Calling all TNs

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

    Bad fudge??? there is such a thing as bad fudge - I thought it was all good... yum, yum.

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  • inmate4232010
    inmate4232010 Member Posts: 310
    edited August 2012

    luv....yeah for the trial!

    I'm here ladies......haven't been feeling too spanky so mostly sleeping.  In some pain, so pain meds and medibals have been my friends these days.  I see the MO tomorrow to talk about a plan of attack.  I don't think this chemo is doing it for me so it looks like we are on to chemo #12.  Hopefully this one will work.

    Thank you all for the hugs, kind words and colorful language.  All are so greatly appreciated.  I will check back in later tonight.

    I had a great time at the zoo.  Exactly what I needed!

    Love to you all......dawn

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  • borntosurvive
    borntosurvive Member Posts: 213
    edited August 2012

    Inmate: Glad to see you but sorry you are zapped of energy.  Your body is just likely resting before it kicks the crap out of this thing.  Glad you had a great day at the zoo.

    5Owens: MRI's can be a bit controversial so try to hold tight and stay positive until you hear something otherwise (which you won't.....it will all be good).  It could be anything that causes the machine to "light up".  Hang in there, waiting is the worst part of all of this.  Come here and scream if you need to......we understand you.

    Quick question......has anyone had any stomach issues since being done chemo?  My stomach gets so crampy if I eat salad or raw veggies and then I'm in the bathroom for an hour while it all goes right through me.  It's like I can't digest my food properly.  I can go weeks without any issues and then 2 days of it and then nothing.  Can chemo cause irritable bowel syndrome or anything like that?  Does anyone know?

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  • the5owens
    the5owens Member Posts: 99
    edited August 2012

    Thanks ladies...once again you have made me feel better. Holding in to the positive!! Gonna try to stay busy!! I hope I can be as brave as all of you!!

    Stephanie

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  • ksmatthews
    ksmatthews Member Posts: 812
    edited August 2012

    born I had some stomach issues, dr had me take a stool sample in and I had a bacterial infection, a few antibiotics and I was good to go.

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  • JAN69
    JAN69 Member Posts: 947
    edited August 2012

    Inmate - So good to hear from you.  I've been concerned since we haven't talked to you lately.  Please pamper yourself with all the rest you need.  We are watching over you and holding your hand.

    Born - Your question about IBS is interesting. I have a touch of that, but I was recently dx with GERD.  Between the 2, I've got a busy belly.  I've never thought about it being a SE of chemo.  Hmm.

    Wishing everyone a dose of joy.  Jan

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  • onvacation
    onvacation Member Posts: 1,344
    edited August 2012

    My MO asked me today if I was having any stomach issues, so must be a common thing after chemo?  Luckily I good most days as long as I eat right!

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  • Wrenwood47
    Wrenwood47 Member Posts: 73
    edited August 2012

    Inmate so good to hear from you....we worry when you are quiet. Stay strong, we all have you surrounded with love and good thoughts.

    On another subject, my PCP started me on Metformin because of high glucose reading. ONly 107 but he "wants to stop it early". I remember several of you ladies are currently on it and  remember that LUVR is now off of it. Any SE's I should know about? I recently lost 15 pounds but he thinks it is due to my 2 month bout with Shingles. My PCP didn't know it had been used in clinical trials for TNBC...kind of fun to be educating my doctor.

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

    Wren, I started Metformin back in April for a Hgb A1c of 6.0 and 6.5 which is only a hair above normal.  went to my PCP looking for Metformin for BC and he gave it to me.  He knew about the  studies because his own sister has BC.  Most Docs tell you to start slow with only half or quarter of the prescribed dose and gradually work your way up as your body adjusts.  The biggest SE is GI.  (Diarrhea, cramping)  I had the opposite problem.  I found that my calcium supplement and the Metformin did not get along.  I was on a calcium carbonate supplement and once I changed it to Calcium citrate all was fine.  I am now on Metformin 850mg twice a day.  And my last Hgb A1c was down to 5.5.    :)

    Born, I started having unbearable heartburn after 1st chemo tx.  MO put me on Prilosec and that took care of things.  I tried to stop taking it about 2 months after final chemo tx and symptoms returned so i gues I am on it for life...no biggie as long as the meds do their jobs

    Luv, glad your trial is going forward.  I would like to learn more about it.

