Calling all TNs

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  • bak94
    bak94 Member Posts: 1,846
    edited August 2012

    Inmate-I miss you!

    Hope-How is your treatment going? Thinking of you!

    To all the ladies with avatar pictures of themselves-you are all so beautiful! What great photos! Borntosurvive-love the pose!

    Kim-Thank you for your message. Suze was such a special person and will never be forgotten. She was very lucky to have a friend like you, as I am sure you felt very lucky to have a friend like her!

    Lory-I haven't checked out the video but I will!

    Tazzy-I hope you get a great report!!

    Sending love to you all!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2012

    BAK-- great job!! I remember those days of going to costco and having to leave DH to finish. Sending prayers of a clear CT.. But I feel ya.. I have my first mammo since this whole ride started nearly a year ago..

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  • Titan
    Titan Member Posts: 2,956
    edited August 2012

    Oh...wow...loved that video...I'm in tears dang it....dang...I hate cancer

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  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited August 2012

    Hello ladies! You all have been busy bees today while I was off visiting my mom, getting a mani/pedi and babysitting the grandkids. I now have the oldest one here with me for the night and we are going to the beach tomorrow.



    I am still feeling absolutely fine! Crazy, this disease. I did get a call from the Dana Farber clinical trial nurse this afternoon and ARQ-197 is now officially open. I will be one of 26 in the USA to get the drug in a clinical trial specific to metastatic triple negative cancer. The drug has been tested extensively and successfully with lung and liver cancer, so I am very hopeful. I will have all the pre-testing (EKG, CAT, labs, etc) on Friday, then next Friday will be "day one" of the trial, assuming I pass muster. I can't imagine why I wouldn't, so I'm not even considering the possibility.



    For those of you with GERD or other digestive issues with chemo, here's what I learned...prilosec works great for AC but you need Pepcid for Taxol (and probably Taxotere). The two antacids work on different acid producers so prilosec won't work for Taxol. And while I don't know it for a fact, I think that Pepcid won't work so well with AC. Talk to your oncologist and make sure you're taking the right one.



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  • Tazzy
    Tazzy Member Posts: 2,546
    edited August 2012

    Well ladies I have good news... the surgeon got all the cancer (he believes)... took 10 nodes, 3 of which were positive.   Now onto rads.   I will have to leave you all though as the path report came back that I am ER positive.   How can it change from 8 months ago ???   Anyway it has and that is that.   I get my drains out tomorrow too which Iam really looking forward to.  Chemo worked excellently... shrunk my tumour from 8+cm to 1.5cm. 

    I will have to look into now and again as I want to know how Annie and Mandy are... any news yet Annie, and Inmate. and....  well all of you who I dont see on other threads.   I love you all.

    I wish each and every one of you positive news such as mine.   One day at a time eh?

    Positive vibes out to you all ladies xxxxxxxxxxxxxxxx

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  • christina1961
    christina1961 Member Posts: 736
    edited August 2012

    Luv, I am glad you are feeling good - I've been reading up on this clinical trial drug and it looks very promising.  Enjoy your day at the beach with your grandson. I can't think of a better place to be than the beach - almost any beach!  The weather has been beautiful here in Tennessee. We usually go to Jekyll Island, GA.

    Bak, I get the muscle cramps from the tamoxifen, too.  I've been on it since March and it seems like the worst time for the muscle cramps was about a month ago.  My onc said the side effects usually peak around six months.  To help with the "crone shuffle" (someone on this board coined that phrase and I love it!), I aggressively stretch my calves in bed before my feet hit the floor in the morning. Wishing you the best on your scan.

    The best thing for me today was walking and jogging with my daughter. I am so fortunate to have the relationship with her that I have.  I was a very young mother and sometimes I think overall that was a good thing because we are very close.  We work together and she sees probably too much of me - so it meant a lot that she wanted to spend time with me exercising after work today. Every moment like that is sweet; I've definitely learned that lesson through all this.

    Tazzy, that is great news!  Do you know what level ER+ you are?  Mine changed, too - but still very low levels (5-10%) and my PR is -. My onc thought it mutated in response to the chemo.

