Nerve Damage - CIPN & RIBP

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  • OBXK
    OBXK Member Posts: 791
    edited July 2011

    I started them a little over two months ago. I told my onco about the tingling at treatment number 4. I should have refused it. The Neurontin helps the buzzing and the antidepressant, helps a bit with the foot pain. They sometimes make me feel sleepy. My mom died as a result of CIPN, so as you can imagine, it worries me that I'm getting worse, not better. I have boys 11 and 16, it's hard to explain that I can't make plans ahead of time, because I never know how I will feel, from one day to another.

  • OBXK
    OBXK Member Posts: 791
    edited July 2011

    PS - I am going to ask about the cream.

  • Binney4
    Binney4 Member Posts: 8,609
    edited July 2011

    Cindy, we haven't heard from you in a while. Hope you're doing okay! What news?
    Binney

  • Cincerely
    Cincerely Member Posts: 93
    edited July 2011
    I have been quiet the past several days - thanks for checking Binney. My Mom has unfortunately lost her battle with congestive heart failure, and passed away peacefully on Monday. Its been a rough few days. She lived a happy 86 years, 70 of which have been with my Dad. I worry about him and his loss, as it is more than I can imagine. Also, I went to the dermatologist about the weird rash on my arm and my radiation site on my chest where I was burned badly. He took biopsy samples from both areas, and also a spot on my leg that he felt was questionable. This just occurred yesterday so I do not have any pathology results as of yet. I'll post once I get any news.
    I'm glad the Neurontin helps take the edge off the crazy non-stop buzzing you have OBXK. I'm sorry about your Mom's death related to CIPN - May I asked what specifically caused it from the CIPN?
    Hope everyone is doing well - Stay Strong.
    Cindy
  • OBXK
    OBXK Member Posts: 791
    edited July 2011

    Cindy, I am so sorry for your great loss. My mom was on thalidomide for multiple myelyoma. Her CIPN started in one leg. She quickly lost the ability to walk, then sitting caused too much pain, then bedridden. This led to blood clots in the lungs. She decided not to fight any longer, due to the great nerve pain. She went from walking to death, in 6 months. She had only had one M/M lesion. It was small and responded well with rads and Zometa.



    I hope your test results are good - And quick!

    Karen

  • Linda-n3
    Linda-n3 Member Posts: 2,439
    edited July 2011

    Cindy, I am sorry to hear of your loss.  I can understand why you would be so concerned for your father.  (For some reason, it seems that women are better able to deal with loss than men are. I think that is one of the reasons I try to keep on going - I worry about what would happen to my DH - isn't that silly?)

    Karen, I just ran across some news story about a genetic link to who gets CIPN - nothing proven yet, and I don't have the citation for you, but I am wondering about that because of you and your mom.  I will dig a little more.

    Peace to you all tonight, Linda

  • OBXK
    OBXK Member Posts: 791
    edited July 2011

    Thank you Linda - I have read about the genetic component as well. I'm so glad, they have identified a bio-marker to better predict folks like us.

    Wondering, sometimes my toes, turn red and itch. Neuropathy?

  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited July 2011

    New thread on social security questions answered by a lawyer whose wife has BC. Knows his stuff------posting on a bunch of threads---------go to financial forum

     Can't make link work without trouble, not up for it.

  • Binney4
    Binney4 Member Posts: 8,609
    edited July 2011

    Cindy, I'm so sorry.Frown So hard for your dad too! Please rest up, though, and take care of yourself -- the stress and plain hard work can take a toll.

    Waiting for test results -- UGH!! Looking forward with you to only good results and a quick fix.

    Be well,
    Binney

  • whitty04
    whitty04 Member Posts: 7
    edited July 2011

    Heyup Cincerely,

    How are you feelin today?

    Have been sat here readin through your posts, i noticed you have a facebook account, which i tried to get into but could not find.  I have many a useful link via fb, i think might just interest you.

    I was diagnosed with breast cancer 22.03.11, operation needed, and went well. Aftercare is x6 rounds of E&C chemo, the radiation and her pills.

