**NEW** Starting Chemo March 2009

crusader1

Great news Buddy.

We are sooooooooooo happppppppy for you.

Hugs,

Francine

Alyad

hi everyone! I am SO happy that Deb is done with chemo!

the holidays have been hectic as usual- maybe a little more so bc of the winter weather we had changing plans at the last minute. We are having a hell of a cold snap right now- as is the rest of the country.

 Tomorrow I am getting evaulated by a lymphedema therapist - I have some signs of truncal LE and maybe some axiallary web syndrome. I think it is really good that I am going to learn techniques to deal with LE before I leave on my hiking trip. When I first heard about lymphedema - the thought of having it was horrifying- add it to the list of things I thought I'd never be able to deal with in this journey. The thought of having to wear a compression sleeve/bra/ or tank was so scary. Now its just one more thing to deal with and keep rolling on

buddy1

Alyad  Please let us know what they tell you about the LE.  I have not checked in here for a while.  Your hair looks terrific

ChrisC433

Buddy...CONGRATS....GREAT NEWS TO START THE DAY!

Dayla:  I have axillary webbing (cording) too.  I see a PT and she breaks it up for me.  A good message therapist that specializes in lymph message is good practice.  She can show you ways to prevent the swelling while hiking.

I just can't stop smiling for Deb!!

 Chris

kim40

Things are going pretty good on this end of the world.  Had my 3 month follow up appt with my onc yesterday and he finally approved on giving me the  Zometa.  I am so thrilled.  Just trying to get the ball rolling with that!

My first "Cancerversary" is tomorrow.  Wow!  The time has sure past me by.  A friend of mine is taking me out to lunch tomorrow to celebrate! 

My follow up mammo is on Thursday.  Not looking forward to that AT ALL!!  It is my first one since my d/x and I'm scared.  Keeping my fingers crossed for a good report and no call backs!

Take care sisters - Luv you all!

pickle

Hello ladies;

It sounds like everyone had a good New Year's. Francine, your pics are great. Buddy glad to hear that the lumps are nothing serious. Kim that's great about Zometa.

It sounds like there are lots of Cancerversaries this month. It is one year today that I went to my doc about a lump. Wow what a year and look where we all are today. I am grateful.

Everyone is getting back to life, activity and normalcy. Isn't it wonderful....such a great way to start the new year/new decade!

Have a wonderful day Ladies. Thinking of all of you

Hugs

Beth P

ccbaby

Good News Buddy!!

Jdeking....My birthday is the 7th, and I found my lump on the 18th and was diagnosed on the 29th. What a year!

Alyad

I went to the physical therapist for LE eval today- I didn't think I had arm LE but I do- don't think I have cording In addition to the truncal LE. Both are very early stage. I will have manual lymph drainage 3 times next week with arm wrapping 23 hours a day , then two times the following week, then I will be fitted with a compression sleeve that I will have to wear while hiking. I went and found a stretchy tank top for some compression, its snug but not tight (what the LE therapist told me to look for).

Dayla

buddy1

Dayla do you have much swelling and or pain.  what are your symptoms that made you go.  Are you able to use your hand.  Do you think the damage was from the radiation mostly.  I have pain that runs up in my shoulder mosly in my foreare.  I cannot wite anything more than my name.  It hurst too bad.  I can hardley hold a fork to eat with.

ccbaby

Dayla...who was your therapist? I had Erin there, she was great. I am glad you caught it early, like I did. You will see a diiference in a short time. Just remember to do your manual massage every day! I forgot my compression sleeve for our long drive down to New Orleans and back, but while we were driving, I did my manual massage every hour and got out of the car and walked around every 2 hours. I didn't have any swelling at all.

MichelleinSJ

I'm catching up again, and I hope I'm not too late to get in on the April weekend in NYC thing.  I only live about an hour from the city and I really want to meet you!

Michelle

MichelleinSJ

Hi,

It didn't take long at all to catch up since my last post back in November.  It looks like there are fewer girls here getting closer with each other, and yet everyone is still welcome and appreciated.  It's wonderful   This board is so special, and even though I'm here so rarely, you're all in my thoughts more than you'd ever guess.

My cancerversary was on November 24, right before Thanksgiving of 2009.  It made the holiday extra special this year.  I am so glad Deb had her last chemo in 2009, now we're all free and clear for the new decade!  This year has to be so much better.

Things have been okay, here.  I still lack energy, and it's got me concerned.  I am going to drag my butt to the gym this afternoon, but that will be followed by a big Italian dinner (today is my birthday).  I have a doctor's appointment tomorrow, he'll check my thyroid.  I've been on thyroid pills since tests showed it was hypoactive back in September.  Dr. thinks it's unrelated to cancer, but I never had a thyroid problem before.  I still don't have a job, and this is a slow month for subbing.  During the holiday season I worked as a cashier at Best Buy, which was fun, but I spent a fortune!

