Not sure what to expect

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Cheryl417
Cheryl417 Member Posts: 16
edited June 2014 in Lymphedema

I  will start intensive phase of lymhedema management on Monday for 2 Weeks which will include  Compressive Decongestive Therapy, manual lymphatic drainage and exercise. I am not sure what to expect. I will be 7 weeks post op for a bilateral Mastectomy on Friday. I am so tired of all of this, it has been a rough ride but I am still trying to find things to be grateful for. If any one has gone through all of this I would appreciate you sharing with me, I appreciate all of your support

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  • GmaFoley
    GmaFoley Member Posts: 7,091
    edited October 2012

    Cheryl - the place to go for answers and encouragement is probably to go to the Topic: "GRRRRRRRR... I hate LE". http://community.breastcancer.org/forum/64/topic/759378?page=175    .. There is alot of good information there... I only have a mild case that involves my upper arms and trunk...

    First visit they usually evaluate how bad the LE is ... They will measure both arm and check your trunk for signs of swelling... After that maybe a light touch MLD - Manual Lymphatic Drainage.. It doesn't hurt.. and is kind of relaxing... They will show you how to breathe... and show you what to do and what not to do... At the end if you are having swelling in your arm/arms they might wrap you or order sleeves to wear... I have 2 sleeves and gauntlets(gloves without fingers).. You will get through this... and the GRRRRR ladies are awesome..

    You can also go to: http://www.stepup-speakout.org/What_ is _Lymphedema.htm for more information on LE... 

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  • vlnrph
    vlnrph Member Posts: 1,632
    edited October 2012

    How's it going Cheryl? I remember stopping at the grocery store after being wrapped for the first time, glad that I had a stretchy knit long sleeved top on. If I had gotten mugged in the parking lot, my arm would have made a great club.

    I already had a sleeve, purchased in advance for air travel but then needed a different size a few weeks later. My fingers puffed up with the gauntlet so had to get a higher compression glove with fingers. 

    Many of us are in it for the long haul - come back any time with questions/concerns. 

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  • Cheryl417
    Cheryl417 Member Posts: 16
    edited October 2012

    One day down and already I hate it, my arms are less mobile than they were after surgery when they are wrapped. It is not going to be a fun 2 weeks. I am finding that it is even more difficult to sleep but God that shower in the morning is a spritual experience, the best time of the day. Reminds me when I got my first shower after the drains were pulled. I know that once I get my sleeves in 2 weeks that things should get better. I understand about the arms being use or could be used as a club, that crapp is heavy. Thanks for the support, I really need it.

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  • GmaFoley
    GmaFoley Member Posts: 7,091
    edited October 2012

    Cheryl, it will get better... I am a fortunate one as far as wrapping.. my LE is mainly in the trunk so I am just squashed instead of wrapped... It did resently go to both upper arms and I have to wear 2 sleeves, but it is doable.. YOU CAN DO THIS... Lots of ladies here can help you through this.. 

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  • NatsFan
    NatsFan Member Posts: 3,745
    edited October 2012

    Cheryl - it's great that you're getting the Complete Decongestive Therapy - the idea is to hit it hard with everything they've got initially - MLD, wrapping, etc. to bring down any swelling and stop it from progressing.  Your therapist should also teach you techniques for managing your LE yourself when that first big CDT push is over.  When I was first dx with LE, I went to my lymphedema therapist (LET) 5 days a week for the first week, and 3 days a week for the next 3 weeks.  I was wrapped pretty much 24/7 that first week, then once I was fitted for my compression sleeve and gauntlet, I wore those every day and wrapped only at night.  At the end of the month my arm swelling had gone down considerably, and I was able to begin experimenting with wearing compression only when exercising or otherwise stressing the arm, and wrapping only when needed.  Not everyone can get to that point, but it's great that you're getting care early, before your LE gets a chance to advance.  The earlier your LE is treated, the better chance you have of managing it and keeping it from advancing.  My LET also designed a a safe workout program, including weight training to build strength in the arm.  Starting off slowly is the best - she started me off with no weights and 1 pound weights for most of the exercises, and only raised reps and weights very slowly over a period of months.  Your LET should be able to give you guidance on this as well, and teach you how to recognize when you need to back off for a bit.  

    These first few weeks are the worst with LE - unfortunately everyone is different, so it take a bit of trial and error to figure out what works for you to manage your LE.  Once you figure it out, it does become a bit easier.   Good luck!!

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  • GottaloveNED
    GottaloveNED Member Posts: 211
    edited October 2012

    Cheryl, the beginning is miserable because you feel like you are already dealing with the cancer crap and this just piles more on. But if you catch it early before it's chronic, it's much more manageable. You do get used to bandaging and sleeves, it's weird at first, but you learn how to go about regular activities feeling like the michilin man. Any practical "how can I" questions, ask them here. These people are a fount of knowledge!!! Good luck and hang in there!!

