with it as I am...short, curly and so easy to maintain!  I was a (hi-lighted) blonde, it came in brown and I'm thinking of having it dyed dark red next week!

    You sound so strong :) and positive :) 

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  • Fighter_34
    Fighter_34 Member Posts: 834
    edited March 2011

    This DX is very frightening and down right scary, but knowing you ladies has made this journey much easier. I think I would have lost my mind if I didn't know you ladies.

    Plus most DOCTORS are saying we will be the largest group of surviving TNBC patients, and I am holding on to this.

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  • Kymn
    Kymn Member Posts: 999
    edited March 2011

    Good Morning from snowy Alberta, yes we woke up to more snow having to scrape and brush off our vehicles yet again when will it ever end.

    Heidi that is too funny I think I may have my masters in this lol.

    April good for you and your doctor, I had two lumpectomies but also am doing chemo being stage 1, chemo is a great choice for us TN sisters its our best defense. I am doing FEC x 3 Dx 3.

    Jenn it is so nice to have cancer free days isnt it I just enjoy them so much

    Navymom When was your last chemo? I look forward to the day I have to decided what colour to dye my hair lol.

    Ruth. thanks for the encourging words, I am trying to enjoy it. It sure was easy this morning getting ready for work. Although I am wearing my wig at work but it is pretty I like it. And hubby loves the GI Jane look :)

    To everyone out there has anyone heard from Michelle67 I havent seen her on in a few days and sent her a couple of PM's but havnet heard anything back. Does anyone know her here and can let us know if she is doing alright?

    Hope you all have a great monday just 4 more days till friday lol

    Hugs Kymn

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  • MBJ
    MBJ Member Posts: 4,352
    edited March 2011

    Melissa:  So sorry to hear about your awful SE's!  I didn't know it was on you if there were any side effects.  This is terrible!  Hang in there and I hope it can be repaired.

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  • Suze35
    Suze35 Member Posts: 1,045
    edited March 2011

    Welcome April, I'm sorry you have to join, but it's a great place. It sounds like your doctor is on top of things, which is very important for TNs!



    Kymn - I'm glad to hear you sound so positive about your hair. I wish my DH had liked the GI Jane look, lol. He used to play with my hair before bed all the time, but not having any nixed that. Now that I have about an inch, he's more comfortable with it. He's a great guy though, so I'll give him a pass on that one.



    Heidi - love, love , love your dump instructions. Red wine has become my aid of choice, but I might have to squeeze in some Captain one of these days. I'm going to print out your instructions and tape them to the cover of my iPad :)!



    I had a great vertigo-free day yesterday. DH and I took the boys to the movies. I saw Rango with my youngest. Johnny Depp is just amazing, and the story was a bit existential I thought. DS loved it! Unfortunately, I'm a little vertigo-y again today, I think I spent too much time on my side last night. We just got a new bed on Friday also, so I think I'm having back/leg pain as I adjust. Sigh, hope that's the reason anyway.



    So - would you guys push for a PET in my shoes? I'm sure my doctor can convince insurance, and a part of me wants to know if I'm clear. It would change the game plan a bit, I'm sure. But OTOH, would it really? I'd still do a round of chemo, with f/u after that...and ignorance can be bliss...

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  • Suze35
    Suze35 Member Posts: 1,045
    edited March 2011

    Melissa - that really stinks, and then to make you cover the SEs? Ugh. My doctor is really making a push for me to get Avastin with my adjuvant chemo, I will keep your experiences in mind should she manage to get it approved...I'm not sure I want it.

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  • Lynn18
    Lynn18 Member Posts: 416
    edited March 2011

    Suze35:  I have been wanting to see that Rango movie.  I love Johnny Depp.

    About your PET scan, if it might change the game plan, and if part of you wants to know, then I would push to have it.  My slow chemo brain is trying to figure out what OTOH means.  

    Heidi:  Great advice and Kelben, I think dogs are one of the best distractions.  Mine has seen me through the worst of this.  

