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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
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