Quick update about my daughter, who was having so much trouble in the spring:  she's doing great!  High school has been so wonderful for her.  She got completely absorbed in marching band, and choir, and she's doing every possible musical activity.  She plays trombone, and now she has a boyfriend who is even more involved with trombone than she is.  He's a good boy.  But I think it's the music that has helped her so much.  She's in the choir ensemble, and she had a solo in one song and did the piano accompaniment for another.  She seems calm and happy, and she's definitely becoming more responsible. 

Marriage ... eh.  I guess I can deal with the ups and downs for now.  The future is still an if.

My hair is back enough that I can flat iron it!  I will probably have to have my bangs trimmed this month, they're dipping slightly below my eyebrows.  I should definitely have an actual style by my sister's wedding in late April, and it should be back to normal by my son's bar mitzvah in June.  At least I think so!  I'll have someone take a picture of me tonight at dinner.

So good to see everyone looking so great and healthy!  Here's to 2010!

Michelle

Alyad

Michelle, so glad to hear you are doing well and that your daughter is thriving in high school.

 Christy, I will have Erin too for therapy, I was eval by Amanda- she was really nice. Did you have to do the wrapping and all that?

 Buddy, I am sorry you are in so much pain! have you been evaluated for Lymphedema(LE)? Radiation is known to be a factor in getting LE.   My shoulder has been tight ever since I had radiation- didn't keep me doing things- just the pectoral muscle was really tight. Over the last few months I noticed the occasional weird pain in my arm and down into my ribs on that side. Like when I bent that arm back behind my back to hook my bra, I felt pain in my tricep area and aroound my ribs in my back.

I think what I have going on now was triggered by a long car ride over Christmas- my arm started hurting- if I stretch my arm over my head I can feel a pulling down  my whole side and up into my hand. I feel some pins and needles in my hand, my arm feels heavy- when I use it to do something, the arm feels weak and sorta feels like the muscles have instant fatigue. I sort of feeling burning ache fullness feeling in my armpit and the TRAM breast feels heavy and swollen.

I didn't think I had any noticeable swelling in my arm/hand, but the therapist who evaulated me did tests pinching my skin and noticed a diff in the two hands- fwiw, my wedding band on that hand is slightly too big yet leaves an indention.

 I think my back is also out of whack and I need to see the chiropractor- I might have some nerve impingement that is contributing to the problem. I've held off going since I was laid off work a  month ago and money is tight. I qualify to collect unemployment, I filed an initial claim but haven't filed the weekly claims I need to in order to collect benefits. Dealing with paperwork has just overwhelmed me as of late- I think in MO you have to actually show up every 4 weeks to collect benefits- here in 6 weeks, DH and I leaving to begin our grand adventure on the Appalachian Trail.

 I really don't like the idea of pretending to look for a job- its just not in my nature, I want to be honest with everybody, so I just haven't done it. Getting subsidized COBRA insurance  for 15 months is so much more than I thought I'd be getting when I was planning on quitting my job to go hike the trail.

So I don't know what I'm doing as far as the unemployment thing- I think I still can collect benefits within a year- so maybe when I get home in September and I am honestly looking for a job I will file claims.

Meanwhile, I have been doing a lot of planning- planning our food drops, figuring out our gear and logisitics. We are going to go to FL for a couple weeks before we start hiking in northern GA in early March. My dad and best friend both live down there.

pickle

Dayla: Glad you are getting it looked after. Like Christy said, you should see improvement quickly. You must be excited with planning your trip. Lots of logistics to figure out with food dropd etc. Sounds so fun.

Buddy: Have you had your's checked. That sounds really rough when you can't even write or pick anything up.

I only had 3 nodes removed so I was told my risk for Lymphdema is really low. I have been using small weights at the gym (up to 7.5 lbs)  and so far so good. I am going to the Dominican at the end of Jan so I got a compression sleeve for flying.

Michelle: Nice to see you. You are absolutely not too late to join the NYC group. It will be wonderful to meet everyone. Wow...your hair can be flat ironed. You need to post a pic....I am still at poodle stage but I think I need another trim so I am always excited about that. I still lack energy too but I guess it's normal. It can take a year post treatment to reagin our strength, stamina and energy back but each month is better than before.  So happy to hear that you daughter is doing so well. What a relief. It's great that she enjoys music. It is a wonderful healer and a comforting escape place when someone needs it. And it's great fun!

Kim: Enjoy your celebratory lunch. Have a glass of wine...you deserve it.

I guess we should really decide on an exact date for NYC so we can make plans.

