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radiation-induced brachial plexopathy

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Comments

  • Cincerely
    Cincerely Member Posts: 56

    AWESOME news Binney!!  I just read his blog, and added it as a "Like" on Facebook....  I am doing the happy dance in my head - as others around me may not quite understand my excitement! 

    I also reached out to the University of Maryland - Center for Pain Studies - to see if my own experience and medical history would be beneficial to their project.  They are dedicated to identify and effectively manage cancer treatment related pain.  http://www.ruinpain.org/content/news-and-events/news.htm

     I was able to obtain a couple of medical articles written on the subject of RIBP & CIPN that I can share.  If anyone is interested in reading them, please send me a Private Message.

    I'll look forward to the postings regarding the Feldekrais too. 

    Thanks for all you do Binney - it is so much so appreciated.  

    Let me know what I can ever do to help.

     Love to all -

    Cindy

  • Bold
    Bold Member Posts: 306

    I do not know if I belong in this thread but here's what happening.  I feel as though I have tendinitis in my for arm and elbow. It hurts and aches for the past 3 months. My husband tyred to blame it on the iphone. Ha. I have no swelling however I feel like I am loosing strength in my arm. grrrr. I have been an athlete in my life and have always been super strong right armed. Now not so much. I had a lumpectomy of a 3.3cm tumor and the full gamut of treatment. I have rib pain and a sore breast. My breast surgeon basically told me that will never go away. AHHHHHH! Any way just real curious on an opinion. Thanks for the thread. Again just wonderful woman.

  • Cincerely
    Cincerely Member Posts: 56

    Hi Bold -

    I'm sorry to hear about your loss of strength and pain - not sure what specific treatments you have had - but I can share my own story with you - I started another discussion thread you may already have seen - but just in case you haven't it's titled Nerve Damage - CIPN & RIBP  http://community.breastcancer.org/forum/69/topic/762916?page=1#idx_5   It has my track record and additional places you can go to for additional information.

    There are a lot of those of us trying to survive survivorship and we are trying to get the medical and research fields involved, aware, and dedicated to help.  The more we all communicate and share, the more knowledge we'll have to bring to the table.  

    Keep up the fight - stay strong.....

    Cindy

  • binney4
    binney4 Member Posts: 1,466

    Hi, all!

    ***ANNOUNCEMENT!!!***ANNOUNCEMENT!!!***ANNOUNCEMENT!!!***

    I'm so excited to announce that Dr. Elise Radina at Miami University in Ohio is conducting a survey to explore the impact of bc-related RIBP. All she needs is YOU! Here's a copy of the study announcement with information about who to contact to take part. PLEASE take advantage of this opportunity to AT LAST make our voices heard. Hugs,
    Binney

    Study Announcement: Recruitment of Volunteers
     
    Exploring the Personal Impact of Breast Cancer-related 
    Radiation Induced Brachial Plexopathy (RIBP)
     
    Women and men who have been diagnosed with breast cancer-related radiation induced brachial plexopathy (RIBP), with or without lymphedema, are invited to participate in a study. The purpose of this study is to help better understand patients’ experiences with RIBP including symptom experience, lifestyle changes, health information use, interactions with health care providers, personal coping, and the impact of RIBP on family or relationship quality of life.
     
    Volunteers will participate in an informal interview over the telephone, via Skype, or face-to-face with an interviewer. The interview may last up to 90 minutes. 
     
    This study has been approved by the Miami University Institutional Review Board: 11-052.
     
    If you would like to participate in this opportunity, please contact the Principal Investigator:
     
    Elise Radina, PhD, CFLE
    Associate Professor
    Family Studies & Social Work
    Miami University
     
    radiname@muohio.edu
    513-529-3639
     

  • ronimom
    ronimom Member Posts: 34

    Hi Barbaraellen,

    Please contact Janice Vincent Feldenkais@mindmoves.com, 425-278-2220.  Janice is well connected in theFeldenkris community and most likely will be able to recommend a practice near you.  Please give Feldenkrais a try.  It is the only thing that has helped me.  I am moving my right arm with my shoulder, move it across my body, touch my face, sitting squarely, balancing better.  Please let me know what you find.  Binney has been communicating with Janice and there will be some F info on the Step our Speak up website soon.  Good luck!

