radiation-induced brachial plexopathy
Comments
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Hi Connie.... I'm sorry to hear how miserable you are feeling. It sucks that no MD has been able to diagnose ad provide help thus far. I live in Dallas TX and traveled to Memorial Sloan-Kettering in NYC for my diagnosis. However, since then I have found that other cancer centers have survivor patifent clinics specifically relating to treatment chronic problems. MD Anderson is another center that can diagnose and help you. They are located in the Houston, TX area. Not sure what may be in your proximity. Are there large cancer centers in your area? Including medical universities that provide cancer survivor care?
I hope you are able to locate a MD or care facility quickly.....
Stay Strong,
Cindy -
Thanks Cindy,
there are two nearby centers. The one where its out of network for ins. And the one where my former BS and RO is, and most likely l'll have to go there, i called their rehab unit but they req a drs referral. im going to try to get that from my PC tomorrow. I didnt think about the rads center having post rad care, really think the doc would deny this is an SE of treatment. But l will call and ask. The front desk ladies were really nice.
Has anyone experienced random bruising on the involved arm? I have. always small round bruises on the inside of treated arm. Not bigger than a quarter. Thats been going on since jan this year.
Or itching on skin surface? Same spot has random itchy flares, several years now.
Thx for concern and suggestions, love these boards for the real help.
~Connie -
Have you been diagnosed with bracial plexopathy?
HOW did that happen?... The dx, l mean, does it have to get so bad that l can hardly move my arm before a doc figures it out? What doc? Ortho? pcp? Or maybe the LE therapist? I need to know because if there is treatment or exercises to prevent further damage, i dont want to wait.
Connie -
Connie, my BP diagnosis came from a neurologist. Bring all your info, test reults, etc to him. But he never suggested any therapy, just anti-depressants. Ha!
If there are any exercises out there, ladies, please let me know.
Barbara-
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Connie - I have documented my journey with RIBP at a different forum. It may help you now in your quest for answers. http://community.breastcancer.org/forum/69/topic/762916?page=1
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Thank you Cin & Barbara, Im still in shock at how little doctors know about LE. I mean.... I knew a lady THIRTY years ago who had it. She wore a sleeve & gauntlet then.
Its so disappointing that only therapists seem to have made advances in treatment and the Docs just shrug, like, oh, thats a new thing when CLEARLY IT IS NOT.
Connie -
Some relatively good news for a change! Carol57 posted this to another thread, and I'm eager to share it with all of you:
Bob Weiss, the wonderful LE advocate who helps with insurance denials of LE and garment coverage, just posted on another forum, giving the link to a news story:
www.nytimes.com/2012/10/23/us/...
Here's the first part of the story:
Tens of thousands of people with chronic conditions and disabilities may find it easier to qualify for Medicare coverage of potentially costly home health care, skilled nursing home stays and outpatient therapy under policy changes planned by the Obama administration.
In a proposed settlement of a nationwide class-action lawsuit, the administration has agreed to scrap a decades-old practice that required many beneficiaries to show a likelihood of medical or functional improvement before Medicare would pay for skilled nursing and therapy services.
Under the agreement, which amounts to a significant change in Medicare coverage rules, Medicare will pay for such services if they are needed to “maintain the patient’s current condition or prevent or slow further deterioration,” regardless of whether the patient’s condition is expected to improve.
Federal officials agreed to rewrite the Medicare manual to make clear that Medicare coverage of nursing and therapy services “does not turn on the presence or absence of an individual’s potential for improvement,” but is based on the beneficiary’s need for skilled care.
Yes! Continuing care becomes a possibility again! Be well,
Binney -
Thanks Binney! Awesome!
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Radiation damage .......... wish I would have known!
