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Multiple Myeloma Side Effects- Radiation-Induced Lumbosacral Plexopathy

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Radiation-induced lumbosacral plexopathy can result when radiation, used in the treatment of various neoplasms, is directed toward management of abdominal and pelvic malignancies.

I was diagnosed with a blood cancer called Multiple Myeloma (MM) in early 1994.  I sustained a number of multiple myeloma side effects (Radiation-Induced Lumbosacral Plexopathy) caused by aggressive chemotherapy and radiation.

Initially, the MM caused lesions to grow in my sacrum and iliac crest. My oncologist prescribed local radiation as the first of my many treatments to nuke the lesions (in early 1994) and then as palliative therapy in early 1996.

Long story short, I underwent a lot of radiation to my spine from ’94-’96. MM is considered to be incurable to conventional oncologists. Looking back, I’m sure my oncologist wasn’t thinking too much about the long-term damage, the multiple myeloma side effects caused by the high-dose radiation he prescribed for me.

Good news, bad news. The good news is that local radiation nuked by MM quickly and efficiently. The bone pain caused by the lytic lesions subsided within days. The bad news is that the radiation caused scarring or fibrosis. It is the fibrosis that creates the long-term MM side effects.

This radiation caused radiation-induced lumbosacral plexopathy.  Slowly over time, the muscles in my hips and lower body have atrophied and weakened.

It has been 25 years (1996-2021) since my radiation therapy. I can still walk but my balance and leg strength continue to deteriorate. I am fortunate in that my RILP causes no pain. Numbness, yes, but no pain. The occasional “electric shock” type of sensation. Lots of muscle soreness after I exercise.

A friend and fellow Radiation-Induced Lumbosacral Plexopathy survivor Helen launched a Facebook group for us RILP survivors to communicate with each other- click now Facebook RILP Support Group- 

Of all the Facebook groups I belong to the RILP group is one of the best. No judging, flamming, lots of experience, lots of support.

Coping mechanisms for RILP are a combination of physical and mental strategies:

Physical-

  • I rely on ankle-foot orthotics (AFO) to walk-
  • I rely on the use of walking sticks (two)-
  • I use hand controls to drive my car-
  • I exercise my lower body moderately (30 min.), 7 times per week- physical therapy holds off a wheelchair-based life-

Mental-

  • RILP stinks but it could be a lot worse- my pain is manageable-
  • I miss all forms of leg-based sports- all the more reason to get on an elliptical-
  • AFO’s allow me to walk, therefore AFO’s mean independence-
  • I installed and gained certification for a hand-controlled accelerator/brake system- driving is independence as well as walking-
  • I find it emasculating when people open doors for me but they are all well-meaning so I try to understand-

I think the Medscape articles linked below require registration on their site to read the articles so I have cut and pasted the content that I think is relevant to this post.

Have you undergone radiation therapy? Are you worried about multiple myeloma side effects? Are you experiencing collateral damage from your radiation therapy? Please scroll down the page, post a question or comment and I will reply to you ASAP.

Thanks,

David Emerson

  • MM Survivor
  • MM Coach
  • Director PeopleBeatingCancer

Recommended Reading:


Radiation-Induced Lumbosacral Plexopathy

“Pathophysiology

The effects of radiation are correlated with the dose, technique, and concomitant use of chemotherapy. Risk particularly increases with intracavitary radiation.[1] The mechanism may be related to a combination of localized ischemia and subsequent soft-tissue fibrosis due to microvascular insufficiency…However, combined modality therapy may alter predicted tolerability and potential for late effects.”

If I understand the paragraph above, the author is saying that radiation damage can be caused by how much and where you get zapped. Chemo may add to your nerve damage. The radiation causes tissue scarring which cuts off the blood supply to the nerves.

“Radiation-induced lumbosacral plexopathy is particularly noted with uterine, cervical, ovarian, rectal, and testicular cancers, as well as with lymphomas.[2, 3]

Frequency-United States

“Radiation-induced lumbosacral plexopathy is rare (0.3-1.3% of patients treated with radiation). It was noted in 1.3% of patients after abdominal irradiation and in 0.32% of patients after pelvic irradiation.”

o.3-1.3 of how many cancer patients??? If RILP occurs in all the cancers listed above, how many people are we talking about who get this side effect?

Mortality/Morbidity

“Generally, the symptoms of radiation-induced lumbosacral plexopathy progress gradually and with variable rapidity. Clinical manifestations of the condition have appeared 3 months to 22 years after the completion of radiation therapy.[4] Jaeckle and colleagues found that 20% of patients developed moderate or even severe weakness over 6 months.[5] Others were found to have mild weakness at 4-5 years following the onset of neurologic symptoms.”

Again, if I read the above correctly, if you get radiation anywhere near your sacrum you may develop a little or a lot or nerve damage, within months or years after your radiation.

 Radiation-Induced Lumbosacral Plexopathy Treatment & Management

Physical Therapy

Strengthening of lower extremity muscles, use of assistive devices for ambulation (eg, cane, walker), and gait training should be prescribed for patients with weakness and proprioceptive feedback loss. Use of orthotics also may be beneficial in certain individuals with lumbosacral plexopathy.

Occupational Therapy

The patient’s ability to perform activities of daily living (ADL) should be assessed, and appropriate assistive device(s) should be prescribed as needed. In particular, safety with standing transfers may be impaired with more distal involvement. With more proximal involvement, sit-to-stand transfers also may be affected. Strengthening exercises, along with sensory re-education techniques, may be employed.

Medical Issues/Complications

Treatment of post-radiation plexopathy is symptomatic. For issues of pain, consider the use of non-opiate pharmacologic medications, such as tricyclic antidepressants or antiepileptic agents (eg, gabapentin, carbamazepine). The use of steroids and opiates, including methadone, can also be considered.