    Ronimom

  • lionessdoe
    lionessdoe Member Posts: 45

    Cincerely,

    I aked a long time ago what I was in for. You have pretty much described my RIBP. I thank you! You absolutely can get SSDI with this condition. I would like to direct you to:

    http://www.disabilitysecrets.com/

    You should hire an attorney! 9000 boomers are retiring each day! They are inundated. There are attorneys that will take you from the get go rather than waiting for a denial and then only taking your case at the appeals process. Search for one til you find one. One that only does Social Security Disability. You are less likely to be denied if you start with one. I know one that can go anywhere in the US if you fail to find one locally. 70% of all people are denied on first try whether they have a fatal illness or severe arthritis. Look for your local Center for Independent Living. They should be able to answer any questions you have for free. Just google your county followed by 'Center for Independent Living'.

    An attorney, by SSA rules can only take 25% of your first check. Trust me, it's worth it. I am an advocate for people with disabilities and I work in this field every day.

  • Cincerely
    Cincerely Member Posts: 56

    Thanks Doe!!

    I greatly appreciate your post and all the information regarding the SSDI process and your recommendation!  I will most definately look into all of those areas you've listed to help guide me along.  

    As we all deal with our own battles of "surviving survivorship" it's each other's individual successes that unites us and gives us strength as a group - ever sharing - allowing our voices to grow in numbers to earn the attention needed, and most importantly, the attention deserved.

    Thanks again for the guidance!  

    Stay strong -

    Cindy

  • Cincerely
    Cincerely Member Posts: 56

    I have an update to share - I went to my Physical Medicine Dr last Friday - We discussed my increasing symptoms of:

