Radiation Late Effect Plexopathy

zizzi said:

Support group?
I was wondering if any of you might want to form a small support group for us plexopathy diagnosed cancer survivors. Nothing obligitory. Just a few friends to e-mail with woes and complaints when an ear is needed. This is a torturous and lonely raod and only we know what we go through daily.
I'm 59 this Sunday, female, no career, crafty. (not usually so sociable)

getrealbar, inlaw85, mickey25, anyone????? What do you say? E-mail me if you need a friend to talk to about this once in a while, I know I sure could use one.

bergie@pcisys.net

General information on nerve damage from chemo drugs and rads
I have posted about this before and with my chemobrain I will probably be repeating myself but bear with me. New people might like to see a new post on this.

I have been a cancer survivor for well over 2 decades now, dang I'm old, lol. Anywho I have a ton of after effects for treatments so long ago and note that MY TREATMENTS WERE LONG AGO but today patients still suffer with less time in survival than I so I think my posting could be of some benefit I hope to everyone with pain issues after treatments.

Just recently I finally got up the nerve to do a test I found out about from this site, it's called a nerve conduction test. A neurologist does this type of testing so you would have to be referred to one for assessment and possibly the test istself if he/she feels you might have nerve damage - history of chemo drugs/rads no doubt will get you the test if you show signs of tingling in your extremeties mainly but any kind of numbness, tingling or pain even in your back.

The test isn't the worst to go through. They put some mild electrical charges through various parts of your body where you are reporting issues, just the ones behind my knee were a little more irritating but generally it wasn't a big deal. They can also do other testing for muscle weakness and issues where they insert a kind of an acupuncture needle where the complaints are and that doesn't hurt much at all, at least mine didn't cause I was numb there anywho, sheesh, lol.

The neurologist, here anyways, gives you immediate feedback as he sees the results instantly on the machines that are monitoring the responses you have or don't have to the shocks. My diagnosis was nerve damage doubtlessly caused by chemo drugs. and perhaps rads. Rads were sited as possible causes of my lower back disc degenerative disease which I thought was my arthritis and it's part of it but the other part they feel were the chemo drugs - some of them they say can do this kind of damage. Vincristine, a chemo drug, that I had was notorious for causing nerve damage, not sure if they still use it or not. My guess is that if they do still use it they probably monitor it more or give maybe lower doses if they can. Other chemo drugs can cause the damage too but I don't remember what they were because I have chemobrain from the treatments too so see how that works? lol.

I also had to have a CT of my back, yet again - I glow in the dark after two plus decades of CTs. That was BEFORE they realized they let off rads. Sheeesh.

Now I also see another neurologist about memory and confusion issues and after a CT of my head and some memory testing and exam have concluded - yup - chemo and perhaps rad damage from certain chemo drugs and rads to the head. Duh, no kidding. lol.

There are things people have tried to get relief from nerve damage and there is a list on this site somewhere but ask the neurologist and research the site here and in other reputable sites online.

Above all, trust your gut. If you think you have a medical issue then seek out help and if the first specialist shrugs you off find another one who doesn't. I knew for instance I had fibromyalgia years before it was finally diagnosed - by a rheumatologist is the way to go there, at least in Canada that's who does fibro. diagnosing, and although some dismissed my pain I finally found one who didn't. Don't give up. I personally think fibromyalgia is linkied to all this nerve damage from treatments too but hey that might just be me. It makes too much sense.

It's a challenge to stay on top of all of our after effects, which ones are just aging and which aren't. As my neurologist said about my chemo brain 'we are seeing long term survivors with this kind of issue with memory and confusion from treatments'. Wow that's nice to hear that kind of validation, even if the info does suck, rather than being told 'um, have you seen a shrink lately?' to explain our mental issues with memory lapse/confusion. I had to deal with that years ago before they started to see so many survivors with these issues and have done more research in it all. Validation is golden to a survivor - and by the way - you AREN'T NUTS. If a doc seems to be suggesting you don't feel what you know you feel - on to a new doctor.

All the best.

Bluerose

gail03 said:

plexopathy
Hi Bluerose...thanks for all your info...have just been diagnosed with radiation induced plexopathy yesterday after years of tests and doctors including shrinks...was so sick of being told it was in my head...bit depressed at the moment but am determined to find something that will help without using canes etc....it has taken 8 doctors to have this confirmed...and I think we need to educate GPs about it...my cancer was almost 9 years ago...again thanks for your input..glad I found this site. I thought I was alone in this...

