radiation-induced brachial plexopathy
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Hi, Shari,
Yes, we switched boards -- we're on the LE board now. But you got here automatically apparently, and posted successfully, so no problem with that. Hoping others with RIBP will be better able to find us here.
Oddly, I have a friend at that hospital this week for her regular check-up for her son. He was born prematurely and still has some medical issues 6 years later, so she does a semi-annual trek there to monitor his progress. Good hospital, and I'm guardedly hopeful for you -- nah! truth is I'm downright excited!
Prayers for good news, or even hints of good news.LOL! I don't have a medical or research background at all, but when I ran into the wall of LE I was simply stunned that it was such an unknown. So for four years I've been turning over every rock trying to find out what's known and what isn't, and who's passionate about it. The RIBP is definitely related to LE in terms of our body's responses, and what we learn about LE on the cellular level will eventually give us information we need about BP, I'm sure of that. At the moment the researchers seem to be stumbling around in the dark on this, as alone and isolated as the BP patients themselves are. As with the LE, I'm hoping that when RIBP patients begin to come together and share their insights and experiences, we can help give direction to the researchers and doctors working in the field and speed up the process of finding workable treatments, prevention, and even cures.
Which is why I'm excited about your visit to Cinncinnati. Even if they can't offer you immediate help (though I'm sure hoping they can!), meeting with you and exchanging information will give them valuable clues that they may eventually put together into some new approach.
Okay, I'll climb down off the chandelier, where I seem to be swinging this morning. Bet you're sorry you asked about my medical background now!
Wow! No kidding on the triple neg?! What a gift that good news is! I'm REAL familiar with the "every little ache and pain" syndrome. Almost had "cancer of the fingernail" the other day until I came to my senses and remembered I'd caught my finger in the cupboard door earlier.
You're absolutely right about the freedom we can have when we're willing to focus on counting our blessings. Just that is takes some time to get to that point!
Thinking of you too, Barbara! Hurry home! Be well!
Binney0 -
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Cited article from RAGE links:
BMJ 1995;311:1516-1517 (9 December)
Editorials
Brachial plexus neuropathy after radiotherapy for breast cancer
Lower doses and surgical management of the axilla may be theanswerIt is tragic when patients are permanently harmed by a complicationof treatment. One such complication, which has recently receivedpublicity, is brachial plexus neuropathy after radiotherapyfor early breast cancer.1 A group of women who perceived themselvesdamaged in this way formed a pressure group called RAGE (RadiotherapyAction Group Exposure). In response the Royal College of Radiologistscommissioned an independent survey by two senior oncologistsfunded by the NHS Executive.2
The committee of RAGE received more than 1000 letters afterpublicity surrounding litigation and formed an action groupwith 800 members. Of 556 women who thought they had sustainednerve damage the college contacted those who had been treatedat 15 representative centres. These women were asked if theywould agree to have their medical records reviewed in orderto establish whether they were suffering from a condition relatedto the disease process or to previous treatment, or both. Itwas essential to identify factors in the delivery of the radiotherapyor its association with surgery or chemotherapy that might havecontributed to the neuropathy.
Against advice from their solicitors, 126 of the women agreedto have their records examined, and 48 (38%) of them were foundto have brachial plexus neuropathy due to radiotherapy. Thesepatients had been treated during a 14 year period (1980-93)at 15 radiotherapy departments in England and Wales. These centresgave radiotherapy to about 65000 women with operable breastcancer during this period. (It is not known how many of thesealso developed side effects.) Although 41 cases occurred during1980-6, only seven patients had received treatment since 1986.Since the median delay between treatment and the start of symptomswas 27 months, this implies a decline in incidence of neuropathy.
An extensive review of the factors associated with radiotherapyin breast cancer--associated surgery, chemotherapy, radiationdose, fractionation regimes, the position of the patient, theradiotherapy fields, and the treatment schedule--laid the mainblame for the neuropathy on the planned movement of the patients'arms and bodies between radiotherapy to the breast and radiotherapyto the axillary and supraclavicular lymph nodes. Thirty fourof 47 patients (72%) moved in this way developed neuropathy,compared with only 12 of 51 (24%) who were not moved. The highdoses used to treat the axilla in the past were a secondarycause.3
While radiotherapy has an important effect in preventing localrecurrence and thus improving quality of life, a recent overviewshows no significant impact on 10 year survival.4 Indeed, a5% reduction in deaths from breast cancer seems to be counterbalancedby an increase in deaths from other causes. However, studieswith longer follow up have shown a significant trend towardsimproved survival, suggesting that modern radiotherapy may havea value beyond the clearly established improvements in localcontrol.5 A 5% improvement in survival due to radiotherapy wouldrank in impact with that from adjuvant chemotherapy and hormonetreatment. Surgical management of the axilla is used increasingly.This largely avoids the need for radiotherapy to that area andso prevents brachial plexus neuropathy due to radiotherapy,while a good cosmetic result is still achieved by irradiatingthe retained breast.
