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RIBP & CIPN - Nerve Damage from radiation and chemo treatments
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B4

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Re:RIBP & CIPN - Nerve Damage from radiation and chemo treatments - Wednesday, February 09, 2011 10:42 PM
I'm excited about a brand new study looking at the experience of women with RIBP, so I wanted to share the announcement, which just came out today. I hope if anyone else here is dealing with RIBP they'll consider volunteering -- it's an interview study (by phone) and it's been written by Dr. Elise Radina of Miami University in Ohio, who is a widely respected veteran researcher into lymphedema and related issues of breast cancer survivorship. I'll copy the announcement below in case anyone is able to participate.
B4

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
 
CindyGraeff

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Re:RIBP & CIPN - Nerve Damage from radiation and chemo treatments - Thursday, February 24, 2011 1:22 PM
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
Breast Cancer Survivor
Diagnosed 11/17/05
double radical mastectomy - right tumors 5 & 7 cm - left contained pre cancer cells
100% Estrogen Positive
HER 2 Negative, 5/8 nodes, Stage III
8 chemo cycles - CAT (Cytoxan, Adriamycin, Taxotere) - first 4 Cytoxan Adriamycin;  last 4 Taxotere - completed 05/23/06
33 radiation treatments - along right mastectomy scar and auxillary nodes - completed 08/08/06
Hodgkins Disease S
CindyGraeff

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Re:RIBP & CIPN - Nerve Damage from radiation and chemo treatments - Wednesday, March 02, 2011 10:51 AM
JOE ZUTHER RIBP BLOG - PART TWO - The second part of a two-part blog about RIBP written by Joachim Zuther, the director of the Academy of Lymphatic Studies, a fully accredited training school for lymphedema therapists, has been posted. He's also associated with both the International Society of Lymphology and the National Lymphedema Network. The first entry in his blog was just a description of RIBP, but this new entry is about the Treatment of RIBP in the presence of lymphedema. It's here:
http://www.lymphedemablog.com/2011/03/01/treatment-of-ribp-in-the-presence-of-lymphedema/

Many thanks to Joe for his passions and dedications to helping those who suffer the side effects of cancer treatments relating to RIBP and Lymphedema! 
Breast Cancer Survivor
Diagnosed 11/17/05
double radical mastectomy - right tumors 5 & 7 cm - left contained pre cancer cells
100% Estrogen Positive
HER 2 Negative, 5/8 nodes, Stage III
8 chemo cycles - CAT (Cytoxan, Adriamycin, Taxotere) - first 4 Cytoxan Adriamycin;  last 4 Taxotere - completed 05/23/06
33 radiation treatments - along right mastectomy scar and auxillary nodes - completed 08/08/06
Hodgkins Disease S
CindyGraeff

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Re:RIBP & CIPN - Nerve Damage from radiation and chemo treatments - Sunday, March 06, 2011 5:48 PM
I heard from my Physical Medicine Dr regarding the question of acupuncture and if it could be helpful for my nerve pain.  She discussed my case with her colleague who is an MD and Acupuncturist, who indicated that she would not recommend acupuncture for me.  She feels it would not provide any relief or be beneficial.  I sure do appreciate that kind of honesty and candor.  

I had also been unsure of the benefits of the low dose Cymbalta - at first it seemed to help with lowering the intensity of the stinging pain in my hand.  But, it was feeling more like it was becoming more painful again.  The Dr indicated it could be worsening as is expected - however, I could stop the Cymbalta, and if it was helping me, I would be able to tell within a week.  Well, I could definitely tell a difference within 4 days.... Apparently it was helping.  So, I have gotten back on the Cymbalta.  It takes some of the edge off.... But still I have pain, sensitivity, stinging, pins and needles, nerve twitches, numbness and lack of coordination 100% of the time - 24/7.

I participated in the Miami University - Exploring the Personal Impact of Breast Cancer-related   
Radiation Induced Brachial Plexopathy (RIBP) study this week via a conference call.  It was easy, and the questions relevant to the patient perspective. If you have RIBP I urge you to participate in the study.  The more information they can gather the better for us all.  The information on this study is listed in a prior entry in this forum - dated 02/09/11.


