Calling all TNs

Hope60

Titan - Congrats on finishing the 5K!  And thanks for doing it, for all of us.  I feel so guilty...spent the day trying to talk myself into going to the gym, decided it was too hot, and never got there.  I think you've shamed me into going today.

 Annie - I'm sorry you're having such a tough time with Taxol.  I had minimal side effects from it so no wisdom to offer, but it sounds like you've gotten some good advice from others.

Heather - Such a lovely experience you had at your old house.  I guess that's partly the point of moving back home...to be close to the people and memories that are so dear .

Have a good day everybody! 

Hope60

Annie - I forgot to mention this....I'm one of those oddballs who hates the summer...I always feel happier and more energetic in cold weather....freaky, I know.....but I envy you right now!

kathyrnn

Dear Lord, you have been busy bees on here this weekend!



Want to tell you my "small world" story. I landed on a poker table with a nice man (good player, good sport) that I had played with last time I was there. I was teasing him, that he had told the truth that he came there often, and asked if he lived near the casino? He said no, he actually lived about 80 miles away. Trying not to pry to much, I asked him, North or South? He said, " you probably wouldn't know it, I live in a small town called Raynham". I kept my poker face on, kept playing, and reached into my wallet and showed him my license. He looked at it and burst out laughing, when he saw I lived in the same town. (Now the whole table is laughing at the small world occurrence). He reached in his pocket (he has an even better poker face than I do) and showed me his license. I looked the address, and burst out with, "OMG, if I walk out my back door, your house is about 1500 feet from mine!". Very small world!



KSteve - have a wonderful do over!



Bak94- congrats on school, but boooo to the drain. Don't you dare think of leaving us Missy!!!



Minxie - How is DH's recovery progressing after his remark? *big grin*



Jan69 - sounds like lunch with your friends was wonderful!



Mags - you are right about this disease making you re-evaluate the people in your life. I'm blessed by wonderful friends, but a couple people got kicked to the acquaintance list. Hope you danced your a** off!



Welcome Hopeful999 - please come back for support or questions about your Mom anytime. ((Hug))



Titan - I actually did get lucky.....ooooh you meant the casino? (sorry, reading 50 Shades and Cocker's "Guess Who" cartoon has put the devil in me). Congrats on your achievement, I'm in awe. *Applause*



Sugar77 - Congrats on the great check up. My vote would be for a PT, who has treated CA patients (best of both worlds). Can't remember you location (can't flip back to look) but if in US, try your local chapter of the American Cancer Assoc. for a recommendation. "I've been tied up reading the 50 Shade book". BEST LAUGH of the day!!!!! Anyone reading them caught it immediately.



Wow Riley, that was both informative and scarey. You've been through a lot.



Tazzy - congrats on being PFC (your definition!). *Sends a psychic a** kick to your neighbor*



NavyMom - some people are just unbelievable. Tazzy's comment on the book about the book on what people say was interesting. Maybe we should all put our heads together and write a booklet on what NOT to say to CA patients, that can be given to family and friends.



McCrimmon - glad you got to see the house and that it was re-done in a way that gave you happy memories.



TnbcRuth- Hope we haven't heard back, because you got thee to the hospital! Feel better. (pancreatitis is awful)



Jazzy- hug those puppies often, it's wonderful therapy.



Welcome Simplyblessed. - I was scared chitless until I found this thread, also. I'm curious about 2 things. What is ALND? Also, 12 weeks of radiation? My rad onc. Said they never would do more than 7-8 weeks max.



Hi Spica- welcome. Wonderful info about BrCa and MS. I remember driving down the highway one day (still bald) and looking in the rear view mirror and seeing that I was growing a lovely curly Santa Claus beard. First thought was Cocker's WTF!!!



Lovemysamoyeds - can't help with your question but best wishes for your surgery.



OBXK - great reminder to grab and enjoy every day we are given.



LuvRv - would love to get together and compare notes. I was at Foxwoods, but you'd never want to meet me there. Unless you play poker, you'd never see me, lol. I'll PM you.

Actually my MO is a lovely young lady, with great bedside manner, and who has been VERY patient with me. (Nurses are the worst patients). My BS, is an absolute sweetheart, and I'll give her real props for telling me "wow, this is a serious mistake" when we discovered that i should have been BRACA tested. I would say my biggest complaint would be the lack of information, or misinformation given. I truely believe DF needs Nurse Navigators assigned to every patient to improve the quality of care.

I also did get lucky at the casino. Played video poker for 10 minutes before heading to the poker room and hit $100.00 on a .25 play. Has never happened in all the years I've gone there! (Thank you God, going toward the $800. I have to pay for my BRACA test.)



And last but not least, Cocker I hope that you are hanging in there. I think I have now officially beat you for the longest post. *big ole evil grin*. I'm trying to take up the slack for you because I know you're having trouble typing.