Other Treatment

Nonpharmacologic measures, such as transcutaneous electrical nerve stimulation (TENS), may be used for pain.

While not studied in patients with radiation-induced lumbosacral plexopathy, hyperbaric oxygen therapy has not led to the slowing or reversal of radiation-induced brachial plexopathy symptoms, although the improvement was noted in the warm sensory threshold.[16]

In a small population, partial recovery of motor function was noted in few patients treated with anticoagulant therapy for a period of 3-6 months.”

 

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Reply
Geysa says 3 years ago

Helloi
In one month after i finished radiation in my groin i was getting down the stairs and i fell on the floor with my knees.
Before the incident i never noticed anything changing in my legs! In 3 week later that i was using a cane and a wheelchair!
I did all kind of tests and today doing a EMG was found that i really have nerves damaged in my hips.
Next it is going to another pelvis MRI.
So they can confirm that was because of the radiation!
So what do tou think?
What is the best treatments to have?
I just finished radiation 7 weeks ago!
Thank you for any help!

Reply
Terry Walsh says 3 years ago

Two months after radiation for uterine cancer (I had a radical hysterectomy followed by 4 months of high dose chemo treatments and then radiation) I went to bed feeling fine and woke up the next morning with a really bad pain in my abdomen where my uterus used to be. It has continued 24/7 for 7 months. They have done CT and PET scans and found nothing so they are telling me it is neuropathy. I am on Gabbapentin and Venlafaxine with 8 Tylenol 3 a day for the pain.

I don’t know what to think as this is a heavy pain and does not have the symptoms of neuropathy. Has anyone else had this and if so what are your doctors doing for you?

Terry

Reply
    David Emerson says 3 years ago

    Hi Terry-

    It looks like you are ahead of me. I was going to say that your experiences are new to me but that you should ask the members of the RILP FB group that I belong to. You have already requested membership. All good.

    Hang in there,

    David Emerson

    Reply
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Misha says 4 years ago

Oh, how I have tears in my eyes! It is so exciting, and I mean this in the best way possible, that I have found this site! I am a 44 y/o female cancer survivor. When I was 21 (1994), I was diagnosed with a tumor on my spine (L4-L5 region). Initially, doctors thought it was benign, but once the neurosurgeon cut, he said it looked malignant. Pathology confirmed the malignancy. I received 32 radiation treatments, but I cannot tell you the dosage. In 1996 I gave birth to a beautiful baby girl and life was great. I never participated in Relay for Life or other “survivor” events, because I just felt like my case was so easy compared to others. I never got sick, lost hair, no complications whatsoever. Fast forward to No ember-December 2014. I was finishing my last semester of nursing school. I started noticing that I was “pulling” myself up the steps more than I was “pushing” with my knees. Well, I was too busy to worry too much about it at the time. I graduated Dec 2014, and in Jan 2015, I started nursing at our local hospital. (Oh, by the way, I’m from Alabama☺️). Once I had time, I went to my GP and explained my symptoms. I told him that my family noticed, when we talk walks, that I seemed to have a slight limp. I couldn’t “feel” myself limping. Any pain I had felt like arthritis in my knees. He took a X-ray of my knees, and sent me to an Orthopedic doc. He took X-rays of my hips and knees. I was diag with bursitis in my right hip and osteoarthritis in both knees. He gave me injections in both and I felt better. At the time, I lived in a single level home, so I didn’t have run-ins with stairs very often. By spring of 2015, I had a noticeable limp that my coworkers acknowledged and I felt like my right ankle was going to roll over with every step. I fell in my yard once. I went back to ortho doc, told him we were about to take a big trip for my daughter’s graduation from HS and he had to get me fixed. Shots again. Went on our trip, where I fell twice. There were two days that I could not join my family on hikes because the trails were very rocky or had stairs, and I knew I would slow them down. That was very hard. Later in 2015, I began to notice that when I flexed my right foot, it would not come straight up; it would rotate to the left and come up. I thought-huh, weird. The next time I saw my Ortho, I showed him this. He eventually sent me back to my neurosurgeon, because he began to feel symptoms were more back related. By this time, I had had MRI and EMG tests done. Neuro doc diagnosed me with Radiation Myelopthy. He said there was nothing we could do, it may stabilize or it may get worse. I asked what is worse, he said I could end up in a wheel chair. Eventually, I had to leave floor nursing, ( because I worked with newborns and I feared dropping or tripping and falling with them!) and do another position. In May of 2016, I began to have really bad back, hip and leg pain-more so on the left hip and leg. By late summer/early fall I was seeing a pain doctor. He referred me to a neurologist in Sept of 2016, but it was May 2017 before I could be seen. Which brings us to present. I walk with a cane when I go out, I can still drive (but I have become a hermit because I can no longer work and feel like no one cares), my balance is not good, especially on non-solid surfaces, the pain is awful most days. I wear a patch 24/7 and have oral meds I take 2-3 times a day. My pain doc says we’ve reached the end of meds he can offer. He is discussing a TENS now. The neuro last week says I have foot drop in left foot. He wants to do MRI w/ & w/o contrast and repeat EMG since it’s been 2y. He thinks I either have a recurrent tumor in my plexus or I have LSRIP.
I know that was long and rambling. But I cannot begin to tell you how enlightening it feels to hear your story through other people. I have felt so alone. I have a wonderful family and support system, don’t get me wrong, but they just don’t understand. Now I have people who do☺️.I definitely plan on joining the FB page. Look for my request. And thank you all for all you are doing to bring this to the forefront!

Reply
    David Emerson says 4 years ago

    Hi Misha-

    Thanks very much for your story. I look forward to talking with you on the RILP FB page. I think you will find the other FB members have similar experiences and can share. Hang in there.