Need some tips: I am having my first meeting with the PS next week to discuss recon. I still haven't decided. I think my only option will be TE/Implant in the left and probably a lift/implant in the other. I know some of you have already had recon so I need some honest feedback. Is it worth the extra surgeries? Are you happy with the results? Are you glad you did it or is it something in hindsight that you might not do again? I am really on the fence with this. I think I am hesitant because it's more surgery and I know some of you (especially Francine) have had a lot of complications. My daughter's wedding is in June so I am worried about running in to trouble with surgery before her wedding. What questions should I ask the PS?

Any feedback would be greatly appreciated.

Hugs

Beth P

buddy1

Alyad  Car rides are terrible for me.  They almost put me in tears with pain.   I was given the compression gloves and sleeves and sent to therapy but nothing happened.  The rads doc said It will probably get worse as time goes on. 

Alyad

Buddy, you need to find a different therapist that can help you. I encourage you to read the stuffand links to more info on the LE forum- there are some very knowledgable women over there. One thing I've noticed is it seems LE is taken with varying degrees of seriousness and sometimes you have to be your own advocate to get the care you need. There are a lot of people out there who do LE therapy who don't really know what they are doing. That sucks that your doc just says- oh well it will get worse as time goes on- don't accept that!

 I have very mild LE- and I will be getting manual lymph drainage therapy followed by compression wrapping (where your arm is wrapped up like the michelin man in a very specific way), I will get that three times next week and twice the following week- my arm will stay wrapped 23 hours a day between sessions- hopefully by the end of two weeks my swelling will be reduced and I can be fitted for a compression sleeve. Did they show you how to do manal lymph drainage yourself?

I was reading today that the fit of the sleeve is very specific, losing or gaining weight can affect the fit, I am concerned that I will lose too much weight while hiking! well not that I'll lose too much, as for me there isn't really such a thing -more that the sleeve will be too loose after a few weeks. I lost 22 lbs in the first 6 weeks the first time I hiked the Appalachain Trail, and a total of 45 lbs over 6 months.  I gained it all back tho.

Alyad

Happy Birthday Christy!

buddy1

Alyad  Sounds like I need to go hiking.  Ha Ha.  I would have to roll down the trail.  I really appreciate you filling me in.   I need to talk to the Doc about that.  I didnt realize there was so much out there for us.  Will you totally recover  or do you need to live and manage it.

ccbaby

Thanks Dayla!! I get to pull my drain today and I am so excited to be rid of it! My DH is going to do it for me after he gets home from work. Then we are going to go out for dinner. I hope I don't 'leak'!  What a birthday present that would be, lol.   I can't believe what I (and everyone else here) has been through since my last birthday a year ago. I found my lump on the 18th and was diagnosed on the 29th....what a year!

buddy1

CC  I hope you have a great time tonight.  Did you have a hip flap.  Meaning they took skin off your hip for your breast reconstruction?

buddy1

CC  I hope you have a great time tonight.  Did you have a hip flap.  Meaning they took skin off your hip for your breast reconstruction?  With a silicone underneath.  We are snowed in..........

Anonymous

Christy :  Happy Birthday!!!   So glad that your hip flap surgery went well.  Drain out , what an incredible birthday present.

Buddy :  Nice to hear from you, been awhile  Good luck with the LE problems. 

 Dayla:  I watched a special on the AT the other day on Nat Geo Channel and thought of you.  It sucks that you are having the LE issues, but good that you are catching it early and before you hit the road.  Like you, I'm an outdoor person and everything I do is physical.

Beth :  It is a lot to consider, reconstruction and all.  I would say that most people don't have complications and would not make that the deciding factor.  I can't wait to see my PS on the 18th and hopefully one last surgery to even out the "girls".... right now I have Big Bertha on the left and Baby Betty on the right.  He said he can move over the flap on the right and make that one larger and lipo out some from the left to even us out.

I opted out of radiation after a great consult with the Rad Onco.  She basically left it that in cases like mine half of the women chose radiation and half chose not.

I saw a OT yesterday for a consult on what to do to prevent LE as well as get some exercises to increase my range of motion from surgery.  She said I was doing reallyt well and took all the baseline measurements just in case there is an issue down the road.  She stressed to be sure to get seen if there are any signs and not wait until they are out of control.  

I think I am finally going to get off the revolving Dr carousel... just the PS to deal with for 3 months.

Oh yeah, my hair finally gave up yesterday...crap.  It certainly lasted longer than I anticipated.  I figured making it by frosting cookies was a bonus and more than I could ask for!!

ccbaby

Buddy...Thanks and yes, they took skin, fat and blood vessels from my upper buttock/hip area for the flap surgery. I am very pleased with it and will be even happier when I do the stage 2 for it in March.

