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radiation-induced brachial plexopathy

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Comments

  • GramE
    GramE Member Posts: 2,234

    Barbara, have you tried those finger tip rubber thingies (now isn't that a great description) -like they use to count money in the bank?   Staples has them and I cannot imagine they are very expensive.  Maybe the kids count "wear" them and turn the pages for you...

    When I asked about RIBP, the rad onco told me that "only" about 10% get it.  I told her I wanted to be in the majority and NOT the minority who get it.   My surgery is Friday, and I will meet with her again to discuss rads and what to do to prevent it.   The place that does lympadema pt has no appointments for 3 weeks and I questioned what I would do IF I got it after surgery -- we can put you on the wait list...    Ånd how do they know when it is back to normal if no pre measurements???    Am I being too picky?  NO way - it is MY body, my potential for more limitations - dare I say quality of life??    Good Luck.  

    Nancy 

  • barbaraellen
    barbaraellen Member Posts: 87

    nancy, thanks for the tip about those rubber finger thingies,  you shot me back many, many years to the days when my mother, who was a big deal bookkeeper, like for sears, used to rifle through piles of checks or bills with one of those finger things, muttering to herself the whole time.  i would never have remembered that; thanks!

    it sounds like you have everything under control for friday.  you've got that surgeon paying attention now.  i wish you the best of luck friday, and think positive.  it helps.

    hang in there,

    barbara-

  • ronimom
    ronimom Member Posts: 34

    Hi Everyone!

    Now that I've found this board, I look at it every day...waiting to hear more and share my thoughts.  I was on the LE board and found you all plus more people.  How do I write on the LE board?

    I would love to have a Kindle.  You get them at Amazon.com.  Cost is 350, and then you have to buy everything you read for 9.99.  LE/BP is a very expensive hobby!!  I  swear by the lap "elevator" that I bought at Barnes and Noble for 39.99.  I found what I thought was the same thing on Amazon, for 29.99, but it lacked the extra pillow like things underneath that give it more of an angle.  I was lucky...my cleaning lady bought it from me, so I don't have to send it back.

    By the way, I am 63, and not only do I enjoy using my left hand for everything, I also have very thin hair, and am looking for new hairstyles for my 3 strands of hair!  I bought a hair dryer stand a couple years ago, and that is a big help.  But I can't do much with so little hair.  I have a good stylist and that helps.  I'd buy a wig, but then I wouldn't be able to put it on.

    By the way, my rad onc doc denies the rad did this to me. And my lymphedema PT tells me she hasn't seen my complication before.  By the way, I live in the Seattle area, where excellent cancer care is readily available.  So, duh!!!

    I am glad I'm alive, but what a way to have to live!!!

    Ronimom 

  • binney4
    binney4 Member Posts: 1,466

    Hi, ronimom!

    That's amazing that your rad onc denies the rads had anything to do with your Radiation-Induced BP.  Completely nuts! But then my surgeon STILL says he has never had a patient develop LE after any surgery he did. The fact that I have LE in both arms, my back, chest and side must just be pure cussedness on my part, because HE sure didn't have anything to do with it!Laughing

    You ARE on the LE board, but you're posting on a thread that about BP. The other threads are below this one on the board index here:

    http://community.breastcancer.org/forum/64

    See if that works. Just scroll down and click on any title that interests you, or start another subject of your own by clicking on the red box near the top that says "Start new topic."

    Ronimom, I'm sending you a Private Message, and in case you don't know how to find those, do this: Scroll to the top of this page. Up in the blue bar at the top there's an area that says, "Private Messages." There should be a little number 1 in the area too. Click on that area and it will take you to your private messages. Let me know if you have trouble finding it and I'll try again.

    Be well!
    Binney

  • binney4
    binney4 Member Posts: 1,466

    Hey, Erica, how's it going? Keeping you in my thoughts and prayers.

    I sent you a private message!

