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NOLA in September?

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  • Russell1
    Russell1 Member Posts: 413
    edited June 2013

    Ps..I know life is all that matters in the end, bu† had to vent:)

  • mags20487
    mags20487 Member Posts: 1,092
    edited June 2013

    Russel-- that is my dd's bra size..we have to order bathing suit tops online..wear em proudly! About the cording...yes you can have without le. My right arm was worse then left with cording and I do not have le on right. Get to a lymphedema certified pt. Some studies show cording to be a prelude to le but it is not conclusive. It is painful though. A good pt will do stretching and give you exercises you can do at home. Hope it resolves quickly. I had one in the right arm you could see and feel. Went to zumba, raised my arm and it "snapped" and did not come back =) . And you feelings are valid! We wanna b done already!



    Maggie 2

  • PinkHeart
    PinkHeart Member Posts: 271
    edited June 2013

    Russell,



    I'm sorry to hear about your cording and would like to suggest you go to a PT-CLT asap. I have been plagued by cording since BMX and ALND.



    Some patients with cording are lucky it goes away on its own, some need months of PT, and rarely, there are patients like me that it won't resolve with even 100 sessions. I have had a couple dozen cords that did "snap" and go away. Some went from axilla to elbow and others went from axilla to wrist. Very, very uncomfortable and painful.



    So there is still one big mother cord that will not resolve. It originates from my chest wall going through axilla down to elbow. My current PS is looking at different methods to treat but mine is kinda different There is no medical literature on surgical methods for this or studies on outcomes.



    I expected to lose both my breasts to BC, not lose ROM from cording which was never mentioned before surgery.



    Even though I did prescribed gentle post bmx exercise my cording started about 2 weeks post BMX. My six drains came out after 3 weeks which is when I started PT three times per week. i started rads 8 weeks after surgery.



    I then started with intermittent truncal LE three months after surgery that moved to my arm. I had LNT surgery five months ago and it takes time to know if really a cure. So far so good on LE.



    Not good on this evil cord. That's why I urge you to see PT soon.



    Mags is right. No conclusive data on whether or not cording is precursor to LE.

  • Russell1
    Russell1 Member Posts: 413
    edited June 2013

    Thanks Mags and Pinkheart...I will be looking for one in my area asap!!!

  • klanders
    klanders Member Posts: 152
    edited June 2013

    Ditto what Mags and Pinkheart said. I have one main cord on the left that runs down my arm. My PT seems to be helping stretch it out through massage. It was quite a surprise when I got it after my SNB - wasn't warned of the possibility by my docs at Univ of Michigan. If you mention it to NOLA docs they might be able to do something to relieve it at stage 2.

  • m1970
    m1970 Member Posts: 261
    edited June 2013

    Russell1. I had cording that resulted after a pulled muscle in my neck after the repeat mammogram I had when my cancer appeared on my MRI. I had no issues for the 7 years prior although I had 23 nodes removed. I did PT and massage and exercises. It took a few months to resolve but I have no issues now. Hope the same for you.



    Klanders. Good to hear from you!



    I wore the cutest sundress to a local festival today. I bought it after a lost a bunch of weight after my divorce but I was always busting out the top. It looked so awesome! I love my new smaller size!



    This afternoon I started power washing my patio. It feels so good to have both energy and motivation.



    I start Herceptin next Wednesday. My onc wants me to start carboplatin and taxotere by the next cycle in 3 weeks. We will see.



    I'm thinking about getting portraits done while I am looking so fabulous before I loose my hair. I have been couch shopping on modcloth.com and I have dozens of cute dresses I want to buy. I just know I'm going to look ugly for at least a year until I get some hair. I just wonder why bother. I could never do wigs before. So uncomfortable, especially during the summer.



    Anywho. Just checking in.



    Marsha

  • mags20487
    mags20487 Member Posts: 1,092
    edited June 2013

    Marsha...you are not your hair.  I know that sounds cliche....but it is so true.  losing our hair is one of the more difficult emotional processes of this crap.  I think that you have some time before the hair falls out as herceptin does not but that dang taxotere will do it for sure.  Shop for some fun hats or scarves or whatever you feel more comfortable with to go with all those cute dresses.  you are going to be smashing. (thanks alot for posting that site...already checked it out and am addicted...gonna get in so much trouble.  I could not wear a wig personally..too itchy for me.  strength and hugs to you!

