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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 my multiple myeloma 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. Helps me manage my multiple myeloma side effects.
Coping mechanisms for RILP are a combination of physical and mental strategies:
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.
The effects of radiation are correlated with the dose, technique, and concomitant use of chemotherapy. Risk particularly increases with intracavitary radiation. 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 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?
“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. Jaeckle and colleagues found that 20% of patients developed moderate or even severe weakness over 6 months. 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.
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.
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.
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.
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.
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.”