Calling all TNs

Suze35

Kathy - thinking of you and hoping all went well with your appointment!  Fingers crossed it is just something simple related to your recent surgery...

tracie23

I have a question.... Are you still triple negative even after you have had your breasts removed , had chemo etc...can another cancer come back and not be TN ?

Luah

tracie: Anything is possible: recurrence of the same TN, a new primary that's TN, a new BC that's something else... or, as in the majority of cases - NED.   

Paintingmywaythru

Kathy...hoping your appointment went well and all is OK. Hugs!!!

And on another note...ARGHHH...we were supposed to get our commitment letter today from the buyer of our house but she was slow with her insurance binder so it is postponed until Tuesday...still supposed to close on the 28th

Susan....Melting Pot...I don't know it but would love to go...

KSteve

Well, I think all of your positive thoughts and prayers worked . . . my ONC thinks the lump is the top of the implant.  He was very confident it wasn't a problem.  He doesn't need to see me back for another 6 months! That side does continue to change and tighten due to the rads, but it's strange that it wasn't there one day and appeared the next.  I check my upper body every morning while soaping up in the shower.  I trust my ONC completely, but I will feel better when I confirm with my PS when I go in to get stitches out of the new nipples on Tuesday. 

This was my first glimpse of what my future holds . . . every new ache, pain, lump or bump makes you sick to your stomach!  Time for a deep breath and I will sleep good tonight!  Thanks again to all of you wonderful ladies that are always there to support, no questions asked.  Happy Holidays everyone!

Kathy  

Survivor2Be

I want to ask your guys opinions: I'm going thought this for the 3rd time in 15 months. Time1: triple negative, breast recurrence: HER2 positive, brain nets: triple negative.



What do I call myself? Triple negative? Melting pot (and not a good one like the restaurant!) HER2+?



I know overall it really doesn't matter, but I just like to be consistent!

Titan

Ksteve..thinking of you lady!  I hope that lumpy thing was just FAT!

About the lifetime limit of AC...after my 4th treatment I asked if that was my limit and the nurse said no...I guess that is a good thing..if I ever need it again.  I may be a weird one but for me..the AC wasn't that bad...took the emend..never felt sick...maybe felt a little high..couldn't sleep very well...a little metal mouth...the neulasta shot was what bothered me the most ( and I know..I know..I keep whining about it..but I still think about that damn thing..I just hated it)... taxol bothered me the most..I didn't have the "high" or the metal mouth or nausea but my body just hurt...if I sat for too long I would have to work out the aches and pains..walk around like an 80 year old woman..my bones just literally ached and ached...

Ah well..chemo sucks but being tn we gotta do it...sometimes I feel that the chemo time was all a dream..(or nightmare)...and that the whole entire BC thing was a nightmare...but then something will jolt me back into reality...

My onc said that with some cancers..like colon..once it is gone after a certain amount of time..it will not come back...He said that he couldn't promise me anything with breast cancer..I sure wish we could say that we are cured after a certain amount of time..dang it.

Guess we will all be hanging here together forever...and that's ok...

mccrimmon324

Kathy, great news!!! 

Melting Pot, think we had one up near Philadelphia but never got a chance to go, none down here in florida that I know of.  I've heard they are excellant.

Hope everyone has a great weekend. 

mitymuffin

Suze, I'm sorry you are having trouble sleeping. That makes everything harder.

Sugar77

mccrimmon324 - I went to Melting Pot in Orlando (Sand Lake Road) when on vacation a few years ago and another time in St. Petersburg, for New Year's Eve.  Not sure how far you are from Orlando or Tampa area but there could very well be one near you.  It's definately worth going.

Hello to everyone....hope you all have a great day! 

bak94

I am another odd one, ac was a bit easier than taxol or abraxane. At first abraxane was fine, but towards the end of my 12 treatments I felt awful, and still have numb fingers and toes.

Susan-Between my 2 diagnoses I did 10 treatments of ac. Remember the last time I did A on a 24 hour drip? Suppose to be easier on the heart and more effective, at least according to my doc, who tends to do things just a bit different. It was inconvenient being in the hospital every 2 weeks, but I was forced to relax! ANd everyone was so nice. I am curious as to what your doc, or any other docs would say about the 24 hour drip thing! Kinda afraid to know.

mccrimmon324

Sugar - I live about 2 hours south of Tampa, but I have a friend that lives close to Orlando, maybe the next time I go up for weekend I can request we go there for dinner.  My birthday is coming up in January, maybe I can use that as leverage to go. 

