RIBP & CIPN - Nerve Damage from radiation and chemo treatments

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CindyGraeff
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RIBP & CIPN - Nerve Damage from radiation and chemo treatments - Monday, January 03, 2011 11:57 AM
It’s been just over 4 years since I originally posted on this website that I was having neurological issues with my hands/feet from the chemo – tingling/numbness/clumsiness/stinging/pain.  It has continued to worsen over the years, and about the last 8 months has gotten extremely more debilitating.

 
I have gone through physical therapy, MRIs, CAT scans, EMG nerve conduction tests, massage therapy, and multiple doctor visits.  Final result is that I have a RIBP [Radiation Induced Brachial Plexopathy] and CIPN [Chemotherapy Induced Peripheral Neuropathy].  Neither of which is reversible. 



The biggest culprit from the various chemo drugs come from vincristine (1984 for Hodgkins Disease) and taxotere (2006 Breast Cancer).  The radiation I received for the breast cancer in 2006 overlapped areas where I had mass upper mantle radiation treatments for the Hodgkins Disease.  The mass upper mantle radiation from the 80’s is what caused the Breast Cancer 22 years later.

The nerve damage is severe in the upper torso – shoulders/neck/back/arms/hands – additionally the damage extends into my toes/feet/ ankles/lower legs. 



The numbness/tingling/stinging/pain is cruel and relentless.  Feels like bare electrical cords are running through my body parts, non-stop 24 hrs a day.  The weakness from muscle loss is debilitating.

I am to the point with the nerve damage where my right hand is basically like a rubber Halloween hand – flimsy, no strength in the fingers – no coordination – sensory feeling is mostly nonexistent, except severe pain from heat/cold and constant 100% of the time needles/pins.  The muscle atrophy is very severe – muscle tone is gone – if I place my hands next to each other the right hand is about half the size in width as my left.  Unless I actually look at my hand, I don’t know if my fingers are bent, or straight.  They always ‘feel’ like they are bent or curled under, even when they are not.  I reach into something and often bend my little finger back or out to the side without even realizing it. 



My forearm is about the same in size to my left.  Noticeably smaller from muscle loss.  The upper arm is stronger, but definitely weaker than the left.  I am a right handed individual by birth – however, I have now changed my dominant functions such as eating, drinking, writing, number typing, keyboard typing, holding, carrying all to the left. 



My shoulders and neck sometimes feel so weak and painful I can barely hold my head up, and need to lie down till it rests enough to continue on.

My left hand/arm/shoulder is also affected with the damage.  And as I am finding, the more I rely on my left hand, the worse it too is becoming.  Oddly, with this nerve damage, “the more you use it, the more you lose it” applies to muscle tissue.  In the undamaged body world, the nerves feed the muscles.  When the nerves are damaged, they can no longer feed the muscles enough to remain useful and strong.  I am dropping a lot and having typing/mouse and strength/coordination issues, along with increased stinging pain in my left hand/fingers/arm than before.

I now have a Physical Medicine Specialist MD who is at least understanding and informative.  I have found over the past 4 years that the medical profession is basically unable to correct this type of damage.  They can provide various drugs to mask the tingling symptoms and pain, but unable to stop the progression of nerve and muscle cell damage.  I’ve tried a few types [Neurontin, Lyrica] with no benefit.  Currently I’m trying Cymbalta low dose – I notice an ever so slight decrease in the sensitivity/pain to my right palm.  But nothing dramatic.  Sleeping is tough – I wake many times a night with discomfort and pain.  Ambien helps me to actually fall asleep initially, and then get back to sleep after the multitude of wakening events – but not always –some nights are worse than others. 



I’m finding it more and more difficult to continue working – difficult physically and mentally.  But I push through it the best I can, as we all do when life challenges us.  Driving has been ok – I find it gets tiring the longer I drive from muscle strain in shoulders, hands and arms.

Narcotics are not an option for me to help with pain.  I am allergic to them – all of them – including Tylenol and Ibuprofen which cause nausea and dizziness – I have more side effects from all pain type meds then can be tolerated, even with anti-nausea drugs.  The pain meds, and the anti-nausea drugs, also affect my nerves and I have tremors/shake, like I imagine someone would going through a mild detox event.  Can’t stop arms/legs jumping and twitching – and then add vomiting – makes it easier to deal with the pain, then the side effects from the pain meds.