    Maggie 2

  • Pattysmiles
    Pattysmiles Member Posts: 147
    edited June 2013

    Marsha,

    Here is a link for a FREE headscarf, it says shipping can take 3-6 weeks, a lot of people have gotten them within one week. http://www.goodwishesscarves.org/



    Here is an alternative to use as well... http://www.buffusa.com/sports/. Easy to adjust to the style you want. Some have built in UV protection. I love how comfortable it is and easy to throw on. I usually have one tucked into my waistband when I'm in my house as the neighborhood kids are constantly in/out here.



    Pat

  • m1970
    m1970 Member Posts: 261
    edited June 2013

    Thanks for the hair tips. I bought wigs, scarves, all kinds of hats, hats with hair for my last chemo. I ended up wearing this one cotton bucket hat most of the time and made a pattern and sewed it in different colors. I saved the original hat but got rid if everything else. I plan to see some hats...but I know I will not look fabulous. I looked at the photos of me from that time. I don't care what anyone says I looked like hell. The word that most sums it up was that I was invisible. And now I'm single in my 40s (thank you cancer). Just when people started noticing me because i lost weight this happens. Trust me I already know how much it will suck because this is not my first time.



    I do know I have another 5 weeks of hair so I am going to enjoy that.

  • m1970
    m1970 Member Posts: 261
    edited June 2013

    Sew not see some hats. Why is that autocorrected? Sew is a real word!

  • mags20487
    mags20487 Member Posts: 1,092
    edited June 2013

    the hat sounds cute...so sorry Marsha bc sux!!!!

  • chellehump
    chellehump Member Posts: 374
    edited June 2013

    Thanks Melanie!! Nice scars will just be an added bonus, but I'll take it if it happens.

    Thank you ladies so much!! I am trying really hard to keep the faith. I was trying to lay out in the sun yesterday and even those stupid flexy type chairs start to hurt after about 10-15 minutes. Mother nature was not cooperating though with my plan to lay by the pool all day though :( Got about 20 minutes in between downpours...lol

    I had so much anxiety before my stage 1 due to the unknown and I guess that's what got me going this time. Except, this time I know the process and the doctors which helps, but I am trying REALLY hard to stay positive. I should have thought this could be a problem as my body produces adhesions and they spread (BAD) and this was found during my hysterectomy. They were all the way up to my kidneys and had tangled my insides up. So, please just say a few prayers for me that my body and everything we (the doctors and mayself) do to make me whole again works!!

    We leave for NOLA in 6 weeks & until then I plan to enjoy summer as much as I can. Just wish work wouldn't get in my way...lol

    Marsha, you sound so much better!! Hugs to you!!

    Love to you all!!!!

    Chelle

  • Barbmal5
    Barbmal5 Member Posts: 76
    edited June 2013

    I am currently DRAIN FREE!!!!!

  • KSue
    KSue Member Posts: 87
    edited June 2013

    Barbmal5 - Congratulations on being drain free!

    Russell - I waited to answer your question about the fat injections to the breast (wanted to give it a couple weeks).  So far (2 weeks and 3 days out) the fat injections look great and took well. I am not sure on time frame for possible fat loss.  If anyone knows, chime in.

    MartyJ - I received my new smaller tubbs garment from the Center over the weekend.  It fits much better since it is a size smaller.  It is difficult for me to compare with the DOM because I waited a year between surgeries.  I also received the Marena.  It is mid thigh and while it rolls a little, I like it a lot because it allows me more clothing options.

    Marsha - sounds like your new chemo regimine will be similar to what I did.  I had Carboplatin and Pacilitaxel (Taxol).  I wish you the best.

  • mags20487
    mags20487 Member Posts: 1,092
    edited June 2013

    barb...not gonna lie just a little jealous...enjoy the drain free life!!!!

  • Russell1
    Russell1 Member Posts: 413
    edited June 2013

    Thanks Ksue...I was researching it on the internet and from what I read it can take up to 1 year to know what stays for sure. Yes chime in if you gals can give us your experiences:)

    Great news Barma15!