    David Emerson

    Reply
Beth Winstead says 4 years ago

Please some one accept me into the FB group, I asked to be a member in the closed group and I am suffering terribly with pain in my hips, my legs feel like the flesh is tearing from the bone when I walk. I am positive that I have this RILP. I had Vuvlar cancer with radiation 5 days a week for 6 weeks and at the same time I was receiving the 5-FU and cisplatin intravenous chemo doing all 3 at the same time. I was radiated so badly that my girly parts literally melted off, had 3rd degree burns and 2 years after being deemed cancer free the burns came back with open sores and they tell me I have to love this way. I have complained since radiation stopped that my leg pain was excruciating , like the muscle was teraing away from the bone. through this past 6 years post treatments my leg and hip pain is so bad that I went from walking to not being able to ride a bike and now just trying to take the trash out I am in agony. The doctors ignore and have ignored my pleas for help and I am betting by next year I will be in a wheel chair. I just went to my OBGYN/ONC and now she sees cancer cells have spread to my rectom… deep sigh… I will do surgeries but no way no how will i E-V-E-R do targeted radiation treatments again. It has left my body in ruins. I am pleading for help I am now and 6 years post radiation and chemo therapy. Please, some one speak to me about this because I feel I am being tossed to the road side by my doctors and have now become a hermit because its just to painful to move. My neurpathy pain drives me insane. My quality of life is ziltch and I am simply ready to just give up and let God take control PLEASE let me join the facebook group. I need to be with people who understand what this is and what we have to live with because for me. I too feel I have reached the end of the road. At this point I think end of life care would be better than the quality of life care I am getting now 🙁 please some one talk with me? I also have the burning, stinging, tingling pain, cant bear to have anything touch my legs or feet, its driving me crazy. 🙁

Reply
    David Emerson says 4 years ago

    Hi Beth-

    I just now approved your membership to the RILP FB group. I think you will find the members to be experienced in a range of issues. I am
    sorry to read of your issues. Feel free to post any and all questions to the FB group and hang in there.

    David Emerson

    Reply
      Helen says 4 years ago

      Thanks David ..I left Beth a message but she had not responded … good that you knew her history as trying to message people before they join to know a little about them as the group is growing..thanks

      Reply
      Beth Winstead says 4 years ago

      Thank you for letting me join this amazing place surrounded by people who are so knowledgeable and helpful.

      Reply
        David Emerson says 4 years ago

        Hi Beth-

        We all suffer from a peculiar side effect so we are an odd bunch of people in a way. As you will learn if you haven’t already, everyone’s RILP exhibits itself differently. There are lots of different coping methods out there.

        I’m glad that you found us. Hang in there.

        David Emerson

        Reply
      Beth Winstead says 4 years ago

      Thank you David

      Reply
Katherine says 4 years ago

I too suffer from Radiation Induced P lexopathy due to radiation of pelvic area just last year. I have PN in both legs but severe hip leg and back pain. I have not been officially diagnosed – is the pain normal with this after effect?

Reply
    David Emerson says 4 years ago

    Hi Katherine-

    I am sorry to learn of your RILP. Several things. First and foremost I have always believed that I could have healed some or all of my nerve damage if I had undergone HBOT or hyperbaric oxygen therapy. You would need to find a clinic within driving distance and depending on your financial status you will need an MD to prescribe this therapy for you in order for your health insurance to cover it.

    HBOT is an approved therapy for radiation damage due for prostate cancer so your PCP may get your ins. to pay for it as well.

    Re your question about PN. Did you undergo any chemo recently? Other therapies with the radiation? Some RILP survivors have pain, some not. I have little pain but lots of numbness.

    Lastly, please consider joining the closed Facebook group for RILP survivors like us. You will find lots of knowledgable people as members.

    https://www.facebook.com/groups/RadiationInducedLumbarPlexopathy/

    Let me know if you have any other questions.

    David Emerson

    Reply
Curtis says 4 years ago

Hello Everyone …I cant say that radiation of any specific type caused my Lumbar Plexopathy…Started in 2006 with one heck of a back ache and and the Doctor at that time diagnosed the condition as Stenosis(wrong)…followed by 9 years of mis-diagnosis as Motor Neuron disease and whatever the Physicians decided to call it…Finally ended up at the Mayo Clinic in Rochester MN in 2014…They put a name to the wasting of muscle and nerve damage…This seems to me to be one of the Orphan Disease’s which means we are on our own and good luck…I have lost most of the Muscle in my right leg and is now starting in the left leg…I am a cyclist still ride 15 miles 4xs a week…it helps keep me walking and out of the Chair …thus far…I am thinking of trying Stem Cell Injection …have any of you considered this ???..I will say that I agree this disorder is a lonely road…sorry you all have this THING…

Reply
Rich says 5 years ago

Hi David,

Thank you for this blog. I’m glad it exists.

I have not officially been diagnosed with RILP, but I suspect it could be coming.

I had a testicular stage I seminoma, of which I was cured with surgery and radiation in 1997. About 2 years ago, in the fall of 2014, I began noticing some weakness in my lower right leg, followed later by weakness in my upper left leg. This came and went for a while, then came to stay, and has progressed ever since. I can still walk but it has become more difficult over time.

I have what even my doctor at Duke University says are all the classic signs and symptoms of RILP: radiation to the pelvic area, progressive leg weakness that’s bilateral and asymmetrical, MRIs showing enhanced lesions in the cauda equina, EMGs showing nerve signal disturbances, elevated protein but no malignant cells in lumbar puncture. All the classic signs EXCEPT signal changes in the spinal cord or scarring/fibrosis.

A laminectomy/biopsy, as well as a spinal angiogram, showed that the lesions appear to be what the pathologists think are hemangiomas. However, I’m told that hemangiomas typically cause a lot of pain and a faster progression of symptoms, and the diffuse nature of the lesions has the docs puzzled, so they want me to consider a second biopsy.