Chemo brain runs rampant – I would tend to believe 100% of chemo patients suffer from that.

Oncologists forewarn us that the chemo drugs not only save our lives by zapping the cancer cells, but also damage the good cells needed for quality of life.  As the patient, our decision to save our lives and survive is strong – worry about the other stuff later if it happens. 



The chemo I had in the 80’s and 2006 included Adriamycin – helped kill those cancer cells, but resulted in Cardiomyopathy and Congestive Heart Failure.  I have had more than the allotted dose of that type of drug for a lifetime.

Chemo and radiation have saved my life twice – I am tremendously grateful for all the research and trials that have provided the level of knowledge, skill and testing that has been done thus far.  I didn’t write this posting to whine or complain – I post it to help others know they are not alone – and to be heard in the research world.  If this one posting can help one other person, I am happy – if it can help the thousands of others who may need cancer treatments in the future, I’m ecstatic – I’d somehow find a way to do the Snoopy-nose-in-the-air-happy dance-all around the world!

Sometimes it appears to me that we have so much focus on fighting and killing the cancer, that the quality of life for the patient is forgotten in the war.

I’ve done a lot of internet research and doctor/patient discussions to find most of the same answers – everyone responds differently to the chemo, ranging from some who have no noticeable nerve damage,  to those who are incapacitated.  Many of the internet search results are websites trying to sell various vitamins and supplements – nothing that I hold a lot of faith or trust in – just another way of taking advantage of the disadvantaged.  There are websites that offer products to aide with performing day to day functions for those who have become one handed.  They have some very helpful gadgets available.  I have found this particular website beneficial - http://www.stepup-speakout.org/Radiation_Induced_Brachial_plexopathy.htm
What I cannot seem to find are any kind of statistics on how many people are affected by the neurological  side effects – based on what I’ve read posted by many, the numbers must be high.  How many more are the “unheard”?

I believe that in numbers we may be able to get some attention.  Attention and focus to help direct additional funding to not only kill cancer cells – but kill them without damaging the patient’s quality of life. 
How many of us are really out there?  Has there been any studies or clinical trials?  There may be, and I just haven’t been able to find them.  Anyone out there know?  Any groups already established for those suffering from the neurological side effects caused by RIBP and CIPN?

~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

Tricia Keegan
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Re:RIBP & CIPN - Nerve Damage from radiation and chemo treatments - Monday, January 03, 2011 2:03 PM
Hi Cindy- I'm sorry you're still suffering so much with these side effects which do sound debilitating.  I'm thankful I don't have these issue's and the neuropathy I suffered with during chemo cleared in time although I do still have problems closing small buttons etc.

I hope someone else has some info to help you.
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

pink warrior
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Re:RIBP & CIPN - Nerve Damage from radiation and chemo treatments - Monday, January 03, 2011 8:13 PM
Thanks for your message.  I think I remember your posting some time ago and I tried to find it again but no luck until now.  I'm sorry to hear about the effects of the medicines and radiation.  You have been through hell and back it sounds like.  Nothing like what you are enduring, but I've had a lot of effects from radiation - my armpit and arm keeps falling asleep at night.  Lots of waking events as you so aptly put it. I'm trying everything - massage, narcotics, chiropractor, etc.  The doctors tell me with time it should improve.  At least you've given me a name for it.

I'm so sorry to hear about your challenges.  Hang tough and keep moving. 

50, in Maryland, three Naval Academy "sons" plus 2 Bengals, 1street cat from Boston,
Married to One of the Top Ten Best Husbands in the World
Stage IIB, Grade 3, Diagnosed 3/26/09
Breast reduction surgery 5/11/09, HER2+++ , 24 nodes removed, 1 positive
Chemo delayed 5 1/2 months due to surgery complications Chemo 10/29/09 - Taxotere, Carboplatin - done 2/19/09!
Herceptin for one year - done 10/23/10! 28 Rads - done 4/16/10!
Now continuing healing of mind, bod

B4
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Re:RIBP & CIPN - Nerve Damage from radiation and chemo treatments - Monday, January 03, 2011 9:02 PM
- [This post was marked as helpful]
Cindy, thank you so much for posting your story here. I'm so glad you've found the StepUp-SpeakOut pages helpful and wonder if you have read through the RIBP discussion board here:
http://community.breastcancer.org/forum/64/topic/698235?page=1
It's long, but does cover some of the pain options women have tried and found helpful. It's a thread on a Lymphedema forum, because lymphedema is so often a part of the RIBP picture. It would be really helpful if you'd be willing to lend your voice to that discussion, as it can be difficult to move discouraged people toward self-advocacy, and clearly you're interested in moving in that direction.