How big is the problem? The Royal College of Radiologists surveyreviewed a self selected group of women who perceived themselvesdamaged, and thus the report cannot assess the absolute sizeof the risk. However, the report states that radiotherapy tothe breast has dramatically improved in recent years. Writtenpatient information, pain relief clinics, lymphoedema protocols,and palliative care services are now routinely available, andthe aim is to manage patients in a multi-disciplinary team ofbreast specialists with a wide knowledge of the disease.
What more can be done now? A further multi-disciplinary committeeof the college, chaired by Dr Jane Maher, has produced a reportenumerating management plans for patients who have brachialplexus neuropathy.6 It lists named clinical oncologists at eachradiotherapy centre who would act as a contact for such patients.In addition independent cancer support groups have formalisedadvice for patients who are concerned about late side effectsof radiation.
A recent issue of Clinical Oncology described the audit of earlybreast cancer management by radiotherapy.7 The report from thecollege suggests proposals for research. The time has come fora national study to identify the optimum dose fractionationtechnique for appropriate, safe, effective, and economic managementof early breast cancer. Clinical oncologists are anxious tocontinue to provide improved clinical outcomes for breast cancerpatients. The Royal College of Radiologists has a nationallyagreed protocol for assessing different radiotherapy regimesin early breast cancer, including quality assurance. This initiativemust be funded.
Consultant clinical oncologist Middlesex Hospital, London W1N8AA
Margaret F Spittle
- Pierce SM, Recht A, Lingos TI, Abner A, Vieini F, Siver B, et al. Long-term radiation complications following conservative surgery (CS) and radiation therapy (RT) in patients with early stage breast cancer. Int J Radiat Oncol Biol Phys 1992;23:915-23. [Medline]
- Bates TD, Evans RGB. Brachial plexus neuropathy following radiotherapy for breast carcinoma. London: Royal College of Radiologists, 1995.
- Olsen NK, Pfeiffer P, Johannsen L, Schroder H, Rose C. Radiation-induced brachial plexopathy: neurological follow-up in 161 recurrence-tree breast cancer patients. Int J Radiat Oncol Biol Phys 1993;26:43-9. [Medline]
- Early Breast Cancer Trialists' Collaborative Group. Effects of radiotherapy and surgery on mortality and recurrence in early breast cancer. N Engl J Med (in press).
- Cuzick J, Stewart H, Rutquist L, Houghton J, Edwards R, Redmond R, et al. Cause-specific mortality in long-term survivors of breast cancer who participated in trials of radiotherapy. J Clin Oncol 1994;12;3447-53.
- Maher EJ. Management of adverse effects following breast radiotherapy. London: Royal College of Radiologists, 1995.
- Yarnold JR, Price P, Steel GG. Non-surgical management of early breast cancer in the United Kingdom: radiotherapy dose traction practices. Clin Oncol 1995;7:223-6.
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How Does Radiation Induced Brachial Plexopathy Present? (copy and paste from cancer.com)
The most common presenting symptoms of RIBP are:
- Tingling and numbness of the thumb and forefinger.
- Wasting and weakness of the small muscles of the hand.
- Persistent pain in the shoulder region.
These symptoms appear from 6 months to over 20 years after treatment with the most commonly reported incidence between the 2nd and the 5th year after radiotherapy. It should be emphasised that such symptoms may be caused by a variety of unrelated conditions and, if related to cancer and its treatment, are more likely to be due to recurrent cancer than RIBP.
Typically, a patient will present with numbness of the fingers. Wasting of the small muscles of the hand will follow within months or years. Pain will follow a variable course: characteristically it follows the distribution of nerves supplied by C5 and C6, although it may involve the whole brachial plexus; the features of the pain vary not only in different individuals but also within the same individuals at different times. Such neuropathic pain is notoriously difficult to manage. Between one third and two thirds of patients with RIBP will develop progressive loss of function of the hand and arm over a period of months or years. In a minority, progression may arrest without significant loss of function. As paralysis becomes complete the severity of pain may recede but in other cases persistent causalgic pain remains.
There is a variable incidence of other associated problems including bone necrosis/fracture, lymphoedema and circulation problems. Persistent pain and increasing disability may result in clinical depression and non-specific stress-related illness.
