Calling all TNs

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  • TifJ
    TifJ Member Posts: 1,568
    edited February 2012

    Sorry Bak- I just reread one of her posts and I see that you do know. If you talk to her please send her my best!

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  • LRM216
    LRM216 Member Posts: 2,115
    edited February 2012

    Cocker spaniel:

    Just know what your feeling is normal, I'm sorry to say.  I got hit really bad throughout my chemos but had to keep working.  There is a light at the end of this tunnel, I promise.  You can't see it yet, but it will be there.  Hang in there and keep looking at Kristy's post of the caterpillar!

    Wishing you all the best,

    Linda 

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  • christina1961
    christina1961 Member Posts: 736
    edited February 2012

    Cocker Spaniel, (I chuckle every time I type that - cute name!)

    Please don't be hard on yourself.  Everytime I am about three days out on chemo I am full of thoughts like "why did I think I could survive this?" and "nothing is going to work..." etc.  You probably can't reduce the amount of steroids they are giving you with this chemo, but when I went into this clinical trial (and didn't have a taxane drug) I asked them to reduce the decadron because I crashed so hard and got depressed when it wore off.  It has helped.  I've never been a big fan of distraction because I am kind of a workaholic and always want to be productive, but I have used it as a coping mechanism during my treatment and it has really helped.  Anything you can do to just get your mind off how you feel for a little while will help.  I did everything from playing Angry Birds to Mahjong  to reading true crime books online - anything I felt would take my mind away from cancer and treatment and didn't require any great amount of brainpower. I was lucky enough to be able to take about a week off after each infusion as I have my own business but I worked throughout treatment and even walked during my TAC treatment during the recovery periods.  This time around I haven't walked much at all.

    Please keep posting and talking to us.  We have all been there and understand. 

    Bak, I would definitely push for more chemo if it is an option and you feel up to it.  I am glad I did this trial.  I'm already on the hunt for some kind of vaccine trial option but I didn't test even 1+ for HER2 so cannot qualify for the big MD Anderson vaccine trial.  I have almost cut out all sugar from my diet for now and plan to start walking regularly as SOON as I feel better from this final round of the sea sponge chemo.  My sister made me a sea sponge necklace (actually synthetic) to wear to chemo yesterday!!  Smile

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  • BernieEllen
    BernieEllen Member Posts: 2,445
    edited February 2012
    A guy walks into a bar with his pet monkey. He orders a drink and while he's drinking, the monkey starts jumping all over the place. The monkey grabs some olives off the bar and eats them, then grabs some sliced limes and eats them,then jumps up on the pool table, grabs the cue ball, sticks it in his mouth and swallows it whole.
    The bartender screams at the guy, "Did you see what your monkey just did?" The guy says, "No, what?" "He just ate the cue ball off my pool table - whole!" says the bartender. "Yeah, that doesn't surprise me," replies the patron. "He eats everything in sight, the little twerp. I'll pay for the cue ball and stuff." He finishes his drink, pays his bill, and leaves. Two weeks later he's in the bar again, and he has his monkey with him. He orders a drink and the monkey starts running around the bar again.
    While the man is drinking, the monkey finds a maraschino cherry on the bar. He grabs it, sticks it up his butt, pulls it out, and eats it. The bartender is disgusted. "Did you see what your monkey did now?" "Now what?" asks the patron. "Well, he stuck a maraschino cherry up his butt, then pulled it out and ate it!" says the barkeeper.

    "Yeah, that doesn't surprise me," replies the patron. "He still eats everything in sight, but ever since he ate that damn cue ball he measures everything first!"

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  • Huskerkkc
    Huskerkkc Member Posts: 536
    edited February 2012

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  • Huskerkkc
    Huskerkkc Member Posts: 536
    edited February 2012
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  • Huskerkkc
    Huskerkkc Member Posts: 536
    edited February 2012

    Hmmm...was trying to get the quote a little bigger, but it wouldn't work...sorry for the small size but the sentiment is sincere.

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  • CharB22
    CharB22 Member Posts: 310
    edited February 2012

    I finally finished reading all the posts - wow - cried and laughed through a lot of them.

    LJ - your landscaping is gorgeous!! I can't wait to go outside and get my hands dirty. I've got 4 bags of mulch waiting in the driveway!!

    Inmate - I'm speechless. Such courage. Gorgeous. Wow. I dabble in photography and have sold a little on some stock photo sites, so I can appreciate how difficult those shots were - wow, again. I can't wait to be finished with treatment so I feel like shooting more.