There is an organization in the UK called R.A.G.E. (Radiation Action Group Exposure) that seeks to promote research into all radiation-induced long-term side effects, including RIBP. They are (as their name implies!) a determined group who promote research and seek funding for it through legislative means in the UK. They have a website here:
http://www.rage.webeden.co.uk/

With regard to RIBP research, I can tell you that we have just completed a medical literature search regarding RIBP and there is nothing that attempts to establish incidence of RIBP. I believe that is because it's so slow to be diagnosed and many who suffer from it may not have a diagnosis yet (or ever), and also because the medical community is never real happy to research a subject for which they have no answers. I firmly believe the current estimates for RIBP are way too low, judging by the number of women I know who suffer from it. We will be posting the studies we found in the literature search on the StepUp-SpeakOut website soon -- but I can warn you that to date there is nothing especially optimistic in it. Still, it's important to know what's being done and who's doing it, as we do hope to influence some researchers to begin preliminary study of the experience of RIBP. We are also working with the National Lymphedema Network to devote an issue of their quarterly newsletter to RIBP, as many lymphedema therapists deal with it, and they need to share their information so as to make advances in therapy possible.

The neuropathy seems to be even more prevalent, but it too has been unstudied until very recently. There is some movement in the research field to start looking at the quality of life of cancer survivors, and neuropathy is part of that new awareness (as is lymphedma). As more and more of us survive various cancers for longer periods of time it becomes more and more of an issue to find solutions for the long-term problems of cancer treatment.

Hope some of that helps. Please stay in touch! Hugs and prayers,
B4

CindyGraeff
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Re:RIBP & CIPN - Nerve Damage from radiation and chemo treatments - Tuesday, January 04, 2011 9:05 AM
Thank you B4 – very helpful indeed!
I actually was guided to the StepUp-SpeakOut website by a woman I contacted at R.A.G.E.  I found R.A.G.E. and was so intrigued and impressed by their ability to unite and take action within the UK, I asked if they knew of anything similar in the US.  StepUp-SpeakOut  contains great information.
I did send a similar message to my posting here to StepUp-SpeakOut through the “Send Us Your Feed Back” link.  Hopefully they will forward it onto the right place.
I’ll look forward to reading the literature you refer to once it is posted on StepUp-SpeakOut – I’m happy that some attention is being gained – baby steps maybe – but steps just the same.  If there is anyway I can help, by personally sharing my medical/treatment history or this life changing progression, by all means, please include me.  I would love to be an advocate in this effort!
Thank you for the breastcancer.org discussion thread link – I had not found that one before – I will read through all the posts and definitely add to it. 
I believe that many people feel they are alone in their pain.   Being able to find others who sympathize and understand because they too feel the same pain is very comforting and often uplifting.  Knowledge is power – power to control how we fight, feel, adjust, encourage, support.  I will always be an advocate for spreading as much knowledge and support as I can.  Our future, and the future of all others facing the war against cancer, will benefit by the voices of those who have lived it.
Hope to talk to you again soon – Take care.
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 - Saturday, January 08, 2011 1:03 PM
Thanks everyone for posting and the well wishes - much appreciated...

I wanted to give an update -

I went to my onc yesterday for my routine 6 month followup (crossing year 5 since diagnosed) - we discussed at length the issues that have been getting worse and gaining speed relating to the neuropathy - as she explained to me, the nerve damage that is done at the time of drug infusion is the only damage incurred - so the damage of the nerves themselves does not continue to get worse - they only damage when they are actually exposed to the drugs or radiation - so - what i am experiencing more of over time is the muscle atrophy, caused by the damaged nerves.  The atrophy will continue to worsen over time, and indeed it has.  She also said in her 15 years of practice she has not seen the level of damage I have, and of course is concerned it could be caused by something else - although most all other things have been ruled out - i.e. additional tumors, muscular disease (mostly based on the symptoms I have presented and been tested for thus far).  She too, basically said, she just doesn't see nerve damage often, and when she does, its minimal.  Now, the treatments I had in the 80's with chemo and upper mantle radiation have certainly compounded the issue - and most all of her patients did not experience that additional attack on the body.  The RIBP is something they tend to see a bit more of, especially when there is overlapping radiation from previous treatments - the scarring tissue does tend to choke and can continue to grow and choke the brachial plexus area.
My veins were very uncooperative, and although they had 4 good sticks - i wasn't giving up enough blood for the lab work....  I usually have this problem, which again was due to the chemo scarring the veins - tough stick indeed!  Otherwise, I had a great check up - no additional scans as I had just had a cat scan in October that was clear.  I go back in 6 months for another followup and pet/cat scan.
I also discussed the estrogen blocker (Aromasin) and how it may be adding to my chronic pain - I have 9 months to go to finish the full cycle - However, she said I could stop for a month or two and see if I feel better - If I don't feel any different, I can go back on and finish out the 9 months more.  I agreed to that line of thinking.