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am I allowed to cry? I have been having pain in my left arm (the side of the lumpies and mild lympho), the LE therapist said it is not lymho as no swelling buy....I carry a 20 oz cup of coffee into the gym, by the time I get to the locker room, the left arm carrying the coffee, is stiff and painful to unbend. The pain during the night if my arm is not happy is not nice and keeps me awake
I was blaming it on doing too many weight excercises and actually stopped the gym for a week. Arm is feeling better but now I am not sure~~
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Hi again, Everyone,
My RIBP in my right shoulder, arm and hand continues to affect my quality of life. I just posted on the Lymphedema Facebook page. Maybe the Lymphedema Guru has some advise for me. In addition, I am finding it increasingly difficult to dress myself because my right wrist flops backwards and my lifeless hand hangs. Of course I can't feel my fingers and have to keep checking to make sure I am not bending my fingers and thumb the wrong way. Getting into my compression glove takes help from my left hand to move my fingers into the glove fingers.
Sooooooo....I see a hand therapist for my left hand and arm, which are very tired, and I have arthritis in my thumb. I asked my hand therapist if she could give me a brace for my right wrist. So now I will get a prescription for that too.
Any advice is appreciated.
Ralpha(Ronomom)
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Rapha--I use an over the counter wrist brace, less than $10 in the drugstore for my wrist when it gets crankie. It helps a lot and if you have not tried them, maybe worth a trip?
wow, hand therapist!
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Ralpha, I could have written your last post. Exactly, even to the side of the body and the misery of the left hand. But I do not have a hand therapist at this time. I had one a few years ago. but she was very uninterested in both my hands. I suppose I could look for another one.
Trouble dressing? Wow, what an understatement! Just tell me how you get a bra on! No laced shoes, zippers, necklaces, earrings........can't nail polish or do anything else the poor left hand needs. This is not a condition that can be handled by sissies.
The weight of the right hand and arm are very troublesome, and I was thinking of using a sling for some of the time, especially outside, shopping or something. I also lose track of where my fingers are and the position of my wrist. It seems that it might be safer to keep them close in front of me instead of dragging behind, like a tail. (Besides, people are more likely to give you the right of way.)
You did not mention balance problems; I am always aware that I am not as secure as I once was on my feet. I wouldn't dream of going down a staircase without a bannister to hold on to. This can be very upsetting in a public place where everyone is going in the opposite direction.
Let me know how the hand brace works out. Hang in there.
Barbara-
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Thanks barbaraelle and proudtospin. I don't wear a bra any more and I look very lopsided even after breast reduction surgery on my larger, normal breast. I have not been able to find a prosthesis that does not crush my "conserved" breast and move my smaller breast (nipple facing my armpit) UP. What a laugh!! My right breast is 3 inches higher and smaller than my left. I wear crew neck shirts and as many cover up sweaters and vests I can find.
My balance is troublesome and I work on it at the gym and around the house. I have fallen twice this past year, once out of bed on my right side because I couldn't feel the edge. I slid down, jammed my RIBP shoulder and hand, got brushburns on my knees. Of course, this is not the kind of thing I tell my kids. I DID tell my ex-husband at a family party, and I was laughing about how clutzy I am. My daughter was horrified and wanted to know why I didn't call her. It was 4:30 am and I got up!!! Victory for me.
My sense of humor and love for my friends and family are what keep me going. I read here once that saying "I injured myself in a trapeze accident," would get a laugh, but I find people are just too stunned to respond.
I signed up for the Lymphedema Guru's online letters. He has some good info on his website and refers readers to step-upspeakout.org.
Thanks Binney and everyone
Ralpha (ronimom)
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Ralha, do be careful, I recently woke up with horrid balance/dizziness. I called it vertigo and finally after a week of struggling I ended up at my PCD who sent me to a nuerologist for balance testing.
I was given a med for balance, basically like dramemine and it helped a lot. After a week, my balance seems better but it still stinks
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Ralpha and Barbaraellen, there aren't words!
Ralpha, are you still doing the Feldenkrais? Does it help at all with balance? I'm still really interested in that and would love to know how it has worked out for you over time.
