Calling all TNs

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  • Grammy98
    Grammy98 Member Posts: 16
    edited May 2013

    Schatzi - yes, we are almost identical in dx, stage, tx and timing!  I do believe the forgetfulness is chemo related as I had no problem before.  I have a friend at work who is 8 years post TN and is just now 40 years old and while I think she is really smart and funny, she says she never got back that sharp edge she had before.  Actually, I kind of like having an "excuse."  Somehow, it is easier to joke about and not as scary as worrying about dementia!

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  • Luah
    Luah Member Posts: 1,541
    edited May 2013

    I'm certain I have chemo brain SEs too. The fogginess has definitely passed, and my memory seems better each year out, but there are several times when I simply can't recall the whole gist of a conversation or something I read from 5 minutes or 5 days ago... I will lose the thread, or be unable to recount a situation in the precise language I used to use. Or a word will suddenly escape me - it's as if it's floating out there somewhere,  slightly beyond my cognitive reach. Very frustrating, especially for a writer who earns a living by putting words together. 

    Inmate, hoping hoping all is well. 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2013

    Good morning ladies!  Today is my week off of Zelda!  Yippee!!  I'm hoping I can have a few days of not having my behind kicked before I start all over again next Monday.

    How are kathryn and Stupidboob doing? 

    I've had a hard time keeping up here.  Obviously! LOL  I read it then can't remember what I read so I apologize for having NFI what is going on.

    Except!  I know that there are some of you waiting on test results.  Hope all goes well and you get the best news!

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  • PeggySull
    PeggySull Member Posts: 686
    edited May 2013

    Schatzi,



    My main symptom of chemo brain is the inability to remember common words. I am almost two months post chemo. You're not imagining this very real symptom. Hope it goes away soon for all of us recent post chemo.



    Peggyu

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  • Lovelyface
    Lovelyface Member Posts: 674
    edited May 2013

    Luah - Interesting reading about your slight memory issues.  I myself am seeing a Neurologist on May 15th.  I feel chemo brain a lot these days, and I know that when my 83 old year mom can remember a lot more than me, that is not normal.  I am forgetting words, it just won't come to me at all, even after some hours.  I am waiting to see what they can do for this, whether there are any tests they can do to give a medical reason.  I have read that sleep apnea can cause memory problems and I do have mild sleep apnea.  I know that chemo definitely changed my beautiful wavy hair into straight hair.  Those nice natural waves are no more.

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  • inmate4232010
    inmate4232010 Member Posts: 310
    edited May 2013

    Good morning Ladies,

    Lots of talk about chemo brain.  Im sorry to say it never really comes back to pre cancer/chemo.  I read an article some time ago that showed it is actually the cancer that effects your brain and not just the chemo.  Most of our memory and smarts will return, but alas we will always have the excuse to have forgotten or messed up on a word, sentence or thought.  Now, that can't be all that bad, right?

    Update on my scan.  Well it turns out the the chemo and WBR did not do the job we had hoped.  Last September my brain showed 3 spots.  Two in back and one at the front.  It appears the one at the back of my brain may be slightly larger and the other two appear unchanged.  Disappointing news.  This in addition to the skin mets on my chest (still there, but better) we are going with Doxil for two rounds to see if that is effective.  Doxil is part of the Adriamycin family and it was a little creepy seeing that red color again.  Oh, well, let's just hope this one works.  I really am running on fumes here.  With that said.  I just had an edible and weather be damned I am going out into my garden today.  Housework can wait until tomorrow.  Clean underwear is highly overrated.  There's two sides to everything!

    Love to you all ladies.  Have a great a wonderful day.   

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  • JAN69
    JAN69 Member Posts: 947
    edited May 2013

    Oh Inmate, So your news was disappointing.  I hope your garden is good therapy and gives you a boost to keep up with things you want to do, not just housework.  My best to you.

    Phyl-Up, I hope you are up to being normal for  a week.  Best to you, too

    Michelle, Yipee for your improvements!