You are not alone
Hi gail03. I was diagnosed about a year ago after seeing many doctors including MD Anderson. Finally a doctor from Baylor diagnosed me. I still have a hard time wrapping my head around it. MD Anderson still insist that it is not plexopathy. I have had every test under the sun and still it is progressing. I am 47 and had radiation in 2005. I actually considered going to the Mayo Clinic for another opinion. It does appear to be rare. I spoke with my Radiaologist from 2005 and he suggested maybe taking Trental. I am going to look into it. Hope all is well.
Colleen

csulli said:

You are not alone
Hi gail03. I was diagnosed about a year ago after seeing many doctors including MD Anderson. Finally a doctor from Baylor diagnosed me. I still have a hard time wrapping my head around it. MD Anderson still insist that it is not plexopathy. I have had every test under the sun and still it is progressing. I am 47 and had radiation in 2005. I actually considered going to the Mayo Clinic for another opinion. It does appear to be rare. I spoke with my Radiaologist from 2005 and he suggested maybe taking Trental. I am going to look into it. Hope all is well.
Colleen

thanks
thanks Colleen ...so glad to hear Iam not alone...I live in Australia and it's so nice to realise that other people across the globe are so caring...we have a bad attitude in Australia...everyone says stop whinging...and be thankful you are still here..which I am..but I can't seem to stop thinking the cancer is back...won't know untill next month...my neurologist said "you are in deep ****" ...what the hell does that mean...will just have to wait and see......hope all is well with you too...

wetz5526 said:

Support Group
Hi Gail,

I am a 55 year old female and was diagnosed with radiation plexopathy about 2 years ago. I had colon cancer at the age of 31. Looking back, I always had some symptoms but was tolerable up until about 7 years ago when it got worse and I developed more symptoms. My symptoms are; constant (never goes away) aching, buzzing & tingling, twitching, weakness, balance issues, tightening feeling - all from my buttocks area down to the tips of my toes...it's actually painfull because these symptoms never ever go away. It drives me crazy. My Neurologist put me on gabapentin which has helped a bit with the tingling but that's about it. The worst time for me is at night when I'm relaxing in my chair reading or trying to get to sleep...the constant twitching and aching in my legs causes me to not be able to get to sleep. I have tried muscle relaxants which I couldn't tolerate. I currently take vicodin at night which does allow me to get to sleep. I also do accupuncture which helps a bit for a few days but that's about it and none of the symptoms ever go away. I also do some yoga as stretching the muscles does feel really good.I have always been an active person so not being able to do the things I once used to is very frustrating however I do still try to walk daily and do a few weight strenghening exercises because I know if I don't, it will get worse however by doing the exercises amplifies the buzzing, tingling,aching and weakness - it's kind of a catch22. I just wish there was that "magic" thing you could do or take to make it goes away. I too am very grateful to be alive today and thankful for a wonderful husband and kids that are so supportive but yes, it can be a very loanly road at times knowing that there just isn't much anyone can do for us. Having this site and talking to other people that are going thru what we are is very helpful....Take care, Barb

Pain
I've been dealing with hip pain since completing treatments (which included pelvic radiation...33 rounds) July, '09. Doc tells me pain isn't cancer and x-rays show sciatica issues. As I read a few of your symptoms with hip, buttox, leg and knee pain that sounds like sciatica. I go to a chiropractor every other week, and if not for this doc I'd be in awful pain.

When I bring it up to my oncologist he tells me no cancer, so be happy and go see your PCP. Don't think we're hearing docs as observant of the LT side-affects from treatments. This is another chapter in our cancer journey...gee!

Hugs,
Jan

wetz5526 said:

Support Group
Hi Gail,

I am a 55 year old female and was diagnosed with radiation plexopathy about 2 years ago. I had colon cancer at the age of 31. Looking back, I always had some symptoms but was tolerable up until about 7 years ago when it got worse and I developed more symptoms. My symptoms are; constant (never goes away) aching, buzzing & tingling, twitching, weakness, balance issues, tightening feeling - all from my buttocks area down to the tips of my toes...it's actually painfull because these symptoms never ever go away. It drives me crazy. My Neurologist put me on gabapentin which has helped a bit with the tingling but that's about it. The worst time for me is at night when I'm relaxing in my chair reading or trying to get to sleep...the constant twitching and aching in my legs causes me to not be able to get to sleep. I have tried muscle relaxants which I couldn't tolerate. I currently take vicodin at night which does allow me to get to sleep. I also do accupuncture which helps a bit for a few days but that's about it and none of the symptoms ever go away. I also do some yoga as stretching the muscles does feel really good.I have always been an active person so not being able to do the things I once used to is very frustrating however I do still try to walk daily and do a few weight strenghening exercises because I know if I don't, it will get worse however by doing the exercises amplifies the buzzing, tingling,aching and weakness - it's kind of a catch22. I just wish there was that "magic" thing you could do or take to make it goes away. I too am very grateful to be alive today and thankful for a wonderful husband and kids that are so supportive but yes, it can be a very loanly road at times knowing that there just isn't much anyone can do for us. Having this site and talking to other people that are going thru what we are is very helpful....Take care, Barb