    I had all the usual apts, with all the usual specialist doctors about chemo, and what i was likely to expect, with wonderful statistics on severe long term side effects. It sounded like i was in good hands, with great prospects. So have blindly followed all recomendations given. Im now on round x2 of chemo, and goin through hell.

    After a conversation with a dear friend of mine, i was shocked at her reaction at my compliance with the medical profession treatment plan for this disease. She gave me a few links, and sites to start investigating everything, from cancer itself, to the chemo, radiation, statistics, doctors, charities, research, pharma companies, FDA, and the people who seem to run the cancer trillion dollar empire, alternative therapies, proclaimed cures etc, etc.

    I found that i was shocked at the statistics given to me in the doctors office, when i first had my pep talk on chemo sounded so great, but wanted to know how these figures were generated and arrived at. The figures given in that first apt are not true, statistical figures, but merely 'cooked' to make them look good. for eg... One way to cook the figure... when a patient dies of 'septis' which of course is caused when havin had chemo, results in little or no immune system, the death certificate will read as cause 'septis' ... and not 'cancer-septis'.  Another way to cook the figure is upon death, the dose of chemo, or radiation might be so high or uncopable to the patient that a heart attack will ensue. Upon autopsy, the MD will be excited and eager to pass on info that the patient appears to be cancer free, so cause of death ' heart failure', which in real time should say, cause of death ' chemo induced heart failure' or ' cancer related heart failure'  just 2 ways the figures are cooked, with many more on line to find.

    I next researched side effects, and am horrified to find that chemotherapy can increase your chances of 5-6 life threatenin other bodily cancers in the future. WHAT!!!! But have been told by doctors and on here, ' The risk is very small', well i say look into that 'small risk' and find out how they arrive at the figures to justify sayin 'small risk'. Get real, we are talking about cancer here arent we? So am i trading this recent breast cancer off for a later more horrifying one?.

    Who makes these decissions on medical therapies? Why has no cure been found, with all the trillions given from charities? why have other doctors claims of cure (which are many) so dismissed as quacks so readily, without research?

    I truly believe all the above is down to money, power n who has it.

    Mr Rockefella, head of chemistry co in early 1900's, branches off in2 medical education. Later to start what is now FDA, who are just a coverup for the original 'chemisrty company'.  Mr Rockefella is very rich, then owning all chemisrty, n industrial corps. He 'donates' grants to american medical schools, who will continue to recieve grants providin Rockefella has a say in what gets taught in med school. Compliance = Big grants.  He now controls the chem industry along with the med education system, he then breaks out into Pharma companies, making these medicines, teaching them in schools, gettin them passed thru FDA via politicians, check and mate to the people.

    So in a nut shell, he makes the drugs, teaches new docs about his drugs, gets them passed thru fda, then sells them!! BOOM check mate, one very powerful n rich man.

    Other cures?!!  I believe that there ARE cures for cancer out there. There are too many noble prize winners out there all doctors, that are just ousted as quacks. Good enough for that noble prize, but not good enough for a cancer cure, eh? Well that too makes sense when you research it. As these doctors come forward with there claim to cure cancer, with years of research, and patients details, even goin to court to be heard, ultimately, the drug or treatment has to be passed, and guess who passes it, FDA!!!! if the doctor will not subscribe to FDA RULES, then the FDA will not pass it. This generally means that the cure cannot be 'patented', meaning, purely made and marketed by Rockefella. One example of this... 'Hemp oil' .. many patients in Canada, and all over claim this oil for its cancer healin agents, in so many different ways, from internal cancer to skin cancer to pain relief. One medical establishment in San Francisco allowed to prescribe for medical issues. Why oh why dont Rockefella, FDA look into this and do actual viable studies on this? Because they cant 'patent' it. Think, if hemp oil really was the all round do-gooder, Anyone can grow it, and harvest it, therefor no need for FDA,Big pharma, Rockefella etc, etc no profit in other words!!. So a good way to oust a doctor and theory , call him a 'QUACK' even though that doctor is a noble prize winner, some many times over!!!!!!