Barbaraellen, I love your comment about giving you the right-of-way! Absolutely--open doors for you, offer to carry your bundles. 'Bout time, too!Here are a couple of websites for fashion arm slings--hmmm!
These come with thumb loops to prevent wrist drop:
http://www.castcoverz.com/fashion-arm-slings.php
(note the "seasonal" style that has "Bah! Humbug!" written all over it in red and green
)The Sherry Lebed Healthy Steps DVD has a section of exercises to work on balance issues. A lot of the women here find them boring, but if they improve our confidence what's not to like? It's here:
https://www.gohealthysteps.com/shop/product/focus-on-healing-through-therapeutic-exercise-and-movement-dvd-1014.cfm?killnav=1Since you're both so inventive, please do let us know what you come up with. Wonderful to hear from you!
ProudToSpin, how frightening to wake up to that! Did they figure out why it came on so suddenly? Hope you continue to improve and never have to deal with that again.
Gentle hugs,
Binney -
Binney, after bundles of dumb tests on my brain including MRI and such, end up blaming it for now on ear infection. I confess I swim in a pool with no ear plugs.....until this past week! I totally think the docs will just keep testing away. They have no answer as to why the inbalance hit so suddenly although I have met a number of women at my gym with vertigo issues, it seems to come and go mysteriously.
It just cleared up!
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Binney,
Feldenkrais is really helpful, but it is not covered by insurance and the cost is 120/hr, so I don't go unless i have shoulder/neck pain. My practitioner gave a stab at explaining what she does with me, but it was too complicated. I recommend Feldenkrais for everyone. It is covered by insurance in Isreal, Europe and Canada.
Ralpha
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Oh, Ralpha, that's just criminal! (And how on earth do practitioners make it if their services aren't covered??!) Any chance she could explain it in small chunks, so you could start to implement some self-care and then pick up more as you go along? Grrrrrrrrrrrrrrr!
Merry Christmas to those who celebrate it, and a joyous, restful, blessed day to ALL,
Gentle hugs,
Binney -
Can someone plese cite some aticle for me that shows measuring lymphedema in a shoulder, arm, and hand w/ RIBP is not practical with all the muscle loss?
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Doe, I doubt there's any such study or article. But you could ask Joe Zuther at his Lymphedema Guru blog--he won't have an article to cite either, but he has a wealth of clinical experience.
Do let us know what you discover!
Hugs,
Binney -
In the past, therapy has not been paid for unless it could show improvement in function, and that policy has made it impossible for many here to continue receiving therapy to maximize movement, slow degeneration, control lymphedema, or relief pain. But there's a break-through on that today. Here's the news, from Bob Weiss, lymphedema advocate:
Sent: Thursday, January 24, 2013 8:05 PM
Subject: [LymphedemaTherapists] Improvement Standard is GoneThe unwritten policy called the "improvement standard" used by Medicare Contractors to deny any therapy that does not result in measurable functional improvement has been thrown out by a Federal Judge. This means that Medicare beneficiaries who require skilled maintenance services cannot be denied those services in the home health, nursing home or outpatient setting. This settlement becomes effective today, January 24, with the signing of the Settlement Agreement in the Jimmo v. Sebelius Medicare Improvement Standard case.
CMS has been tasked to educate its contractors and to change its documentation, policies, guidelines and instructions. In the meantime, if medically required therapy that has been prescribed by your physician in treatment of your lymphedema has been denied on the basis that there is no expected functional improvement, file an appeal.
It will be very interesting to see how this law will affect the implementation of the new therapy reimbursement policies scheduled for 2014, which are based on demonstration of functional improvement.Robert Weiss, M.S.
Lymphedema Patient Advocate -
Binney - thank you for sharing that - and yipppeeee!