    Binney

  • ronimom
    ronimom Member Posts: 34

    Hi Binney,

    I did not see a place for private Messages, and no 1 inside anything.  Please re-send when you have time.

    Ronimom

  • binney4
    binney4 Member Posts: 1,466

    Hi, all!

    First, I found this kit for converting shoes with ties to easy Velcro closures:

    http://www.wearease.com/Shoe_Kits.php

    It says this:

    "Designed to convert most regular lace-up shoes into a simple, easily fastened hook-and-loop closure, the Wear Ease®  Shoe Fastener Kit™ is ideal for individuals suffering from disabilities that make tying shoestrings difficult or impossible. If temporary or permanent injuries to the back, hand or joints make wearing lace-up shoes a serious problem, the kit provides an easy solution. The Wear Ease® Shoe Fastener Kit™ is the inexpensive Solution. With no special tools required for installation, and low cost per kit, you can convert your shoes to hook-and-loop closures in minutes! The Wear Ease®  Shoe Fastener Kit™comes in four different colors; black, brown, tan, and white. A practical, inexpensive solution for children and adults who have difficulty with shoelaces."

    But who knows -- haven't tried it myself. (Would you believe I found this by accident while looking for a compression bra?!)

    Ronimom, I'll try this again and hopefully we'll get through! Go to the top of this page (you have to be logged in to do this).  There's a red band at the top of the page, and at the bottom of the band is a row of black (or dark blue or something) boxes that say:

    Forum Index - Active Topics - My Home - My Favorite Topics - Private Messages

    After the words "Private Messages" it should say "(1 new)" in red. Click on that and it should take you to your private message. Trouble is, if you can't find them they're TOO private! Let me know if it still doesn't work.

    Hope everybody's having a good day!
    Binney

  • binney4
    binney4 Member Posts: 1,466

    Ronimom, how are you? Haven't heard from you in a while and hope I haven't discouraged you with my muddled instructions! Frown Do let us know how you're doing!

    And I have a question for all you RIBP experts: Have any of you used a Flexitouch for your LE, or have you tried it and found it not helpful? I've been talking to my area Flexi rep, and some of the things she says about it made me wonder if it would be a good resource. Among other things, she said that pain relief is one of the best arguments they have for getting insurance approval, because it's gentle enough to help with conditions like fibromyalgia and Complex Regional Pain Syndrome. Erica, I was thinking about your pain. It's possible to get a free demonstation (on you!) by calling or emailing the company and connecting with your area rep. Their website is here: www.flexitouch.com

    Peace to all as we enter this Holiday season!
    Binney

  • ronimom
    ronimom Member Posts: 34

    Hi Binney and Everyone,

    Thanks for your private email, Binney.

    I am spending more and more time getting ready for the family Chrismukka (Christmas and Hanukkah) dinner I am hosting Dec 24.  By getting ready, I mean planning it in my mind, and decorating my home for festivity!!!   As you all know, doing this with 1 hand behind my back, it is taking a heck of a lot more time.  And then my left hand gets overworked.  Yada, yada, yada.

    I used to feel shoulder pain after driving my car with 1 hand.  A therapist recommended I get a Spinner Knob.  You have to buy it at a special place, and they professionally mount it on your steering wheel.  It cost me less than 100., and is well worth the expense.  Be prepared, you will need to re-take your driver test with the addaptation.  If you need more info, call Absolute Mobility Center at 425-481-6546.  They are very knowledgable and helpful, and could probably direct you to a place where you live.

    Thanks for being there for me.

    Ronimom

  • Sharalyn
    Sharalyn Member Posts: 23

    Hi everyone...