    Inmate, glad to see you post.  Thinking about you often

    Hope, thinking of you, too.  How are you doing??

    5owens, sorry you are in that dreaded waiting room again,  I think Cocker might be sitting in there, too.  CS, any news on your daughter yet?

    well, gotta go.  Navy son is home for a few days on leave.  So good to have him here.  I love being able to look across the dinner table and see his beautiful face. 

    Wishing everyone a good day

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

    Inmate - so good to hear from you. So sorry you are having such a hard time and I wish they would find the right cocktail for you. If you are inclined to do a clinical trial, you should consider it sooner rather than later. Some of them have limits to the number of previous chemo treatments.  Many hugs coming your way!

    I ended up staying on metformin because it turns out there was only one clinical trial where metformin caused an exclusion.  That's because it was using carboplatin plus another diabetic drug (generic actos).  The FDA just issued a warning that being on actos for more than one year significantly increases your risk of bladder cancer.  I have defied every negative odd during this cancer journey so I decided that I don't need to consciously add another risk factor.   My a1c is 6.0 as of last Friday, so I need the metformin or some other diabetic drug.  Metformin is cheap and effective.

    There were other trials that required weekly IV treatment (mostly with carboplatin and a trial drug) but I don't want to do one of those right now because we have the trip to Hawaii in October.  The one that I'll likely get on is targeted to TNBC, it's an oral drug, and I will stay on it until I have progression...hopefully a nice long ride.  I'll fill in the details of my trial once I get started - I am still waiting for a call from Dana Farber notifying me that it's officially opened.

    I didn't have any tummy issues after finishing AC/T last summer.  I did have some with Xeloda and went back on generic prilosec.  I've been on metformin for so long that my system is used to it.  I will say I never have a constipation issue, and I am sure that's compliments of my morning metformin dose accompanied by a cup of coffee.

    Fudge...mmm!  My dad used to make the fudge recipe that was on the back of the Hershey's cocoa tin.  We added lots of nuts to it, I remember it being very yummy!

    I spilled coffee yesterday on my better laptop and killed it. New one on the way.  This netbook's keyboard is a little clunky so it's forcing me to not be too wordy...haha. 

    Love to everyone I didn't mention, especially you newbies beginning the journey.  Now is the hardest part, but you'll get through hell and keep on going, and next year it will all be just a memory.

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  • Fighter_34
    Fighter_34 Member Posts: 834
    edited August 2012

    A few tummy issues when treatment began, but I just think it was more nerves than anything else. If you feel uncomfortable check with your ONC by all means. Since you are in active treatment mention it on the next visit so it is charted. 

    Luv-How are feeling? Truly wish I could secretly run away to Hawaii and enjoy myself too, but me can't (sad face). I have too much to do. I have put so many projects and people on hold when I was first dx'ed, but spring of next year will be my time. I really want to get away with my hubby NO KIDS allowed!!!

    Stephanie-waiting is the roughest part. As soon as you get a game plan in action hopefully things will settle down. Try to relax and stay on top of things and weigh all of your options. If you are thinking of a BMX please feel free to PM with any question. Develop a great working relationship w/ your cancer team because you all will have to work together closely. It doesn't matter if you don't know all the terminology or how to look at scans they will be happy to help, and informed patient is a great patient. I would sit right there in my little paper hospital gown and look too and be like what is that dark grey area or why is this so white?? 

    Gentle thoughts for us all.

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

    <object width="640" height="480"><param name="allowfullscreen" value="true"></param><param name="movie" value="http://www.facebook.com/v/10150974868803463"></param><embed src="http://www.facebook.com/v/10150974868803463&quot; type="application/x-shockwave-flash" allowfullscreen="1" width="640" height="480"></embed></object>

    Hope this works

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  • Babs37
    Babs37 Member Posts: 455
    edited August 2012
    Lory- Loved that video!!!
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2012

    So glad you did Babs! That song always lifts me up when I am feeling down.. The video is great

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  • JAN69
    JAN69 Member Posts: 947
    edited August 2012

    Lori - I absolutely love it.  What a picker-upper!!!!!!!! Thanks for going to the effort of loading this for us.  Jan

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

    LOVED THAT VIDEO!!!!  Thanks, Lory.