    · Sleeping difficult - wake every 1 - 1 ½ - 2 hours from pain and discomfort - I dream about the pain, uncomfortable feelings and that my right hand no longer is useful - so, not only is it my day to day - but also continues into my nights.
    · Ambien helps the sleeping - without it, there would be no rest - she (Dr) did say that I should request my Primary Care Dr to change it to the CR type of Ambien which is more time released, and it may help me rest longer periods between waking.
    · I miss at least one day a week from driving to work and getting up early when I had a bad night - I then work some from home, so it is not really counted as sick day or missed day. I am fortunate in my line of work to be able to work remotely if necessary. Still - it is hard and way more tiring than before the symptoms progressed.
    · Occasional headaches 7 - 14 times per week - strong pain in front side of forehead - nauseating for minutes - off and on over period of days
    · Right side neck/jaw pain and jaw weakness for chewing - this is weird, as my jaw gets so tired, I can't chew but for a few moments. Then stop chewing and rest a few longer moments, and start again. Because of this, I have been choosing softer foods.
    · Increased left hand pain - finger nails & fingers & palm/thumb
    · Increased left forearm pain, top and bottom
    · Increased left upper arm pain in front bicep
    · Increased left side of chest near armpit stings/burns
    · Increased left hand weakness - dropping more and small tasks more difficult - I almost took a co-worker's eye out this week, when the little coffee creamer cup went flying out of my hand, up in the air behind me, just as the guy walked into the break room! Oops!
    · Left hand coordination getting worse
    · Increased right hand/fingers/arm very itchy
    · Right hand sensitivity greater -and again not being able to stand the right side to touch anything - not even allow it to rest on my leg while sitting - I have to turn it upwards so the back of my hand rests on my leg.
    · Right hand weaker - and markedly thinner, muscle tone almost non existent - bones protrude, skin sunken in around them - bruising easily occurs - forefinger will sometimes not move at my will.
    · Right fingers move on their own, lift up, bend, twitch etc. When they do this, I push them down or straighten, but as soon as I relax, they go right back to moving on their own.
    · Right forefinger always pulls up like it's always pointing
    · Right fingers feel like they are quickly vibrating inside, but not outwardly moving - Left fingers started doing the same.
    · Right hand - little and ring fingers always feel like they are bent under even when straight
    · Right fingers will often twitch and jump uncontrollably
    · Right hand increased pain in fingers, finger nails, and large thumb joint
    · Right forearm strong sharp and burning pain, top and bottom
    · Right upper arm bicep and front shoulder sharp and burning pain
    · Right upper arm above elbow nerve/muscle constantly jumping/twitching
    · Right back shoulder nerve/muscle jumping/twitching
    · Right body side between ribs nerve/muscle constantly jumping/twitching
    · Right side of back near spine nerve/muscle constantly jumping/twitching
    · Right side of spine between shoulder blades area burns
    · The nerve/muscle jumping/twitching in hands/arm/back/side makes me feel exhausted - it just doesn't stop - 24 hrs a day, something, or all are moving - its not painful when the nerve/muscle jumps/twitches, just annoying and exhausting.
    · Not sure what to do with the right arm anymore, how to hold it, where to rest it - hate the feeling when my hand touches anything
    · Toes more painful on top of nails and toe tips
    · Toes are numb tingly from above foot joint - stronger tingling/pain than lower leg symptoms
    · Legs below knees tingly through the feet - constant
    · Legs- restless legs during the day and more so at night
    · Top of feet often intense pain
    · Bottom of feet get burning hot - yet to the touch they are cool. This is throughout the day and night
    · Right knee misfires a lot lately.... I will be walking or standing, and at anytime my right knee will buckle.
    · I am riding a recumbent bike 5 miles - 32/35 minutes, on level one, 4-5 days per week - but still feel so weak at the beginning in upper legs and exhausted at the end.
    · Stopped Aromasin for one month to see if it was adding to my pain and discomfort - no improvement or change noticed - I only have 9 months to go on it to complete 5 yrs, so I started taking it again on 2/14. I will finish the 5 year cycle on this drug for my Breast Cancer.
    I asked her what she thought about acupuncture and it possibly helping with the stinging/burning pain - she was not sure, as she does not perform that. However, she has a colleague that is an MD and performs acupuncture. She said she'll reach out to her and get some feedback on whether she thinks it may help, or possibly hinder and cause the nerves more distress and irritability. Haven't gotten a response on that question as of this writing.
    I also said that since my symptoms are getting worse, I wasn't sure if the low-dose Cymbalta was still working. She said that the dosage can still be increased and be considered low-dose for nerve pain treatment as opposed to depression doses. But, she said to see if it is working at all, stop taking it for a week. Within a week's time I would be able to tell by the way I feel regarding pain. I stopped taking it on Saturday, and by Tuesday I could definitely tell it must have been helping to take the edge off of the pain and helped with the feeling of raw electrical wires running through my limbs... I also noticed increased sensitivity to noise causing me to feel like my insides were startled by anything remotely loud. I started back on the Cymbalta today - Thursday - in hopes it'll go back to taking that edge off of some of the symptoms.
    Good news to share - I will participate in two separate studies relating to RIBP - one with Dr Dorsey, at the Univ of Maryland. The other with Dr Radina, at the Miami Univ of Ohio. I am looking forward to helping those who have a desire to help us survive survivorship!
    Hope all of you are doing well - stay strong - survive survivorship!
    Cindy

  • binney4
    binney4 Member Posts: 1,466

    Cindy, thanks for the update, and I'm so sorry for the areas of progression and what they mean for your continued ability to move ahead. You really are an inspiration, but that has to take a toll on you. Please know you're in my thoughts often throughout the day, and if there were some way to cheer you on I'd sure want to do it!

    Terri, what news? Been a long time -- please do let us know how your mom is doing (you too!)