I still find it difficult to
I still find it difficult to accept that they can't do something for it...also I didn't have the slightest idea of what it was or what was wrong with me until I found this site...I was even sent to a psychologist who thought it was all in my head...ridiculous in this day and age..

jazzy1 said:

Wow!
I'm right there with all of you as my posting early mentioned my lower back and sciatica pain. No cancer, so guess I'm on my own to get to some other doc. I'm not a person to go to doc for every ache and pain, so trying lots of things. What I've found as someone else mentioned, movement helps tremendously!!! I've been a huge exerciser from age of 18 yrs and now I'm 55 yrs. I do lots of stretching with yoga and workout (can't run, those days are gone due to the lower back pain, plus advised by my chiropractor) 6 days a week for almost an hour. I do low-impact exercises with walking and/or elliptical equipment at the gym. I might be really tight and feel some pain prior to working out, and after I feel really good.

This is what I do and know each of us is different and we all had different treatments. I for one had uterine cancer (Feb '09) with 6 rounds of chemo and 33 sessions of external pelvic radiation. My pain (started Dec '09) in lower back as mentioned, so I'm attributing it to radiation. As many have said we wish the medical industry would get up on these side affects, but not there or possibly not care. I'm really tired of my oncologist and radiologist tell me "well you have no cancer, probably due to arthritis from aging". I've become my own advocate to research other options. Now if my pain were that bad, I'd be in a docs office, but not there yet. Hate to think I could be like many posters, who are years and years away from treatments and using canes and on disability.

One thing I've read there are some after treatment type facilities who are up on side affects like we're all noting. As I look further, only looking for young patients something like 20's.

Great topic...
Jan

Help Needed - Very urgent
My mum had a hysterectomy in 2008.She had complained about heavy bleeding during her periods. On diagnosis we found there was a fibroid growth in the uterus. The gynecologist suggested to remove the uterus and the ovaries. After the hysterectomy,the fibroid was given for biopsy which resulted to be negative for malignancy test. In April 2011 she developed the symptoms of severe back ache and loose motion. On diagnosis we got to know about the metastatic Adenocarcinoma. The primary was unknown and still is. She has undergone 6 cycles of chemotherapy( taxol + carboplatin).She had CA-125 level up to 310 which got increased up to 698 after the first cycle of chemo. From there it got down to 63 after 6 cycles of chemo. Currently she is on oral Chemotherapy(Xeloda - 500mg). After 6 cycles of chemo the latest PET CT scan shows metastasis to bilateral pelvic lymph nodes, retro peritoneal lymph nodes,right retrocrural lymph node, omen-tum and left adrenal gland. Doctors are not sure of the surgery.If the surgery will help her.If they are able to remove the lumps completely. They say they will try to keep very less residue in the body.As in, they will try to remove as much as they can. But they are not sure if they are able to completely remove it or not. I don't know what to do. Can't figure out what is the right decision. They say it is an inter-operative decision. I don't want the doctors to open up her abdomen and decide to back out and close it back again. They say even that might be the case. I Can't afford to give her more pain. She is already in pain. She has lot burning sensation in the stomach now. Anybody who knows anything about this please help me.Any info you guys have might help me. Please Kindly Reply. God Bless All.

jazzy1 said:

Wow!
I'm right there with all of you as my posting early mentioned my lower back and sciatica pain. No cancer, so guess I'm on my own to get to some other doc. I'm not a person to go to doc for every ache and pain, so trying lots of things. What I've found as someone else mentioned, movement helps tremendously!!! I've been a huge exerciser from age of 18 yrs and now I'm 55 yrs. I do lots of stretching with yoga and workout (can't run, those days are gone due to the lower back pain, plus advised by my chiropractor) 6 days a week for almost an hour. I do low-impact exercises with walking and/or elliptical equipment at the gym. I might be really tight and feel some pain prior to working out, and after I feel really good.

This is what I do and know each of us is different and we all had different treatments. I for one had uterine cancer (Feb '09) with 6 rounds of chemo and 33 sessions of external pelvic radiation. My pain (started Dec '09) in lower back as mentioned, so I'm attributing it to radiation. As many have said we wish the medical industry would get up on these side affects, but not there or possibly not care. I'm really tired of my oncologist and radiologist tell me "well you have no cancer, probably due to arthritis from aging". I've become my own advocate to research other options. Now if my pain were that bad, I'd be in a docs office, but not there yet. Hate to think I could be like many posters, who are years and years away from treatments and using canes and on disability.

One thing I've read there are some after treatment type facilities who are up on side affects like we're all noting. As I look further, only looking for young patients something like 20's.