    I haven't been in the site for a while and kind of caught up with everyone today.  I can somewhat relate with Ronimom and fixing the hair thing.  Although I have a lot of hair, it is baby fine and I always spent time blow drying and styling cause it's stick straight too.  When my arm and hand became more unusable to raise above my head, I had to get my hair done once a week at a salon.  but I hated the old lady look even though I am 62 myself and the economy has dictated a re-evaluation of spending.   I now use a brush that blow dries and I sit down and rest my hand on my knee for support and it works!! I think Conair makes it. Oh...and a good hair cut once a month is the real key here for me anyway.   It is a true life saver cause I have always been a little vain (hate to admit that) and between that fat arm that doesn't work anymore and and the hair that I couldn't fix right....WOW, needless to say, tuff for me!  Have had to really work on the importance of what meaningful in life and what is just stuff.

    Just an update cause I haven't gotten to know the newcomers on board.  Am on Lyrica (which really messes with my ability to concnetrate and stay focused but does help with the nerve burn and jumpin....so I stick with it.  Recently went on Zoloft because as much as I tried to fight depression, it came in like a lion and I knew that I needed to take something.  Still getting used to it.  I will say it has calmed me down and made my husband's life less dramatic...tee hee, if you girls know what I mean.  It's like "poor us" but in fairness "poor them" too.  Good luck with your Chrismukka party Ronimom.  Around here, we call it Hanamus...but the last couple of years...Holiday party.  I hardly entertain anymore because I am right handed and my left is a complete "duh", just drinks and appetizors and card playing is about all I can muster these days.  I did help with our community party this year, but used ideas and organization meaning I just bossed everybody around...tee hee. 

    I do have an appt. with UCLA on the 30th of Dec. for muscle and nerve testing.  Not sure if they can do full on nerve tests with the affected side due to LE.  Not expecting any miracle but would like to have someone who is expert monitor meds and any other ideas they might have.  It only took a month to even get any appt. with these guys so they better be good!  I will definitely keep you posted and hopefully will learn something new that will help us.

    Thanks everyone for all your great "helpful hints".  Oh...and re the Kindle...I have been ordering longer books.  They are cheaper then I used to spend at Costco or B&N with a book card.  But the real reason is I was finding myself looking to reading as a chore because of the physical uncomfortableness (a word?) of it and reading is something I have always loved so much so it made sense to "bite the bullet" get it and I just love it!  Somebody said BP is an expensive habit and boy are you right on that one! 

    Peace and love to you all! 

    (((((H)) Shari

  • barbaraellen
    barbaraellen Member Posts: 87

    hi ronimom,

    we are also getting ready for chanuchris...we all seem to have our own pet names for it,,,and it is a bit more complicated than usual this year, since we are driving to florida on the 21st, which is the first night of the chan, and arriving in fla on the 24th, which is the eve of the chris.  so our 1st night this year will be friday the 19th, when my son and his wife and my 3 year old granddaughter will be here for the entire day (they live in arizona and we are in chicago), and my daughter and her family, including my 6 year old grandson and his 2 year old sister will be able to be here at the same time   it will be fun, but it will be crazy.  thank goodness my daughter will cook.  all i can do is set the table, slowly.  i have the same left hand problem you do, always getting overworked.

    i also have a spinner knob on my steering wheel, but i got it 2 years ago, when i could still get my right hand on the wheel, but couldn't count on it to handle a sharp turn.  i am impressed that you got one only recently...........you must be a braver driver than i am.  actually, my neuro suggested it, and sent me to the driver services department, a branch of the secretary of state's office.  and yes, i had to take more tests than an astronaut.  i am sure that was the longest exam i've ever taken.  however, you did not mention that you should keep a copy of the permit they give you in your glove compartment, because spinner knobs are illegal.  that is, in illinois they are.  so in case some cop spots you and decides you look like a wildchild, out to do mischief with your one-handed driving, you can just whip out your 3 or 4 page document and let him examine it as long as he likes.  but if he gets bored to death, it will be your fault.

    good luck with your dinner party, and let me know how you handled the details of it, or do you just supervise?  i just tried scrubbing those little red potatoes, you know?  and it was a complete joke, chasing the little guys around the sink.  if i didn't know better, i would have thought they were alive, or at least mechanized.  

    barbara-

  • barbaraellen
    barbaraellen Member Posts: 87

    shari, i am just rereading your last post, and i must ask you, how can you play cards?  do you keep a mahjong tray in front of you?  even so, i cannot imagine.  just don't tell me you can shuffle and deal!

    i hope that app't at ucla brings you some good news. 'bout time.........