    Whilst we are 'sheeple' and following the chemo road, we need these empires and all the medication THEY, make and conveniently SELL to us for the side effects,  funny that eh, all the meds are in place for the side effects.

    A cure is not financially acceptable at the moment. You have med schools training specialist doctors, nurses, The company lookin after the 'bio chemical drugs' delivery drivers, hospital staff, pharma companies, etc etc, what will happen to all these people and their jobs if a cure is found, and not to forget Rockefella, FDA etc, etc what will happen to there self made trillion dollar cancer empire.

    i have spoken to various people and got different responses family directed me here to this forum. I have yet to find a real time for and against discussion about anything. This site is very good for the average joe public, who need support from like people, or positive lifts in mental mood occassionaly. I personally need niether, i wanted a good informative sight where i could arrive at my decissions myself. I believe this site and all like it, that are enforced by the med profession, firstly tell you what they were told, by someone who learned it in a school bein told what to learn, and read to say the right propogander for the right ends, to get people on chemo!!

    Im horrified to hear of your sufferins now, and like you think we all need a voice, and more real, true information to come to our decissions, no more propogander!! i think for now we have to go find this information ourselves, investigate, educate, circulate,

    Hope you find some answers, can you pm me the fb page and i can send you some informative links and pages.

    Best of luck to you, and above all, do not be quiet, keep doin what your doin, keep askin, keep in the middle of it all, take your life in your hands.

    health n happiness to you x

  • Cincerely
    Cincerely Member Posts: 93
    edited July 2011

    Well.... I had my "rash" checked by a dermatologist that's on my right arm and chest. It is benign, and a condition mostly caused as an after effect of chemotherapy/radiation. Gave me some topical creme to help calm it down. However, while I was there, he noticed a spot, smaller than a dime, on my right thigh. He took a biopsy there too. That one is Basal Cell Carcinoma. He removed it today. What was less than a dime size is now a 4" incision. Ouch! It was rather interesting to look at. Haven't noticed any other spots.... :) so, cancer #3 has paid an unwelcome visit. Whoever said "three's a charm" is a liar!

    Stay strong,

    Cin

  • Linda-n3
    Linda-n3 Member Posts: 2,439
    edited July 2011

    Cindy, so sorry about the new battle scar! Ugh! Hang in there - this is at least probably one of the most treatable of cancers. Glad to hear the other rash is better with the new cream.

    Hugs, Linda

  • Cincerely
    Cincerely Member Posts: 93
    edited July 2011
    Next week, I need to have a cardiac catheterization as a more thorough look into my Cardiomyopathy and increased symptoms I am having. Yes, the Cardiomyopathy is also a direct result of the chemo/radiation..... another reason we need more attention given to the survivors, pay attention to what's happening to the lives saved, and work at kinder, gentler, cancer killers - does anyone at BC.org read these posts? Hey!! Pay attention to us!!!
    It's almost time (< 1 month) for my 5th year (from end of treatments), 6th from diagnosis, breast cancer cancerversary. No matter how many of these we got through, there is always some anxiety that comes along for the ride.
    In the meantime, I am looking forward to my visit to Memorial Sloan Kettering Cancer Center and Dr. Stubblefield. I will be posting each day I am there with updates on progress and information. ;)

    Stay strong,
    Cin

  • Linda-n3
    Linda-n3 Member Posts: 2,439
    edited August 2011

    Cindy, thinking of you today.  Hoping for the best with your cardiac cath.  Did you have adriamycin?

  • Thankful2B
    Thankful2B Member Posts: 9
    edited August 2011

    Oh Cindy,

    I so admire your strength & can't wait to meet you on the 18th. Reminder: even though you have no lymphedema, be sure to wear the full arm compression sleeve plus the gauntlet on your hand when flying. The gauntlet comes open or with fingers, if you prefer. I can no longer wear the open one with my RIPN, it's too painful. I too don't have lymphedema, nor do I want it, the compression garments are a preventative. The cost is totally covered by insurance, if your ONC writes a presription for them.