Question ladies, Now that chemo and radiation is over, I'd like to start back on vitamens.  What types does everyone take.  I know D3 is very important, I take a One a Day that has D3 in it and I'm starting supplements for joints again but it has Tumeric in it so that's more important to me know.  Also, what about Idodine, does anyone take??  My next/first follow up isn't until January and I don't want to wait if I can be doing something now.   

ksmatthews

I take a iron pill and and a 5000 iu of vit d3 daily.  Is there something I can take to help with the muscle weekeness and stiffness?

mccrimmon324

Ksmatthews - Is muscle weakness & stiffness normal?  I've read that exercise helps lower the risk of recurrance so I've been going a little nuts and doing cardio for over an hour everyday.  OMG!!  When I get up in the morning, I literally shuffle around like an 80 year old woman, I work behind a desk and everytime I get up I'm so stiff for a few minutes.  I'll be 12 weeks PFC on Tuesday, just wondering if Chemo still plays a part since I never really had problems during chemo. 

ksmatthews

Mc I assume it is, when I was exersizing that is what I thought it was, so I backed down on that and I am still like that.  Yes I work at a desk too and when I sit for awhile when I go to stand It takes me a few min. then I am fine.  I tried to look on internet to see what I could find out, but was unlucky finding anything.  I am pretty sure I heard someone say that it is normal.  I forgot to ask my dr, the last 2 times I have saw her.  

Titan

Oh yeah...it is normal...

LuvRVing

I am taking Calcium with Vit D3 (1200 mg of Calc and 1000 iu of D3) plus a separate 2000 iu of D3.  My MO tests my D level and my last one was 69.  I am also continuing on the prenatal vitamin to support my iron/folic acid needs.  I'll take them until they are gone, then that should be adequate.  I have been taking b6, acetyl l-carnitine and l-glutamine for neuropathy, but I am stopping them as I run out. I don't seem to have any neuropathy, so I think I am in the clear. 

Anyone taking metformin to prevent a recurrence?  There are many current clinical trials in Canada and the US.  I already take it because I am diabetic.  You might talk to your MO or your PCP about it, especially if you are overweight or have a fasting blood sugar above 100.  The side effects are minimal (a bit of GI distress when you first start) but the long range effects, especially for TNs, could be the alternative to AIs or Tamox that we so desperately need.

http://www.cancer.gov/aboutnci/ncicancerbulletin/archive/2009/092209/page3

This one is coming soon:

http://www.clinicaltrials.gov/ct2/show/NCT01471106?term=metformin+and+breast+cancer&rank=7

This one is ongoing:

http://www.clinicaltrials.gov/ct2/show/NCT01101438?term=metformin+and+breast+cancer&rank=6

There are about 15 different trials using metformin... they are on to something.

Michelle

mccrimmon324

What is your Vit. D level supposed to be?

I asked my onco about metformin and he said no, but I plan on asking him again in January.  I'm swear this time I'm going to be prepared with a list for him.  Usually by the time my appointment rolls around my anxiety is so bad I forget everything I wanted to ask him. 

And Chemo Brain doesn't help!  When does that clear up??

LuvRVing

LOL, McCrimmon!  I keep saying that "I" didn't get chemo brain, but my DH sure as heck did!  And it shows no signs of going away! 

Your D level should be above 40. 

My first onc didn't think much of the metformin trials, either.  But my later ones all told me I was taking the right drug.  So if I were you, I'd print off the info on those trials and hand it to him.  And if that doesn't work, get your PCP to check your fasting blood sugar.  If it's even one point above 100 and you're the least bit out of the normal BMI range, ask for it. 

TifJ

Ladies- my last chemo was Dec. 30th last year. I still get up and feel like an 80 year old, have horrible hot flashes and have, oh what do you call it- oh yeah, chemo brain!! I am ready anytime for this all to get better!!

mccrimmon324

Tif, The hot flashes are the worst!!!  Thankfully they gotten slightly better for me.  During Chemo I would wake up in the middle of every night soaked thru to the mattress, it was terrible!! 

I think the loveliest side effect chemo has left for me is SNORING!!  OMG!!!!  My poor hubby has been forced to sleep on the couch countless times, and again last night.  I don't know what to do about it.  I've woken myself up a few times and have heard how loud I am.  It's embarrassing.  How long will this last, I never snored this bad before.    

LuvRVing

Hi TifJ!  Sorry you are still feeling so crappy!  I thought we were supposed to feel better after a year...lol!

Are you still seeing the same MO?  Wondering how he is doing...

Hugs,

Michelle

Anonymous

I felt like an 80 year old woman for about two years after treatment. I was beginning to despair but, one day I just began to notice that the aches and pains were gone. Really gone! That happened sometime during this past summer and I am looking forward to telling my onc at next Tues appoinment. He'd told me the effects were (most likely) permanent. Wrong!

MBJ

Not posting much-one hand typing! Got a cortosone shot today & new excercises to do--praying I get my arm working again.  Hurst so much, much worse then chem, surgery -- nothing as bad as a frozen shoulder, if that's what it is.  Got some new meds for it, too.

mccrimmon:  Vit D3 -- needs to be taken with food for absorption.  40's is low -- 80's is best and the ideal.  I take 8000 a day.  For info on Iodine, go to breastcancerchoices.org.  Anyone can take it as long as you are not hyper-thyroid.  I take 12.5 mg a day and my other breast remains clear. It's important to take the other support supplements that go with it.  Just go to the site and look up Iodine.