Every medical pro I’ve seen keeps telling me that this doesn’t look like a radiation-induced process, but I remain skeptical because of the clinical presentation.

I’m wondering if you have any thoughts on this, or if you have run across anyone with a similar story. I am curious to check out the FB group but I didn’t want to intrude without an official diagnosis.

Sorry for the long-winded message. Thank you for your time.

Reply
    David Emerson says 5 years ago

    Hi Rich-

    I am no expert buy your symptoms and past situation sound similar to mine. I encourage you to click the link below and ask to join the RILP FB group. This group has lots of interesting cases. You and I can still walk so we should thank our lucky stars Some of the members cannot.

    Join the group and ask any and all questions. Good luck.

    https://www.facebook.com/groups/RadiationInducedLumbarPlexopathy/

    David Emerson

    Reply
Heather says 5 years ago

I am the Heather that posted on David’s Beating Cancer site back in April 2015.
I am not sure what I should write now as the aim of this site is to be positive and share useful information. My story is, radiotherapy for endometrial cancer in 1988, now nearly 28 years ago, onset of sensory loss, leg weakness and lymphoedema within next couple of years, ongoing therapies and rehabilitation for most of these years. I could walk(though with significant difficulty) until August 2015 when I broke my leg. I have not rehabilitated from the inactivity and damage I suffered then although my current major problem is probably the result of the awquard way I have been getting around for years. My left knee is so damaged and misplaced that I have been told a knee replacement is not possible and if it were I could not rehabilitate because of the lack of quad and other muscle in my leg.
I can still stand briefly,(though the pain is excruciating) and I can move short distances with a walker. Needless to say my life has contracted and I am no longer able to do much for myself, though I can still manage my own personal care.
On the positive side for other people to know, I have walked for nearly 28 years after my treatment and I feel I would still be walking if I had not damaged my knee so badly, so I want to recommend that all of you who can walk, try to maintain as normal a gait as possible. Much of my damage has come from “hyperextending” as I walk, which has stretched all the ligaments at the back of my knee. Of course I don’t know how I could have prevented this happening, I have been so determined to keep walking and getting up steps etc that I developed a very individual way of walking which served me quite well until my last leg break when the combination of reconditioning from inactivity, bone damage, other falls etc have resulted in my current situation. I really am still unclear what has actually caused my knee problems, I think it is the combination of many factors associated with my plexopathy.
I know there are positives in any situation, there are always those worse off, and I know I was very fortunate to walk for so long after my radiotherapy. The pain I am now in with the combination of constant nerve and bone pain makes life quite challenging.
I would also like to encourage everyone to do as much targeted exercise as possible, I have done hydrotherapy and targeted exercise over all these past twenty plus years. I am now doing Pilates exercise to keep the strength in my arms, arm strength is essential for those with leg weakness, without my arms I would be even more dependent on others than I am now.
My best wishes to all of David’s readers,what a generous soul he is to create this page.

Reply
    David Emerson says 5 years ago

    thanks for posting Heather- I agree with everything you say-

    David

    Reply
Lynn says 5 years ago

Add me to your list of cancer survivors with RILP. It’s encouraging to know that others have experienced what I have. I was treated 20 years ago for cervical cancer with surgery, chemo, internal and external radiation therapy. About 10 years ago my neuropathic symptoms began in my legs and slowly progressed.I have an AFO for the left leg and can only tolerate walking short distances with a cane or rollator. For long distance, I use a mobility scooter. Last week we installed a stair lift to the upstairs of our house as I could no longer make it up unassisted.

This complication stinks ! I had a very active life. But how can I complain when the treatment saved my life? Medical professionals do need to be more aware of this outcome and develop methods to minimize it.

I am happy to have found this group tof share with.

Reply
    David Emerson says 5 years ago

    Hi Lynn-

    Thanks very much for posting here. Your experience sounds similar to mine as well as several of the other FB group members. Most of us agree with you that our radiation treatments were necessary even knowing what we know now. My ongoing effort will be to research and write about some sort of evidence-based therapies to prevent or minimize RILP.

    For instance, I’m pretty sure that hyperbaric oxygen therapy IMMEDIATELY following radiation would help. Further, I have found a few studies that cite specific supplements to enhance radiation but I need more specifics. When I read the word “enhance” I think that radiation oncologists should then know of reduce the dose of radiation.

    Thanks again,

    David Emerson

    Reply
Jane Pettersen says 5 years ago

Hi David!

I too suffer from progressive RILP which started approx 10 years after my internal/external treatments for cervical cancer(2001). Finding help has been exhausting, expensive, and frustrating. I was lucky to receive 30 HBT within 6 months for abdominal pain, which in hindsite, may have helped in the long run. I have seen a well respected neurologist and even consulted an equally respected neurosurgeon and the best advice that they could give was “Dont ever give up, exercise moderatly daily, eat well, and keep a positive attitude” The whole ironic thing is that I am a radiologic/CT/MR technologist, but I am now considering applying for disability. I am so thankful I have found others for moral support.

Reply
    David Emerson says 5 years ago

    Hi Jane-

    I don’t think that there are any knowledgable physicians who know much about RILP. We are the best we have.

    If you didn’t experience RILP for 10 years after your radiation treatments I think you did well. I believe that anyone who undergos radiation to that area of the body should follow with HBO Therapy immediately.

    For what it is worth I agree with the advice you have been given… exercise frequently/moderately/daily, etc. Most importantly, I would encourage you to apply for disability. I did in 2000. It can take awhile and it is not a lot of money but it has helped me support my wife and son. A bit.

    If I read your post correctly you have been experiencing progressive RILP for the past five years? Can you still drive? Do you wear AFO’s?