    Sorry to hear about the BCC. Hope to hear the cath was stable. Looking for an update, see you soon GF.

  • Cincerely
    Cincerely Member Posts: 93
    edited August 2011

    Thank you for the well wishes!!  ;)   Yes linda, I had the nasty red/pink devil Adriamycin -  twice... 5 cycles in 1984 with the cocktail for Hodgkin's Disease, and again for 4 cycles in 2006 for the Breast Cancer cocktail - essentially I crossed the border line for "suggested" life time dosage.  I hate pink - always did - and that drug made me hate it more.  Going in, and coming out... anything that makes your pee pink has got to be bad!   ;) 

    Can't wait to meet you too Pat!  

    I have an ill fitting sleeve I got after my chemo in '06 - I hope they will be fitting me for a better one at MSKCC.  I am hoping to come away with many lessons learned and tools to share!  

  • Binney4
    Binney4 Member Posts: 8,609
    edited August 2011
    Looking forward with you, Cindy. Prayers for smooth sailing and great answers on the heart  issues -- ugh!Tongue out
    Binney
  • Linda-n3
    Linda-n3 Member Posts: 2,439
    edited August 2011

    Cindy, I was terrified of the potential cardiac effects of adriamycin, but got neuropathy with taxotere, and finished up my last chemo round with adriamycin after 2 cardiologists and my MO said I would not have any problems with the single low dose.  My cardiac enzymes went up with just the one dose, and now they tell me they can monitor me for the rest of my life "just in case" and that they can "manage" symptoms if I have them..... just like they told me neuropathy was not likely with the taxotere and they could "manage" that if it happened... so far, NOT!!!! (well, at least not to my satisfaction so that I can function fully).  I am offering special positive vibes and prayers for you.  How soon do  you travel?  Sounds like a great trip coming  up!

  • Linda-n3
    Linda-n3 Member Posts: 2,439
    edited August 2011

    Has anyone been taking vitamin B6 for neuropathy? I was taking it on the advice of my MO, took large doses for a couple of months, then decreased to 50 mg/day based on her recommendation.  Saw the neurologist a couple weeks ago, had a vitamin B6 level drawn, and I apparently have overdosed myself on it.  The neurologist never called to let me know, I just found out because I was checking my labs through our online medical records, and it turns out that excessive B6 can CAUSE neuropathy!!!!!!  I actually discontinued ALL my supplements when I went on vacation last week - just tired of taking ANY pills.... have not started any and am thinking I won't start anything else!!! Geez..... try to do the "right thing" and may have been causing more problems....

  • Cincerely
    Cincerely Member Posts: 93
    edited August 2011

    Well... Holy hell - what was supposed to be an easy-peasy cardiac cath to measure the interior blood pressures, and take a closer look at the mitral valve disfunction, turned into the discovery of 3 blockages.... One required a stent, the Proximal Circumflex Artery, with 80% blockage.  The other two are the Right Coronary Artery at 40% blockage and the Left Coronary Artery at 50% blockage, these will just be monitored.  So instead of a half day hospital test, I had to spend the night.  it sure could have been worse.  I'm glad I had it done before a heart attack came along.  I just have a very nice shade of purple bruise along the top of my thigh/hip, and a new drug to add to the list of many others.  My Cardiologist was not on rotation to release me from the hospital, one of his partners was instead.  So I will talk to my Cardiologist at an appointment this week and get the details on everything else.  A week to go, and then it's off to Memorial Sloan-Kettering Cancer Rehab for a new adventure in survivorship :) 

  • Linda-n3
    Linda-n3 Member Posts: 2,439
    edited August 2011

    Cindy, am so sorry you have more issues, but glad they found them BEFORE you got one of those arteries completely clogged. How was the mitral valve? Hope today is better.  Hugs, Linda

