Nerve Damage - CIPN & RIBP

Cincerely · January 2011

Where do I start? Wow - it's been 5 years since I was diagnosed, and not quite 4 years since my treatments (chemo & radiation) completed.
It's been just over 4 years since I started 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 grown more agonizing.
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 chemo drugs was vincristine (1984 for Hodgkins Disease) and more recently, 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 RIBP is so severe, my clavicle and shoulder areas feel to the touch, like cement was poured in. So solid, there is no soft tissue.
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. Typing is a challenge - lots of backspacing and deleting - good thing spell check helps.
My right forearm is relatively smaller in size to my left 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. Oncologists and Radiologists brush it off. 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 and some others I don't remember] 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. This frightens me, because I don't know how or if I qualify for social security disability. So 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. They cause arms/legs to jump and twitch - 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. Even our options presented prior to treatments are hard to comprehend - we want to survive first - fear drives us to "get it out" with a big fight. Would I have made a different decision on treatment options? I don't know - hindsight is always 20/20 - but are we ever really given a clear picture about what our future may hold if we do the big fight? We should.
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. I keep reading some ridiculous percentage of 2% - really? Just from reading postings I know that number is way too low - How about all of those who don't post - 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? Have 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?

Binney4 · January 2011

Hi, Cindy, and welcome!

I'm sorry I have nothing to suggest in answer to your questions (as we discussed on another site, the research just isn't there yet -- sigh!) But I did want to answer here to "bump" your post to the top again so others can hopefully answer.

Be well, all!
Binney

Joanne58 · January 2011

Cindy--I'm really, really sorry to hear of all the rotten aftermath of the chemo and radiation, plus the mere fact that you had 2 types of cancer to deal with. I'm amazed that you still press on and work despite your neuropathy. You're one tough cookie!

I'm responding because I'm doing something outside the standard of care with my dx. My onc. knew I had idiopathic neuropathy in both feet before cancer, so she started me on AC and hoped I'd be able to handle Taxotere w/Herceptin after that. My neuropathy doubled after the first 2 tx of AC, so she consulted with other oncs and they agreed I should avoid the Taxanes altogether. I iced my feet for the 3rd tx and it seemed to help. The Cytoxan was omitted from 4th tx, so I didn't ice my feet since my onc told me it was the Cytoxan that attacked my nerves. Well, the neuropathy increased again with just the Adriamycin. Looks like my nerves are attacked no matter what the chemo is, and it's permanant. I'll be having only Herceptin in Jan., which means no promises for BC recurrance since I'm off the known trials. I still feel good about this decision in my gut. I guess my point is that there are some oncs these days that are more aware of our quality of life and are adjusting the drugs accordingly. She said the Herceptin was the most important therapy I was getting, so I hope my heart can handle it. I also hope the next generation of cancer patients benefits from some other therapies that don't do so much irreversable damage.

I wish you all the best in getting out your message. We need better, louder and stronger advocates for BC, that's for sure!

Take care,

Joanne

Cincerely · January 2011

Thanks Binney! Hope you are doing well....

Wow Joanne - that does suck about the nerve damage you are also experiencing from the drugs and the adding onto what you already have had - i'm very very happy to hear your onc is being cognizant of these side effects and making adjustments to not only zap those nasty cancer cells but to also think about quality of life down the road. I wish you well on all counts throughout your treatments and continued life's journey.

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

shiny · January 2011

Hi Cindy,

I have CIPN, but like you said the oncs just brush it off, and only say "that's not going to go away now" when I finally mentionned it. After chemo you figure these things will get better, but as with you, the CIPN is getting worse. I though this odd, and wondered why, but you have found the same which although I do very much regret it for you, was interested to hear that, as though..can it make sense that it got worse?

I do not know of any sites that have discussed this. I have several health issues being investigated at the moment, but after I hopefully get resolution on those I would like to investigate which are the best pain meds specifically for this type of pain. (I get it worse in my feet, and under my nails also-finished Taxoterre in Dec 2007, as part of top dose FEC-T regimen.

Thank you for posting with your info. I will save this in my favorites and if I hear of any study etc I will post here. I need to get through the other stuff first, but I will also check back incase others have soemthing to add to this.

Take care,

Shiny

Cincerely · January 2011

Hi Shiny -

Yes, unfortunately, from what I am learning about the CIPN is that the muscle atrophy gets worse - the nerves received the initial damage at the time of chemo injection - but since the nerves feed the muscles, over time, the atrophy occurs and worsens. Crazy indeed! With the RIBP the nerve damage continues after the radiation due to fibrosis and scar tissue continuing to grow and choke the area - and then of course atrophy because the nerves cannot feed the muscles.