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  • drusso1313
    drusso1313 Member Posts: 1
    edited October 2012

    I just had a bilateral mastectomy with reconstruction on 9/28/12 and have a trip planned 12/26/12 (6 hour flight) they removed the sentinal lymph node and a couple surrounding it.  Can anyone give me information on what to expect, do, or ask my doctor?  I keep hearing about lymphodemia and it has me worried.  Any info would be appreciated as I am so confused.

    I do have a card that I have to give to security due to the spacers and temp implants that will set off metal detectors but that is all that I know as of now.  I go to my surgical oncologist tomorrow and regular oncologist on 10/16/12 so any questions I should ask I would appreciate.

    Feeling very overwhelmed at this point.

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  • GmaFoley
    GmaFoley Member Posts: 7,091
    edited October 2012

    Drusso - don't be worried - here is a good site that has many pages of info on LE.. if you take care and follow the precautions you can be fine...but these precautions are for life : http://www.stepup-speakout.org/riskreduction_for_lymphedema.htm - A good thing, that didn't happen with me,  is to be measured early so you can see any signs of swelling coming... If you stay on top of it and catch it early it doesn't seem to rule your life.. Many women don't get it with several nodes taken out. Do make sure the nurses and doc do Blood Pressure and labs/needles in your leg not your arms...

    For Airplane : You might want to go to a LE therapist for an eval and get some sleeves made for the airline trip - I was able to get my sleeves without custom making - I fit in the ones off the shelves. - While flying - get up and move and drink plenty of water..

    There are other page that give the doctor information: http://www.stepup-speakout.org/essential informat for healthcare providers.htm  and http://www.stepup-speakout.org/what_we_need_healthcare_providers_to_know_about_lymphedema.htm 

    Hopefully Binney or Kira will chime in with any more information needed...  

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  • vlnrph
    vlnrph Member Posts: 1,632
    edited October 2012

    Hey Cheryl - this too shall pass (at least the intensive part!) I only had one arm done and can't quite imagine what it would be like to be restricted with both. Do you have help around the house? If not, let those dust bunnies multiply and take it easy. I give you permission.

    Stay well hydated even though I'll bet going to the bathroom is a challenge. It's important to keep that nasty lymph fluid diluted so it can drain.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited October 2012

    Drusso, hello and welcome!Smile

    This whole issue of risk reduction after breast cancer treatment really is confusing, and even scary, because we get so little good information from our doctors. That's mostly because they're not the medical professionals who treat it--well-trained lymphedema therapists are.

    So what might really help is a referral from any doctor on your team (even your PCP) to a well-qualified lymphedema therapist for an evaluation and some personalized risk-reduction tips. Here's how to find one near you:
    http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

    Because doctors often don't know much about lymphedema, you might hear from some of them that you're not at risk, but you are, as so many women here can tell you. Stick to your guns and insist, and I'm betting you'll come away from your therapist appointment reassured and armed with the information you need to protect yourself.

    Keep us posted, and please tell us how we can help,
    Binney

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  • Cheryl417
    Cheryl417 Member Posts: 16
    edited October 2012

    Both arms, hands and chest have the dressings on them. I am typing with one finger. Bathroom is a challenge, living in sweat pants and tank tops. 3 days down, nights are  hard  to sleep but I keep hoping that this will all be worth it by the time the 2 weeks are over with. Trying to stay positive. thanks for all the support and encuragement. I do appreciate it.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited October 2012

    Wow, Cheryl, is your chest wrapped too? Can you breathe?!Frown

    I know it's a chore to move, but gentle exercise while wrapped is a huge help to moving fluid and assuring great results. Did your therapist give you some exercises to do?

    You want to be sure to learn to do the arm/hand wrapping yourself, as well as the self-MLD. Those are essential tools to keep yourself well and be able to handle a flare promptly and confidently.

    You should not have to wait two weeks to see good results--you should be seeing reduction already, yes? Celebrate it!Cool

    If you can pull off feeling positive and it helps, then brava! But just so you know, some of us have indulged in a bit of bandage-hurling as we've gone through therapyEmbarassed, and we're none the worse for itWink. Please feel free to rant--we all get it.

    Hang in there!
    Binney

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  • carol57
    carol57 Member Posts: 3,567
    edited October 2012

    Cheryl, on some of the LE threads we've been known to invent athletic events for our own Olymphics.  Bandage hurling certainly is one of those events--who can hurl the bandages the farthest?  One-finger typing might also be added to the event list. Thanks for adding that idea to the mix! 

