Thursday, January 2, 2014

Cancer Survivor Calamities: Radiation Induced Neuropathy RIBP; RIPN; RFS; RIF

Wow!  There are so many acronyms relating to cancer therapies beginning with “R”.  This group of the four “Rs” is not a pleasant, happy group to be a part of.  No one ever actually asks to join this group.  It just happens to those of us who have received radiation therapy to save our lives from cancer.  This group of “Rs” doesn’t care how long ago you received radiation therapy.  It just shows up unexpectedly, like that one family member you dread.  And once you got it, it stays.  Hell, it even spreads itself around. 

The 4 “Rs” are:  RIBP (Radiation Induced Brachial Plexopathy); RIPN (Radiation Induced Peripheral Neuropathy); RFS (Radiation Fibrosis Syndrome); RIF (Radiation Induced Fibrosis)

No doubt there are more.

Most of you know I have all 4 of the “Rs” – progressing RIBP (Radiation Induced Brachial Plexopathy), RIPN (Radiation Induced Peripheral Neuropathy), RFS (Radiation Fibrosis Syndrome), RIF (Radiation Induced Fibrosis), and severe heart damage, as my most dominate cancer survivor calamites.

These casualties of cancer radiation therapies are far greater then I’ve imagined.  I have read about many others in various web journals, posts and blogs.  As we live longer and we have the power of the internet we are coming together, comparing symptoms, medical care, and creating friendships.  And as individuals, we can now come prepared with facts and information when we speak with our doctors.

RIBP/RIPN/RFS/RIF continue to be the gifts that keep giving.  And I know they are going to continue down the road of my life, leaving behind destruction, physical pain, misery, and a hefty dose of emotional injury.  RIBP, RIPN, RFS, and RIF are disorders that do not go away.  Once the nerves are damaged, they stay damaged, and they begin to starve the attached muscles.  This is not fixable.   There are meds to ease some of the pain and uncomfortableness.  But, there is nothing that reverses the damage done, nor the pain that’s associated with it.  Having any of these is tough….

My right hand and fingers, along with my forearm, are utterly useless.  My right bicep and upper arm are weak and painful, but still a bit stronger than the lower arm.  Using my right hand and fingers to do simple tasks are no longer an option.  Simple tasks such as: pushing with enough pressure on any button on a keyboard or screen; picking up any item, big or small; holding a pen and writing anything; signing my name; touching an e-tablet screen and getting a response; nail clipping; uncontrollable tremors: which are just to name a few.

I’m finding my left arm and hand is following suit and starting to fade away.  My left hand is showing signs of the tremors, nerve pain, numbness, and marked weakness that I experienced with my right side. 

My head, neck, shoulders have had severe loss of muscle.  My overall weakness is evident.  The vertebrae, shoulder blades, and ribs on my back are quite visibly pronounced due to the loss of muscle.  My neck, back and shoulders contorted.  I have the “dropped head” syndrome.  I literarily have many moments when I cannot hold my head up.  I am constantly rolling my head from front to back, trying to loosen up the muscles, and relieve the pain, in my neck.  I am able to get somewhat comfortable as long as I have a seat whereby I can lean my head against the back, even if it means I have to scrunch down in order to do it, or if it has an arm rest I can hold my head up with my hand.  Both of which could be taken for laziness or an uninterested posture, which is not the case.  My back and neck are all pulled to the right as a result of the progression of RFS, RIF, RIPN, and RIBP. Tremors are noticeably evident as it takes me minutes to one-finger-type a few lines of text, only to go back and fix many mistakes.  I’m dropping things, finding it harder to carry anything in either hand/arm, do laundry, type, use a pc mouse, and pick anything up, no matter how light. My hand/arm will tremor and my finger will inadvertently choose something on the tablet screen or keyboard that I didn’t want. 

Cymbalta, Gabapentin, and Nortripyline, are the mixture of drugs I’m currently taking for the pain associated with degrading and dying nerves.  These drugs only take some of the edge off of the pain.  They do not take the pain, tingling, and tremors away.  They allow me to function.  They allow me to get some sleep, or should I say, they allow me to go back to sleep after the many disruptions of pain through the night.