Deb...Thanks so much! I hope you are feeling good.

ChrisC433

Happy Birthday Christy!

 Wishing you all the best!

Alyad

I think its good that I am going to learn the techniques for dealing with the LE before I leave on my trip. I think I will be able to be treated and return to normal- will just have to take preventions to keep it at bay. I don't look visibly swollen really- I just have some pain and fatigue on that side caused by it. Once the swelling is reduced, I'll be fitted with a compression sleeve and if I wasn't hiking I'd just need to wear it when doing things that might aggravate it (working out, flying, long car trips), but since I'll "working out" every day- I'll be wearing it a lot. I think I'll just pay attention to how its doing-I wonder how much it will bug me once it gets hot.

Dawnmrn1

NY Deb!  Great to hear from you? Glad you are doing so well. I know how you feel being uneven, story of my life!  I have PT to help my ROM in my shoulders, and myofascial release for the muscle spasms. It has helped me so much!  My spasms are caused by the assymmetry, one non existent breast with full LND and one reconstructed.  I am really thinking about having my implant removed and going for 2 matched prosthesis, more SX is not what I want, at least for now.

ccbaby!  I wish you a Happy Birthday!  Get that drain out and have some fun!

Dayla!   How exciting about your hike!  Hope the LE is going to be gone by then!

buddy and michelle!  great to hear from you

It is great to hear from you all!  Keep well!  Love, Dawn

buddy1

CCbaby  What is the next stage.

bethr

Hi All,

I just wanted to check in.  It looks like everyone's doing pretty well...

Alyad and Buddy..  I've been dealing with lymphadema for quite some time now.  My breast surgeon sent me for lymphadema treatment after my surgeries were done because they took about 20 lymph nodes out.  Everything was fine until around the end of July when my arm went absolutely nuts.  Fortunately, there was no pain, but it swelled tremendously..  I thought it was going to explode!!!  I've been in wraps for months now.  This Monday, I'm finally getting measured for a compression sleeve.  We had to wait for the swelling to go down.  It took a long time and as the weather got cooler it finally started getting better.  Sometimes I think it's been more annoying than any of the other issues that came along with the BC.   I hope and pray that you don't have the same experience.  And Alyad is right..  Finding a good lymphadema therapist is key.  They will teach you how to massage you arm to get the fluids moving where they should be moving...  I'm really praying for you guys.  Honestly..  it's been a tremendous pain in the ASS for me!!!

NYDeb - so sorry to hear about your hair...  I hope it grows back fast.  My New Year's resolution was to stop wearing the wig...  and I have...  I think I look ridiculous.. I'm almost 6 feet tall and have gained alot of weight...  I feel like I must look like a man..  I get some stares....  my hair is sooooo short...  but I don't care.   I'm not wearing the wig any more.  And, in time, my hair will be back!!!  I'll deal with this period.....

I was wondering what the news is about the weekend in NYC.  I'm planning on coming.  Is there a certain hotel everyone's staying at?  What's the story??  Is there something in get togethers I can look at?

let me know.

Take care all and have a great night!!!

Beth

crusader1

Hi all,

Hello from rainy Puerto Rico.  But we did have time on the beach. I even got a suntan.

beth..I thought we had already picked a date for the reunion. I believe it was the first weekend in April after Easter and Pasover. . I have many thoughts on TE's etc and  will write more on Saturday when I am home. I have flown many miles since my mastectomy and noone ever mentioned any compression devices. Who told you about this. I too  only had three nodes out.

Glad to see Michelle here. Great all is going well for you..Happy b day.

Hugs,

Francine 

 t the end of this tunnel will be sunshine!
Diagnosis: 9/12/2008, ILC, 1cm, Stage I, Grade 2, 0/3 nodes, ER+/PR-, HER2-

MichelleinSJ

Happy Birthday to my almost-birthday buddy Christy   Deb, sorry your hair didn't make it.  Francine, have fun in Puerto Rico!  Sorry to hear about all the LE problems.  I went to physical therapy for a couple months, and my arm feels okay, but I worry all the time. 

Reconstruction:  everyone I know IRL has not had any problems with it.  I'm thrilled with mine.  I even think I have a bit of feeling, but that could be either phantom feeling or plain old wishful thinking.  Anyway, I went to an indoor water park last week with the kids, and I don't know what possessed me to try the surfing contraption, but it was a disaster.  I ended up flying up this watery slope after falling flat on my ribs and head (ended up quite bruised but okay, amazing after rads).  When I got to the top my bathing suit top was pulled all the way down, which thank goodness I discovered so quickly, even dh didn't catch a glimpse of anything.  But can you imagine if that had happened with prostheses? 

Michelle