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From Family Practice News: the lower dose of radiation, hypofractionation, as done in the UK and Canada, causes less RIBP
An article from Family Practice News
AN ANTONIO – A lower-dose, briefer radiotherapy regimen than is standard for early-stage breast cancer in the U.S. demonstrated comparable efficacy with fewer side effects at 10 years of follow-up in a pair of landmark U.K. studies."Long-term follow-up confirms that a lower total dose of radiation in fewer, slightly larger fractions delivered over a shorter treatment time is at least as safe and effective as standard 5-week schedules of curative radiotherapy in women with early breast cancer," Dr. John R. Yarnold declared in presenting the latest data from the U.K. START (Standardization of Breast Radiotherapy) trials at the annual San Antonio Breast Cancer Symposium.
Dr. John R. Yarnold
The historical standard of care for radiotherapy in patients with surgically excised early breast cancer is 50 Gy delivered in 25 fractions of 2.0 Gy each over the course of 5 weeks. That’s still standard practice in the United States.
In the United Kingdom, however, the standard nationwide is 40 Gy in 15 fractions of 2.67 Gy over 3 weeks. Radiologists term this "hypofractionation": delivering a lower total dose of radiation using fewer but larger fractions. Hypofractionation has standard practice in the United Kingdom since the National Institute for Health and Clinical Excellence–issued guidelines to that effect in 2009. Those guidelines were based in large part on the earlier, highly favorable 5-year outcomes of START A (Lancet Oncology 2008;9:331-41) and START B (Lancet 2008;371:1098-107).
The START investigators deemed it essential to conduct the new 10-year analysis because adverse effects of radiotherapy given for breast cancer can arise after the 5-year mark. Also, it was important to learn whether the early antitumor effects of hypofractionated radiotherapy persisted, explained Dr. Yarnold, professor of clinical oncology at the Institute of Cancer Research, London.
The two key findings at the 10-year mark of START are, first, that both breast cancer and the dose-limiting normal tissues respond similarly to fraction size, so there’s no advantage in continuing the 2 Gy fractions that have historically been the international standard; and, second, that a 15-fraction/3-week schedule is gentler on normal tissues and comparable in antitumor efficacy to a 25-fraction/5-week regimen.
The clinical implications are clear, Dr. Yarnold emphasized: "Patients can safely be treated to a lower total dose with fewer fractions than the historical standard of 50 Gy and 25 fractions. There are no detrimental effects of hypofractionation noted in any of the subgroups studied."
The 10-year rate of moderate to marked adverse treatment effects on normal tissues in START A survivors who received 39 Gy in 13 fractions over 5 weeks was 43.9% compared with 50.4% in those randomized to 50 Gy in 25 fractions over 5 weeks. The resultant 20% relative risk reduction with a lower total radiation dose delivered in fewer fractions was statistically significant. In contrast, the 10-year locoregional tumor relapse rates in the two groups were similarly low.
At 10 years in START B, patients who received 40 Gy in 15 fractions over 3 weeks had a 37.9% rate of moderate-to-marked adverse effects on normal tissues, compared with a 45.3% rate in those who got 50 Gy in 25 fractions over 5 weeks, for a highly significant 23% risk reduction. The relapse rate was 4.3% after 40 Gy and 5.5% after 50 Gy, a nonsignificant difference.
In both trials, all types of side effects involving normal tissues were significantly less common in the lower-total-dose, fewer-fraction groups. That includes brachial plexus injury, which has been a concern expressed by supporters of the historical standard regimen, Dr. Yarnold added.
Radiologists and surgeons in the audience called the 10-year START results "very, very important" and likely to be practice changing.
Canada has already switched from the historical standard to 42.5 Gy delivered in 16 fractions over the course of 22 days. Asked if he thinks U.S. radiologists, too, should change their practice in light of the START findings, Dr. Yarnold was diplomatic. "I foresee no scientific reasons why they should not consider that very carefully," he replied.
Follow-up will continue in the START trials, which are funded by the Institute for Cancer Research, Cancer Research UK, the Medical Research Council, and the National Cancer Research Institute. Dr. Yarnold reported having no financial conflicts.