Hope everyone is well.... Stay strong.  
Cindy 
Breast Cancer Survivor
Diagnosed 11/17/05
double radical mastectomy - right tumors 5 & 7 cm - left contained pre cancer cells
100% Estrogen Positive
HER 2 Negative, 5/8 nodes, Stage III
8 chemo cycles - CAT (Cytoxan, Adriamycin, Taxotere) - first 4 Cytoxan Adriamycin;  last 4 Taxotere - completed 05/23/06
33 radiation treatments - along right mastectomy scar and auxillary nodes - completed 08/08/06
Hodgkins Disease S
klessa

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Re:RIBP & CIPN - Nerve Damage from radiation and chemo treatments - Friday, March 11, 2011 1:55 PM
Cindy, thanks for sharing this.  You are really an inspiration -- and a joy to know -- for how you are dealing with all of this.  We are very fortunate to have you guys in our lives.  I hope some awareness or good can come out of what you've experienced.  Love you both.
CindyGraeff

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Re:RIBP & CIPN - Nerve Damage from radiation and chemo treatments - Monday, April 11, 2011 3:56 PM
Last week was another visit to the Physical Medicine Doctor.  Pretty much of the same.... Still nothing that can be done to stop the progression and ease the symptoms, other than the Cymbalta low-dose to take the edge off of the stinging pain.  My right hand is worse, can't feel any movement that occurs in the fingers.  For example, she had me close my eyes, and she took my forefinger, moved it up, down, side to side... I never knew she did any of that.  No feeling.  All fingers are that way.  I keep catching them in things, and don't realize until it pulls my arm or twists my hand.  I am probably not far from tearing a ligament, dislocating, or breaking a finger.  The little finger has been the most likely for injury.  That one is always getting caught and separated from the others.  Poor thing!  Most times, 85% or so, i can move and bend all fingers.  However, there are times when I cannot - and that is frightening, as it indicates more paralysis.  It feels like my fingers are bent under, like a fist.  Wakes me multiple times during the night to reach with my left hand to see what my right hand is doing.  Signing my name is not a good thing - which is the only right handed writing I had been doing.  Everything else related to writing and typing is done left handed.  The autograph signing may now also have to be mastered by the left hand.  A new challenge to accept and conquer!  My sister told me that my left hand writing looks like an “old ladies” writing….  Great….  She is so funny!  I reminded her she is 10 years older than I am. :o)
Left hand is weakened, resulting in lack of coordination and dropsies. Unable to open most twist tops, and writing skills lessened.  However, it still runs circles around the right hand!   :o)
My shoulder and neck muscles are weakening, making it difficult to hold my head up, and look down, or bend down, even for short periods of time.  I usually need to lay down, or sit back and lean my head against the chair to rest and be able to continue with my routine.  My right side, rib cage area, muscles have deteriorated, making it feel achy and noticeably see and feel more space between them.   Chewing is very hard to do with anything bread- like, or  crackers, meat, etc.  My jaw gets tired right away.  But I like food, so I find a way and compensate!  Take my time, and take smaller bites.
I am still able to ride the recumbent exercise bike 5 miles in about 33-35 minutes on level 0.  It makes my legs tired... But at least sitting i don't feel I'm about to fall. I try to do this 3 - 5 times a week.  To walk across a parking lot or down the hall at work is so difficult with my lower legs getting tired and exhausted.  I have to stop and rest.
Weakening of muscles has been abundant and consistent.
Something I hadn't talked much about before, is the physiological affects this side of surviving survivorship has played.  Quality of life suffers.  For the past 5 years the RIBP/CIPN side effects have worsened.  Along with it, at times, self worth diminishes.  The ability to tie your own shoes, button your own shirts, sign your own name, typing with both hands, opening a jar, spreading peanut butter, turning a key, fades away.  Things I once enjoyed, going for walks, swimming, throwing a base ball, shooting hoops, playing guitar (I miss that the most), sketching, throwing a frisbee, gardening.... No longer a part of my activities.  Confidence in my own self being and abilities suffer.  It's difficult to take, but certainly not impossible.  When it brings me down, I have to wrap my head around it and persevere. Find the things I can do and focus energy there.  Way easier said then done, as many of you suffering the same know all too well.
I do believe we need to find humor in anything that happens around us, to us, either directly, or indirectly.  Too much seriousness is a drain.  I don’t ever want to be a drain or a drag – and my friends and family don’t let that happen – we will laugh at some of the things that happen because of this new disability – and believe me I’ve had some crazy things occur.  Just last night, I was switching laptop bags – both are on rolling wheels.  So I had one handle to pull a bag in my left hand, and one handle to pull the other bag in my right hand.  I start through the kitchen, and suddenly I realize I’m walking with only one bag (the one in my left hand).  The one in my right hand, got left behind, yet I kept walking with my hand behind me like I was dragging both bags…. I get almost to the living room when I realize the right hand was dragging nothing but air!  HaHaHa!  That made me laugh.  Things like that I find self amusement to share.  I’ve also had to have a friend, who is also a coworker, unhook my pants in her office, because the hook was bent a little and I had to pee and couldn’t get my pants open….  Sigh…. 
I have a great support system with my family and friends (who are indeed my extended family).  They help me through this stage of my life.  They provide strength, humor and compassion.  I am extremely fortunate in that area.   
Some of you who may not have that kind of support, but need it.  Please know that I will help anyway I can… by listening, by sharing things that worked for me, and by laughing or crying together.   Feel free to reach out and send me a message – we’ll hook up and share.
That's the update for now.... Hope everyone out there is doing well and keeps fighting the fight.