    I just finished my 3rd AC and it knocked me on my butt. My WBC dropped again to .43 even with the Neulasta shot. MO put me on anti-biotic again - just in case. I've got 2 boys in school so who knows what kind of germs they bring home. I've quarantined myself again, which sucks because I'm missing a baby shower today and my son's hockey game. I hate this disease!! MO says I feel awful because of the superlow WBC, low RBC and crappy crappy chemo. I'm dreading and looking forward to Thurs - my final AC!!! MO says Taxol will be a walk in the park after this. I sure hope she's right. I WANT MY LIFE BACK!!!!!

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

    Thank you for your advice and kind thoughts.  Today seems a bit better.  Yesterday was the first day I have cried since being told the news so maybe I needed it.  Today still constipated but have taken a pill.  The bottom half of my body feels like lead for some reason especially around the groin.  Have any of you had puffy ankles and puffy on the top of your feet. Maybe its all the extra water, I don't know, just that I read somewhere it could be something to do with your heart.  Geez this is a journey and I have only just started the first km.   The pictures of Dick and the puppy are priceless though. 

    Inmate your photos were just beautiful.I could only think of one word for them LIFE. 

    LRM216  I think Dick is the last thing on my mind at the moment although my husband probably wouldn't think so.

    OBXK I hope you enjoyed your little house and garden today.  Sounds idyllic. 

    Laura I will keep your picture in my mind cause it reminds me of spring and my chemo (please god) finishes in the spring. So its something to look forward to.

    Thank you for all your kind wishes guys. Will never forget this. 

    Annie            

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  • OBXK
    OBXK Member Posts: 791
    edited February 2012

    Bernie - Busted! Thanks for the laugh.

    Annie- I hope you feel better soon. I took a stool softener everyday, for the week I had chemo.

    C1961 - thanks for the good thoughts.



    So sorry to hear about Blondlawyer!







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  • OBXK
    OBXK Member Posts: 791
    edited February 2012

    Bernie - Busted! Thanks for the laugh.

    Annie- I hope you feel better soon. I took a stool softener everyday, for the week I had chemo.

    C1961 - thanks for the good thoughts.



    So sorry to hear about Blondlawyer!







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  • LRM216
    LRM216 Member Posts: 2,115
    edited February 2012

    Cocker_Spaniel:

    Yup - I had puffy everthing!  All that is normal.  Just remember to stay ahead of everything.  If you're constipated and one pill doesn't do it, take another (my onc had me double all the over the counter laxatives as the ones I was using were like Senokot, etc (natural types).  If you should REALLY get badly constipated, many gals have to resort to one of those little plastic medicine cups of milk of magnesia mixed with same amount of prune juice and microwaved.  I wish Mary was here to be a part of all our posting as she had a "magic" something she used for constipation and swore by - it was called MAG (I think some number after it - anyone remember???).  Anyway, hang in there - this really, really will have an end to it.  My heart goes out to you and all the others going through chemo - it's something one just never forgets.

    Hugs,

    Linda

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  • LRM216
    LRM216 Member Posts: 2,115
    edited February 2012

    Kristy:

    Loved the last affirmation - it sure says it all.  Now, if I could only learn to appy it, (sigh)...... 

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  • OBXK
    OBXK Member Posts: 791
    edited February 2012

    Annie, I would cry like a baby on day 3. My M.D. Dad, explained that the steroids they give you, cause water retention, including in your brain, which can make you feel emotional. I then felt better, knowing it was just my brain on drugs. If it happens again, it could be the same for you. Hugs!

    DX 2003 IDC - lumpectomy, TAC X6 - rads 50.4 grays.
    DX 12/10 TN - dbl mx , 5 rounds T/C
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  • bak94
    bak94 Member Posts: 1,846
    edited February 2012

    Hi Tif, I will if I hear from her. I miss her coming to the boards, I know she has alot going on. She will probably come back when she feels like up to it.

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

    Christina, I think I will push for something, not sure what. He did mention putting me on herceptin, but don't know if insurance would pay for that as I am her 2 neg. I don't think I can get into a study with that one, I think my stage is too high. It's just I had so much time between chemo and rads I feel like some cells may have escaped and traveled, even though I had a complete response you never know where some cells might be hiding. I have to work on the sugar thing. I am so addicted. I also need to lose alot of weight. I was reading a paper on metabolic syndrome and triple neg cancer-I will post it. I haven't read the whole thing yet.