TifJ

Thanks Heidi! Gives us some hope!!

MnCrimmon- I sleep with my mouth hanging open- so no snoring, but my husband has been sleeping on the couch for a while because he snores so bad!!

Michelle- I don't feel bad, just the achy old lady feeling! Will be seeing Dr. Monaghan on the 29th. He was doing well in Sept. after his recurrance.

TifJ

MBJ- had my last PT yesterday for frozen shoulder. It only took 10 months! HA! The medications I was given did nothing to help the pain. It was about 7 months before I finally started seeing some real movement without intense pain. I hope you get some relief soon- it truly is a miserable situation!

Suze35

Painting - the Melting Pot is a fondue restaurant - wine, cheese, chocolate, meat/seafood - very indulgent .  DH and I go every few months, sometimes just for the cheese and chocolate, yum!  There is one in Burlington, so we'll definitely meet up on one of my chemo off weeks.

If anyone else is in the area - NE Mass - maybe we can do a group thing?

mccrimmon - it is a GREAT place for a birthday dinner - definitely check it out!  The meal is so relaxing, a good 2-hour event, and I just enjoy the whole fondue aspect of it.  It isn't a cheap date, but so worth a birthday.

MBJ - I'm sorry to hear your shoulder is still giving you such pain!  I've never had a cortisone shot, but they scare me!  My mom had one recently for her hip, and she said it really helped.  I hope you get some relief soon.

bak - I'll have to ask my MO about the 24-hour drip.  She can be very outside-the-box, so she might be up for it.  AC kicked my behind, so I would have to really think hard before going back to it.  I know it would be a more reduced dose, and I suppose if I could get another 6 months out of it without TOO much reduction in QOL, I would give it a go. 

Kathy - GREAT news on the lump.  Being so close to surgery, I thought it was probably related.  I'm sure your BS will give you the final reassurance.

mitymuffin - thank you for your thoughts.  Sleep has been tough, especially since I'm weaning from the steroids.  It has screwed with my schedule.  The worst is that I wake up at 4:00, and then get on my iPad and go shopping, LOL.  With all the good deals these days, my kids now have their Fall, Spring and Summer wardrobe for next year!!  My MO told me to up the Ativan, and don't be a hero, so that has helped.

Titan - you know, I'll take that as an upside, that we will be here to support each other for good.  It is amazing how much you all have helped me through this, and it will NEVER be forgotten.

TifJ - my DH sleeps on the couch these days also due to snoring.  It kind of sucks, I miss having him with me, but since he travels anyway, I'm getting used to it. 

Survivor2Be - its crazy how this stuff just changes!  Are you getting Herceptin along with the chemo?  Regardless, you are more than welcome here.

LuvRVing - I actually have a bottle of Metformin that I was going to start taking when I found out my cancer had returned.  I am going to talk to my MO and see if there is still any benefit to taking it while Stage IV... I just got off a clinical trial, so I couldn't use it before.  I'll have to investigate it a bit...

~~~~

Good "moment" for the day - my oldest son brought home his progress report from school, and he has worked so hard and really improved his grades.  He has mild ADD (we aren't medicating him, but rather using behavior modification techniques), and with everything going on at home - I am so very proud of him, as he now has all A's and B's. 

Have a great evening everyone!

Survivor2Be

Suze35: I am so happy to see you pairing and doing well!! I feel like our paths have been slightly similiar! I know how difficult it is to manage 3 kids during treatment since mine are the same ages!!! I am on herceptin and tykerb for the brain mets. I start whole brain radiation next week and then chemo soon. I got a molecular profile to find out which chemo's would work the best (dr oshanessey is my referral doc). I think I'm "barely" HER2+, but I'll take any drug I need to!!

Are you doing any alternative/complementary treatment, like diet, exercise, acupuncture, etc? What vitamins do u take? Trying to learn about the things I can do myself to manage this damn disease!!

Best of luck, TONS of prayers for you and your family. <<<HUGS>>>

MBJ

TifJ: From what I read, there are 3 phases of frozen shoulder.  I am in the second phase and have been getting gradually worse.  I am hoping the cortisone will help -- 10 months is a long time and it is excrutiatingly painful -- nothing else with BC ever hurt this horribly.  I hope you are truly on the mend for good.  Did you do the cortisone, too?  PT hurts but there isn't any way around it!

KSteve

Ok, so maybe I jumped the gun on my initial good report at my 6 month followup.  I just got a call back from my ONC and my alkaline phosphatise (sp?) level is elevated in my blood work.  Normal is 50-136 and mine is 152.  That can indicate issues with bones, liver or gall bladder, OR it could be nothing to worry about.  They're ordering a petscan for me, but that won't be until sometime next week.  Now I have to admit, I am scared shitless.  Hoping for "nothing to worry about".  I wonder if anything else could cause a raise in that level?  I'll be trying to think positive over the next few days, but I sure do dislike this part of the journey we are all on!

Kathy