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  • JAN69
    JAN69 Member Posts: 947
    edited August 2012

    Luv - All this GERD stuff is strarting to make even more sense.  I had AC and Taxotere last summer and I never considered that that could be the source of my severe GERD.  What a wonderful bit of information.  And what an education I'm getting.  So happy you are feeling so well.  Being with grandchildren is wonderful medicine, I know for a fact.  And it's fantastic that you are in the study.  Enjoy the beach. Jan

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  • DesertMama
    DesertMama Member Posts: 47
    edited August 2012

    Woot woot Tazzy!!! I'm so happy to hear your positive news! 

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  • ksmatthews
    ksmatthews Member Posts: 812
    edited August 2012

    Luv so glad you get to start the trial soon!  Yay!!!

    For gerd my dr has prescribed protonix it is prescription but only like $3 a month for 30 days.  It works wonderful as long as you take it once a day.  For cramps mine started arouund  the 8 month mark after chemo and I learned as long as I eat bananas that the cramps stay away.

    Tazzy you don't have to leave us, you are welcome to still hang out and chat!

    Inmate was popping in to check on you.  (((hugs))) 

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  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited August 2012

    Tazzy - I agree with everyone, you can't ditch us that easily!!! 

    Jan - glad that tidbit of info helped. 

    Going to the beach today with DGS #1, will be a great day!  See you all later!!!

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  • NavyMom
    NavyMom Member Posts: 1,099
    edited August 2012

    Goood news for you Tazzy!   Bad news for us if you leave us! 

    Have a great day every one.

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  • Luah
    Luah Member Posts: 1,541
    edited August 2012

    Luv: Great news on the trial - it sounds very promising!

    Tazzy: Good to hear the chemo knocked back the tumour so well -- and the ER+? That's great news as you now have another weapon! Interesting that the chemo may have changed it - may be another argument for neoadjuvent chemo. Do hope you'll continue to post here.  

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  • Tazzy
    Tazzy Member Posts: 2,546
    edited August 2012

    Good morning Ladies and thank you for letting me be part of your group still - I will for sure be happy to hang out here with you all and chat.  

    Luah... I am going to ask my MO when I see her in October if the neoadjuvant chemo changed my ER status... the surgeon didn't really seem to know for sure, but said maybe ???  I guess all these people have their specialities.  

    Anyway.... for today... the sun is shining brighter and everything around me seems a little bit more special Cool

    (((inmate)))

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  • minxie
    minxie Member Posts: 484
    edited August 2012

    Inmate, sorry you're not feeling so hot. When I told my rads onc how fatigued I was all the time, he recommended sublingual vitamin B12. I gives me a little more energy and it's healthy. Just a thought. Hope things are looking brighter today!

    LuvRVing, awesome to hear about you getting into the trial! Can't wait to hear how it goes!

    Tazzy, how ER+ are you now? This time around I'm 1% er+ as opposed to 0% three years ago. But they're considering that enough to put me on Letrozole! I started it this week, so far no side effects... And I know it's kind of iffy, but I also started some vaginal suppositories with phytoestrogens.  Everyone's saying it will only be absorbed locally, not systemically... I sure hope they're right! I just could not STAND any longer the extreme pain from peeing I was having from all the chemo-induced vaginal atrophy. Lordy, I could barely walk, never mind anything else!

    I've also started my Metformin this week, taking it slow... I am taking so many drugs and supplements my purse weight like 25 pounds :)

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  • BernieEllen
    BernieEllen Member Posts: 2,445
    edited August 2012
    Dear Wife, I'm writing you this letter to tell you that I'm leaving you forever. I've been a good man to you for 7 years & I have nothing to show for it. These last 2 weeks have been hell. ... Your boss called to tell me that you quit your job today & that was the last straw. Last week, you came home & didn't even notice I had a new haircut, had cooked your favourite meal & even wore a brand new pair of silk boxers. You ate in 2 minutes, & went straight to sleep after watching all of your soaps. You don't tell me you love me anymore; you don't want sex or anything that connects us as husband & wife. Either you are cheating on me or you don't love me anymore; whatever the case, I'm gone.
    Your EX-Husband
    P.S. don't try to find me. Your SISTER & I are moving away to West Virginia together! Have a great life! --