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I would like to urge anyone who feels they may have experienced an adverse side effect from use of the laser to report it to the FDA: the laser was approved on the basis of one study of less than 60 women, with only a 3 month follow up. Now it's being sold for unsupervised home use. It is considered a category 2 durable medical device, and there is no mandatory reporting required. Now that many more than 60 women have used it, and there are no reports in the medical literature on follow up, it is up to patients to report any possible side effects--it can be done easily and privately on line:
http://www.fda.gov/medwatch/how.htm
I was recently offered the laser, and asked for studies, and researched the internet, and there is just the one. Before drugs come to market, they are studied on a couple of thousand people, and only when millions use them do side effects appear. I am not trying to attack the laser--I am just not comfortable with it based on the lack of data.
So, if you've used it and had any side effects, please report them. Only then will we be able to make informed decisions about its use.
Kira
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Hello girls, I just got into my email this morning and found yours. First of all, I haven't gotten my report yet but called and she said I should get it any day now. I was waiting for it so that I could be more clear-cut with passing the information on to you guys. That's why I haven't emailed back...in fact...haven't been on "the site" either. As soon as I receive it, I will write a little report up and send to you. I will put on the site and email. Of course Bonnie, any information I get I will be happy to post on "our" site. Life has been busy for me. My 16 year old granddaughter has been with me ever since I got home from my trip. Her parents have been out of town and she has been staying with me. I love it, but everything changes with my routine and haven't had my usual computer time. OK...enuf about me. I am so sorry that Barbara is going through such anxiety! I just read the emails but am not clear on what is going on other than having a biopsy with MRI. I have had both but not together. I understand the anxiety because when I have my MRI's, I have to be doped up with Xanax (of which I never take any other time) making the point that it makes you a nervous wreck to say the least! Having both at the same time would shake you up for sure. Are they doing this because of a supicious area seen on mammo and ultrasound? Have they done a "core biopsy"? Is there a reason why they can't do that? I am just confused because I haven't received all the ifirmation. I have read about the anxiety that Barbara is experiencing but not the reasons. Barbara whatever the reasons, hope that you can get this all behind you soon and can get on with life! Talking about going back to your home town and finding a specialist (as the doctor who wrote in this email)...the same kind of thing is happening to me. As you know, I had to go all the way to Cincinnati to someone who says he has an excellent referral right here in Los Angeles at UCLA. Now my question is why doesn't anyone around here know about him. My oncology group are researchers as well. Hello?????what's the deal here????? Anyway, am waiting for the report which has the new guys name and # on it. If doesn't come on Monday, plan to call and gt it by phone. Very anxious as it is getting cooler here nights and morns and I have a huge intolerance to any temperature under 74 degrees....pain begins. I call it the "rose thorn people come around to visit me". Yes...thorny tingling...that's what it is. I've been getting those hand warmers that skiers use and they help along with a half Vicodin once a day if needed. Well Bonnie, once again you have been a great help to someone in need. I am so glad that I have a new friend with the knowledge and compassion that you obviously possess! Most of all, your willingness to give to others as I have seen you do time and time again! Barbara, I hope that things get easier and you are able to connect with the specialist who can get you through this and be supportive along the way! You , like me, live in major cities...there has to be some excellent specialists there. BTW....did I tell you that I emailed Oprah regarding BP and of course LE??? I actually thought that because of breast cancer month, the subject would be addressed. But NO....not even a "thanx but no thanx". Love you guys even thought we have never met. Now I understand how people form relationships on the internet. Never could understand that before! Getting educated all the time! I am going to try and post this email on the site too! Be well, Shari
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Welcome back, Shari!
Sure hope by now you've gotten the report and are ready to move ahead. How handy that there's a doctor to consult close by, but how crazy is it to get there by way of Cincinnati?! Since the doc in Ohio suggested hyperbaric treatment I'll post what information I have about the hyperbaric chamber therapy for LE, even though I already emailed it to you. Hopefully it'll help others who might be reading along. It's part of an abstract from the August National Lymphedema Network professionals' conference. I'm afraid the news is not very good on the surface, but you should ask Dr. Foad if he has other information specific to your personal situation that would skew things in favor of trying this at this point. It's authored by Dr. Andrea Cheville, who's compassionate and extremely well-versed in LE -- and she's also having trouble finding patients to try out the hyperbaric therapy because of the time commitment and being inside what looks like a space station (she showed slides!) Here's the abstract:
HYPERBARIC OXYGEN THERAPY FOR EARLY STAGE LYMPHEDEMA: PHASE II CLINICAL TRIAL
ANDREA L CHEVILLE, LUKE VELDERS, ANTHONY KILLIAN, STEPHEN THOM
Physical Medicine and Rehabilitation, Mayo Clinic, Rochester, MN, U.S.A.; Center for Environmental Medicine, University of Pennsylvania, Philadelphia, PA, U.S.A.