Great topic...
Jan

After Treatment Facilities for Young Patients with Plexopathy
Jazzy1, I just found this website today looking for answers for my daughter. Quick recap,
she was diagnosed with stage IV Ewings Sarcoma (a childhood cancer) in 2009 at age 16.
15 rounds of intensive chemo, 4 or 5 lung surgeries (for metastises) 6 wks of radiation to her hip/pelvis, stem cell transplant, full lung radiation. She still has microscopic cancer cells in her lungs according to pathology in Dec 2011. She has nerve damage causing lumbosacral plexopathy which started about 1.5 years after radiation to her hip. Thankfully she has no pain, but is unable to walk without a toe-to-thigh orthotic. We saw a neurologist in Minneapolis who sent us on to U of Michigan, but all they are doing is monitoring it. She does PT and wears the orthotic. Your last post mentioned facilities or studies looking for 20 somethings? She is now 20-years-old. Where do we sign up? Thanks!
Maryonearth

maryonearth said:

After Treatment Facilities for Young Patients with Plexopathy
Jazzy1, I just found this website today looking for answers for my daughter. Quick recap,
she was diagnosed with stage IV Ewings Sarcoma (a childhood cancer) in 2009 at age 16.
15 rounds of intensive chemo, 4 or 5 lung surgeries (for metastises) 6 wks of radiation to her hip/pelvis, stem cell transplant, full lung radiation. She still has microscopic cancer cells in her lungs according to pathology in Dec 2011. She has nerve damage causing lumbosacral plexopathy which started about 1.5 years after radiation to her hip. Thankfully she has no pain, but is unable to walk without a toe-to-thigh orthotic. We saw a neurologist in Minneapolis who sent us on to U of Michigan, but all they are doing is monitoring it. She does PT and wears the orthotic. Your last post mentioned facilities or studies looking for 20 somethings? She is now 20-years-old. Where do we sign up? Thanks!
Maryonearth

Mary
oopsie!!! fingers are going crazy here....sorry

gail03 said:

got my mri results
got my mri results ..neurologist calls it radiation neuritis..can't find anything about it...am still excercising..it helps for a while but only until the next day...no meds. ...nothing...just put up with it..not going near doctors again ...sick of it...I waited 3 years to hear that...

Physiatrist
Has anyone gone to a Physiatrist for problems due to late effects of radiation and if so, did it help? My Dr. is referring me to one to see if it might help with all the effects I am having. I was diagnosed with lumbar sacral radiation plexopathy over 2 years ago and my symptoms just continue to get worse. My symptoms are constant twitching, buzzing, aching/pain, weakness, fatigue from my hip area all the way down to the tips of my toes. (I had colon cancer 25 years ago at the age of 31).It just never goes away. I have seen a Neurologist who put me on gabapentin but I don't think that helps much if any. The hardest time is at night - I can't get my legs to calm down. Very frustrating these side effects but also very lucky and happy to be here. Thanks, Barb

yorrick said:

Hi Gail and others reading
Hi Gail and others reading this discussion board. I had radiation treatment for testicular cancer 30 years ago and have had side effects from about 2 years after last treatment.It was pretty minor at first, just a slight limp and foot drop, but has now progressed to me having to wear splint type orthotics and needing a crutch for long walks. It has seemed to stabilise in my left leg and its been the same for 10 years or so. My right leg got very weak a few years ago and, like you, I had fears that some type of cancer was back. After tests and a third visit to my neurologist he finally used the words radiation plexopathy and suggested 3 things. 1. try and keep weight down 2. swim as often as you can(aerobic) 3. see an orthotic specialist. I have done all three and now that I have retired I've also joined a gym and do a programme of leg strengthening exercises 3 times a week. So, what is working??? The gym and swim routine is having a noticeable effect. I can walk without my orthotics over short distances. The orthotics help with balance and make walking possible over long distances. The leg strengthening has really helped and I can feel it getting stronger every time I go. Riding a bike also helps. My philosophy is use it or lose it. I'm sailing to South East Asia this year with my wife as part of a rally and we will carry on up to Malaysia by Christmas. This side effect can really be upsetting at times as mobility is a fundamental need for us all. I walk with a very obvious swing and limp and I get stares every time I go out. I just say quietly to myself that this is not going to beat me and bravo for having the guts to give it go. cheers and hang in there.

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

Anatomically, the lumbosacral plexus consists of lumbar (L1-L4) and sacral (L5-S5) portions, which are connected by the lumbosacral trunk (L4-L5). The L1-L4 nerve roots transverse through the psoas muscle and then coalesce into the lumbar plexus, which then divides into anterior and posterior divisions.
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The first 3 nerves (iliohypogastric, ilioinguinal, and femoral) of the 7 major branches of lumbar plexus provide motor and sensory innervation to the abdominal wall. The next 3 nerves (lateral femoral cutaneous, femoral, and obturator) innervate the anteromedial thigh. The femoral nerve terminates in the saphenous nerve providing sensation along the medial aspect of the leg.