    Dear Ex-Husband Nothing has made my day more than receiving your letter. It's true you & I have been married for 7 years, although a good man is a far cry from what you've been. I watch my soaps so much because they drown out your constant whining & griping. I DID notice when you got a hair cut last week, but the first thing that came to mind was ‘You look just like a girl!' Since my mother raised me not to say anything if you can't say something nice, I didn't comment. And when you cooked my favourite meal, you must have gotten me confused with MY SISTER, because I stopped eating pork 7 years ago. About those new silk boxers: I turned away from you because the $49.99 price tag was still on them, & I prayed it was a coincidence that my sister had just borrowed $50 from me that morning.
    After all of this, I still loved you & felt we could work it out. So when I hit the lotto for 10 million dollars, I quit my job & bought us 2 tickets to Jamaica but when I got home you were gone. Everything happens for a reason, I guess. I hope you have the fulfilling life you always wanted. My lawyer said that the letter you wrote ensures you won't get a dime from me. So take care.
    Your Ex-Wife, Rich As Hell & Free!
    P.S. I don't know if I ever told you this, but my sister Carla was born Carl. I hope that's not a problem

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  • Babs37
    Babs37 Member Posts: 455
    edited August 2012
    Good one Bernie!Laughing
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  • Fighter_34
    Fighter_34 Member Posts: 834
    edited August 2012

    Tazzy- YEAH!!

    I concur with everyone else. What you are going through will difinitely help someone else down the road. Plus we like to stay in contact and track each others progress, and provide support to those that need it. So post and let us know how you are doing. If memory serves me right I think we have had two other ladies that turned positive after tx.

    Minxie- let us know how Metformin is working for you. I have completed my first full year on the study. The study nurse said that my bloodwork looked normal, but would not give me any other info other than to keep my iron up. She's so sweet though. If I can answer any question please ask.

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  • Tookybum
    Tookybum Member Posts: 38
    edited August 2012

    Hello Ladies; Stopping in to say hi.  I had to take a little break to get my emotions in check. I was really having a very hard time with the loss of three sisters so very close together.  Even though I did not know them personally it was making this f@#*ing disease to very real.  Glad to see everyone is doing well.  Had my second treatment last week.  Gave myself the Neulasta shot for the first time and shaved my head. It was all falling out and making a total mess anyway.  Didn't bounce back quiet as well as the first.  Really acted like a giant lump most of the weekend.  Even felt pretty crappy at work on Monday.  But better now.  Looking forward to going back to school shopping with my 7 year old.  He can be quite a fashionista when he wants.

    Love you all. Stay strong.

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  • Tazzy
    Tazzy Member Posts: 2,546
    edited August 2012

    yay... my drains are gone - what a relief. I feel like a new person Laughing

    Hang in there tooky... great you have your son as a distraction from this crap.    Hang in there with the tx - chemo works.... zapped my tumour from 8+cm to 1.5cm.

    Take care everyone, hope you manage to find some sunshine in your life today.

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  • whaevah
    whaevah Member Posts: 354
    edited August 2012

    Hi fellow TN's,

    I am 16 days post 4DD xAC and I can't seem to get it together. No energy, blurry vision, achy and feeling down. Usually by this time I have a few good days but am struggling.

    Taxol starts on Tuesday, geez.. Anyone else experience this after AC? Could it be low WBC as I have not had Neulasta for any treatment? Thanks.

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  • mags20487
    mags20487 Member Posts: 1,591
    edited August 2012

    Tazzy you stay put missy....that old expression 2 out of 3 ain't bad applies here for you!

    Inmate...hope today was a better day for you...love and hugs

    Tooky we all understand the need to take a step back once in a while and we will always welcome back any sister with open arms after a bc.org vacation.  That is how it works around here...never alone unless you need to be!!!  Hugs to you.