    Don’t mean to be nosey. Just curious. I can walk a bit but only with the help of walking sticks. I can drive only with AFO’s.

    thanks,

    David Emerson

    Reply
Stefanie Kuett says 5 years ago

Yesterday was the first time ever I read about RILP even though I’m obviously suffering from RILP since about 2006!
I have a feeling I am the only person in Germany with these problems as all physicians appear totally helpless with regard to my syptoms.
I had radiation and chemotherapy in 2003 for rectal cancer and about 3 years later my problems gradually started.
Since that time I tried (and am still trying) all kinds of treatments in the naturopathy department mainly because regular doctors have no plan what to do besides offering psychotropic drugs: homeopathy, kinesiology, ayurveda, zen meditation, yoga – you name it, I tried it all. I have weekly sessions in physiotherapy and osteopathy, I practice on my treadmill and I try all kinds of other devices like black roll.
I am constantly searching the internet for clues and for companions in misfortune and now finally today I found your blog.
I can still walk without cane or any other devices (I lean on my husband…), I can climb the stairs in our house, I can go shopping for our daily needs and I can drive my car, but it is very tiresome and exhausting to take only the shortest walk. I used to do a lot of hiking and now the onIy exercise I can do is working in my garden crawling around on all fours because getting up is so difficult.
If I should give any advice with regard to at least temporary improvement I suggest trying osteopathy. After these weekly treatments my gait improves considerably for at least that day and I feel much stronger.
And another thing I strongly recommend is yoga. There are so many exercises you can do sitting down and the stretching helps tremendously when my legs start to prickle.

Reply
    David Emerson says 5 years ago

    Hi Stephanie-

    You raise several topics that I will try to address. First and foremost, I am sorry to read that you have RILP. Your experience sounds similar to mine. I think my RILP is about 10 years ahead of yours.

    RE the issue of feeling alone, I think that RILP is both long term and relatively rare for cancer survivors. Therefore this side effect is not well understood by oncologists.

    I do continue to try all sorts of treatments. Both to heal or slow my nerve damage as well as remain cancer free. Our fellow RILP survivors may have more to say about therapies. What is black roll?

    RE finding others. I think you would enjoy talking to other RILP patients. I’m sure they would enjoy talking with you. See the link below.

    I can walk a bit but I must use a pair of walking sticks. Also, I must wear AFO’s (ankle foot orthotics) in order to drive. I don’t garden but I do find crawling to be more effective in certain situations. Climbing stairs for example.

    Re yoga. I stretch pretty much all day for different reasons. Also, I exercise, moderately, six days a week. I alternate between moderate weight lifting and cardio on an elliptical.

    David Emerson

    Here is a link to a closed Facebook group about RILP
    https://www.facebook.com/groups/RadiationInducedLumbarPlexopathy/

    Reply
      Stefanie Kuett says 5 years ago

      Hi David,

      “Blackroll” is a training device for massaging and stimulating muscle groups and relaxing the fascia (see http://www.blackroll.de and also on youtube). Especially when my legs are pestering me in the evening I feel it is quite relaxing to use this little roll.
      I can really recommend the use.
      Another thing I find helpful for improving my gait and my balance is training with “Smovey Rings” (www.smovey.com).
      Both training devices are very small, easy to use and really helpful.

      Regards, Stefanie

      Reply
        David Emerson says 5 years ago

        Stefanie-

        Thanks very much for this information.

        David

        Reply
        Helen says 5 years ago

        Hi Stefanie.. I too have RILP and it has helped to have others to connect with via the Facebook group and I Write a blog too ..there is a link in the above comments by… Helen.. Comparing notes with others on what gelps etc .. I thought I was the only person in Australia with this but on the internet there are more than Drs would have you believe … The Black Ball sounds interesting that is a new one to me … I have probably tried most other things too … I hope you may join us .lHelen

        Reply
jocuricumario says 5 years ago

Mario Badescu hudpleje tilbyder et omfattende udvalg af produkter til alle dine behov.

Reply
    David Emerson says 5 years ago

    Hi Jocu…-

    I am sorry but I can’t read what you have written.

    David

    Reply
Facebook Group for RILP – Life in a Wheelchair says 5 years ago

[…] Facebook group you just need a Facebook login. I am also sharing the running of this group with David of People Beating Cancer, he also has RILP. Lets see if we can make a difference together… Feel free to share with […]

Reply
Helen Bonynge says 5 years ago

Hi David i could certainly do that infact I probably have a lot of the information and now the holidays are over I need to put it together.. Can you email me as do not want to put other people info as a comment and I cannot find an email address for you. … I had 50 gy of radiation to pelvis but this is info some may not have … I also note that if you put Radiation Induced Lumbar Plexopathy as an internet search there are more articles now dated 2015 of case studies… This is one http://gynoncrp.biomedcentral.com/articles/10.1186/s40661-015-0019-9. There are others but some are just abstracts and you have to buy the full article. I sent an email to the Dr who initiated this one … I note they say patients stabalize but I wonder if they go back a few years later if this is the case… Look forward to hearing from you ..

Reply
    David Emerson says 5 years ago

    Hi Helen-

    I emailed my reply to you a minute ago.

    David

    Reply
      Heather says 5 years ago

      Hello again David, I can see there has been quite a lot of activity on this site since I last looked. I am the Heather from Australia that posted on this site in April 2015.
      My current story is that I have deteriorated quite a deal in past few months and though still walking, I am using two crutches now. A relatively new knee problem has complicated my mobility difficulties so if I can get some appropriate help with that issue, I may be able to walk better again.
      Over the past months my nerve pain, numbness, pins and needles, muscle weakness have become more severe and debilitating. For the past twenty years I have done warm water exercise either once or twice a week and I am so grateful for this opportunity and feel it has contributed to my still being able to walk 27 years post radiation. These water exercise groups are not available over school holiday periods so I will be very grateful when my now once a week session recommences next week.
      I will now look regularly at this site to stay in touch.
      My best wishes to all who visit this site and thank-you David for creating this site and persisting with its maintenance over the years despite the months without posts.
      Heather

      Reply
        David Emerson says 5 years ago

        Hi Heather-

        I’m glad that you posted again. Helen (above) recently created and launched a RILP Facebook closed group. I have listed the page link below.