    Mighty hugs,
    Binney

  • binney4
    binney4 Member Posts: 1,466

    Okay, exciting second half of Joe Zuther's articles on RIBP was posted today, this one dealing with treatment of RIBP with and without LE, but with a focus on how to manage the LE (and why it's so important to do so.) It's here:

    http://www.lymphedemablog.com/2011/03/01/treatment-of-ribp-in-the-presence-of-lymphedema/

    It's so great to see this addressed in this forum, which is read extensively by both therapists and patients. There's a place to add your comments on that page, which would also help with awareness.

    YES! Thank you, Joe Zuther and Academy of Lymphatic Studies!
    Binney

  • Cincerely
    Cincerely Member Posts: 56

    Thanks Binney.... You do cheer my day! I am fortunate to have met you and to call you my friend!

    Stay strong!!

  • charmainejensenvoisine
    charmainejensenvoisine Member Posts: 210

    Hello Ladies:

    I was introduced to this thread of 'Radiation Induced Brachial Plexo Pathy" by a very nice lady Sharon50 of whom has been trying to help me out, and I would like to give a shout-out to Binney of whom she has told me about, and has suggested can help out too.  So 'hi Binney' :)

    I finished 25 Rads with 5 Boosts March 2010 - in September 2010 I started to noticed some difficulty of range of motion with my upper right arm/shoulder (but at that time it was not all that bad and felt it may be just a temporary thing so left it alone).   So here it is now March, and just in the past couple of months been really having difficulty with my right upper arm/shoulder.  The range of motion if really a problem.  I cannot raise my arm straight upwards, have difficulty putting my right arm across to the left side of my body without great pain and it is very limited on how far I can put my right arm across to the left side of body.  I cannot put right arm behind me anymore, and also having difficulty raising right arm enough to be able to wash, and comb my hair.

    Oh when I try to raise my right arm ( I feel a bit of pressure in the upper part of my right chest) Yes my treatments were on the right side and the breast cancers were the right breast. 

    So ladies does this sound like any possibility of 'radiation induced brachial plexo pathy' , or some other radiation induced condition?   I would really appreciate any and all feedback.  

    I have an appt with my Radiation Oncologist March 15th and would like to take to him a possible dx....

    Thanks ladies...   really frustrated with this arm - the more I use it - even for typing - more it bothers me.

    Charmaine

  • binney4
    binney4 Member Posts: 1,466

    Charmaine, hello!

    I'm so sorry for your struggles with this, and I hope you'll soon have solid answers and even a good fix.Smile Did you have multiple radiation fields? Also you don't mention muscle weakness, which is usually the earliest sign of RIBP -- dropping things, handwriting that gets worse, that sort of thing. Have you noticed anything like that? Those are both considerations for a possible diagnosis of RIBP. More RIBP information here:
    http://www.stepup-speakout.org/Radiation_Induced_Brachial_plexopathy.htm

    I wonder if you've seen a lymphedema therapist for evaluation? A well-trained one could pick out issues like truncal lymphedema or Axillary Web Syndrome which could cause problems with range of motion and pain as well. If not, here's information about finding a well-qualified one near you:
    http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

    Hopefully others will be along with their thoughts and suggestions. Please keep us posted!

    Gentle hugs,
    Binney

  • charmainejensenvoisine
    charmainejensenvoisine Member Posts: 210

    As for extreme weakness not that I have noticed, other than I have difficulty opening up jars and tubes of creams more so now than before with my right hand.  I have more muscle atrophy in my right arm than before.

    As for radiation, they aim the radiation at the underarm and also at the site of the scar tissue which is at the side of the breast.

    What is truncal lymphedema and Axillary Web Syndrome, I can try and google some stuff.

    Binney, thank you for popping in and replying to my message, it is appreciated.  Tomorrow I will be meeting with my new Medical Oncologist, as did not like the previous.  I will then be bringing to the attention of this Oncologist my arm problem and also there is a Lymphdema Clinic in the hospital and will request a referral to this clinic - I am hoping there will not be a cost to attend this clinic and that it is covered by the Ministry of Health being that the clinic is in the hospital.