  • binney4
    binney4 Member Posts: 1,466

    Okay, I'm interested to know about the card playing too!

    Awhile ago, barbaraellen, you asked me for a site with hints for one-handed cooks and I just now remembered. Here's one:

    http://www.infinitec.org/live/kitchens/singlehand.htm

    And here are some cutting and eating utensils -- I like the fork with the knife edge built into it:

    http://www.sammonspreston.com/app.aspx?cmd=get_subsections&id=100766

    And here are non-slip pads that hold mixing bowls and pans (and maybe red potatoes?) from moving around:

    http://www.sammonspreston.com/app.aspx?cmd=get_subsections&id=100775

    There's lots more to explore there -- let us know if anything strikes you as especially hopeful. The idea I found most interesting was the scrubber that attaches to the inside of your sink so you can just rub stuff against it.

    Onward!Smile

    Binney

  • Sharalyn
    Sharalyn Member Posts: 23

    Thanx bonnie for that info.  I put the single handed cooks in my favoirate places.  I am not cooking much anymore...very simple things like dumping the salad in a bowl and putting something in the oven.  No more baking or frying for me.  

    Re; Maj question and cards.  I play Maj with one hand because it is tiles...not cards.   but for cards, someone else shuffles and deals for me and I hold my cards with the left hand.  Needless to say, games on computer are out for me now because my hand reacts too slowly and I am right handed.Cry  what can I say.  You BP'er's know the deal.

    As Binney says, Onward! Smile

    Shari

  • binney4
    binney4 Member Posts: 1,466

    Hey, Erica!Smile

    Just wondering how it went with the new neurologist and the pain clinic. Thinking of you, praying for you, holding my breath! Let us know how you're doing -- even if it's a rant...

    Shari, hi!

    Do you use your left hand for the mouse? I do. Took me a couple of days to get used to it, but now it's working fine. And with the left-hand-only keyboard I love playing computer games -- well, a couple of them, anyway. I like the brainless sort.

    www.jigzone.com has a daily jigsaw puzzle you can elect to work with 4 pieces or a couple hundred or anything in between.

    http://www.pepperidgefarm.com/pink/game.aspx has a simple (can be frustrating, of course!) memory game you can play and they donate money each time for breast cancer research

    http://www.freerice.com/index.php is a vocabulary game that gets harder the more right answers you get, and for each right answer they donate a few grains of rice to a hungry country (very nice excuse to play games on the computer!)

    And I wanted to ask you about your voice-activated thingy -- have you tried it? Very anxious to hear how it goes for you.

     Big hugs!
    Binney

  • GramE
    GramE Member Posts: 2,234

    Thanks for those links for hand limitations.   I had multiple reconstructive surgeries on my dominant, left hand/wrist.   It is no fun and i just hate having to ask at the grocery store to make the bags light.  I got into a major fight w/cashier and bagger the other day and ended up in tears.  Why is it so hard for them to make the bags light?   The cashier told me I had too many groceries, of all things !!!  I should have reported her, but it was just too stressful and I wanted OUT of there asap.   So she then puts 10 cans of soup, 4 pound bag of sugar and 6 frozen dinners in one bag...   Then they have the nerve to post a sign - if you need help or are disabled, just ask... grrrrrrrrrrrrrrr ...