    http://www.hindawi.com/journals/ijbc/2012/809291/

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

    BAK94 your post on metabolic syndrome is interesting.  I have always taken lots of sugar in my coffee for instance and would not think twice  about having 3 nearly four spoonfuls in my coffee. Just before I was diagnosed my GP told me I was borderline for diabetes.  I also have high cholesterol and they are going to test me for the BRAC1 gene.  I wonder ............  I also wonder where Metformin comes in as thats for diabetes.  Annie   

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  • mccrimmon324
    mccrimmon324 Member Posts: 1,076
    edited February 2012

    CS - The steriods always made me sad and depressed on day 3 when I stopped taking them.  I remember the 3 day after my first treatment I must have pee'd 20 times before it was time to get up in the morning.  I retained so much water on them.  By the end of treatment I would come home from work everyday and immediately lay down with my feet up because they were so swollen.  Thankfully I never had the constipation but I ate a ton of fiber, figs, prunes thruout treatment.  Just take one day at a time and you will get thru this! 

    Ladies, I took off 1 day and had to catch up on 4 pages!!

    LJ - I absolutley love your landscaping.  It's so peacefull and serene. 

    BAK - I say your stage 3 AND you had a 100% complete response, just keep focusing on the positives.  I would definitely ask to see your last scan, I think it will help to get the other image out of your head.  I'm a head in the sand kind of girl.  Still too terrified to read my pathology report or find out what my recurrance rate is.  I figure there is nothing I can do about it so why should I stress myself out and give myself anxiety.  Try to eat healthy but have to get better at staying away from the treats and I've got exercise down pretty well. 

    Friday morning I went for some bloodwork for my physical coming up. I mentioned having had chemo, and the nurse said to me "that's fabulous, how long have you been cancer free?".  It was the first time anyone had phrased it that way and it felt great! 

    Hopefully, the highlight of my week will be a lunchdate with hubby.  He has a morning dr. appt and will drive up to my work (an hour away) to have lunch at this fabulous indian restaurant we found.  I'm really looking forward to it.  Just have to stay away from the Naan!!

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  • mccrimmon324
    mccrimmon324 Member Posts: 1,076
    edited February 2012

    Bernie - I loved that pic! 

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  • Sugar77
    Sugar77 Member Posts: 2,138
    edited February 2012

    I had to be tapered off the steroids after round one.  I had a huge crash at day three and the tapering for subsequent rounds really helped a lot.

    Bernie - OMG that photo was hilarious!! 

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  • CharB22
    CharB22 Member Posts: 310
    edited February 2012

    Bak94 - thank you for the link. It's interesting because my BMI is 29 (almost obese). I need to drop about 35-40 lbs. I had gestational diabetes when I was pregant with my first. I always thought that if I didn't get my weight under control, I would get diabetes, not BC. This paper has affirmed even more for me that when I'm done my treatment, I need to do some serious life changes - especially with exercise - this is pulled from that paper:

    While physical activity prior to diagnosis had no effect on breast cancer deaths across all patients, physical activity after diagnosis reduced breast cancer deaths by 34% and disease recurrence by 24%. Postdiagnosis exercise only provided significant benefits for patients with BMI ≥ 25 kg/m2.

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  • laurajane
    laurajane Member Posts: 321
    edited February 2012

    Good morning ladies. I have some catching up to do on posts but I first want to say



    Cocker spaniel- has anyone told you about how important it is to drink lots of water. I was told that puffy ankles and feet can be a sign of something wrong with the kidneys. I don't want to alarm you but I suggest you call your onc and let them know. Everything is probably fine,

    but please make the call just to be on the safe side. How does your urine look? Are you urinating regularly. Again, I don't mean to sound like a mother hen here, just concerned.



    Heidi- that was so sweet of you to share the photos. Thanks to all of you for the sweet compliments on my landscaping.

    I get to get another MRI on my shoulder and I'm pushing for a bonescan my tailbone has been hurting for the last month or so and now the pain is moving down to my left thigh and lower back. I'm hoping this pain I've had this weekend is from my neuprogen shot although I did take the claritin and Zantac before like I've done in the past.



    Hope you all have a great day.



    Laura

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

    I just spent the morning cooking Bacon & Liver treats for my two Boston Terriers and, like a good mother, I let them lick the bowl & beaters afterwards.

    Heded to the porch now to spend time by the wood-stove with the pussies. Have to divide my time equally.

    Tomorrow is a carriage driving day.

    https://www.facebook.com/media/set/?set=a.3317824867812.159012.1333956826&type=1&l=02001f8c8c
     

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

    My house smells yummy! Just spent the morning cooking Bacon & Liver treats for the pups. And yes, I let them lick the beaters and bowl afterwards!