    Best to all, just can't remember  who you are and stuff like that.  Chemo brain +/- old age.  Jan

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  • JAN69
    JAN69 Member Posts: 947
    edited May 2013

    OOps  Inmate - I meant to say so sorry your news was disappointing.  So Sorry   Jan

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  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited May 2013

    Inmate - (((Hugs))) you must be hugely disappointed.  I hope Doxil  is your magic potion!

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  • natL12
    natL12 Member Posts: 135
    edited May 2013

    Inmate  ((Hugs)) to you.  I'm so sorry you're having to deal with this bad situation.  Nat

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  • Luah
    Luah Member Posts: 1,541
    edited May 2013

    Inmate: Well crappitty crap - I am so sorry those mets are still there. We are all here for you, hoping with all our hearts that the Red Devil does his job.  

    (Even in the face of disappointment, your amazing spirit shines through... and you had me chuckling with that underwear comment!) 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2013

    Inmate, sorry the scan results and about needing new chemo. I'm glad you have some edible although I was confused for a minute since you mentioned it in the same paragraph with the underwear comment. :)


    Jan, evidently I can't have my week off. Although I get away from Zelda, my counts are down so I get neupogen shots for the next 3 days.



    Phyllis

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  • Reality
    Reality Member Posts: 782
    edited May 2013

    Inmate - so sorry about your scan news. I am also running on fumes, so I am right there with you - I hope the new chemo works for you!

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  • NavyMom
    NavyMom Member Posts: 1,099
    edited May 2013

    Inmate, well, crap.  I am so sorry for your news.  sending postive thoughts for this next tx to work.  holding you close to my heart.

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  • TifJ
    TifJ Member Posts: 1,568
    edited May 2013

    Inmate- I think of you often and hope like hell that the Doxil knocks the crap back. Hope you were able to get out and garden!!

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  • inmate4232010
    inmate4232010 Member Posts: 310
    edited May 2013

    Phyllis......that made me laugh and laugh.  No my underwear was not edible and dirty to boot so, ewwwwwww!

    Did a little yard work today but moved on to jewelry as I forgot that I'm doing an artwalk this weekend.  Good news from the store, I sold 8 pieces over the weekend.  Pressure is on.  Thankfully I have a few pieces stashed at another store I can pull for the walk.  Whew!  I also came up with a couple more fun designs today so I am jazzed for a good show.  I always take vintage boxes for those who buy and this weekend is Mom's day so hopefully that will help out my buyers.

    Thanks everyone for the well wishes.  I'll get through this, one way or another.  Hope everyone had a great day. 

    Love, love, love..........d

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  • OBXK
    OBXK Member Posts: 791
    edited May 2013

    I hope you have a successful art weekend! I agree housework is over rated. I just make clever designs in the dust on my credenza. I have hired number 2 son to do all the bathrooms once a week :) Sorry your tx isn't doing the trick. Hope the baby red devil - reduces the holes in your head. Hugs.

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  • Lovelyface
    Lovelyface Member Posts: 674
    edited May 2013

    Inmate, yes, your spirit shines through your words.  I am sorry that you have to do the red devil again, but maybe that is the answer. I was just thinking that in 9 months, only one enlarged, the other two are the same size.  A little bit of good news, right?  That it is not growing as fast, maybe it can be controlled.

    I just want to say, that you have courage and strength, my friend, you are one heck of a women and my hats off to you!!!!!!!! You are fighting hard, keep it up. Fu......k BC!!!!!!

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  • GuyGirl
    GuyGirl Member Posts: 182
    edited May 2013

    Hang in there Inmate, we are all pulling for you.

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  • schatzi14
    schatzi14 Member Posts: 1,647
    edited May 2013

    Inmate...so sorry you got discouraging news but hope the red devil works its magic this time!

    Speaking of everything having two sides...that's the answer to the underwear problem...just turn them inside out and enjoy the garden. Laundry can wait!

    Luah...interesting line of work you are in...although not surprising given the wonderful way you have with words when you post on here. Hope the "summer" brings back any missing words. I am enjoying the warm weather immensely.