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  • Sandlake
    Sandlake Member Posts: 211
    edited August 2012
    Lory~  Love the video and song...thank you for lifting me up todaySmile
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2012

    We all need things like this to help keep us fighting.. We are after all Warriors!!

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  • PinkyWI
    PinkyWI Member Posts: 73
    edited August 2012

    Adding my thanks, for the video -- I send an email update to family and friends about every two to three weeks and will be including it in my next update.  It made me smile.

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  • Tazzy
    Tazzy Member Posts: 2,546
    edited August 2012
    Thanks Lory.... was needed Smile  Off to the BS this afternoon for post op follow up.   Has path report so keeping everything crossed to hear him say Clear Margins/NED.
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  • monisch
    monisch Member Posts: 57
    edited August 2012

    wow.. Kim that was very moving.... thank you for sharing that with all of us. I dont know what to say ...im at a loss for words.... just thank you is what i can come up with.  God bless you....

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  • dgcote
    dgcote Member Posts: 28
    edited August 2012

    I love the vidio, made my day, was feeling sorry for my self, it picked me right up.

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  • dgcote
    dgcote Member Posts: 28
    edited August 2012
    Lory48 is there a way to send that vidio to me in email so i can play it when i need it, My email is thbxldy@yahoo.com. I would like to put it on my little recorder for my worst days.
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  • borntosurvive
    borntosurvive Member Posts: 213
    edited August 2012

    Thanks Lory for the amazing video.  I do love that song and what a great way to do it.  That young girl is so brave.

    Thanks Ladies for the stomach advice.  I've been done chemo for 4 months now but my stomach still acts up every so often.  It was SO bad on the metformin (trial) that I had to stop the drug for a week and I had no issues.  I've had a few bad stomach moments since restarting but nothing like before.  I think I might keep a food journal so I can pinpoint better what sets me off.  

    Had a great workout with my DH today and soon going to prepare dinner for friends who're coming over tonight.  Tomorrow I am off to Buffalo with my bestie for a night away and shopping trip.  Love to you all xo

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  • OBXK
    OBXK Member Posts: 791
    edited August 2012

    Tazzy - I hope everything goes well at the BS today!!! Holding your hand...



    Lory - can't wait to get on my desktop to play the song. I could use a little pick me up.



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

    On it's wa DG.. hope it works

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  • OBXK
    OBXK Member Posts: 791
    edited August 2012

    Dawn - thinking of you - hoping you and your MO are coming up with the plan that kicks ass! Positive vibes headed your way.

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  • onvacation
    onvacation Member Posts: 1,344
    edited August 2012

    Lory - love the video!  thanks for sharing!

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  • JAN69
    JAN69 Member Posts: 947
    edited August 2012

    Tazzy-Fingers crossed by good report from BS today.

    Born & others - I never considered my GERD (heart burn) was a SE of chemo, but after reading here, I'm guessing it must be!  Back to Prilosec, after trying to tough it out with just Pepcid.  Glad you brought it up. 

    Still concerned for Inmate. 

    Luv - Thinking about you, Luv, and your new regimen. Best wishes that this time it's a winner. Where do you go in Hawaii?  I've spent a lot of time in Kauai, in fact was last there in January.  Oh those islands are heaven.

    Annie, I'm concerned about you, too.  And your dear Mandy.  Think of you often.

    I finally got up the courage to call BS to get "surviving" breast removed.  As far as I know, it has no problems, I just want to go flat on both sides!  Hate those forms and bras.   Appointment is next week.

    Hoping all of you find some joy today.  Jan

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

    My good thing today-I went to Costco. I was able to do major shopping, including a big bad of dog food. I loaded everything into my car and then into my house. Why is this my good thing? Because it seems a short few months ago I went to Costco to get dog food only and I was so weak I had to have help getting it into my car! I cried on that day, as I was so discouraged that I was so weak from chemo. Now I am getting closer to being back to my old self, still have a ways to go, but much better than I was.

    Oh, my good thing yesterday, my sister got a job!!!!! WhooooHoooooooooo!

    I am starting to have bad leg cramps at night, must be the tamoxifen:( I have my ct scan next week. Double :(

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