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.med.nyu.edu/pmr/residency/resources/96-UE%20pain%20in%20breast%20CA.pdf Dr Michael D. Stubblefield 2006
http://www.mskcc.org/sites/www.mskcc.org/files/node/19501/documents/plenary-radiation-fibrosis-syndrome-michael-stubblefield-md.pdf Dr Michael D. Stubblefield 2013
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”
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.stepup-speakout.org/Radiation_Induced_Brachial_plexopathy.htm Stepup-speakout Organization
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.lymphedemablog.com/2011/01/28/radiation-induced-brachial-plexopathy-and-lymphedema/ Jan 28, 2011
Joachim Zuther, Lymphedema Specialist
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”