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  • LRM216
    LRM216 Member Posts: 2,115
    edited May 2013

    Inmate:

    Sending you white light and all my sincerest wishes and hope that this chemo will be the one that kicks this cancer to the curb.  You shall remain in my thoughts for a very positive outcome.  

    Hugs,

    Linda

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  • Titan
    Titan Member Posts: 2,956
    edited May 2013

    Inmate..yes..I think that the doxil will do the trick..no..i don't think it..I know it...

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  • Hopex3
    Hopex3 Member Posts: 397
    edited May 2013

    Inmate..your going to beat this! I remember in the fall when I first started reading these threads, how in awe I was of you. Not only do you have a killer avatar but you have such a strong attitude. I have every bit of faith that you will kick this crap to the curb once and for all! Best of luck at your artwalk this weekend. We are still having good weather so you will be in luck!!

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  • Lauralind5
    Lauralind5 Member Posts: 220
    edited May 2013

    Hi everyone. I was just diagnosed 4/26, the day after my 52 bday with IDC. 3 cm left breast and 2.5 cm lymph node. Both were positive for IDC. Today I met with the multidisciplinary team and was told I am TN with multiple lymph nodes under my arm but nothing outside of that.



    In a week I start 16 weeks of ACT. Is ACT as bad as I think it's going to be?

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  • inmate4232010
    inmate4232010 Member Posts: 310
    edited May 2013

    Boy did I forget how much the neulasta shots make your bones hurt.  Rude awakening at 1:30 in the morning.  Damn my knees hurt!  Thank goodness for pain pills.  Don't take them often,  but they are effective little buggers.

    I am a bit edgy today.  Must be the pain and fatigue.  So much so that I "schooled" my friend on appropriate etiquette.  That isn't usually how I roll.  Today required a refresher coarse for sure.  Hopefully she will forgive me.  It was all very well meaning and not done in a mean spirited way.  I was honest, that's what counts.

    I also found out a fellow TNBC fighter was just diagnosed with mets to her hip.  This is her 5th re-diagnosis in as many years.  She will go a year then BAM, something else shows up.  She is a fighter and staying positive.  Again, that's really all we can do, LIVE.

    Love to you ladies..............d 

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  • jhj0112
    jhj0112 Member Posts: 16
    edited May 2013

    Hi,



    my wife(36 yrs old) is just diagnosed with IDC triple neg, locally advanced. she is on neoadjuvant chemo, had first AC ( once in 3 weeks for 3month) then taxol for 12 weeks.

    then surgery (most likely macsectomy with lymph node removal)



    she has no side effects (other then hair loss) so far, thankful but scared at the same time ( heard lots of ppl going through bad vomitting). does anyone have the experience that it gets worse as AC treatment goes on?? How about taxol?



    I try to be strong in front of my wife and others and not to think ahead but I'm burnt and scared inside... so any comment will be helpful.. thanks!

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  • inmate4232010
    inmate4232010 Member Posts: 310
    edited May 2013

    laralind5......jhj0112.......The side effects for ACT can be manageable.  Make sure you both talk about the issues with your Dr. and they will get you medicines that will help.  I did not have trouble with vomitting, but did get sour stomach and lack of appetite.  

    You'll get through it.  Make sure you keep hydrated.  Water Water Water!

    Love....d

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  • schatzi14
    schatzi14 Member Posts: 1,647
    edited May 2013

    jhj...Sorry we had to meet this way but there is a lot of information to be gained  by this forum.

    I also had the DD AC...4 treatments and then 12 weekly taxols. I was fine for the first 2 treaments of AC altho I had vomitting and a feeling of misery for a few days between treatments. I also took the Neulasta shots the day after each IV to keep my blood counts high enough for the next treatment. Unfortunately, after the 3rd AC, I developed blood clots in my lungs so wasn't able to take the 4th and last IV.