And speaking of the night…. There are dreams I have that are disturbing.  Dreams about my right hand.  Dreams that I’m trying to hold onto someone, or something, of great importance.  I don’t remember the things I’m trying to hold onto, but I feel that there is consequence in letting go.  In a panic I awaken with my right hand in a grasping sort of position, of course not actually holding anything.  It’s like my senses are heightened, heart beating rapid, and my breathing quick.  It happens several times a week.  You’d think I would remember what I’m supposed to hold onto with a hand that can no longer hold.  Maybe one night it’ll be solved.

I recently learned that radiation damage to my phrenic nerve has paralyzed my diaphragm on the right side.  It’s been painful.  But I never knew what it was.  Without the aide of my diaphragm, my right lung only partially functions.  Hence my shortness of breath.

It’s possible, but not yet confirmed, that I may have what’s called Baroreceptor Failure.  Baroreceptors are nerve sensors located in all blood vessels.  These nerve sensors control blood pressure levels and react automatically to the body’s physical movements.  In Baroreceptor Failure, the message to the nerve sensors is interrupted, causing these automatic reflexes to fail.  The sensors automatic reflexes assist overall cardiac function by aiding with the regulation of blood pressure.  The baroreceptors located in my carotid arteries may be damaged by the mantle radiation therapy I received in ‘83.  This is what could be causing my blood pressure to drop upon standing and walking, as opposed to the blood pressure’s normal automatic rising.  Could this be yet another “R”???  Maybe it will have the name “Radiation Induced Baroreceptor Failure”??

Anyone out there have Baroreceptor Failure and/or phrenic nerve issues as a result of radiation therapy?  Please leave a comment.  I would love to hear from you.

I’ve just recently learned that due to the potential nerve damage to my blood vessels (Baroreceptor Failure) and my paralyzed diaphragm, I no longer qualify as a heart transplant candidate, because a new heart will not help these things.  But you know what?  A new heart won’t fix my left knee issues either.  Nor will it fix the arthritis in my joints.  So I find this decision made by the transplant group a bit hard for me to digest.

As only Roseanna Roseannadana can say “If it’s not one thing, it’s another….”


I will need to have additional testing to confirm a diagnosis of Baroreceptor Failure.  If confirmed, there is medication to help control it, but there is nothing to fix it. 

This all fucking bites, to say least.

My brother once said to me “you can’t get cut a break”.  He’s right.  All of the cancer victims who have made it through heavy doses of the lifesaving toxic therapies will have some sort of late effect side effects, months, years, or decades later.  Many will have developed heart problems, such as cardiomyopathy.  Many may fall victim to nerve loss, pain, numbness, tingling in fingers, hands, toes, and feet, loss of muscle mass, body contortion.  Sadly, many may develop secondary cancers.  Or, they may have all of the above. 

Again, at the sake of repeating myself, this fucking bites.

So now I take time to network again with organizations, advocates, and the many friends I have made along the way.  Back into the advocating mode!  I love the friends and connections I’ve made.  And if I’ve helped one person out there know they are not alone in this wild, wild, whacky world of our cancer toxic therapies, long term side effects -  I would have accomplished my quest.  But of course that doesn’t mean I will stop!  It fuels a fire within! 
  

What a difference a year makes in regard to finding web information on RIBP, RIPN, RFS and RIF.  They have been recognized by multiple neurological hospitals, physiological clinics, and universities.  Hell, they’re even recognized by national and international levels.  But more and more of us are finding that our primary care docs don’t have a clue about it.  Even worse, some of our oncologists and onc radiologists still haven’t obtained this knowledge.  What the fuck!?! 

Personally, I, along with many other survivor advocates, know that we survivors are thrown into the wilderness once our cancer therapy ends.  The oncologists say all indications of your cancer appear to be gone – push us out the door with a good luck pat on the back – and instruct you to see your primary care doc for any future medical issues. I can honestly say that I felt, abandoned, lost and fearful. 
    