Additional GREAT NEWS for all - 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

Cincerely · February 2011

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

Cincerely · March 2011

Hey y'all!

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

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

Binney

Study Announcement: Recruitment of Volunteers

Exploring the Personal Impact of Breast Cancer-related

Radiation Induced Brachial Plexopathy (RIBP)

Women and men who have been diagnosed with breast cancer-related radiation induced brachial plexopathy (RIBP), with or without lymphedema, are invited to participate in a study. The purpose of this study is to help better understand patients’ experiences with RIBP including symptom experience, lifestyle changes, health information use, interactions with health care providers, personal coping, and the impact of RIBP on family or relationship quality of life.

Volunteers will participate in an informal interview over the telephone, via Skype, or face-to-face with an interviewer. The interview may last up to 90 minutes.

This study has been approved by the Miami University Institutional Review Board: 11-052.

This week, I took part in the study..... Took about an hour in time... Spoke to a staffer named Kelly who asked relevant questions and allowed answers as long as i could make them to get my voice heard.  Kelly is a very kind soft spoken compassionate young woman. Easy to talk with.

I highly urge each of you to reach out to Dr Radina, and participate in the study.... Our combined voices deliver a stronger message to the medical field for additional research and much needed funding.

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

Sent from my iPad

Cincerely · April 2011

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. )

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! )

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

Cincerely · May 2011

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.

Hope everyone is well.... Stay Strong.

Cindy

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Cincerely · May 2011

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

Cincerely · June 2011

Michael D. Stubblefield, MD has got it goin' on for us! He terms these RIBP survivor complications "radiation fibrosis syndrome".
http://www.mskcc.org/prg/prg/bios/666.cfm

Cincerely · June 2011

Correction - Dr Stubblefied is not speaking of RIBP - he is speaking of RIF. Two very different diagnoses. My error.

I got the following info from my friend at Step Up, Speak Out - RIF has been shown to respond to trental and Vitamin E, especially when treated early. But RIBP, unfortunately, doesn't. Here's a section with recent trental/E studies:

http://www.stepup-speakout.org/Radiation_Induced_Brachial_plexopathy.htm#drugs tren

Kimmysu · June 2011

Hello Cincerely,

I'm online looking for info on neuropathy and found your post. I don't know where you are in your treatments for your post-cancer induced pain, but I definitely believe you qualify for Social Security benefits. I know of a law firm that can help you file if you're interested. (I'm not affiliated with the law firm)

Cincerely · June 2011

Hi Kimmysu! I hope you are doing well..... Can you send me a private message with the info? Stay Strong! Cindy

ktym · June 2011

Cincerely, I'll look up that page. Thanks for posting this. I ended up with severe peripheral neuropathy and myopathy from taxotere. I get very frustrated sometimes when trying to say that because inevitably someone posts right after about how after a short time that all goes away and it is rough but doable. If I never hear the words but doable again in my life it will be too soon. So, thanks for being around bringing attention to and sticking up for those of us it wasn't so frickin doable for.

Cincerely · July 2011

Through a previous Susan G Komen forum post (thanks Pat!), I was able to find a Dr who actually specializes in cancer rehabilitation for the type of radiation induced nerve damage I have. He wrote a medical publication I was able to obtain and read - here is a link to the abstract http://www.ncbi.nlm.nih.gov/pubmed/21600368
I was able to obtain a full copy of the publication. As I was reading it, I thought he had written it about me? The Hodgkins Disease radiation I received in the 80's and the prolonged and progressive damage it causes all by itself, and then add some overlapping radiation to the mix. So, I sent him an email - he is at Memorial Sloan-Kettering Cancer Center in NYC, Dr Michael Stubblefield. He responded in less than 2 hours - there's a surprise - and indicated he could do an evaluation/testing/etc. on my current condition and work up a plan of physical therapy and occupational therapy - would I be able to come to NYC and stay two weeks? So, I did some more research - will my insurance cover out of state/region hospital/medical fees - and it does. Sloan-Kettering is accepted in my plan and so is the Dr. I will have the usual co-pay and deduction responsibilities. Plus flights, and hotel, are on me. The hospital works with several hotels that provide discounts to those staying overnight for outpatient procedures. Hotels are not cheap in Manhattan..... the discount is actually quite substantial - so that helps. Dr. Stubblefield is not going to be able to cure, or fix, the nerve damage... he will be able to perform the needed testing/evaluations in order to pinpoint the areas I may be able to strengthen or adjust to using, and hopefully help ease the incessant pain and paresthesia - and I'll be able to bring back a plan to follow when I get back to TX. HHHmmmmm.... a plan? I always need a plan of action - and with this issue, no other Dr has been able to provide one... I have, in my court, some great supportive friends. Two of them, will be able to tag team travel with me to NYC for the two weeks I need to be there. That is incredible! Surrounding myself with positive forces is always a strength that can't be measured.
I'm optimistic about this trip, as it truly has been the only Dr (other than research universities/clinical trials) that I have found who truly understands the problem - one that won't stare blankly and tell me there is nothing they can do to help. I'm scheduled to go in August.
I totally get the severity of my condition, and know it can't be fixed - but to be able to enhance what I still have and overall quality of life is a great sounding plan to me. It feels like a last ditch effort in a lot of ways due to the closed doors, lack of medical research/funding/knowledge there currently is ... it's an opportunity/chance I need to take.
My anticipated result -
1. A clear understanding of what damage has occurred
2. What to expect going forward.
3. An actual plan of action.
4. Physical therapy to help with range of motion.
5. Occupational Therapy to help with day to day life adjustments beyond what I've taught myself.
6. Pain/paresthesia relief.
7. A better outlook on quality of life. What a concept?