    I went straight to the 12 weekly Taxols, and I had no problems with them at all except for minor fatigue. I was also 68 at the time. I had 16 radiation treatments after that as well with no side effects at all.

    I had my lumpectomy before I started chemo.

    I wish your wife a speedy recovery and I am sure she will do very well.

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  • Reality
    Reality Member Posts: 782
    edited May 2013

    jhj- so sorry about your wife's diagnosis, but so glad you came to our thread. This is a very supportive thread. Please continue to be a part of our community. In response to your AC/Taxol concerns. I had a tough time after my first AC infusion - could not even find my car in my small community hosp. parking lot! I was actually looking for a car I previously owned! I called my onc and advised him that I could not do chemo. as I could not go through life disoriented. I met with my NP - she advised me that my body was just trying to reject the harsh chemicals, and that it would be easier as I took AC. She was right. I had less side effects with each infusion. The thing that helped me most was to go home, take 2 Ibupropen and sleep for as long as I could. I was also prescribed steroids at infusion, and for three days following infusion. Although sleep patterns are severely affected by steroids, they really helped with side effects. 

    Taxol - Taxol was bearable - not as tough as AC. (I had lots of "heaviness" in sinus area with the Cytoxin - but not with Taxol). Taxol did bring about a lot of leg pains - so I hit the Ibuprofen again. I did lose some toenails and fingernails, but they grew back. I have heard of icing fingers and toes during taxol treatment, but was not given that option. Taxol did leave me with permanent neuropathy in my toes - not severe, but annoying - just feels like my toes are almost all the way "asleep", all the time. 

    Rest and fluids were the key for me - lots of naps and also sitting in the yard to get fresh air. 

    Best wishes - you and your wife are in my thoughts.

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  • Stupidboob
    Stupidboob Member Posts: 345
    edited May 2013

    Hey Gang,
    Phyllis thanks for thinking of me......:)

    I am sorry to see several new members...........man this just sucks.   

    I have had two treatments and I am not sure how I feel.   I guess because when I did the AC then Taxol they were not together.  I am doing Cytoxan and Taxotere and I don't like the weird feelings.   I guess they are normal as the doctor has not said anything differently.  MAN I HATE CHEMO HEARTBURN..........it is the worst.   The pain on the Taxotere is nothing like the Taxol but still there.  I have been short of breath with this regimen.  First round I did ok for a couple of days and even went on a walk.   Then I had the diarrhea and fever.   This time so far no diarrhea (sometimes welcome it though) fever has not set in.  I did not get to go for our walk because of the weather but not sure that made any difference.   I just plain feel strange on this regimen and wow wee am I emotional this second time.   My periods never straightened out from the first time but this just seems like a different emotional roller coaster.  I know some of this is anxiety because I just feel like am I doing this for nothing.  I mean if I want to live I have to do it, but it sure wreaks havoc on the body and I wonder if I am killing myself trying to save myself.  My neurothpy never went away completely but it is coming back with a vengeance.  My hair started falling out but this is weird.  It only fell out half way.   The top of my head, and only half of the "woo woo".  I don't get this treatment.  So, I went ahead and shaved my head and now I have all these darn bumps that HURT!!!  Hubby thinks that it is because I shaved it to soon, but darn when your hair is falling everywhere you want it gone.   I did not want to go through that emotional turmoil like before.   Hubby is also not being as supportive as he was the first go around.   Hurts but I am trying to understand he is dealing with his own emotions but I am the one dealing with the sickness and the pain and the over all just not feeling well.  I don't want to do anything.  My mind does but my body talks me out of it.   I have one more treatment and then we will scan (of course terrified) and then we will either continue with chemo or move to radiation.   I am so terrified of the rads, because of the burns and the fatigue but mainly because mine is on the left side and I hear it can cause heart and lung damage.  Will I be able to get in my pool, will I have energy to do things that need to be done, like feeding my babies and etc.   
    Ok..........I will get off of myself now, but it is hard......:(

    I do hope everyone is dealing with this monster the best they can........it just pure SUCKS!!!

    Inmate............I am so sorry.

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