  • Linda-n3
    Linda-n3 Member Posts: 2,439
    edited August 2011
    Have MRI tomorrow, then follow up with labs and MO on Friday.  Can't afford the time and axiety as I just got back to work full time and have lots of projects to get done before students start in less than 3 weeks.  Am teaching a brand new course, maybe 2 new courses, along with a couple other new things and only one course I have taught before, so am beginning to stress over that, which makes pain worse, which makes anxiety worse, which leads to sleep prolems, more fatigue and more pain.  I know it's a vicious cycle, and am trying to use yoga and breathing techniques.  Just wish this week was over with all the medical stuff. The rest of life keeps me busy enough, and I just don't have time for this breast cancer crap anymore!!!!  So my reports better be good!!! (OR ELSE!!) Tongue out
  • Lawgirl
    Lawgirl Member Posts: 23
    edited August 2011

    OBXK interested in hearing your results using the neuropathy drugs. They stopped my taxotere at 4/6. My neuropathy was so bad my face and tongue was swelling as I left the chemo room despite the benedryl and my tongue still has tingling days and taste change. On top of that was what I loved ,not, was the freezer burned/frostbite I liked to call it, in my hands and feet that felt like it was crawling up my hands and forearms plus joint pain. At 3, they tried adjusting the dosage to help, by 4 I couldn't feel the bottom of my feet or tips of my fingers plus the burning tingling feeling elsewhere-and my tongue nearly choked me to death. using a cane now, hurts to walk, still numb on bottom feet and hands plus tingling. Is it just me or does it get worse with humidity? done surgery, in rads. Surgeon really recommends more chemo side effects notwithstanding, because of surgical path report. MO making me have a rest after rads- while they figure out what to give me. Frustrated. Was active and healthy- since April I've sprained my ankle, cut my fingers, and burnt myself! does your drug regimen help?

  • Linda-n3
    Linda-n3 Member Posts: 2,439
    edited August 2011

    Lawgirl, I tried neurontin (gabapentin) beginning after #2, but got no relief.  Increased dosage over next few months, neuropathy progressed, and all I got were more SEs from the Neurontin.  I was also very healthy and active prior to chemo; my tumor was a bit smaller than yours, had 2 positive nodes, so was only stage IIb, but also grade 3 so chemo was probably better for the more aggressive tumor stage, but my MO said that 4 T/C were as good as 6 according to the research presented at the San Antonio conference last fall.  I was only able to do 3 T/C, switched to A/C for the last one.  The nodes disappeared clinically and on PET scan (I refused axillary node surgery - was terrified of damaging axillary nerves on dominant side, same reason I refused rads, and am quite happy with my decision as the CIPN is bad enough).  My main problems are jaw and teeth are so painful I cannot smile, feel like my face is wooden, without emotion, hard to chew food, teeth then tingle/mouth feels like it is on fire.  Same as fingers when I type or do any paper work or anything that uses hands for more than a minute. I'm not sure things get worse with humidity, but they DO get worse with fatigue and anxiety.  Have tried other treatments, no improvement, only more SEs. Am discouraged (again).  Wish I could give you more encouragement.  We can just hope things get better with time, and support each other with prayers and well wishes, hopefully a bit of humor along the way (I hope to find my sense of humor again, maybe tomorrow...it seems to pop in and out these days).

  • OBXK
    OBXK Member Posts: 791
    edited August 2011

    Lawgirl, Neurontin helps with the zinging feeling. Nortriptyline takes away a bit of the foot pain. My EMG showed nothing, so I have a MRI of my C&T spine.