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  • BeckySharp
    BeckySharp Member Posts: 935
    edited October 2012

    Oh Cheryl--Being wrapped just with one arm was not fun--but two arms and chest?  You really are the Michelin Man!  I can wrap my arm easily but I still have not been able to do my trunk alone.  For bathroom while wrapped I bought really large food service gloves (the kind they use like in Subway).  They are inexpensive and you can toss the glove after use. Hang in there.  Soon it just becomes a bad dream when over.  Becky

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  • Cheryl417
    Cheryl417 Member Posts: 16
    edited October 2012

    So glad that you all are here. Last night was the worse so far. Having my arms done is one thing, but my chest as well is another. I was bound after my sugery for 2 1/2 weeks and I was able to deal with that . Part of the problem is that I developed a pressure sore on my incesion line that is still healing, having that bound yesterday was not good. I am going to have a come to Jesus meeting with my thearpist today. When he scheduled the appointments, he did not schedule enough time so he was real rushed yesterday and did a slopy job binding my chest. First year nursing students could have done a better job. Also the wrapping irretated my incesion line as well as the wound.  We are going to have to add some padding rather it is a ABD pads or something like that for cusion. And he is going to have to slow down. I could do my chest if I didnt have my arms bound. I work with Hospice and dressings is one of my things and a pet pieve of mine if not done correctly. I am hurting so bad this morning that I need to take pain meds but will have to wait untill I get home after my appointment. I am less mobile than I was after sugery except not having to deal with the drains, thank God. 

    I am so gladthat you all are here and can understand. The dressings are making me sweat more if that makes any since. The salt from the sweat is making me itch and kind of burn. My arms constantly feel like they were buring and I was told it was due to the extensive swelling, now that is worse.

    I have taken enough of your time, thanks for listening, thanks for being here. I just want to curl up on the floor and cry. But I am off to my nent appointment.

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  • GmaFoley
    GmaFoley Member Posts: 7,091
    edited October 2012

    Cheryl - I personally, haven't had to be wrapped - compression sport bras, binders, sleeves and gauntlet have done it for me... BUT I do know that binding should be uncomfortable but not worse than before... I have an open wound right now and my LE therapist won't bind my trunk because of it.. He says the wounds have to heal completely first... If anyone else wants to chime in here... Am I incorrect in that?.. My LE T is more MLD and getting the fluid out of the area in the trunk that wrapping.. I am praying you get comfort soon!...

    Another thing I have noticed is it is a "try and find what works" What works for one, doesn't always work with others... so we have had to figure out what works for me... You and your LE therapist will probably have to do the same thing... Patience is a virtue - but even with my sleeves I have had what the ladies above call - "Rip off moments" or "Fling the wrap" This soon will pass and you will figure out what works for you...

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  • Binney4
    Binney4 Member Posts: 8,609
    edited October 2012

    Cheryl, I'm worried 'bout ya'!Frown How did it go today? LE is an extreme sport, for sure, but what you're going through sounds to me like it's a bit TOO extreme. I hope you insisted he back off, because you should NOT be hurting. Uncomfortable, yes. Clumsy, you betcha. But in pain, NO!!

    For starters, many (most?) of us with truncal swelling have never been wrapped. Truncal LE almost always responds well to MLD and gentle compression. There are compression bras and camis that make chest/breast wrapping unnecessary in almost all instances. Certainly if it's irritating your incision it's the wrong approach. MLD and gentle compression (even a sports bra or UnderArmour-type shirt) is enough of a concession to this rotten condition.

    Even doing both arms at the same time may be an issue. TALK to this therapist, and insist he take into account your quality of life. Treatment is no lark for any of us, but it shouldn't be this debilitating either.

    JMHO

    Gentle hugs!
    Binney

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  • Cheryl417
    Cheryl417 Member Posts: 16
    edited October 2012

    Had a come to Jesus meeting with my thearpist today. He just bound my chest and put these wedge type things under my arms. He did address the incesion site issue and listen to my concerns about the and the wound which is doing better.. Today just my upper arms are wrapped as well as my chest, but it looks like the fluid is going down my arms more now. I know it is trial and erro to a point. but I getting so tired of it, He also did manual drainage. He wants me to get a order from my sugeron for bilateral compression sleeves, a compression vest as well as the gloves with the fingers out so I can fitted for those and the end of next week. I think that once I am in those it will make a difference or at lest make things a little easier I hope . I have a massage thearpist  who has been trained  to  do the manual drainage once these 2 weeks are over with. I am going to have my partner go with me tomarrow for she can observe what he is doing as wel as put her 2 cents worth in on this. If it gets down to it I will get my sergeron involved to have a prayer meeting with him. We are limited with lymphedema specialists in this area but if I need to drive to Charlotte to get better care I will. I need to get results not just  be a pt and is rushed through a assembly line sort of thing. I know that the lymphedema is somthing that I will continue to have to deal with and that there are no quick fixed but I have been so blessed with a great sergeron, and primary care doc and have recieve excellant care and I hate it and have no tollerance when I see substanderd care on a personal or a professional level. I have been through enough and I need people (medical professionals) to listen and see me as a  whole person and not just a condition or diganosis. I will be 8 weeks post op tomarrow and thankful for the many blessing that has happened especially finding you all on this site. It has become my life line. Thank you all for your concern, suggestions and letting me vent.

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