Hoping every one is having a wonderful weekend. I have to get moving I have a funeral memorial to get to.

kathyrnn

And while I was typing this book above Ms. Cocker came and snuck in. We must have been typing at the same time! *smooch*



Hope - I vote with you, I hate really hot weather.

Tazzy

I am never going to catch up today with all the posts... but just wanted to check in and say hi and thinking of you all. 

Titan..you go girl... what an amazing achievement - you put me to shame too.

Hi to all the new ladies - welcome.  This is a great board.

When my brain is not in chemo fog I will read back, even if I dont respond.. I love reading all your posts.

Just wanted to say hello, thinking of you and hoping you can have enjoyable days, and anyone with SE's (me included) they are bearable and minimal.

Peace and hugs xxxxxxxx

NavyMom

Kathy:  ALND is axillary lymph node disection.

Titan:  Great job on your race.  And a sincere thank you for doing it.  I have only done one "pink" fundraiser.  I found it to be very emotional.  I am hoping sometime in the future to do another one.

A big welcome to all the new gals.

Have a restful Sunday everyone.

CatWhispurrer

Annie - I am about 2 months post-DD taxol and still have bad neuropathy even though I was taking both Glutamine and Acetyl Lipoic Acid (both are supposed to help with neuropathy).  I just stopped the Acetyl supplement a couple of days ago and started the Gaberpentin.   I wanted to get off the Acetyl because it can lower your blood glucose, and I wanted to start Metformin which also lowers your blood glucose.  I was afraid to take both at the same time.  I am taking the Metformin for anti-cancer properties, not diabetes.  The Acetyl Lipoic Acid really did help with the neuropathy because when I would cut back, my feet were real bad, like walking on rough gravel and hurt.   I am only taking the Gaberpentin at night because it makes you sleepy but I don't sleep well anyway.   The Gaberpentin has been helping a little, but not much with the neuropathy.   When I work up to taking 3 of them a day, maybe it will help more.   I really want to exercise more like I used to by walking 2-3 miles, but I cannot because my feet hurt so much.  I hated Taxol as I had the worst side effects, much worse than AC, but I know that is a lot different than most people experienced.

I am doing radiation now and will be done with my last 4 "boosts" on Thursday of this week.  Then, I will meet with my BS to decide on taking out my port and which follow-up tests/screenings I will have.  I don't see my MO for 3 months.  He said he considers me cancer-free (even though I've had no tests to back that up).  I had adjuvant chemo, so there is no knowing and I am still fearing it isn't all gone until I have some follow-up tests.

JAN69

Annie--I don't know if you are serious or joking---what's an exercise bike?  Well, in case you are serious, an exercise bike is a stationary-type bike with one wheel which doesn't touch the ground, but you pedal it like a bike.  I bought the type that you have to work your arms back and forth, so it gives me and upper body workout too.  My physical therapy clinic used the exact same one.  They only thing I don't like mine is that I have to actually get on it and pedal the thing.  I seem to operate my life on the recliner with my laptop on my lap.  So pitiful.

 I'm going to visit my little grandkids tomorrow and stay about 4 days.  DH is staying home.  He'll have to go the supermarket to buy his frozen meals.  His kitchen skills are limited to scrambled eggs.  So pitiful.

We are having blessed relief from heat these few days.  I love it.  Finally planted my tomatoes today.  So pitiful.

 To all those who are are hurting today, both physically and emotionally, you are in my heart and I know you will have brighter days soon.  Jan

Luah

Hard to keep up with this thread, but just popping in to say hi and hope you are all enjoying the weekend. 

Titan: You rock!! That is a great accomplishment... and a wonderful thing to do for TN. Congrats.

Annie: Are you already on a weekly schedule? (because that would be one option). Or ask your doc about switching to taxotere - for some women, the neuropathy is not as bad. 

Cocker_Spaniel

Jan69 - I was joking.  You said you was going to dust yours off,  I said what is an exercise cycle meaning I haven't been on one for years and (don't intend to, haven't got the energy. I will leave that up to Titan). lol 

OBXK

Kathy - I love your small world story! Hope your BRCA test comes back negative.

borntosurvive

AWESOMe Job Titan and YES I also hope that one day the TN sisters can just take a pill or a vaccine and that's the end of that. 

I wanted to say THANK YOU for all the love and support after my pity party post the other day.  I was more mad at myself (I realized) for letting this "friend" second guess myself and get myself down again.  I was stuck in a rut the rest of the day and night.  I was in bed by 8:30pm and just cried myself to sleep.  I haven't done that since being in chemo.  It's frustrating when people truly just don't get it.  Thank you ladies for understanding and being there to hold me up when I just wanted to crawl in a hole and cry my eyes out.  You're all amazing.  