    I like Book Worm, like scrabble and can do w/one hand online. It is mac friendly, but many games are not compatible.   The voice activated needs to be programmed to your voice and it takes a long time to get it going good.    I am lucky in a way, as my wrist is mostly frozen in place and very weak, but fingers are not so bad, even w/ neuropathy.   

    Merry Christmas ((( friends ))),   nancy 

  • GramE
    GramE Member Posts: 2,234

    try this link for playing card  holders:

    http://www.youcantoocan.com/Clear_Playing_Card_Holders_P47C32.cfm

    During rehab they made me one about 10 inches long.   I put my name on w/magic marker so no one steals it... And no one minds me asking them to shuffle or deal for me.   I play bridge 2 or 3 times a week.   Last week I bid and made a grand slam for the first time.   BTW, by the way, I only play for fun - not master points.    

  • BMac
    BMac Member Posts: 115

    Nancy, I really feel for you.  Next time (I hope there isn't a next time!) go to Customer Service and ask for the Manager.  That cashier needs to be educated in good customer service.  In fact, why not call the store manager now (especially now that you're calm and not in the heat of the moment) and very calmly explain what happened.  It could save someone else (or you another time) the same bad experience.

  • GramE
    GramE Member Posts: 2,234

    Thanks Barbara, but I found out that around here the customer is NOT always right.  I just do not think I have to go around explaining myself to everyone I come in contact with who is an idiot.  Maybe I should go back and wear my " Breast Cancer Sucks " sweatshirt... and no wig or hat.   

    When I worked retail, the customer was always right,even if the item was torn, worn, dirty or whatever. We always gave a refund or exchange.  One man came in with a jacket on, took things out of the pockets and handed the jacket to me, saying he did not like it anymore and wanted his money back.   I told him it was worn and he did not have a receipt.  Long story, but I turned it over to the manager and this idiot DID get a refund...   Go figure.   

    I do not have to go to that grocery store again, but that day it was on the way back from other things I was doing.    In fact, one store has 5% off your total bill on Thursdays for "senior citizens" over the age of 55, and I more than qualify.   They also have triple coupon refunds up to 99 cents.   

    Merry Christmas to everyone.  HUGS,  Nancy 

  • GramE
    GramE Member Posts: 2,234

    I had my final pathology report yesterday and there is NO evidence of carcinoma.   I was told that from now on, I am to limit lifting and carrying to no more than 10 pounds to prevent lymphadema.   Since I already have hand/wrist limitations and nerve damage, this is doubly important for me.   

    I will begin the radiation worries once I have an appointment in a couple of weeks.   The side effects scare me even more... But the surgeon did say that rads help keep swelling down...  Go figure..  The can cause and help prevent swelling...  

    Happy New Year to everyone.   Hugs,  Nancy 

  • binney4
    binney4 Member Posts: 1,466

    HOORAY!! I love good news, and "NO evidence of carcinoma" is as good as it gets! Whew! How's the healing coming along?

    As for preventing lymphedema, there are guidelines for that available from the National Lymphedema Network in their Position Papers on Risk Reduction, Exercise, and Air Travel here:

    www.lymphnet.org

    And at StepUp-SpeakOut here:

    http://www.stepup-speakout.org/riskreduction_for_lymphedema.htm

    The surgeon says rads helps keeps the swelling down, huh? Laughing Hmmm...that's a new one.

    I hope your New Year is ALL good news!
    Hugs,
    Binney

  • GramE
    GramE Member Posts: 2,234

    The healing if good - one tiny spot with a scab.  I have always healed well, even with all the wrist surgeries I had before.   Thanks for the links, Binney.  I am writing down questions and will meet with the rad onco again after the first of the year.   My skin is super sensitive to begin with and all I need is peeling and burns.    Knowing MY luck,  I will surely have them...    

    Happy New Year and only GOOD news and GOOD things going your way.   Nancy 

  • GramE
    GramE Member Posts: 2,234

    Is there a shopping list to get ready for radiation?  I assume lotions and a pillow to keep the arm on that side elevated.  Anything else?   Hot or cold packs?   