        I think your story and input would be invaluable to other RILP patients. The FB page is relatively new so there are only a few members at this point. But the more the merrier…

        You would be surprised how much you already know and have learned that may be valuable to others who join the group. We will compare crutches versus walking sticks, different exercises, therapies, supplements, etc.

        thanks

        David Emerson

        https://www.facebook.com/groups/RadiationInducedLumbarPlexopathy/

        Reply
          Helen says 5 years ago

          We are up and running!!!

          Reply
          David Emerson says 5 years ago

          excellent- already sent RILP survivor to the page- let’s see if Heather signs up-

          D

          Reply
Helen says 5 years ago

I am the Helen that Cathy referres to and this is my blog link https://lifeinawheelchairblog.wordpress.com/about/
I have connected with quite a few people in England, the US and Australia.. All except two have had cancer treatment, the other two have no known cause and one of those did heal over a three year period. Only one ither is in a wheelchair like me.. Others are at various stages but we all have a very similar story of the progression of RILP.. My email is helenbrd@bigpond.net.au if anyone would like to connect… Kathy i am quite sure there are a lot of us out there as treatments and survival rates increase… Neil i had read this could happen from 1-30 years later it is scary that this can happen years later… Drs do need to take note and provide infomation and support… I find it so hard to belive I am paralysed all these years later… I hope non of you reach this stage but for me the damage would not stop, i can neither weight bear ir make any movement beyond a little toe movement… If I had a spinal injury there would be so much help and support but for this it is an ongoing fight for recognition… Kathy keep pushing those cancer groups etc for acknowledgement.. I will back you all the way… From Helen

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    David Emerson says 5 years ago

    Hi Helen-

    Thanks very much for this information. I would like to increase awareness of RILP by researching and blogging about those issues that you consider important to this community. What are those issues that you would like to learn more about? Therapies, if any, for RILP survivors to pursue in an effort to possibly heal our nerve damage? Or perhaps nerve stimulating nutrition? (if there is such a thing?

    I’m trying to figure out what PeopleBeatingCancer can do to inform and educate RILP survivors.

    thanks

    David Emerson

    Reply
      Helen says 5 years ago

      I think in some cases it is recognising the symptoms and just building awareness of the possibility that people have RILP… It takes so long to diagnose that it is to late for therapies to maybe work.. It took 5 years from very mild symptoms to Paralysis for me … Maybe early stage intervention or as you have said post radiation HBOT could help and save the damage… The problem is that no one knows this is a possibility until it is to late.. I am in contact with a doctor in France who is running a trial with a mix of drugs also others have tried to use Warfarin but again I think it needs to come early before the damage to blood vessels that then damages the nerves… Diet ??? Reading on muscle and nerve regeneration there appears to be certain foods but more geared to those with MS.. Therapy helps to keep muscles strong but I was doing intensive therapy for months and I walked everyday but it did not stop the degeneration… So I am not sure what can help people??? Communicating with others I am trying to find what helps … But it is like trying to hold the sea back!!! And we will see many more cases over the next few years.. Would be very glad of your support in this maybe people you know have ideas..

      Reply
        David Emerson says 5 years ago

        Hi Helen-

        I agree that awareness, possible therapies, etc. will take awhile. But I want to start.

        In a previous email you mentioned communicating with other RILP survivors. Many of whom are cancer survivors. I would like to try to learn about the possible causes of RILP. Of course we all believe that local radiation to our spine is the cause. But I want to organize patient feedback. I would like to ask RILP survivors to try to explain their radiation therapy, where, how much, when, etc.

        Are you able to reach out to the RILP survivors that you spoke of? If so, perhaps they will contact me (peoplebeatingcancer) in order for us to communicate about RILP.

        If I can get even a small consensus I will be able to post information about RILP and possible therapies such as HBOT for cancer patients to read.

        What do you think?

        thanks

        David

        Reply
Kathy Sayer says 5 years ago

Hi David,

So good to read your posts – agree with all your observations. I have RILP from radiotherapy to pelvis in 1996. I can now see how insidious the slow deterioration has been, making me blame myself for laziness and thinking I had fatigue syndrome. Have just finished a course of HBOT – no effect other than on my bank balance. Today I am excited to find that there is a physio clinic not far from me which has an anti- gravity treadmill so I will be booking some sessions ASAP. I know it won’t be a miracle cure but At least there will be some fun along the way! More info on AlterG website.
I have also been contacting a few organisations for cancer survivors here in the UK to persuade them to add information about RILP to their websites. They do at last seem to be addressing the issue of radiation damage late effects but usually only to mention gastrointestinal problems. It’s great to be able to point to sites like yours and Helen’s to back me up, as they too often try to tell me that I am the only person who has ever presented with this!
May I ask whether you use a wheelchair? I have yet to address this side of things myself and find it a bit mind boggling.
Keep up the great work you are doing,
Kathy

Reply
    David Emerson says 5 years ago

    Hi Kathy-

    I am sorry to learn of your RILP but happy that you found PBC. Our cases sound similar. As 20+ year cancer survivors we are both working to manage our nerve damage. No, I do not use a wheelchair. I need ankle-foot orthotics to walk/drive outside of my house. And I leave handprints throughout my house as my walk is shaky. I can climb stairs slowly but I look forward to the day when my 17 year old son goes to college and my wife and I can move to an apt. without steps. You imply that you too are not in a wheelchair? Frankly, I fear what a wheelchair will mean to my legs long term.