I had a great weekend of kiddie birthday parties and family pictures for my in-laws 40th wedding anniversary.  My baby turns 2 on Tuesday and my 3.5 year old graduates preschool on Thursday.  It's going to be a busy week - better have my kleenex ready.  I think they took out the cork for my tear ducks when they removed my boobs.....I cry at the drop of a hat now.  Happy Sunday everyone xoxo

Titan

I don't like hot weather either...when Cocker talks about it being cold in NZ I'm jealous! 

Kathrynn...happy to hear you got lucky..heh heh...with the guy next door...??? and you had to drive 80 miles to a poker table to find him...funny stuff

Geez borntosurvive..that "friend" isn't worth your time...please dont let people like her get you down...talk to your oncs and come on here for support and realistic advice.

Have a great week everyone...ugh..I hate Mondays

Wrenwood47

Has anyone had Shingles? This is my first experience and it is sooooo painful. Any ideas on how to stop the pain and the horrible blisters. It is around my midsection on my BC side.

JAN69

Annie--OK, my answer about "What is an exercise bike?"  It actually is a fancy word for clothes rack.  Quite useful, too.  If you'd like one, they are often found at yard sales.  Of course I bought mine at full price because I was going to be serious about getting and staying fit!  I'm so pitiful.  Jan

ATeamNana

I have never had shingles but I am on new med for nerve pain. It is lyrica and seriously I can already tell a difference. It says it is also for shingles and diabetic nerve pain. Hope you get some relief.

riley702

Kathyrnn, I started laughing when you said I'd been through a lot, because I caught myself complaining the other day that "This damned breast cancer has ruined my health!" and I didn't mean the cancer itself. And then I caught myself and realized that sounded kinda dumb - of course, cancer ruins your health. That's kinda what it does.

Spica16

Hi Annie,

Gabapentin can make you very dizzy and unbalanced when you first start on it. The docs usually start you out on a low dose, and then work up to a dose that alleviates your symptoms. 

It doesn't cause nausea per se, but if you get nauseated from dizziness, it might. Start it at night or on one of your late sleep-in mornings, so that those dizzy sensations are minimized. Give it a few days - once you get used to it, the dizziness and imbalance subsides.

Good luck - I hope your docs find the right answers for you.

Take Care ~ Shar 

Cocker_Spaniel

Hi Ladies

I am having my own pity party here.  I am sick, sick, sick  of taxol.  I wish I had never heard of the freaking stuff.  I am sick of my freaking little sausages having no freaking feeling.   I can't even put my freaking fingers together.  They have no freaking stength in them. I can't open freaking anything. I can't do my freaking bra up (the old fellar gets the pleasure of that lol)  I can't open the clasp to put my watch on and if the old fellar puts it on I can't undo it to take it freaking off.  It took me all day to type seven freaking letters, I would normally do them in a freaking hour.  My hands and arms are covered in a freaking  itchy rash that is driving me freaking batty.  I've got itchy thrush down the other end that drives me freaking mad all night regardless of what freaking  cream I use.    I don't want their freaking taxol and I don't want their freaking radiation cause that will bring its own freaking problems.  I rang my oncologist who wasn't freaking  there and her freaking nurse said go along to your 8th treatment on wednesday and will discuss it then, so freaking helpful. I am freaking tired and got no freaking energy.     

So to all those ladies who don't like the heat, please send it my freaking way, cause its freaking cold here.  AND  just to top it off its freaking raining.     

Can you gather ladies that I have had a freaking shit of a day and its not even freaking bed time.  Now that I have got that lot off my freaking chest I feel freaking better. 

I do hope you are well and happy and not having a freaking day.  Annie      

Cocker_Spaniel

Hey Kathrynn - any chance of a little romance between the casino chap who lives 1500 feet from you ???? lol

Spica16

So, now it's   WT...FREAK !!!!!!!!!!!!!!!!

Cocker_Spaniel

Spica - good one lol

NavyMom

HOLY FREAK, CS!!! Not a Freakin thing I can do to help but let ya know that I'm feelin for ya.  OMG, so much to put up with and this miserable Taxol.  I am just wondering.....Could your Onc switch you to Taxatare instead?  Not sure if that would be a bit gentler to your system or not.   Really, Really hoping things get better soon.

Wren, are you on any antiviral meds?  They can help with the severity of the rash/blisters.  I had a very mild case of shingles many, many years ago and took a course of antiviral meds.....can't think of the name of them.  Damn chemo brain.

borntosurvive

I feel so FREAKING bad for you CS.  I had taxol (4 rounds) and had numbness in my fingers and the heels of my feet.  I think it's slowly going away now.  It's freaking annoying, I agree.  Just try to remember that it's all temporary and you'll be back to your old freaking self in no time. 

