New Articles on RILP

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Since first being diagnosed with Radiation Induced Lumbar Plexopathy (RILP) I have made regular “trips” to the internet, looking for any new information. For a long time all that popped up were the same old things, and not very many of those, not patient orientated but using lots of medical jargon!! Lately however I have noticed more and different articles, including patient case studies, at last. Maybe the medical profession is starting to notice that there is a problem out there post radiation. Many of the articles just give an abstract and you have to buy or have access to get the full article. However the first one that I will link to was for Open use so the whole of it is available, I wish they were all like this!!
http://gynoncrp.biomedcentral.com/articles/10.1186/s40661-015-0019-9
This article is about a lady who was treated for Cervical Cancer and returns some years later with weakness in her legs and nerve pain..

By Imane BourhafourEmail authorView ORCID ID profile, Meriem Benoulaid, Hanane El Kacemi, Sanae El Majjaoui, Tayeb Kebdani and Noureddine Benjaafar
Gynecologic Oncology Research and Practice20152:12
DOI: 10.1186/s40661-015-0019-9© Bourhafour et al. 2015
Received: 17 July 2015Accepted: 11 November 2015

Here are some excerpts that I found interesting…
“Radiation induced Lumbosacral plexophaty (RILP) is a rare but severe complication that has a considerable impact on quality of life. Its occurrence is rare but increasing with improved long-term cancer survival. This entity commonly results in different degrees of sensory and motor deficits. The pathophysiological mechanisms are not yet fully understood. Diagnosis of radiation myelopathy in women with gynecologic malignancies may increase with the use of concomitant chemo-radiation. This report describes the effect of this combination therapy in a 64-year-old woman with cervical carcinoma.”

Some of you will relate to these symptoms
” Nine years after completion of treatment, the patient was readmitted due to progressive, bilateral leg pain and lower extremity weakness, greater on the left side, leaving her unable to walk, with sensory changes over the lateral legs and feet, her bladder and rectal functions remained intact.”

Please read the entire article but the conclusion is
“RILP is a rare but devastating complication that has a considerable impact on quality of life in patients considered to be cured of their cervical cancer,(or other cancers) Improved understanding and earlier diagnosis of this complication, before the lesions become progressive and irreversible, is particularly important, and more surveillance will be needed to assess the true incidence of this rare complication, its evolution and the best treatment to relieve it.”

So far there is yet to be any treatment that appears satisfactory, the use of Oxygen therapy has been suggested but there have been no positive results, but a lot of money spent. Warfarin has been suggested and may be this stabilises the progress but at this stage no cure and in some it did not stabilise. In this article there in a mention of a trial taking place in France.. I am in contact with the Dr who is doing this trial and I await more information from her. When I have all the details I will write a post and hopefully find some more articles to link to the trial…I have asked if the Dr could send some of the results or articles about the trial..

This is a case study of a man treated for Bowel Cancer, 30 years later he experienced leg weakness
http://www.neurology-asia.org/articles/neuroasia-2015-20(3)-297.pdf

This is a lady five years after cervical cancer
http://www.temple.edu/medicine/departments_centers/clinical_departments/documents/PMR_case6.pdf

There are many more on the internet if you put in a search request “Radiation Induced Lumbar Plexopathy case studies.” For those of you having problems with Drs believing your diagnosis, or telling you it is so rare they have not seen it then these articles could be useful.. If you find any interesting items please add them to the comments section.

There is also a thought of creating a private group probably via Facebook if anyone is interested.. Please let me know via the comments too.. The more we share information the better..

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Thanks


6 thoughts on “New Articles on RILP

  1. There is Dr. Stubblefield, previously at Memorial Sloan Kettering, now at Kessler Rehab in NJ who has done studies and sees patients with this type of condition. Not only does he help diagnose it but works well with local physician helping them to see this as “real”. A simple search will get you his contract information.

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