Through my web of networked connections, I’m finding that on a national level we are being recognized as a unique patient, with special medical needs.  And that is key my friends!  Once it can be governmentally identified it can be lobbied so that it is a requirement within insurance medical coverage. It would become its own specialty group of medical staff of MDs, PAs, RNs, etc., who would be trained to care for the cancer survivor.  Instead of that push-out-the-door-pat-on-the-back treatment received by the Oncology Office, you’d get a pat-on-the-back-now-we-are-handing-you-to-a-specialized-knowledgeable Cancer Survivor Physician!
  


But, for now it still boils down to the fact that we gotta look out for ourselves.  I’ve always said we must be our own best advocate.  Do the homework.  Gain the knowledge.  Go to the primary care doc prepared with knowledge, and lots of questions.  If your PC doc is reluctant to acknowledge your late effect side effect(s), then find one that will. Getting a physiological doc is another good source and who should be current with the damages of radiation.  I have a great PC doc, who is willing to obtain facts, and to educate herself with the knowledge needed to address my personal issues.

I was able to snag a few of the “R’s” website publications that may be helpful – most are related to Hodgkins Lymphoma, Head & Neck, and Breast Cancer victims.  Some of these publications are dated back to 2006 or earlier.  That doesn’t mean they are outdated.  The info regarding cancer therapy toxicity remains the same.  The awesome thing is that it is being recognized by Oncs and PC Docs who are keeping current on their patient care – and – that we as patients are better equipped by obtaining and sharing the knowledge!

I’d love to hear from anyone else out there who has had chemo or radiation therapies, that suffer from the late effect side effects of cancer treatments.  Please, please leave a comment.  It would be helpful for me, and for others who may have found this blog post.
 

RIBP-RIPN-RIF-RFS Resources

http://www.ncbi.nlm.nih.gov/pubmed/22108231  Abstract – Nov 2011  Dr Michael D. Stubblefield

http://emedicine.medscape.com/article/316497-overview  Updated March 26, 2013 “Radiation-Induced Brachial Plexopathy”

http://now.aapmr.org/peds/neurological/Pages/Radiation-plexopathy.aspx  
San Juan VA Medical Center Last Modified 12/27/12  “Radiation-Induced plexopathy (RIP) is a neurologic impairment of transient or permanent nature as a sequel to radiation therapy”

http://www.cancernetwork.com/breast-cancer/management-radiation-induced-brachial-plexus-neuropathy   May 1, 1996 British  “It must be acknowledged that RIBP is essentially an incurable condition, as unrealistic expectations reduce the chances of producing useful improvements in quality of life”

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2686782/  Oct 9, 2008  Nerve transplantation via surgery  -  “Radiation-induced brachial plexopathy is an uncommon but devastating late complication seen in patients receiving radiation therapy to the chest wall and axilla. “

http://www.casesjournal.com/content/2/1/6838  September 15, 2009   brachial neuropathy 22 years after radiation therapy for fibro sarcoma: a case report

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3786565/  March 1, 2012  “Dose Constraints to Prevent Radiation-Induced Brachial Plexopathy in Patients Treated for Lung Cancer”Dose Constraints to Prevent Radiation-Induced Brachial Plexopathy in Patients Treated for Lung Cancer

Dose Constraints to Prevent Radiation-Induced Brachial Plexopathy in Patients Treated for Lung Cancer

Dose Constraints to Prevent Radiation-Induced Brachial Plexopathy in Patients Treated for Lung Cancer

Dose Constraints to Prevent Radiation-Induced Brachial Plexopathy in Patients Treated for Lung Cancer




13 comments:

  1. Cindy,

    I applaud your tenacious spirit and your persevering encouragement to us, survivors, to educate and advocate on our own behalf.

    I encourage you and stand with you as you press on demanding that your ineligibility for heart transplant be proven beyond a shadow of a doubt. The evidence that you have gathered would seem to prove that your risk may be greater in a transplant situation, but ineligible, I don't buy it yet.

    Much Love
    Steph

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  2. Thanks Steph.... I've learned to be tenacious from the best! :)

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  3. Hey Cindy-1990 HD (ABVD/MOPP/extended mantle RT), 2013 TN BC. Didn't get adriomycin or RT for BC b/c of previous tx history. Am lucky to live in NYC and had treatment at MSKCC, so have been seeing Dr. Stubblefield for several years. He has been invaluable in terms of making sense of what is going on.