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Hi Everyone:
I had breast cancer in 1999 and had both breasts removed although I only had the cancer in my right one.
In 2008 I went to my first Neurologist because the pain was mild but botherome. In 2010 went to a new doctor hwo said I had Carpal Tunnel. Well after two surgeries and arm and hand getting much worse, tingling, vise-like pain from where my port was up my right side, down my arm and into the whole hand. Surgeon and Neurologist couldn't understand why they referred me to Shands Hospital in Gainsville. They thouight it could be Radiation Brachial Plexopathy. Told me to go see my radiation doctor.
To make a long story shorter (because I can hardly type anymore, IT HURTS). I have been through Acupuncture, chiropractic, phycial therpy, pain management where I had 6 Ganglion Blocks and 1 epidural. Nothing helped. Went to a new Neurologist and he agreed with the doctor at Shands. Also says that there is no cure but could start me on Trental. Have not heard anything from this doctor as yet.
I am glad to read all these comments from people who are in the same pain. It helps mentally but not with the pain.
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Hello, punnkinn, and welcome
,I so wish I could offer you real solutions, but at the moment I don't know what they are either. There is a bit of research about Trental, and some of the women here have been on it. I hope they'll come share their experiences with you, but I have to say this thread has been awfully quiet lately.
Anyway, you can read the study abstracts here:http://www.stepup-speakout.org/Radiation_Induced_Brachial_plexopathy.htm#drugs tren
Please do keep us posted on your progress. Gentle hugs,
Binney -
Hi punnkinn,
I have BPN, LE and vascular insufficiency in my affected arm. My RO put me on the "Paris" protocol of trental, vitamin E and clodronate (an oral bisphophonate that is not available in the US, but is available via prescription in Canada):
http://clinicaltrials.gov/show/NCT01291433
I took all 3 for about 9 months. I then switched to trental, vitamin E and once a year infusion of zoladronic acid (an IV bisphophonate available in the US). I have been on the trental/vit E/bisphophonate combo for about a year and a half, and my neuropathy has improved noticeably. Trental has been used for decades for arterial insufficiency, and my hunch is that the neurological improvement is due to improved blood flow to the arm, and not necessarily due to improviment in the RIBP per se..
(About 4 -6 months after starting on the combo, the blood flow had improved in my arm to the point that my hand didn't turn grey and dusky when raised, and my fingernails and arm hair started to grow back. My RO is a concerned about prolonged use of very high dose Vit E, so I am currently cutting back on the Vit E. KS1
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Hello everyone!
When I last posted here I was to explore the potential benefits of acupuncture but while I was looking of a good acupuncturist my affected arm got worse. The hand became pretty much useless. The thumb, the index and the middle fingers became completely numb. While cutting vegetables I cut a piece of the middle finger's nail and never felt it. I also have patches of skin on the arms that are numb. When the hand is lower than the elbow the arm starts to tingle and hurts.
I booked a trip to China in October which forced me to seek relief for my hip problem. I went to see acupuncture two weeks ago. My acupuncturist is Chinese with a very limited English vocabulary so I was not able to explain the gimpy looking hand. He treated both the arm and the hip with some massage and acupuncture. I had a treatment every 2 days and after 6 treatments I feel pain the finger area where I loss the nail, I can grip some things using my thumb without the fingers going everywhere first, I can scratch my nose with the index finger. It feels almost normal. I don’t know if the improvements are permanent. I have another apt on Friday. I am so glad I had a hip problems.
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Hey everyone! Please accept this invite for a google hangout to discuss our Quality of Life after cancer therapy.... "If you would be interested, we are planning a google hangout to talk about the many life changing effects from our cancer treatments. It is this evening from 9-10 PM Eastern. If you, or anyone else is interested in joining in, we still have a few spots open. Please send me an email at cindy.graeff@gmail.com.... I'd love to have you join!"
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Cindy I'd be interested in the future. Will this be a regular thing? You can email me at lkrochon@live.com
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