    Bernie...awsome as usual..thanks for the pick me up

    today is 1 yr since my BMX and I had PT today for my (formerly) good non-LE arm...now I have to wear compression on both arms as she said there is swelling in the arm now...sadness abounds for me as I really am hating the daily compression on just one arm and cannot imagine what it will be like on both....SIGH!!  Someone I have known for a few years asked me today how I was doing and I told her about my dilemma with the LE and she says "well at least your are alive"  Thanks for the reminder and have a great day.  Guess some people just do not get it at all.  That's why I love you all here...you truly get it

    Maggie

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  • Wrenwood47
    Wrenwood47 Member Posts: 73
    edited August 2012

    I thought I would share this link with all of you from Life Extension. It is very interesting regarding some clinical trials for TNs. Here is the link.

    http://www.lef.org/news/LefDailyNews.htm?NewsID=14570&Section=DISEASE&utm_source=DailyHealthBulletin&utm_medium=email&utm_term=Disease&utm_content=Body+ContinueReading&utm_campaign=DHB_120821

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  • bak94
    bak94 Member Posts: 1,846
    edited August 2012

    Mags-wearing the compression sleeves on both arms truly does suck!!!!!! I am suppose to wear them, especially when I work, today I said screw it and did not wear them. I am a hair colorist and those dang things are a pain! They get wet, I get color on them and they are HOT! And not hot in a good way! I am now suppose to get all the stuff for wrapping, oh what fun that sounds like, not. Oh, and I wear a compression cami, because I also have swelling under my arm kinda on my back. Add that to taking tamox. and hot dryers all day and it equals me sweating like a pig! (sorry pigs, I really do love pigs!)

    One day I was in a bad mood at work and I was complaining about my hair not cooperating, my friend said the same thing your friend said, "well, at least you are alive and and added at least your hair is coming back". Oh I was pissed and went off on her. I said can't I have a bad hair day like anybody else? WHy do I have to be thankful that I got cancer and lost my hair and now it looks terrible? People without cancer can complain about their hair so why can't I? I almost made her cry and then I felt bad and apoligized to her! A better response from her, as we were in the salon, would be, oh, can I help style it for you? That would have made me much more happy! I know she was trying to "be positive" but I wasn't in the mood that day! She is about the nicest person and I still feel bad that I snapped at her!

    Boy, I guess I am in a mood today! I have been enjoying work but am so frustrated about being hot and sweating, it is so embarrassing. I have a fan, I dress as cool as I can and I keep a towel near by. It is gross!

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  • Hope60
    Hope60 Member Posts: 223
    edited August 2012

    Hi ladies - wow, this has been a busy board.  I was away for a few days visiting my family & just got home tonight.   Physically I feel OK,  but I guess I'm still trying to adjust to my new reality....so I haven't had much energy for reading or posting.  But, I hope to catch up here this weekend.  Hope everyone is doing well!

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  • OBXK
    OBXK Member Posts: 791
    edited August 2012

    Bernie - loved it

    Tazzy - stay put

    Bak - wishing you a better tomorrow.

    Hope - rest well.

    Luv - I hope everything lines up perfectly for the trial.



    Hugs all around.

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  • BernieEllen
    BernieEllen Member Posts: 2,445
    edited August 2012
    GLADIATOR:
    My name is Maximus Decimus Meridius, commander of the Armies of the North, General of the Felix Legions, loyal servant to the true emperor, Marcus Aurelius. Father to a murdered son, husband to a murdered wife.

    TATTOOIST:
    Right...I'll just put "Max", shall I?

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  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited August 2012

    Hi Ladies

    Well Bak94 my day today must have started off like your bad one did.  I was so excited as it was my last radiation, then a visit to the genetics team and then HOME.  I could hardly wait to get on the road.  Anyway I arrived at 8am for my radiation and the machines were busy so after waiting for 40 minutues they decided to put me on another machine.  By 10.45 I was really pissed off as it still wasn't done and I had missed my genetic appointment which I had waited six months for.   I complained and the poker faced bitch on the pink machine had a right go at me, so I took off my gown, shoved it at her and told her exactly where she could put her radiation.  Then I drove home. I thought stuff it missing the last one won't make any difference.   