Stay Strong,
Cindy

Binney4 · July 2011

Oh, Cindy, this is truly exciting! Take your computer with you and keep us abreast of it all -- I'm really looking forward to all you'll learn, and especially to the heavenly thought of A PLAN! What a switch from the usual shoulder shrug that is all most doctors have to offer.

Hooray for your insurance for coming through for you, too. Was it a battle getting them to comply?

Onward!

Happy hugs,
Binney

Cincerely · July 2011

Oh yes - laptop will be another traveling companion Smile

The insurance I have has been great throughout the years I've been dealing with this last bout of cancer and related treatments - no complaints there. My employer has chosen a good group for us. So while I can continue to work - I'm fine in that department - its afterwards I will be concerned. Undecided

ktym · July 2011

Cindy, this is awesome to hear, looking forward to hearing updates

leggo · July 2011

I wish I would have found this thread earlier before you left Cindy. What I thought was neuropathy, turned out to be Paraneoplastic Cerebellor Syndrome. My doc seems to be angered that so many are being diagnosed with "neuropathy" rather than this. I would have loved for you to ask how physicians determine the difference, or if they are even aware that the two are not linked. My symptoms were much like yours but got continually worse.

Cincerely · July 2011

Hi Gracie! I am very sorry to hear of your Paraneoplastic Cerebellor Syndrome diagnosis. How long has it been since they were able to pinpoint this as the problem? Did it occur due to additional cancers in your body? Have any treatments now helped with the symptoms? I have not yet gone to Sloan-Kettering. I go in August, but I will definitely have this question on my list regarding diagnosis determination, and ruling out all others in the process. Stay well Gracie....

Stay Strong,

Cin

leggo · July 2011

Hi Cin, it started with taxotere treatment years ago. I had tingling in my toes that eventually lead to not having use of my legs, and weakness in my arms as the years went by. I do have mets now, but they are stable. It was finally diagnosed by a neurologist via a blood antibody test. Nothing can be done, other than steroids to ease symptoms, which really doesn't work, so if you hear anything, please let me know. Good luck at Sloan. All my best to you,

Linda-n3 · July 2011

I just found this thread, and wanted to share another treatment option. I have been exceedingly discouraged about the CIPN (my MO told me it MIGHT be a side effect - turns out 60% or more who receive taxotere have some CIPN, but it only gets really bad in about 5-10% - lucky us - and she also told me it was "manageable" but she did NOT tell me that I would be unable to function normally). I tried the usual drugs, all of which messed with my brain so badly that my quality of life was completely non-existant and I would rather have had some quality time before the cancer killed me than to survive with inablilty to enjoy life. I FINALLY got a referral to a wonderful medical toxicologist who helped do some research (is anyone else getting tired of doing all your own research????) on a topical preparation that uses the same drugs many have been prescribed, but are only applied topically, so there is no systemic adverse effects. It has amitryptilline, baclofen, and ketamine in a lotion. If anyone is interested, I can provide the research article that describes this trial. It seems to be minimally effective for me - have been on it for 2 weeks - and my brain is still functional.

kmdd, I completely agree with you that I am tempted to strangle the next person who says yeah, it's "doable"!

Cindy, I am interested in your difficulty with food. I had tingling (?) in my teeth right after the first dose of taxotere, with a feeling like my mouth was going to "fall out" and there was no evidence of any of the usual mouth sores. I had that feeling with each treatment, and now my teeth are so much worse with any crunchy foods and I am also using soft foods and sometimes pureeing my veggies.