  • Cincerely
    Cincerely Member Posts: 93
    edited August 2011
    Here it is - the first installment of my MSKCC Rehab and Dr. Stubblefield evaluation.
    Sunday, Aug 14th - Arrive in NYC! Good smooth flight, quick taxi ride to the hotel... raining and 70's - much different than the TX heat we left behind!
    Monday, Aug 15th - Started with MSKCC Financial Center - to obtain my insurance info and explain benefits - from there I headed to Dr. Michael Stubblefield's office for my initial evaluation/consult. It began with a staff physician and medical student asking many questions regarding my past medical activity, specifically the Hodgkins Disease and related radiation/chemo treatments in the 80's, followed by the additional Breast Cancer radiation/chemo received in 2006. What was refreshing, and encouraging, about this initial discussion was that they understood the damage I have, the related nerve pain, muscle loss, and addition of heart complications. I didn't get the usual ‘deer in the headlights look, and shrug of the shoulders, of I don't know what to do', response. They then examined me and tested strength tested my fingers, hands, wrists, forearms, biceps, shoulders, neck, legs, and feet. After which, they discussed with Dr Stubblefield. He then came in, introduced himself, and said I believe we need to move to a larger room. OK - wasn't sure why at that moment, but OK just the same. As we walk into the larger examination room, he asks if I mind if his physician and intern staff join us so he can share our discussion and his examination for teaching/learning purposes. I welcome that - the more the merrier! The medical world desperately needs to learn about this virtually unknown, survivor quality of life, problem. So, in came 5 additional Drs. He then asked me questions about pain, numbness, paresthsia and performed some basic strength tests. He physically examined me, discussing out loud his findings for the benefit of the room - and he showed us all MRI graphics of patients with radiation induced brachial plexus involvement, along with photos of neck, back and spine distortions from the radiation nerve damage and related muscle atrophy. He indicated that my severity of nerve damage is mostly from the Hodgkins Disease mantle radiation from the early 80's - the Breast Cancer overlapping radiation of course added to the progression. I am apparently in a 1% population of overall patients he has seen. Interesting indeed. It doesn't make me feel better, or worse, necessarily, as I believe I am in the right hands for diagnosis/help now.
    The loss of right hand/arm functionality, from nerve damage, is not repairable. The neck, shoulders, and left arm nerve damage, muscle weakness, and overall pain, is attributed to the radiation, and is also not repairable.
    The numbness, paresthesia, pain in my lower legs, feet and toes, would not be related to the mantle radiation.
    He has scheduled an EMG for Wednesday, that will be performed in the office. I also have been scheduled for two MRIs next week in the MSKCC hospital locations - one for the brachial plexus, the other for the entire spine. These will rule out any other potential issues, like a tumors - benign or malignant - other nerve disorders, spine problems. Also, they will measure the level of damage done, allowing a full diagnosis and prognosis, followed by a plan of action.
    Dr Stubblefield is an incredibly personable and knowledgeable MD. He specializes in helping the survivor, surviving the treatments that saved their lives. Bringing back, some of the quality of life those of us have been missing for years. He works closely with the Physical and Occupational Therapy center and directs them to treat the individual needs of each patient. He will also share the plan for PT/OT with my Doctor back in Texas to continue once I return.
    After my meeting with Dr Stubblefield, I headed to my first Physical Therapy session. There, I received a very detailed examination, and analysis of my physical condition. Measurements and notations made. During the entire time, they explained clearly what they were seeing, doing and documenting, along with why. This allows them to focus on the areas of weakness, which will in turn allow strengthening in core areas. Most of yesterday's time was spent on analysis and planning. Although I did get some homework! Diaphragm breathing while lying down - and learning how to keep the side-stitches under control. ;) I'm already using muscles that have not been used in years. Also, a big change for me - will be practicing, and eventually mastering, sleeping on my back. Very big change - I have been a stomach sleeper for most of my life... and if not on my stomach, I am on my right side... two positions that in the long run do me no good. So, sleep positioning with correct pillow placement is in my future. Apparently, it's not normal to toss and turn all night long... who knew?? Correct positioning equals more restful sleep... :)
    My first Occupational Therapy is later this afternoon... I'll write more tomorrow, after my EMG and PT/OT sessions.
  • Lawgirl
    Lawgirl Member Posts: 23
    edited August 2011

    OBXK thanks for the info. Yes it's very frustrating- and now that I'm thinking of it it could be fatigue not humidity lol- im on #25 of radiation and I don't think its my imagination that neuropathy seems worse:( I can even feel it in my tongue again- no swelling at least this time. And a very heavy arm that's crawling with tingles. I see a neurologist on the 1st for medication- I'm hoping something helps.