    When I arrived home my family had decorated all the house with balloons and streamers and congratulations, welcome home, and sent me beautiful flowers but that cow had really made my day go downhill.  Then I got a call from the oncologist to say I had to go all the way back again (three hours driving) for the last radiation (15 minutes) on Monday. So I told her I don't want that poker faced bitch doing it or I wasn't going.  So I am having it done on another machine. 

    She really stuffed up my last day which I was so looking froward to.  Anyway I am home with my family now and its wonderful.

    The Lodge was a lovely place and I made many friends but it wasn't home and I missed them all so much.  I see the oncologist in six weeks and they will only do scans etc if there are any further issues.  So I guess from now on its wait, see and hope like hell.

    My Mandy see's the specialist on Monday for her results and I was going with her but I can't now because of the further appointment.  I will let you all know what he says.  I am keeping my fingers crossed like hell for her.

    Tazzy good for you with your results but you aint going nowhere girl. 

    Inmate so sorry you are feeling unwell. I hope everything goes ok and you manage to get your trial.   Sending you my hand to hold onto

    To all you ladies who have been thinking about me I haven't forgotten you but it was hard at the ldoge to get the computer going with everyone wanting to use theirs but I am back for good and back onto posting.

    Love you all.  Annie xx      

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  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited August 2012

    Annie - congrats on "almost" finishing.  And if I were you, I'd reschedule that last rad treatment on Tuesday so that you can be with your daughter.  She needs you and one more day waiting for that last rad treatment probably won't make a difference.

    Bernie - funny!  You always make me smile!

    Whaevah - hope you recover over the weekend.  Taxol should be a little easier so try to hang in there. 

    I am going for my pre-trial testing today then off to Old Orchard Beach near Portland, ME for the weekend with my son and his lady partner.  I don't think my DH is coming - he wants to play golf so he'll stay home.  We'll have lots of togetherness next week when I go with him on a business trip.  He has to go to Philadelphia and we are staying in Atlantic City.  Woohoo!  Beach and slots!  And the long-range forecast looks very beach-worthy, so I'm a happy girl!

    Inmate - hope you are feeling OK and your docs are coming up with a plan for you.  "When you're going thru hell, keep on goin' "  And I know, easier said than done.

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  • kathyrnn
    kathyrnn Member Posts: 393
    edited August 2012

    Just a quick check in, been keeping up with the posts, just been quiet.



    Cocker - congrats, and I agree with Luv, make the appt for Tuesday,



    Tazzy - don't EVEN think of leaving!



    Inmate - I' m joining hands with Cocker for you!



    Hope - good to hear your doing well.



    NavyMom - woohoo on Navyson's visit.



    Love to all. I'm escaping to the casino today.

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  • kathyrnn
    kathyrnn Member Posts: 393
    edited August 2012

    Had to come back to tell you what an "event" a casino day is for me, lol. I told my Mom last week that I was going to the casino today, and my 86 y.o. Mom promptly told me "no your not"! (picture the head spinning scene from the Exorcist. I'm 58 yo, and my Mother is still telling me I can't go out and play, heheheheh). I asked why, and she said, I don't want you bothering Dick and Betty Ann for that kind of foolishness. (they are our dear neighbors, and if I go any distance away, I have make sure they are home, just in case Mom has an emergancy. They have URGED me to go anytime I want, to get a break from my Mom, lol, before she drives me nuts). I just nicely told Mom, that it was no problem and omitted the other part. Two hours later, she again told me I couldn't go, "your car has a lot of mileage, what if you breakdown"? I smiled sweetly and told her my friend Mel was on vacation and told me to take her car. (already outsmarted you on that one!). Dear Lord, I know she'll make me pay for misbehaving, but I'm damn well gonna go and enjoy myself today!!!!

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