Because I had such a problem with CIPN, I have refused radiation. The RO here said there was a "small but real" chance I could get RIPN, and I figured with my luck, that's what would happen. This is a very frustrating disease, and the survival can be even more frustrating. I keep reminding myself that the last scan showed NED, so the taxotere must have worked....

Cindy, good luck with your upcoming visit. Kind thoughts to you all,

Linda

Linda-n3 · July 2011

I also have been using a software voice-recognition program called Dragon that takes dictation, but I have to proofread VERY carefully as it makes mistakes - probably because I get tired and slur my speech. I forgot to mention that my face muscles all felt so fatigued that I could hardly smile, they ached all the time, and the same thing happened with my arms for about a month - very heavy, achy, unable to move them. MO blew this off, but I am suspicious it is all part of the CIPN picture, which has been improving over the past month, thank goodness!!!

Linda-n3 · July 2011

Here is the study I was referring to above:

http://www.ncbi.nlm.nih.gov/pubmed/20496177

Dr. Deb Barton has done a LOT of research on quality of life issues for breast (and other) cancer survivors.

Cincerely · July 2011

Sucks for so many of us to suffer each day physically, and mentally, and then have a large number of medical professionals not understand. I get very discouraged by the lack of attention this long term survivorship-quality-of-life gets for research funding. We all need to converge on the appropriate medical conventions in the large numbers that we are. They need to see us... See what has happened... Work on killing the cancer cells, and only the cancer cells. How do we do that? Does anyone from Breastcancer.com or Susan G Komen, or any of the other research funding foundations, read our forums/blogs? Do our Oncologists and Radiologists escalate our host of side effects to the medical board or whoever it is who can track our numbers for further research? I know we need to put faces to these issues, or we'll never get the attention cancer survivors deserve. Hell, we just beat cancer. We are already great warriors. My level of frustration today is high, code orange verging on code red-In case no one noticed....

Linda - I have the same issue with my face feeling tired... Smiling and talking and chewing is exhausting. My face hurts, aches. Jaws, not just at the joints, like TMJ. Also all along the jaw line into the neck. My mouth, and lips are tingling most of the time. Not sure if its caused by the upper mantle radiation I had (for Hodgkins Lymphoma), which went directly under the jaw line, or CIPN, or a combination. I noticed that if I drink alcohol, that symptom worsens. I don't drink often, actually, not often enough! ;)

I also have what I've been told is Radiation Rash on my chest, where I had the worst of my radiation burns during treatment. It has now appeared on the underside of my upper right arm. It looks thick, red, and gross. Some swelling and a lot of tightness. I may be showing some signs of lymphedema, which I have not had before now. And it itches like crazy!! I have an appointment with a dermatologist next week.

The past few days, my finger tips feel like they have slivers of glass in them - right hand, which is the RIBP side. I can't stand for anything to touch them. This is the hand where I have lost feeling, motor skills, muscle, strength.

Thanks for the info on the lotion, and Dr Barton. She's one of few who "get it". Im always happy when we find one! I'm glad to hear it helps your symptoms!

I'll be posting my progress and evaluation from the Sloan-Kettering visit in August as I go through each day.

Stay strong,

Cindy

Binney4 · July 2011

Cindy, be aware that what you're describing could be cellulitis, and if it is you need help quickly. New redness, tightness or swelling, and itching are all symptoms. Draw a line around the area with a permanent marker so you can keep track. If it continues, if pain increases, if it feels warm or you have a fever or general flu-like achiness, get to a doctor or ER at once. Cellulitis is serious and can become systemic quickly. Please be careful!
http://www.stepup-speakout.org/Emergencies_and_Medical_Care_lymphedema.htm

Be well!
Binney

Cincerely · July 2011

Thanks Binney! I will indeed get it checked... It just doesn't seem to want to get better. Wouldn't you think, that the Physiatrist MD I went to last week, and showed this to, explaining how it has grown, and how it feels, would have thought to take action - as opposed to sending me to a Dermatologist, with an appointment not until next week?? Hhhmmmmm.... I thought I needed to make a change with this Dr... now I know I do. Thanks for looking out for me Binney! Hugs!

OBXK · July 2011

I have CIPN. It was caused by taxotere. I stopped treatment at 5 of 6, due to it. It started with hands feet, and one leg, it has been moving inward and after a long car trip, my back is numb. I take Neurontin and Nortriptyline.

Karen

Linda-n3 · July 2011

OBXK, are these drugs helping? How long have you been taking them? How soon did you start taking them? Any side effects from them? Thanks.

Linda

Nerve Damage - CIPN & RIBP

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