Calling all TNs

TifJ

Yodie- PM means private message. Just click on the members name and it takes you to their page, then click on -  send member a private message.

Lynn- I am 20 months PFC (post final chemo) and I still have the "old lady" issues. I will be 47 in Oct. It is better than right after chemo, but I still don't feel like I did pre-chemo. I have never really had any significant neuropathy, but the palms of my hands burn when I wash dishes using a srubby sponge in warm water. Weird!!

OBXK

Luv - great piggies!



On the old lady joints - I jump down from my SUV, as if I still can. I've almost fallen on my face a few times :O.



Lynn - I have three numb toes from 2004 and hand issues 16 months out, this go around. I wish I had taken all the drug precautions Luv did!

JAN69

Luv - Love those toes! Mom and Daughter no less.  Isn't great when moms and daughters like to do things together.  It made we think about when my daughters went to the same high school I taught at.  Two of the three didn't want to be seen with me.  Third one came to see me for money.  They all turned out to be fine productive citizens, but there were years.......          Jan

mags20487

yodie...to prevent Le there are several things to "avoid"  Check out the LE section on this website for more but here are the ones I can think of off the top of my head

*no hot baths or showers-extremes either way in body temp can cause a flair*

*do not carry a purse on that side or on you shoulder

*do not lift more than 10lbs above your head with affected limb

*careful of any cuts, scrapes, nicks, bug bites etc in the affected limb

there is so much more I know these are just the basics I can remember.  there are some great threads about LE here too

Maggie

borntosurvive

Quick (and personal) question ladies......I have had SO many yeast infections since finishing chemo.  Anyone else?!  Could it be from the metformin?  Cells just going back to "normal"?  Thoughts?!

LuvRVing

Borntosurvive - have you had your blood sugar checked?  High glucose levels are notorious for causing yeast infections.  I've been on metformin for 10 years and never had one.  But that doesn't mean it is impossible.  Has your doctor cultured the infections to try and determine what's causing them?

lisadi1963

Hi everyone. I don't post a lot but I am a stalker! Love to read everyone else's stories. I'm just over 4 month pfc and I still have some neuropathy in my hands and feet. Does anyone no if there is a vitamin or something I can do to help get rid of this. I will tell you that is a lot better than it was when I was doing chemo.



Thanks and I hope everyone has a great long weekend.



Lisa

Nuan

Lisa--Hi I am a stalker too. My chemotherapy ended 13th June and 25 rounds plus 5 boosts was over last Monday. I started having neuropathy in hands and fingers joint pain a month post finishing chemo. I keep exercising..walking/soft jogging 60 mins evening. I feel a lot better about neuropathy now but joint pain in my fingers are still on and off..

NavyMom

BornTS: I have been on Metformin since May and have not had any issues with yeast infections. Agree with Luv, to get into your gyne for proper dx since other infections can mimmick yeast symptoms.

As for the creaky old lady joints.....Trying to stay active(easier said than done) seems to help and the further PFC you get the better.  I know it took at least 12 to 18 months to feel closer to "normal" Although it is a new normal because aftet all tx your body is just not the same.  And for better or worse neither is your mind and spirit.  All things need time to heal and recover.

For neuropathy sufferers and LE,  There will be others to come along with advise to help you.  Lots of info here with smart caring women.

Have a nice Sunday all.....Going to Toby Keith concert tonight.  Hope the rain stops for awhile.

onvacation

I still have numb toes and it is annoying to say the least!  It doesn't really hurt, just a weird feeling and hard to wear heels.  I am taking B complex and glucotime but not sure it is really helping.  My fingers were numb, but that seems to be improving with time, hoping the same for my toes!  I am 2 months PFC.

LuvRVing

Those of you with neuropathy might try Vit B6, L-Glutamine and Acetyl L-Carninitine.  Here's a link to a clinical trial related to neuropathy during chemo treatment:

http://clinicaltrials.gov/ct2/show/NCT00775645?term=breast+cancer+and+neuropathy&rank=1

The trials are occurring in almost 300 locations across the US.  If you are about to undergo treatment with a Taxane, it might be worthwhile to check it out and participate if you are able.

Wrenwood47

More good news from Life Extension for us TN's. Long article but this was the news I wanted to share...do looks like we don't have to worry so much about our weight and recurrence.

Women with hormone receptor-positive cancer who were obese or overweight but receiving optimal chemotherapy and hormone therapy had a 30 percent higher risk of recurrence and a 50 percent higher risk of death when compared with death rates for women of normal weight who had breast cancer. No elevated rates of recurrence or death based on weight occurred in women with two other types of breast cancer, HER2 receptor-positive or Triple Negative, both of which are aggressive forms.  

Click on the following link for the complete article.

http://www.lef.org/news/LefDailyNews.htm?NewsID=15063&Section=NUTRITION&utm_source=DailyHealthBulletin&utm_medium=email&utm_term=Nutrition&utm_content=Body+ContinueReading&utm_campaign=DHB_120901

JAN69

Wrenwood - Thanks for the Life Extentions link.  It adds a bit of comfort while I keep trying to lose weight.

OBXK

Luv & Wrenwood - thanks for the info.

belleeast

obxk,thanks you for the welcome. mumtobe,my mo says no scans unless i have symptoms.