Stay Strong,
Cindy
Breast Cancer Survivor
Diagnosed 11/17/05
double radical mastectomy - right tumors 5 & 7 cm - left contained pre cancer cells
100% Estrogen Positive
HER 2 Negative, 5/8 nodes, Stage III
8 chemo cycles - CAT (Cytoxan, Adriamycin, Taxotere) - first 4 Cytoxan Adriamycin;  last 4 Taxotere - completed 05/23/06
33 radiation treatments - along right mastectomy scar and auxillary nodes - completed 08/08/06
Hodgkins Disease S
Peki

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Re:RIBP & CIPN - Nerve Damage from radiation and chemo treatments - Monday, April 11, 2011 4:33 PM
Keep keeping us updated Cindy, I find it very interesting with all we deal with and how different we all are. Sorry that acupuncture isn't an option for you, when it works, it works!
Was at my onc's today and we went over why I am off all the meds.  I told her I had heard at this site that 50%of us go off the meds, she said it is more like 65%. Wish they would come up with something that worked without all the side effects.
CindyGraeff

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Re:RIBP & CIPN - Nerve Damage from radiation and chemo treatments - Sunday, May 08, 2011 8:02 PM
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

Breast Cancer Survivor
Diagnosed 11/17/05
double radical mastectomy - right tumors 5 & 7 cm - left contained pre cancer cells
100% Estrogen Positive
HER 2 Negative, 5/8 nodes, Stage III
8 chemo cycles - CAT (Cytoxan, Adriamycin, Taxotere) - first 4 Cytoxan Adriamycin;  last 4 Taxotere - completed 05/23/06
33 radiation treatments - along right mastectomy scar and auxillary nodes - completed 08/08/06
Hodgkins Disease S
CindyGraeff

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Re:RIBP & CIPN - Nerve Damage from radiation and chemo treatments - Sunday, May 15, 2011 2:20 PM
Here is a Clinical Trial actively recruiting volunteers diagnosed with Radiation Induced Brachial Plexopathy - particularly those who had been treated for Hodgkins Disease and Breast Cancer with radiation.  WOW!  I read through the requirements and was very excited.... I believe i qualify to participate.  However, it is in France, and you need to be close enough to occasionally spend a hospital stay.  Maybe I need to brush up on my French and relocate till September 2015?  
http://www.clinicaltrials.gov/ct2/show/NCT01291433?term=radiation+induced+brachial+plexopathy&recr=Open&rank=1
Breast Cancer Survivor
Diagnosed 11/17/05
double radical mastectomy - right tumors 5 & 7 cm - left contained pre cancer cells
100% Estrogen Positive
HER 2 Negative, 5/8 nodes, Stage III
8 chemo cycles - CAT (Cytoxan, Adriamycin, Taxotere) - first 4 Cytoxan Adriamycin;  last 4 Taxotere - completed 05/23/06
33 radiation treatments - along right mastectomy scar and auxillary nodes - completed 08/08/06
Hodgkins Disease S
PDV1949

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Re:RIBP & CIPN - Nerve Damage from radiation and chemo treatments - Tuesday, June 07, 2011 4:17 PM
Hi - I have been trying for over an hour to join, find this blog, and send you a message. Could be me, but I've had no luck or more time to pursue.
 
I have some information that may help us all who suffer from RIBP and CIBP. After 6 months of searching for someone who could help, I received a lead from one of my dear friends.
 
I have a long and complicated history with right arm paralysis starting Labor Day week-end in 2010 - it has been progressive, disabling and my right arm is deformed with swan neck contracture of three middle fingers.
 
Please look up Dr. Michael Stubblefield at Memorial Sloan Kettering Cancer Center for his biography. He's apparently the only MD in the USA with experience in treatment of RIBP or CIBP.
 
I contacted him and forwarded a few pertinent test results at their request. I hope to hear from them soon and to see him for an appointment, if possible.
 
Let me know if anyone's heard of him or seen him on referral with outcome.
 
God bless all & stay strong - Pat
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