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  4. Hi Miriam - MSKCC is an awesome place to be treated! Dr Stubblefield is incredible. He is what every doctor should be. I went to MSKCC 2 yrs ago specifically to see him regarding my progressing RIBP. I was able to stay 2 weeks and worked with his PT group too. It was a great 2 weeks. Living in TX makes it difficult to get there.
    I spoke with Dr S on the phone yesterday. We were corresponding about my latest issue of the baroreceptor failure and paralyzed diaphragm keeping me from being a heart transplant candidate and why.
    I agree, he is invaluable. His knowledge and compassion is immeasurable. I need to have a knowledgeable Dr clone of him here in TX. :)
    Thanks, Miriam, for the note - It's nice to meet you!

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  5. nice to meet you too. Sometimes is good to know that you are not the only one going through something-especially something as poorly understood as the long term post radiation sequela!!

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  6. Cindy, I found this on the RIBP thread on bc.org, I helped write the step up speak out site, and "only" have to deal with lymphedema and endometrial cancer from tamoxifen. When I saw the med onc who ignored a lot of warning signs that tamoxifen was becoming a big risk for me, she cut me off saying "But you're FINE now!"
    In this age of youTube videos of a woman dancing in the OR prior to her mastectomy, it's so helpful to see the honest truth.
    I'm a physician, and I worked in radiation oncology, and far too often there was the attitude, "we saved your life, quit whining"
    Thanks for writing this blog
    Don't know how to sign in except as anonymous, sorry. Screen name on bc.org=Kira

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  7. Hi Kira - Thank you for posting.
    I've heard all too often those words too. "Hey, at least you're alive!" "Cancer is gone - So don't complain...suck it up".
    Our lives have changed dramatically. I'm trying to raise awareness that there is a problem with the way cancer is/was treated. That being the collateral damage. There now are millions of cancer survivors out there that are living longer than ever before. All are at risk of facing some sort of late effect side effect from the cancer therapies received. And they may appear at any time following therapy- immediately, or many years later. And... the symptoms of some of these side effects may not be understood by a primary care physician. But to someone trained in the field of these side effects would.... that's what millions of us need. It won't come soon enough.... but its coming! :) Nice to meet you Kira!

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  8. Hi Cindy, I also have the 4 R's due to RT for Hodgkin's. I was treated in 2000, 2001 & 2005, having RT in 2000 & 2001. It took years before it was figured out that it was from the RT and I have had a huge progression over the last two years. Your description of what has happened and continues to happen with your hands and arms, is also happening to me. I also have the "dropped head" syndrome due to weakness of my head, neck & shoulders. I am also a patient of Dr. Stubblefield's.
    I find it's difficult to express to people how badly this affects me due to the "at least you're alive" comment and this includes primary care docs. We definitely need more docs trained to care for survivors! I wish you all the best in your fight for a heart transplant.

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  9. Hi Joyce! Nice to meet you - although I wish it could have been for better reasons! I'm sorry and saddened you are going through these late side effects of RT. Next time you go to see Dr S please give him an extra hug from me.... He is a shining star for us all. We need to clone Doc Stubblefield! :)

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  10. Thank you for sharing these links..

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  11. I have Lumbar Plexopathy and would like to connect with others who may have this... Only seem to be able to comment as anonymous but my name is Helen.. I wrote a longer post but keep losing them!! Is there any thing that helps lessen the progress??? Fortunately I do not have pain but more numbness ad increasing weakness in legs.. Helen

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  12. This comment has been removed by the author.

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  13. Hi Helen - nice to meet you!
    You are the first case of lumbar Plexopathy I have met. How absolutely horrible it must be.
    I would love to read more from you.
    What I usually do when I want to post a response to a post, or actually post a page, I do it outside of the website. Once I have it written outside of the website (Word, Notes, etc), I copy it and then go back to the comments page and paste it. Then it can be posted easier. I'm writing my response to you in Notes.
    The reason, it only allows you to post as anonymous is (I think), because you may not be a member of google + user with a google gmail account..... ? There seems to be articles out there about that issue anyway.
    I hope to hear more about your journey with lumbar plexopathy. As well would others I'm sure.

    Thanks, Cindy

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