     Jenn3:  I am glad you had a "cancer free" weekend.  I hope you have many more of those!

    April:  Welcome, I think your doctor is right by treating you aggressively.  I am sure many here will agree.

     Why do I not know what Captain Morgan is? lol

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  • Fighter_34
    Fighter_34 Member Posts: 834
    edited March 2011

    Here's the details on the clinical study ladies:

    WRAMC 07-20029 A Prospective , Randomized , Single-Blinded, Multi-Center Phase II Trail of the HER2/neu Peptide GP2 + GM-CSF Vaccine versus GM-CSF Alone in HLA-A2+ OR the Modified HER2/neu Peptide AE37 + GM-CSF Vaccine versus GM-CSF alone in HLA-A2-Node-Positive and High Risk Node-Negative Breast Cancer Patients to Prevent Recurrence

    I will be recieving the shots from www.sibley.org ONC dept., and hey my doctor is even pictured on the ONC opening page.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2011

    Lynn -

    OTOH = on the other hand

    Captain Morgan = Rum

    So,... OTOH + Captain Morgan = Laughing

    (Heidi's Math...)

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  • Lynn18
    Lynn18 Member Posts: 416
    edited March 2011

    Fighter:  Thanks for sharing that info.  Very interesting.  I see my onc next month and I should talk to her to see if there are any clinical trials that I could do.  

    Heidi:  Well I do have plenty of rum but not Captain,   OTOH-I should have known that. Thanks!

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  • Kymn
    Kymn Member Posts: 999
    edited March 2011

    wonder if we could get a prescription for the captain....hmmmm....lol

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  • cc4npg
    cc4npg Member Posts: 764
    edited March 2011
    Kymn:  Catching up here... saw you'd bit the bullet.  I was actually relieved once I bit the bullet and cut off the remaining of what was falling out by literal handfulls.  I knew that would mean I was that much closer to the finish line, where I could finally recover.  And it's true, this is just one step closer... a step that had to be taken.  :o)
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  • Teka
    Teka Member Posts: 10,052
    edited February 2012

    Suze35,

    I chose knowing my families fears to continue taking Avastin after the FDA gave a thumbs down.   My body.   My BC treatment.   However, not saying that the FDA is wrong, but maybe Avastin will save my butt.   

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  • NavyMom
    NavyMom Member Posts: 1,099
    edited March 2011

    Fighter34 thanks for sharing info.  Please  keep us up to date as things move along.

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  • Suze35
    Suze35 Member Posts: 1,045
    edited March 2011

    Teka - thanks for the insight. I want to do all I can, and my doctor really seems to think it would help. I do have a family history of stroke and aneurysm though which scares me. Well, I'll cross that bridge if my doctor gets it approved for me.



    So I am going to do the PET, next Monday. I was supposed to start chemo that day, but I think I really want to know what my situation is. If the cancer has spread, I don't want to "waste" chemos unnecessarily. Jeez I hate thinking about this. But my doctor pushed the insurance for it, so she must also think it's important.

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  • moe0279
    moe0279 Member Posts: 200
    edited March 2011

    Overall I glad i took the Avastin...My BC is undetectable with the last ultrasound i had 3 weeks ago...so was it the Avastin or Taxol?  I don't think i would have made a different choice to participate in the clinical trial This is the only major side effect that I have had...I go to my oncon tomorrow and have an appt with the ENT tomorrow at 1...I will find out at this point what can be done to fix this...I was suppose to start dd AC tomorrow with Avastin, but my guess is that i will not have chemo and definitely not Avastin...I will only be missing 3 treatments of the Avastin, At least i got the majority...This can show up for a year after treatment...I just keep praying!  hope everyone has a wonderful day and night and thanks for listening!!!

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  • Teka
    Teka Member Posts: 10,052
    edited February 2012

    'Supposing a tree fell down, Pooh, when we were underneath it?'   'Supposing it didn't.'   After careful thought Piglet was comforted by this.

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  • gillyone
    gillyone Member Posts: 1,727
    edited March 2011
    Smile
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