  • Linda-n3
    Linda-n3 Member Posts: 2,439
    edited August 2011

    Lawgirl, that is interesting that you are feeling a "very heavy arm."  That is exactly what I experienced about a month or so after last chemo, could hardly move them.  Very odd feeling.  Still comes back, mild pain in the muscles with the heaviness.  Just very odd and difficult to describe to the various docs.  Am sure they think I am crazy (and sometimes, I am beginning to wonder if I really AM!)  Good luck on the meds!

    Cindy, thanks again for filling us in on your visit.

    Don't know if I posted here or another thread, but I am working with a toxicologist who prescribed a topical cream for hands.  Not terribly effective for other areas affected by the neuropathy, but after using it for a month, then not using it for a month, I figured out that it helped the finger tingling and severe cold sensitivity while I was on it.  And I didn't have effects like drowsiness, dry mouth, jitteriness, etc. that the oral meds gave me.  So I am back on it starting tomorrow.  Any relief will be welcome!

  • Cincerely
    Cincerely Member Posts: 93
    edited August 2011
    MSKCC Rehab - second installment -
    Tuesday, Aug 16th, I had my first Occupational Therapy session. It was mostly information gathering for the therapist, and a few measurements. Several were related to range of motion and flexibility. Another was sensory - a series of pen-like gadgets (5 or 6), each with varying size fiber attachments, from the thinness of a hair, to the thickness of a drinking straw. With my eyes closed, each size was touched to different points on each finger and hand to determine what size I could feel. Right hand could only feel the thickest one (drinking straw like) fiber, and only in a few spots. Left hand could only feel the middle sized fiber on fore and middle fingers. And the next thicker fiber on other two fingers. After that, she had me squeeze a hand held gadget that measures the strength of grip in lbs of pressure. The right hand gripped at its maximum 13 lbs of pressure. The left hand gripped at its maximum 45 lbs of pressure.
    Wednesday, Aug 17th, was my EMG/nerve study with Dr. Stubblefield. An electromyogram (EMG) measures the electrical activity of muscles at rest and during contraction. A nerve conduction study, measures how well and how fast the nerves can send electrical signals. Not a very pleasant test, but certainly not the worst either. The overall study took 2 ½ hours.... I am very sore this evening.... muscles and nerves are very unhappy with those studies. The result is confirmation of RIBP (Radiation Induced Brachial Plexopathy) and Radiation Induced Fibrosis. Damage is more extensive on the right side, entire neck, and both shoulders. The Brachial Plexus has 3 main sections. The lower section is severely and extensively damaged by the radiation, which killed the nerves by stripping the sheathing off, causing them to short circuit, burning up the nerve cells. This lower part of the Brachial Plexus affects the hand/fingers. The middle portion of the Brachial Plexus is also damaged, in the same way, but not quite as severely. This middle section affects the forearm. The upper section of the Brachial Plexus, pertains to the upper arm. I do not have much damage to that section, so my upper arm may retain more strength. Loss of right hand usage will continue and eventually become a dangling arm extension. Forearm will continue to become weaker, and not be much more useful. Neck and shoulder weakness will also progress. The weakness is caused by the inability of the damaged nerves to feed the muscles. The nerve cells that have been destroyed are unable to repair on their own or with any medical/science treatments. Since the muscles can't be fed, they too die, which is the atrophy. No CIPN (Chemo Induced Peripheral Neuropathy) findings - which is good. Lower leg weakness, paresthesia and foot drop are stemming from my lower back, possibly where I had surgery/fusion in 2003.
    I am going to be fitted with a neck support that simply acts as it sounds. I'll use it when I tire or am sitting up for more support, less fatigue on neck/shoulder muscles. Also, I will be fitted for lower leg/foot braces to help with walking and providing foot support. So, prognosis isn't great - but at least there are items to help, and range of motion/core strength/stretching/posture building PT/OT to build on. I need lots of help with that, and this is definitely the place to get it.
    I asked Dr Stubblefield about stem cell regeneration, and if it is a possibility for this kind of nerve damage - sadly, he shook his head no, and said it is not anywhere in the works for this survivorship problem.
    I have a full spine MRI and a brachial plexus MRI scheduled next week for further diagnosis and definitions.
    Dr Stubblefield is amazing, as is the entire MSKCC Rehab PT/OT team. I have been given so much attention and assistance and information in just the first 3 days, I feel my head will explode - in a good way. Cancer survivors are living much longer than before, and they are just discovering the intensity and magnitude of the long term effects from treatments. Focus now, is improving the quality of the life that's been saved.
    More to come after further PT/OT and MRIs completed...
    Stay Strong,
    Cindy
  • Cincerely
    Cincerely Member Posts: 93
    edited August 2011
    MSKCC Rehab - third installment -
    Middle of week two in NYC - Memorial Sloan Kettering Cancer Rehab - Both MRIs are completed. It'll still be a few days till the results/reports are received.
    I was fitted for and received the lower leg/foot braces and neck support on Friday. The leg/foot braces may need to be adjusted. And the neck support will need some getting used to - both are not to be worn all the time, just when most needed to aid when doing more walking, and when my neck muscles tire from holding my head up during the day.