LRM216

I am three and a half year out now, and suffered miserably from numb fingers and numb toes due to my first Taxol.  It began immediately after my first infusion of it so onc changed me automatically to the 3 remaining treatments of taxotere.  I had A/C & T and she claimed the taxotere would be gentler on the neuropathy.  It was, as it didn't worsen.  However, it took ages before I regained the feeling in all my fingertips, but my toes still feel somewhat numb and "tight" - almost like I have little stuffed saugages extending from my feet.  I too tried every remedy mentioned - took all the vitamins, etc, but never got a benefit from any of it.  Just kind of resigned myself that this too is just another wonderful gift that chemo left me with.  I never had any pain, but did have that constant "tingly" sensation in my toes that was most annoying.  That finally stopped, but not too long ago.  It definitely has gotten better, and for that I'm glad.  So, for those of you that have finished chemo and still feel the neuropathy, - just hang in there and give it a little more time (like we have a choice!). 

onvacation

LRM- thank you for your post!  My toes are still numb at 2 months out, no pain like you mentioned, just annoying.  I will try and be patient and hope that it improves!

KSteve

Inmate and LUV - I don't post much but I think of you every day and keeping praying that you're both starting the drugs that are going to do the trick this time.



Just wanted to share, mainly for the newbies. This weekend marks two years since I was diagnosed. That weekend went in slow motion, but the rest went by so fast. And here I am, two years later, and just finished planning a vacation to Jamaica in June to celebrate my DD's college graduation! For the first time, I'm comfortable making plans that far out. And DH and I are trying to figure out the empty nester thing cuz our DS just left for college two weeks ago. Now it's just us and our golden retriever, and we've decided that this chapter is gonna be fun! I'm just so grateful.



Thanks for letting me celebrate here!

Kathy

JAN69

Kathy - What a beautiful story.  Thanks for sharing.      Jan

Marianne52

I am getting depressed reading some of these posts especially the one's about "when I'm gone" Where are you going? Are we not in Treatment so we can live? Do you know there are many Women living for year's and year's after being diagnosed with TNBC?

I would hate to think I am dealing with all the nasty side effect's from Chemo only to die anyway. I think we all need to stay positive so we can live. Marianne

BernieEllen

Hi Marianne, we are all positive or certainly as much as we can be day to day.  For me I think it is sometimes natural to think of what could happen especially when we have lost someone.  I know that talking on here about good and bad days is how we help each other.

browerl

Can anyone who has had a total mastectomy with Reconstruction surgery please tell me how long the surgery last and how long is the hospital stay?

OBXK

Kathy - kudos on 2 years!



Marianne - we are all in different stages of our BC journey. This is one of the few places we don't have to plaster a smile on our faces, when we go to the dark place. Here in this group, we once lost 3 beloved friends, in a matter of days.



I'm glad you are in a place of hope!!! Wishing you well...

TifJ

Loretta- I had a single mastectomy w/ reconstruction. My surgery lasted about 2 hours and I stayed overnight. I imagine a double MX would require more surgery time, but I don't know if the hospital stay would be much longer. You know how insurance companies are!

TifJ

Marianne- I don't mean to be rude, but this thread is not just about staying positive and being happy all the time. As OBXK said, we are all at different stages on the journey. Some of us are Stage I, some Stage IV and everywhere in between. It is an unfortunate fact that this beast can come back at any time to any one of us. For some it has and those ladies (or anyone of us for that matter) should be able to voice how they truly feel. We are here for each through good times and bad. If this is not conducive to your wanting to be positive and happy all the time, then perhaps this thread is not for you.

mitymuffin

LuvRVing, I sure will be thinking about you and I appreciate your being a pioneer for all of us.  Of course I hope this clinical trial is hugely successful and that you will soon be NED and feeling well.  Keep us posted about your experience. 

Inmate, a shout out to you.  I too took Vitamin B6, acetyl-L-carnitine and L Glutamine while on Taxol and only had minimal neuropathy. I hope the Abraxane is kind to you, and very successful. 

Marianne52

I am sorry if I offended anyone as that was not my intent. I am really sorry.

TifJ

Marianne- We know you meant no harm. Just wanted you to know why we post both the good and the bad. This is such a rough road, as you know, and we cannot possibly be upbeat all the time. Please stay with us- we can be here for you too.

LuvRVing

Ladies - thanks so much for your support!  So far I've done three full days and have had no issues with the trial drug.  Today I biked 6 miles with my DH, DDIL and DS, then we went out for lunch and ice cream.  It has been a fabulous day, including weather-wise. 

Loretta - I had a BMX with TEs and I was under for about three hours, and I spent just one night in the hospital.  By 1:00 the following afternoon, I was ready to be home.

Marianne - I'm one of those who went through all the chemo, surgery, rads, etc. and a few months afterwards, here I am at Stage IV.  Believe me, if remaining positive was all it took to stay alive, I'd be living forever.  A positive attitude helps me deal with whatever this beast throws my way, but it won't give me life.  Oh how I wish it were so simple!  And it's good to know I have a place where I can just release my feelings, knowing that everyone here gets it.

TifJ

Luv- I am so glad the new meds are treating you well and you've had a great day!!