And just to put in my two cents.......I LOVE THE FREAKING HEAT!!!!  I always say I was born in the wrong country (Canada).  I do love Canada but really hate winter and cold.  So maybe I can trade places with those of you whole like the cold during our winter months if you are somewhere that's warm?!  Just sayin.....

 Enjoying my coffee while my boys are still asleep.  I have the windows open and I'm listening to the early morning birds.  Today's a new day, a new week and I'm embracing it.  Love to you all for a FREAKING great week xoxo

Babs37

Wren- I have shingles now! It started 2 weeks ago with a small rash on my shoulder BC side  and went in front to my collarbone and in back up my neck. Mine doesn't hurt too bad but it itched like crazy! I went to the doctor on day #4 and he started me on an antiviral for 7 days. I believe it help stop the spread. I used calamine and Benadryl spray to help with the itch. He told me to take Motrin if I had pain. To this day, the blisters have dried up and don't itch as much but it is still tender on my shoulder. Hope you feel better soon. Hugs.

CS- I feel for you.....Taxol #7-8-9 were hard on me too. I asked to put my fingers in ice during the Taxol infusion.I knew they did that for Taxotere to prevent neuropathy in fingers so I asked for ice because my fingers were numb from Taxol. It helped! Ask your nurse at your next Taxol. (((hugs)))

I read posts on here everyday and am sending big hugs to eveyone. 

LuvRVing

Wren - I agree with Babs.  Get a prescription for Valtrex - it will help knock the shingles out of your system.  I'm lucky that I had the shingles vaccine two years ago before I started any BC treatment.  I will never regret that decision.  Way too many of us get shingles during or after treatment!

CS - My heart goes out to you.  Neuropathy totally sucks, and your freakin' onc needs to pay attention.  When I was on Taxol, I took Vitamin B6, Acetyl L-Carnitine and L Glutamine to help prevent neuropathy.  There are clinical trials to determine if Acetyl L-Carnitine works, so talk to your onc and tell him you want to get on this mix of supplements.

http://www.clinicaltrials.gov/ct2/show/NCT00775645?term=acetyl+l-carnitine&rank=7

And tell him "no" is not an option.

mags20487

FREAK!!!! Sorry cocker!!!  {{{{HUGS}}}} to you from Melbourne Florida where it is raining buckets.  Hang in there love.  Before you know it you will be done with chemo and onto bigger better things--like life!  We all have the days where it just seems like there is no end in sight.  We are here to help you and listen to your Freaking!!  So freaking feel better.

xoxo--Maggie

KSteve

Mags - Send some of that Florida rain to Colorado so our entire state doesn't go up in flames!  We need it . . . going for 5 days over 100+ degrees and that's not helping either.

I hope everyone has a great week!

Kathy

Fighter_34

Cocker-((HUGS)) You can make it just relax when you need to and just think it will soon be spring and you will be all DONE and ready to enjoy your normal activities again.

Ladies- don't worry too much about off the wall comments friends and family say. Sometimes folks just don't know what to say. I have said this before I didn't share my Dx with everyone because of that simple fact I didn't want to deal with all the extra attention. Only close family and friends know. I have little ones and I don't need thoughtless people just speaking from out of nowhere and upsetting them. My kids know but they know what they need to know at this point in time.

It is so toasty outside! Summer is definitely here!!!

Let's focus on making this week a GOOD ONE!!!

LNBCA

Jazzyj-oh my, your friend must not be a dog type of person, lol. Dogs, and other animals, are so healing for so many people. At my mom's oncologist's office, they actually allow dogs in where people are getting chemo!  One onc. brings his Ridgeback to work with him every single day. I've seen it laying in his office a few times The chemo hallway has pictures of what I believe are all the Dr.'s and staff's dogs. Definitely a dog friendly office. I'm one of those people that believes people are germier than any animal That's just me though. I once tried to take my little Dachshund into Wal-Mart and the greeter stopped me and told me I couldn't because of all the germs she may carry, I just said "Really?! Have you seen the people that come in here? I guarantee my dog is cleaner than a lot of those people! Lol".

Hope everyone is doing good. My mom only has two Taxol's left. Her side effects aren't as bad, thank God! Me, her and my three kids were able to go out to breakfast the day after her treatment last week, then she was even able to take her Grand kids summer clothes shopping! Something she's really been hoping to do, just been too weak. So that was great to see her out doing stuff again finally! Her onc. said her hemoglobin is still a little low, she has her on iron now, so if it's still low at her next appt. on July 5th, she'll have to have a blood transfusion. Hoping it goes up! As for myself, hoping to get my BRCA1 results this week Pretty nervous, but ready to take on whatever is necessary. Have a great day everyone!