    So far, I've had 12 total sessions of physical, occupational, and manual manipulation therapies - learned so much in this short time. They always give me printouts with detail pictures and instruction on each exercise. It's a good thing they do - chemo brain would never be able to remember it all! I had to by a binder with sheet protectors to keep all the exercises in. There are many posture correcting exercises I can do on my own, that help stretch and position my shoulders and neck. Most are very simple, yet very beneficial. Breathing from the diaphragm is helpful for core strength. Using the diaphragm allows deeper breaths and better posture. Remembering to sit and stand erect as if there is a string pulling my head straight up to the ceiling. Squeezing shoulder blades together while leaning against the outer corner of wall. Pushing each shoulder against a towel along the edge of a wall corner, while keeping my body straight. Multiple hand flex and finger coordination exercises, some using play-doh type putty.... I always liked play-doh! There are strength exercises to help maintain my upper arm muscles, as they are least affected by the nerve damage. These are more isometric, not using any weights. The weights dramatically increase my stinging paresthesia pain and what I call "bee stings" in fingers/hand. The PT manual manipulation is incredible... she is able to get down into the tissue, with very little pressure, but so exact in positioning that it has already helped loosen my bound shoulder from my neck. Amazing. She gets into my neck/head at just a couple points, and it makes a huge beneficial difference. Learning again how to use leg muscles that haven't been used properly in quite some time is a big challenge, and probably the most physically demanding. The entire plan will be brought home to continue. Suggestions on therapists at home were even provided, based on their completed levels of training and knowledge. Goals of feeling better and enhancing quality of life are being met.

    Learning to sleep on my back is still taking time to get used to - sleeping in a hotel bed isn't helping either - back sleeping is best because it opens your chest for better breathing, and helps keep the shoulders stretched out, much better for back health. Its important to use a flat head pillow, and be sure to place it above the shoulders, so it isn't pushing your shoulders forward. Placing pillows under the legs helps keep the natural curve of your back. Once you are in a comfortable position, there should not be much movement through the night. A long restful sleep - what a concept?! Sleeping on your side can cause the shoulders to fold inward, allowing them get into the position that only encourages them to want to stay that way - binding the scar tissue/fibrosis even tighter.

    Two more days of therapy and learning to go - then I head home to continue on this path of rehab and QOL goals. This has been incredible - thanks to the MSKCC rehab medical staff - thanks to my life partner - thanks to my supportive friends who came on this journey with me - thanks to the internet for providing so much knowledge at my fingertips, and connecting new friends for support and knowledge sharing..... let's see, who is that? Al Gore??? LOL

    More to come after I get home and have the results of my MRIs.

    Stay strong,
    Cindy

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