    Thinking of you Marsha!! Losing our hair is so hard! Vent to us!

  • mags20487
    mags20487 Member Posts: 1,092
    edited June 2013

    oh baby!!!  Dr M let me pull one of the drains!  1 less drain = 1 less pain...I celebrated by putting on a pair of jeans for the day.  If nothing else psychologically it makes you feel better

    Maggie

  • MartyJ
    MartyJ Member Posts: 819
    edited June 2013

    Yay Maggie!

  • Russell1
    Russell1 Member Posts: 413
    edited June 2013

    Yay Mags! That is so true about the jeans! I couldn't wait to put on mine when the drains were gone:)

  • New-girl
    New-girl Member Posts: 80
    edited June 2013

    I get to see Vinnie tomorrow!!! So excited to see what wonders he can do.

  • Audrella
    Audrella Member Posts: 153
    edited June 2013

    Great news Barb and Maggie on the drains!  Such a wonderful feeling to pull those suckers.

    Texan...Wow!  I imagine you are so excited.

    A few weeks ago I posted about getting some feeling back on my left, cancer side.  It's been uncomfortable, but these past two days it has really started to hurt. I get these waves or pulses of pain shooting through my left breast.  It starts at my chest wall and shoots through the middle where my nipple would normally be.  Anyone experience this?  I'm seeing Dr. D on Monday and will ask about it then, but wanted to see if anyone had BTDT.

  • ssla01
    ssla01 Member Posts: 216
    edited June 2013

    Congrats Maggie!

  • mags20487
    mags20487 Member Posts: 1,092
    edited June 2013

    One down one to go! Other one is still over 70cc a day...meh!



    Audrella...sounds like nerve regeneration but ask the doc for his opinion



    Maggie

  • Springtime
    Springtime Member Posts: 3,372
    edited June 2013

    I was out of town for a long weekend and just updated or added 4 things to the listing. I had some issues with the site going down, so please check up there if you PM'd me! 

    Betsy, sounds like you landed an excellent LE pt. They are pretty amazing! Is she "Vodder" trained? It's an intensive training program. I saw LE PTs here who were Vodder trained, and they were excellent. They make such a difference. 

  • bdavis
    bdavis Member Posts: 3,192
    edited June 2013

    Beverly... I have no idea if she is vodder trained... I will need to ask. Its funny, cause I am learning something about lypmhatics and she is learning about reconstruction options... She was telling me today about a patient she had this morning (in for LE) and how she hated her TEs. She started to tell her about flaps... but the woman was worn down by her angst over implant recon... so Jen decided to tell her more another time. But now my PT is spreading the word as well... I love it!

  • MartyJ
    MartyJ Member Posts: 819
    edited June 2013

    I have been doing PT for ROM and to help strenghthen the abs (now plicated).  The PT has an interesting device that she adapted then patented.  It is a silicon cup, sort of bell shaped, that is similar to the glass cups used in "cupping".  It creates a slight suction on the skin.  She uses it in scar therapy and has had a lot of success losening radiated tissue.  We are using it to ensure I don't end up with adhesions again on my ab incision.  If the cupping treatment might be of help in your therapy, I can get you her contact info for your PT.

  • bdavis
    bdavis Member Posts: 3,192
    edited June 2013

    Thats very interesting Marty... I would be interested in the product... to share with my PT.

  • MartyJ
    MartyJ Member Posts: 819
    edited June 2013

    I will see her tomorrow and PM you the info.  Her name is Susan Ragsdale King.  The fun part of PT is that she uses Pilates.

  • mags20487
    mags20487 Member Posts: 1,092
    edited June 2013

    marty that sounds cool....could you send me the info too.  My PT always loves to learn new things.  I am her first diep/gap patient and def her first lymph transfer patient.  Next week I get to go down to 3 x a week instead of 5...what will I do with all that time on my hands ;)

    Maggie

  • MartyJ
    MartyJ Member Posts: 819
    edited June 2013

    You got it Maggie!  Maybe that drain will be out so you can use the free time for walks?

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