    Headed out to the porch now to sit with the cats and read by the wood-stove.

    Tomorrow is a carriage driving day.

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  • christina1961
    christina1961 Member Posts: 736
    edited February 2012

    Oh, sitting by the wood stove sounds wonderful!  I bet the cats love it.  I have a cat on either side of me right now. Guess I am the heater for them.

    Bak, thanks for posting the article!  Very interesting- I am still confused about the benefit of exercise for triple negative but I know one onc I saw said minimum 3 hours a week and low fat diet is protective against recurrence.  My local onc told me no sugar so I am trying - not sure if massive quantities of sugar free fruit popsicles are good or bad, though.Smile My BMI has stayed around 22/23 for the past several years and for most of my life.  I had one year where it was higher than that.  When I was really fit several years ago it was lower.  I had a child early but breast fed, don't drink and haven't since age 23, and haven't eaten meat or chicken for several years.  I do eat fish and shellfish. I do have a lot of stress in my life (working on reducing that, too) and have been very sugar dependent for several years - long hours at work with sugar to boost energy.

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  • christina1961
    christina1961 Member Posts: 736
    edited February 2012

    CharB,

    You should be feeling better soon!  When my WBCs got really low I felt like total crap.  Just hang in there, it really will be over before you know it! 

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  • laurajane
    laurajane Member Posts: 321
    edited February 2012

    Oh, Heidi, I wish I was one of your pups this morning. I love liver with bacon. I don't know why I only fix that once a year. Christmas day brunch I cook chicken livers with bacon and mushrooms. Yum. I was taking to my daughter about how much I love brunch and she does too. So today she is making quiche with bacon, spinach and shitaki mushrooms. She make the crust and it is the BEST! We are having LJ's famous bloody Mary's , listening to regae music and having a great time.



    I spoke with MBJ this morning. She is still in the hospital. She is so thankful for the laptop and wanted to let everyone know how much she appreciated it. Her cancer has metastasized to her bones in several places, spine, shoulder and liver mets. Her liver lesions are small which is great. She had surgery this week on her spine. Her cancer has changed to high in estrogen and she will be starting tomoxifen this week. She is in a lot of pain but happy about the miracle of her now high in estrogen there is hope. I am hoping to feel up to going down and seeing her this week. She is excited and i will be happy to see her. A friend of mine has offered to drive me down with a

    mandatory stop at the Zappo's warehouse. My friend has been to the warehouse many times and has gotten fabulous deals on shoes like $15.00 for a pair that would regularly cost $200.00. This shopping trip sounds like it may help me more than morphine. LOL

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  • TifJ
    TifJ Member Posts: 1,568
    edited February 2012

    Laurajane- I sure hope you get to see MBJ this week. Please give her a giant hug from all of us! I had no idea that when the FC metastasized it could change from - to +. That is at least some good news for her.

    The shoe shopping sounds fabulous!

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  • OBXK
    OBXK Member Posts: 791
    edited February 2012

    Heidi - sounds like a wonderful day. It's raing cats and dogs here on the NC coast.

    LJ - what a great friend to drive. Sounds like a great day to look forward to. Hugs to MBJ - wonderful news on the hormone change. Sunday brunch - is my favorite meal. Yours sounds lovely.



    CS Annie- Hope you are still on an upswing.



    Hugs all around!

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  • Suze35
    Suze35 Member Posts: 1,045
    edited February 2012

    Hi guys - still feeling fuzzy but trying to keep up!



    Laura - enjoy your visit with MBJ and send her my best wishes. It is so odd to say this, but Yayyyy! to the ER status change! That opens up so many options for her, and all I can think of is Kathy Rich, 18 year Stage IV survivor! Hopefully Mary can get online soon and say hi. This reminds me that I have to be sure and have my hormone status checked on the fluid they took from my lungs...



    As for you - I'm so jealous! A day at Zappo's warehouse? Heaven! you've earned those "wings" my dear.



    Heidi - such a contrast in days from LJ's - but I'm just as envious! I'm this odd mix of country/city. Enjoy your carriage ride!



    Bak - focus on the response you had to chemo, I think that is truly what is important. I have NO scientific evidence to back up my next statement, and am probably wrong, but I believe that a small percentage of Stage IV TNs CAN be cured, because they can respond so well to chemo. I hope I am right, especially for you. Hang in there.



    ~~~~~



    My feel-good of the day - my oldest son (10) went with my dear friend and her sons to go snowboarding in Vermont for the weekend, his first time snowboarding AND his first sleepover - sob! He's growing up so fast.



    Have a good night everyone!

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