Background:
Hypberbaric oxygen (HBO2) attenuates breast edema associated with radiation therapy. However
use of HBO2 to treat established breast cancer-related lympedema has yielded disappointing results. We hypothesized that the lack of effi cacy is due to a temporal effect such that HBO2 must be administered within a finite time interval following radiation treatment.
Methods:
Twenty five breast cancer patients who developed lymphedema, defi ned by CTC v3.0 criteria, within 24 months of completing radiation and had completed Phase I complex decongestive therapy (CDT) were enrolled. Seventeen patients consented to receive HBO2 therapy while 8 patients who declined HBO2 therapy participated as controls. Twenty HBO2 treatments were delivered over 3-4 weeks. Each treatment involved breathing 100% facemask O2 at 2.4 atmospheres absolute (ATA) for 2 hours. Patients limb volumes were assessed by optoelectric volumetry at baseline, 8 weeks post-HBO2, 6 months, and 12 months. Compliance with Phase II CDT was assessed at each timepoint with a non-validated questionnaire. Primary Outcome Measure: Percent inter-limb volume discrepancy at 12 months.
Results:
Baseline demographics and breast cancer treatment characteristics were similar between HBO2 and control groups excepting radiation treatment. Fifty three percent of HBO2 patients and 12.5% of control patients received 4-field radiation. Baseline inter-limb volume differences were not signifi cantly different between the groups. However, at 12 months the HBO2 group’s mean inter-limb volume difference was signifi cantly less than the control group’s despite inferior CDT compliance (p=0.03).
Conclusions:
HBO2 offers promise of lymphedema volume reduction and sustained volume control when delivered within 24 months of radiation therapy.
I sure do understand your reluctance to undergo surgery with the LE in your arm. But if you want to consider it, the NLN recently published a couple of helpful articles about surgery in a limb with LE. With some precautions beforehand and careful management following, it can be safe and successful. Anyone who's an NLN member can access them in the LymphLink archives. If you're not, let me know and I'll help you find it.Oprah isn't making any friends among lymphers, is she?! Wish we all just had a chance to talk to her, for a few minutes even. Bet we could convince her to take notice!
Shari, for keeping your hands warm, do you mean those gloves with the fingertips missing? Do you use them around the house too? That's a really good tip -- it's hard to keep hands warm and still try to do anything with them.
Barbara too, hugs and prayers! Keep us posted,
Binney0 -
Hello girls, I was excited to see these emails from you guys! Congrats on the success of the party Barbara and of course a big congrats on your B-9 report. Whenever the relief of going in and being afraid of the cancer coming back and being told no it's not cancer.....it's like being given the gift of life all over again. As we all know, there is nothng like that scare!!! So Barb, I hope you are continuinng to celebrate no matter what else is going on in life. With this LE and/or BP, it's hard to stay positive but sometimes I need to sit down, take in deep breaths (alone of course) and think about the beauty and blessings that I do have. Then I am able to get off the "pity pot" for a while. Of course, no one but my poor husband even knows that I am on the "pity pot" because I am very good at putting on the cheerful act at all times with most everyone else. Right now, I am really cheerful so no act today girls...tee hee! But in honesty, I don't let it get me down too much. Right now, I have a call in to these neuros at UCLA to see if now I can get an appt. I had my onc. fax in a request with diag., symtoms and such to even be considered for an appt. My gosh, this place is harder to get into than the Whitehouse! So, I'll keep you posted on that! Speaking of the election....am so glad it's over too! I was living and breathing it everyday for seems like a year! I am sorry though that Barack's grandmother passed away two days before he won. I was hoping she could hang on just little longer. But again, that's life! Well, I guess I would be the tie-breaker on your votes....I mean, Chicago? ~ Arizona? Tee he. Ok...enuf. Now for the fun stuff! I can't wait to meet you guys and spend some time in reality speak! So...whatever date you pick and whatever area I need to be in, I will find a hotel and be there!!! I would probably fly in to Phoenix and "rent a car". Anytime the last week of Jan, first few days of Feb is fine for me! Just let me know and I'll be there! Well have to get ready for PT now. I don't know if it really helps but at least I feel as if I am doing something besides just watching my arm swell and hand go numb. Oh and Bonnie you asked me about those hand warmers and I don't remember if I answered that question but they are called Grabber Mini Hand Warmers and they come in packages that you shake up at first then put in pocket and it will get warm. You can get them at Big Five or any sporting goods store. They have been a lifesaver for me cause this intolerance to the cold just kills me. I am a Maj player and the other girls get hot so the temp is always a little cool. I was ready to quit playing but I found these and now back at at it. Anyway, now I'm rambling and my pointer finger on my right hand is getting tired. Bye for now! (((H)))) Shari
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Hello: Thank you all for posting such good information. I am pre surgery after 16 rounds of chemo. Lump will be Dec 5 with rads to begin mid January - Monday thru Friday for 6 weeks. My tumor is at 2;00 left side, which scares me due to potential heart damage. This is going to be a long post, so I apologize.