    I hope to see the day when HBOT is a standard therapy for almost anyone who undergoes radiation therapy. Clearly radiation causes damage that worsens over time. You and I found HBOT too late to make any real difference I think.

    You mention “Helen’s” website. Is Helen a cancer survivor who suffers from RILP as well? What is the name of her website?

    Thank you for reaching out. Hang in there.

    David Emerson

    Reply
    Neil says 5 years ago

    Hello Kathy

    You can them that the UK has at least one other sufferer – me! In my case, it goes back to treatment for testicular cancer in 1976.

    How variable this condition is. In my case, rather like you, it is possible to look back maybe 8 years or so (yes, that makes it around 33 years after treatment – perhaps some sort of a record?) and see some early signs. Serious leg cramping, twitching in the legs and a change to my gait, that sort of thing. Move forward to a couple of years ago, and I started falling over rather too frequently and began to have trouble climbing even small steps and slopes. So it was off to the neurology department and, ultimately, a conclusion that I most probably do have RILP.

    Meanwhile, I now always use a stick or a rollator outside, and have a scooter for more adventurous distances. My legs are apt to buckle at the slightest of hints, and getting up from even a raised chairs requires total effort from my upper body and arms. I exercise daily to maintain muscle function and mass, but tire so very quickly that it is rarely possible to complete them.

    Whatever, it’s all manageable – so far – and it could be so much worse. It’s not exactly the most painful condition that I could have, and I probably wouldn’t be here now had I not had the treatement. Two close contemporaries were treated at much the same time, and neither of them are. Likewise, and thinking more recently now, a close friend was referred to the same neurologist at around the same time, about 18 months ago now. Unlike me, he did have the suspected Motor Neurone Disease (ALS). Unlike him, I’m still here.

    So, tough to live with? Certainly! Hard to convey how and just how much it affects me, even to supposed health professionals? Almost impossible! And really, really tough for my nearest and dearest…

    But, hey, I still here, aren’t I? And I’ve always enjoyed a challenge….

    Above all else, keep smiling!

    Neil

    Reply
      David Emerson says 5 years ago

      Neil-

      Thanks very much for your comments. I am sorry to read of your RILP but glad to read that it took 33 years to take hold.

      David Emerson

      Reply
      Helen says 5 years ago

      Hi Neil.. I replied to your email but it bounced back after Five days they said
      Most likely there is a network problem that prevented delivery, but
      it is also possible that the computer is turned off, or does not
      have a mail system running right now… Have sent again plus another so hope you get them or see this .. Helen

      Reply
        David Emerson says 5 years ago

        Hi Helen-

        Just replying to let you know that I received this email.

        David

        Reply
          Helen says 5 years ago

          I am hoping Neil comes back to this page and can see there is a problem with his email… May have to write him a letter as I do have an address for him as well!! Will be in touch soon re group have had some responses..

          Reply
          David Emerson says 5 years ago

          Hi Helen-

          I just wrote a blog post about chemotherapy induced peripheral neuropathy CIPN. I have both side effects. The study that I excerpted estimated that 45% of cancer patients have this side effect. This is a big number.

          Do you have any interest in launching a forum for nerve damage that combines both therapies in an interest to get the conversation moving? Or would you like to keep each side effect separate?

          http://peoplebeatingcancer.org/?s=chemotherapy+induced+peripheral+neu&submit=

          Let me know. Thanks.

          David

          Reply
Helen says 5 years ago

Just found an article that I have not seen before .. Can download as PDF looks interesting with more straight forward explanations http://www.sciencedirect.com/science/article/pii/S0167814012004628

Reply
    David Emerson says 5 years ago

    Hi Helen-

    Thanks for the article.

    David

    Reply
Helen says 5 years ago

I have not found any others so far It is a pity that people do not return to the ACS sites to stay connected. I have left e recent message but no news from anyone so far. Any info on RILP is so limited. I will reach out again to the four ladies I had emails for. One like me is in a wheelchair the others I hope so very much have not progressed to that stage .

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Helen Bonynge says 5 years ago

I am so excited to have found this today ..Helen

Reply
Helen Binynge says 5 years ago

I have radiation induced lumbar Plexopathy from radiation for uterine cancer 14 years ago .. 2010 I had the first symptoms … Today my legs are paralysed since March 2015 .. I have started a blog in the hope of connecting with others and like you to build awareness of this late stage side effect of which there is so little information.. I too have read the ines you link to.. This is a link to my blog that I just started https://lifeinawheelchairblog.wordpress.com
Would love to hear from anyone who has RILP as feel very alone with this .. I live in Australia
Cheers Helen

Reply
    David Emerson says 5 years ago

    Hi Helen-

    Thanks for reaching out. I am sorry to read of your RILP. But I am convinced that blogging, helping others, learning from others is the way to go. I went to your blog just now. Great. Hang in there and keep in touch.

    Thanks

    David Emerson

    Reply
      Helen says 5 years ago

      I will stay in touch it us so important to connect with others … Happy for you to email any updates on RILP that you may come across.. Or any if your own experience.. I have linked to your blog… You have had quite some journey yourself and glad to here that treatment has been a success for you .. My neurologist said the oxygen therapy did not help …i tried asprin for about six months but made no difference so I just use physio to keep the muscles strong .. And mobile ..

      Reply
        David Emerson says 5 years ago

        Hi Helen-

        My experience with HBOT was similar. I underwent weekly one hour sessions for six months. My legs felt noticeably stronger after each session. Unfortunately I did not experience any long term gain in leg strength. I too have settled on frequent, moderate exercise in hopes of remaining as strong as possible. For the record I encourage anyone about to undergo radiation therapy to any region near the sacrum (tail bone) to undergo HBOT as soon as possible post radiation.