  • epete
    epete Member Posts: 1

    I'm new to this wonderful site and have just read most of your posts. I did an alternative treatment for inflammatory breast cancer called hyperthermia combined with daily low-dose radiation. There was never any surgery. My cancer is gone but like you , I live with lymphodema. The first year, my shoulder and collarbone pain was terrible.Then my arm,hand,and fingers went numb. The shoulder pain is much less now and I manage the notorious tingling pretty well. I've learned to be left-handed. I take Neurotin if I get shooting pain - rather than Lirica. Lirica made me gain weight.

    I wanted to share some felicitous things I've found helpful:

    With only my left arm, ratting my hair was impossible.Alas, I took a potato chip clip (that holds the bag closed), ran a string through the little holes and tacked it to my bedroom ceiling.  It grabs a hunk of hair and holds it while you rat away!  Vain, but I hated having flat hair.  Also, the little tubs of cream cheese fit perfectly in my kitchen sink drain; I can easily get the spread out and have delicious toast. Also I use spray butter.  I too, just discovered the electric knife - I felt so emancipated with that discovery! 

    Thanks for all the helpful info and support.

  • binney4
    binney4 Member Posts: 1,466

    Hello, epete, and welcome!

    Thanks for sharing those hints -- the one with the chip clip hanging from the ceiling brought a chuckle as I tried to visualize it. Way to go! You just have to hope the phone doesn't ring while you're clipped to the ceiling. Laughing Your creative, can-do approach is an inspiration.

    Be well!
    Binney

  • GramE
    GramE Member Posts: 2,234

    Hi epete. what a clever idea.  Each time I read of a suggestion I think of Anne Murray's song -- I am WOMAN...  

    As an update,  I have some pulling where the lump and re excision was done. Have been putting Vitamin E cream on the scars and they look good. I do the exercises for post mastectomy and have pretty much full range of motion.   

    I switched to a smaller purse with handles instead of a shoulder strap and am considering going to a fanny pack.   Why on earth do I need to carry all that junk in my purse?   I am going to put the overflow - the "in case I need it" items in a cosmetic bag on the floor in the back of my car.  

    Binney, I  am now addicted to the jigsaw puzzle link...    Between Bookworm and it, my fingers keep busy...   Have  a good day.   HUGS,  Nancy

  • ronimom
    ronimom Member Posts: 34

    Hi Everyone, and Happy New Year!

    I was watching the local news tonight and they did a segment on peripheral nerve surgery. 

    www.king5.com/health/stories/NW_010409HEK_nerve_pain/SW.3b6491e3.html

    I wonder if this would be an opportunity for us?

    Does anyone want to facebook with me?  Please let me know your email and we can be friends and talk a lot easier.  ralpha45@comcast.net.

    Ronimom

  • ronimom
    ronimom Member Posts: 34

    Well, I just did another google search on BE/peripheral nerve surgery.  It does not sound promising for us LE/BE sufferers. I am tired of my unremitting nerve pain.  No wonder I take antidepressant and sleeping meds.

    I have a breast mri scheduled for tomorrow.  I requested it after I read an article saying it is important for high risk women to have alternating breas mris and mammograms. My lump did not show up on my mammo to begin with.  I think I'm fine, just want to make sure.

    I feel like my LE/BP is a real pain in the arm!!!  Thanks for listening to me vent!

     Ronimom

  • GramE
    GramE Member Posts: 2,234

    Hugs, ronimom.  It just bugs the h... out of me that it is taken for granted that these pains are in our heads and we are looking for attention.   We know our bodies and we know when something is not right ---   Even though we are not formally trained in medical issues...  We are out there in the trenches fighting the battle.   No problem with venting... I just did it !!!!!

  • ronimom
    ronimom Member Posts: 34

    Thanks, lefty.   And my MRI is negative!!

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