So my dear friends/sisters - Let's keep up the good fight and communicate often!

Take care -
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 - Friday, January 28, 2011 3:47 PM
GREAT NEWS - the first part of a two-part blog about RIBP written by Joe Zuther, the director of the Academy of Lymphatic Studies, a fully accredited training school for lymphedema therapists. He's also associated with both the International Society of Lymphology and the National Lymphedema Network. So far this entry in his blog is just a description of RIBP, but the next blog entry will deal with treatment, with an emphasis on the lymphedema end of it. It's here: http://www.lymphedemablog.com/2011/01/28/radiation-induced-brachial-plexopathy-and-lymphedema/


I was also 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 message with email address where I can forward.

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

mary l
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Re:RIBP & CIPN - Nerve Damage from radiation and chemo treatments - Saturday, January 29, 2011 10:19 AM
Cindy, WOW your story is very compelling.  I am so sorry that you have to deal with this.  I complain about neuropathy in my feet and very numb hands.  After reading your story I realize 'it's no big deal".  My onc tells me that taxatere and carboplatin caused mine, but who knows.  I think it is so wonderful that you a researching this disabiling side effect.  Somehow side effect does not soung like a strong enough word!!!  I do break alot of glasses.  My husband thinks we should use paper cups.  I sincerely hope they can find a way to make your life easier and less painful.  Thankyou for sharing your story.   Mary L
Diag. Oct 2003 with 6mm mass, IDC grade III ductal carcinoma in-situ, Inflammatory Breast Cancer stage IIIB, Her2+++.   I had A/C followed by Taxotere (only had 2tx as I had heart problems from it); Left Mastectomy followed by 35 rads.  Recurence in 9 months as skin mets to mast. site. tx Carboplatin/Herceptin,  stayed on Herceptin every other week for almost 4 years only stopping when my ejection fraction would get too low. off herceptin & ned 3 years in 2010

Peki
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Re:RIBP & CIPN - Nerve Damage from radiation and chemo treatments - Saturday, January 29, 2011 7:57 PM
Cindy, have you tried acupuncture at all to try and relieve some of that pain?  Like you I had real problems on the arimidex, femara and the aromasin, and finally decided it was not worth the discomfort for me. Because of the #*@* clips they left in my left breast, I can no longer sleep on my stomach or the left side, so I can only sleep on the right.  As a result, my right shoulder and arm had become painful the way you described and I was about ready to jump out of my skin.  It took me 3 different acupuncturists to find the right one for me (my favorite died a few years back).  I FINALLY have some relief and feel so much better.
It would be worth a shot, you got nothing to lose but the pain!-Peggy

CindyGraeff
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Re:RIBP & CIPN - Nerve Damage from radiation and chemo treatments - Sunday, January 30, 2011 2:37 PM
Thank you Mary & Peggy for your responses -

Mary - I sure do understand the need for paper cups!  Haha!  I have broken many a thing, and each time it comes as a surprise!  UGH!  How did I do that again!  I wish you well with your continued survivorship.

Peggy - I have not tried acupuncture, but I am very open to the idea.  I will check with my current Dr I have for the neuropathy to see if she has any referral suggestions.  I'm very happy to read you have found some relief from the day to day pain we endure - that's excellent news! 

The Cymbalta low-dose seems to help with some of the intense pins/needles in the right side of my hand - it is so sensitive I can't stand to have it rest on anything - but this seems to take some of the edge off of that sensation.  Otherwise, I don't notice anything else with taking the drug.

I live in the Dallas, TX area if anyone knows of any acupuncturists to recommend - I'd greatly appreciate it.

Stay strong everyone!
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

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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