        I have read studies and personal accounts from prostate cancer survivors who what reduced pain and enhanced muscle strength in the region through HBOT.

        My personal opinion is that cancer survivors like the two of us would have reduced scarring and nerve damage if we had undergone HBOT within, days or weeks of our radiation. Though 20/20 hindsight is easy…

        thanks and let’s keep in touch.

        David Emerson

        Reply
          Helen says 5 years ago

          I guess this is the message we need to get through to,people … Early intervention. One lady in America was taking an anticoagulent earliy in her symptoms and she felt some improvement … Will have to contact her and find out her progress… The American Cancer Socuety forum has some threads or RILP and late stagevsude effects but people do not access them often. Must rybto reconnect again to see where people are at .. Helen

          Reply
          David Emerson says 5 years ago

          Are there other RILP forums or chat groups that you know of in addition to the ACS forum that you mention?

          thanks

          David

          Reply
Heather says 6 years ago

I thought I would be first to post a comment. I was searching the web for anything that could help me as I am now beaching quite disabled and with that increasingly depressed as I feel useless and worthless. My story is that 27 years ago I had endometrial cancer and treated with extensive surgery and internal and external radiotherapy. Soon after I noticed sensory loss in my legs and later progressive weakness. I can still walk with difficulties but the constant neuropathic pain (burning, pins and needles) and sensory loss in my legs and feet makes movement very difficult.
Over the years I have tried many possible treatments but now I feel I have reached the end of the road for me. I wish I could write something more encouraging in order to help others who may read this but this is how I feel. I suppose I should be very grateful I have walked for so long when I know others have lost their mobility earlier than me.
This condition is a lonely road as I have never known anyone else with the condition and I don’t have any confidence in my medical practitioners as they have nothing to offer and this must make it difficult for anyone who wants to heal and bring alleviation of suffering.

Reply
    David Emerson says 6 years ago

    Hi Heather-

    Thanks for posting. I too have extensive nerve damage. I don’t have much faith in oncs regarding my nerve damage or other side effects. I decided a while ago that no one contacted me about nerve damage because cancer survivors don’t live long enough to experience our degree of side effect…

    What I hoped to do by blogging about nerve damage was to educate others beginning our side effect journey in hopes of improving their outcome. For instance, I too have tried many therapies that I don’t think have helped much (nerve stim with a “tens” unit or B12, ALA) but I do find my ankle/foot orthotics to be helpful. As for the mind-body side of living with nerve damage, I think moderate exercise helps me live with this disability.

    As you have identified, it is not easy to live as we do. However, looking at things differently, you are doing well considering you are a 27 year cancer survivor. I am doing well as a 22 year cancer survivor.

    I would like to add your comments to my blog posts about nerve damage. What therapies have you tried (even if they didn’t work for you?)

    1) Alpha lipoic acid
    2) nerve stimulation- tens therapy
    3) consistent moderate exercise or physical therapy

    4) what therapies have you tried?

    thanks and let me know-

    David Emerson

    Reply
    Helen Binynge says 5 years ago

    Heather you are not alone I am the same as you and can no longer walk.. I am writing a blog inthe hope of connecting with others and would love to hear from you
    https://lifeinawheelchairblog.wordpress.com It is so rare that I know no one else Helen

    Reply
    alice edelman says 4 years ago

    Hi Heather, I just came across this site with David and read your comment. Well, I am a survivor of endometrial cancer having had radium implants, followed by radiation and surgery in 1975 and in 1999 I had beginning foot drop so went to a foot clinic and referred to an orthotic for an AFO which I have been wearing since then. So my beginning of RILP effects probably is 47 years. Has not been an easy time trying to get answers and treatment recommendations, believe me. And you probably know from your experience. Anyway, I am on the RILP website membership so we can keep in touch there. Would like to be your friend. Alice Edelman

    Reply
      David Emerson says 4 years ago

      Thanks Alice-

      Reply
    Jill says 3 years ago

    I had Stage 3 Colorectal Cancer tx 18 years ago. 5 years ago, I began to notice numbness below both knees. Peripheral Neuropathy. Complete numbness. Over the last 2 years, my right hip has become almost completely useless and I wear AFO’s on both legs now for foot drop. I an beginning to feel as though I am losing my independence and that is the last thing I want to do. I was always the one “doing for others: and have found lately that I can do for anyone anymore, including myself, I also had 5 weeks of 24 hr a day chemo-5FU w/Leukovorin, as well as daily radiation for those same 5 weeks. I then had a lower anterior resection and then 4 more months of adjunctive chemo. The hip weakness is in my right hip as I have been told that the nerves are damaged beyond repair. However, I was also advised that the weakness would reach a plateau after a 2 year max and it is only getting worse. could this be MS instead? I feel hopeless and don’t know where to turn for help. Please, if someone can offer advice, I would be most appreciative for anything that might give me hope.

    Reply
      David Emerson says 3 years ago

      Hi Jill,

      I am sorry to learn of your RILP. Interestingly, our experiences sound very similar. Our cancers are different but all else sounds the same. A couple of things. I believe our RILP is progressive meaning it will not stop. Ever. Though I think we can slow or maybe improve some muscle function. In other words, as my hamstrings weaken I use my quad muscles more.

      Secondly, yes, we are slowly losing our independence. I don’t like it either but at this stage my goal is to stay out of a wheelchair. That would be real dependence so I will accept people opening doors for me…

      Lastly, I recommend joining and asking questions to the closed FB group called Radiation Induced Lumbo Sacral Plexopathy– knowledgable group at all stages of RILP.

      Let me know if you have any questions.

      David Emerson

      Reply
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