    Thanks, Charmaine

  • binney4
    binney4 Member Posts: 1,466

    Charmaine, yes, trouble opening jars and tubes is exactly what I meant. And it does sound like you had multiple radiation fields, so RIBP is definitely something you want to bring up tomorrow.

    Here's information about truncal lymphedema and Axillary Web Syndrome:

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

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

    And here's Joe Zuther's article on RIBP, which you (and your oncologist) might find helpful as well:
    http://www.lymphedemablog.com/2011/01/28/radiation-induced-brachial-plexopathy-and-lymphedema/

    RIBP is rare, but as you can see by this thread, it certainly isn't just a thing of the past. Please let us know how it goes tomorrow. Sure hope this new doctor will be able to hear you and help you find the answers you need.

    Be well!
    Binney

  • Marple
    Marple Member Posts: 10,154

    Good luck Charmaine.  I saw this thread pop up in Active Topics and was going to PM you about it but I see you are already here.

    Gentle hugs.

  • Cincerely
    Cincerely Member Posts: 56

    Charmaine - I am very sorry to hear you're having these side effects. Please let us know how your Dr visit goes tomorrow. I have finally been able to find a great primary care Dr who has been the one who was able to get me the right kind of medical attention. Although there is no "fix" for RIBP, the more we communicate with each other, the more we are able to help by passing along what aids each of us along the way.... Supporting each other is a huge benefit to the psyche! I hope you have a good meeting with your Dr.

    Stay strong....

    Cindy

  • charmainejensenvoisine
    charmainejensenvoisine Member Posts: 210

    Had the appointment this afternoon with my new Medical Oncolgist at Durham Regional Cancer Centre in Oshawa, Ontario where I went for radiation therapy ' Dr Shim ' is here name.  She is a very pleasant Oncologist.

    As for my arm, she suggested that I bring this up at my Radiation Oncology appt that I have on March 16th, in the meantime she has scheduled an Breast MRI...  oh she asked me if I have ever had a genetic test done before...   so she has made a referral for a genetic test..   I got 6 month supply of Tamoxifen and follow-up appt with her in 6 months.

    So when I have my MRI and genetic test will post results of both here.

    Charmaine

  • binney4
    binney4 Member Posts: 1,466

    Charmaine, thanks for letting us know. We'll just keep you in our thoughts and wait for news after your March 16 visit. Are you just now starting the Tamox? Hoping that goes really smoothly for you.

    Hugs,
    Binney

  • charmainejensenvoisine
    charmainejensenvoisine Member Posts: 210

    I started the TAMOX a month after I finished chemotherapy (March 2 2010).  So have been on Tamoxifen now for just over a year.

    Charmaine

  • binney4
    binney4 Member Posts: 1,466

    Good morning, Charmaine,

    Just keeping you in my thoughts today. Hope the MRI was "unremarkable" and you get some answers today.

    Hugs,
    Binney

  • charmainejensenvoisine
    charmainejensenvoisine Member Posts: 210

    I just saw my radiation oncologist a couple of days ago.  I brought to his attention the problem that I am having with my arm, and he told me that he does not feel it is because of radation therapy. So now I am totally stumped grrrr

    I am really getting frustrated with limited use of this arm, not being able to put my right arm up over my head, and behind me, and not being able to brush my hair with my arm and ect...

    Charmaine

  • Marple
    Marple Member Posts: 10,154

    Are oncs as apt to fess up (not fess up) to RIBP as they are to lymphedema? 

  • binney4
    binney4 Member Posts: 1,466

    Sharon, absolutely.Frown

    Charmaine, did he suggest seeing a neurologist or anything else? Any tests? I'm so sorry this depends on YOU, the patient, to get to the bottom of it, but just want to encourage you to keep on working toward the answers you need. Hopefully others will be along with suggestions of what to do next.

    Aaaaaaaaugh!
    Binney

  • Cincerely
    Cincerely Member Posts: 56

    Yes Sharon, sad but mostly true..... Most don't want to acknowledge it.

    Charmaine, unfortunately, we need to take control of our own care and well being as it relates to these side effects. I too have run into the same denial and lack of knowledge/concern regarding radiation and chemotherapy nerve damage side effects. I was just as bad as they were, living in denial, and trying to convince myself that "it" would eventually go away. I was wrong. It wasn't until I changed my primary care physician 5 years later that I was finally referred to a specialist who sent me for tests to diagnose RIBP & CIPN - ruling out any tumors or other nerve related disease. Let me add, that my new primary care Dr is also a cancer survivor, and she is very attune to symptoms. So, it is extremely important that you persevere, and reach out to a neurologist for appropriate testing. The Internet is indeed our friend and a tremendous aide for information gathering. If any of us can help guide you, or share our own experiences, we certainly will. You've got our support!

    Please keep in touch and let us know how you progress - stay strong, keep searching.

    Cindy

  • charmainejensenvoisine
    charmainejensenvoisine Member Posts: 210

    My radiation oncologist did not suggest any other medical professionals.

    I have an appt with my breast surgeons and will try and bring up my arm/shoulder problem with him and will also make an appt with my family physician and also approach him on it.  My family physician I have had for about 10 plus years in and most often he has been pretty good with me.

    Yes I will for sure keep in touch with you all.

    Charmaine

  • lionessdoe
    lionessdoe Member Posts: 45

    I found a doctor who specializes in radiation induced brachial plexopathy at U of M (michigan). Look for a teaching hospital far outside your hospital networks and be prepared to pay the out of network copay. It was worth it to me!

  • Alicenh
    Alicenh Member Posts: 9

    I have come upon research suggesting that pentoxifylline (aka Trental) and vitamin E were helpful in reducing fibrosis in cases of RIBP and actually led to improved functioning for some. Has anyone had this suggested or tried this treatment? Over many years--decades really --my hand and arm have lost functioning and strength to where my hand is useless and I can barely lift my arm. I'm interested in ways to help of course and thought I'd see if any of you have any thoughts. Thanks in advance for the help. 

  • binney4
    binney4 Member Posts: 1,466

    Alicenh, long time no see! Welcome back!

    Don't know if you've been over to the RIBP page at StepUp-SpeakOut recently, but we've updated all the research and there's a section on Trental and E. It's here:
    http://www.stepup-speakout.org/Radiation_Induced_Brachial_plexopathy.htm#drugs%20tren

    The R.AG.E. folks have considerable experience with Trental, so you might want to contact them as well. Their website is back a page or two here, and it's on the StepUp page too.

    Do let us know what you discover. Gentle hugs,
    Binney

  • Cincerely
    Cincerely Member Posts: 56

    I started a facebook community page titled “Surviving Survivorship – Breast Cancer Treatment Nerve Damage”.



    Created for the voices of cancer survivors, who are surviving survivorship, with chemo and/or radiation treatment related side effects.  Specifically, Radiation Induced Brachial Plexopathy RIBP and/or Chemotherapy Induced Peripheral Neuropathy CIPN.



    This facebook community page is dedicated to the cancer survivors, who are surviving survivorship.  Geared towards giving us all a voice.



    My hope for this page, is to help others who have been experiencing nerve damage symptoms following their cancer treatments.  Sharing their own stories of how this has affected their quality of life, how it has affected their families, caregivers, friends, ability to work, to play, to live.  Providing a place for us to share ideas, helpful hints, encouragement, collaborate, post links to medical articles and useful informative related reading.  A place to come together, not feel alone, and be strong. Similar to this forum, and others like it – it's just another avenue to communicate.



    To find the page, log into your facebook account, and in the Search field at the top of your facebook page, type in “Surviving Survivorship – Breast Cancer Treatment Nerve Damage”. After you visit, be sure to click the “Like” button, and it'll add to your news updates when someone posts comments or information, or links of interest.  I look forward to seeing you there!  :)





    Hope everyone is well.... Stay Strong.



    Cindy

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