I am an inquisitive, question asking, self proclaimed advocate. Since I live alone - widow for more than 5 years, I have to do it all myself. Please bear with me as I describe my other concerns:
30 years ago I was in a car wreck where my left (dominant) hand and wrist were damaged. 7 reconstructive surgeries followed, with 2 bones and some nerves removed. The ligaments and tendons were grafted together since there was shredding or what they call flap tears. After all these surgeries and months in various casts, I began therapy at a rehab place that had a hand unit, specializing in all kinds of hand problems. BTW, by the way, I had surgery performed by a hand specialist - a plastic surgeon who specializes in hands, who initially told me all he could do was make sure I had a hand and no guarantee of any function.
It took a year to make a fist and after another 3 years of therapy I had reached the maximum - 30% of what is considered normal in the dominant hand. Now that I have had chemo, neuropathy is present in my little and ring fingers. I fear for any kind of decrease in function, as I live alone and already have problems with opening jars and door handles, buttons, and anything requiring fine motor control. It takes me half an hour or more to sew on a button, for example, but I can do it. Although my reasons for limited movement, feeling, etc are not caused by the same as all of you - yet , it bothers me that no one has mentioned them as possible effects of radiation.
Wednesday I meet with the rad onco to discuss the dates and times to begin treatments - most likely mid January. Heart damage was mentioned due to left side but absolutely nothing about BP, which really upsets me... I do not want to be a doom and gloomer, but I need to know and want to know. 2% get it? Well, I am allergic to many medications, including scrub soap, chocolate, strawberries, egg whites, pollen and more --- so guess who would fall into the "adverse effects" category? And 24 hours after my last chemo I was in the ER covered from head to toe with hives.
Thanks for listening to me and for what you have already posted. I would get rads in Alexandria, Virginia, but had chemo and will have surgery at Georgetown Univ Hospital.
Hugs and Blessings, Nancy
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I just stumbled on this thread, and I have LE and BP. Right arm and hand, and I am a rightie. My chemo, stem cell transplant and radiation were 10 years ago. I have worn custom class 1 lymphedema garments and a jovi pak at night for the past 8 years. A few years ago I noticed I was losing strength and feeling in my right hand, and I now have tingling, burning, limp hand with out- turning wrist, and sensation that my right hand is going to explode 24/7. Very difficult to tolerate day-to-day.
I see a lymphedema pt once every 3 months because my insurance sees my treatment as maintenance. My neurologust put me on gabapentin 5 years ago, maximum dose, and I now realized that it was this med that was making my brain feel like it was being sqweezed. I have seen a physical medicine specialist who tried me on morphine, methadone, lyrica etc, all had bad side efffects. I told him good-bye.
I am being challenged by a bone spur-arthritis in my left thumb. I am now wearing splints, hard and soft, on my thumb. I cannot chop or cut anything on my plate. My children and my friends cut things up for me.
My story goes on and on and on. I had to retire early because of my disability. I live a full, puroseful life and I have lots of support. I have to ask 4 help more than I like.
I see a great chiropractor, massage therapist, lymphedema pt, hand therapist and an energy healer, who is one of my friends.
I am going to re read all your posts and take your info to my providers. I eagerly await more news from you.
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hi, nancy,
welcome to the most helpful, empathetic, and knowledgeable group you could find. none of us is in exactly in the same condition as the rest of us, but our situations are all closely enough related that we are able to understand each other well.
i am so sorry you have suffered such a long series of bad breaks (no pun intended). i am sure that living alone makes it all much more difficult. and, you are quite right to be concerned about the possible damage from radiation. my brachial plexopathy did not develop until 25 years after my radiation, but, i did not have any other damage to my arm beforehand.
my radiation onc tells me that they do radiation quite differently now. why not ask yours exactly what that means? they never mention brachial plex as a possible complication, but it is. i see you know about that 2% of us. well, when it happens to you, it's 100%. i would push him for more direct information than you're getting. after all, if a rad onc doesn't know the latest stuff, who should?
i also lost the use of my dominant hand, the right one. i understand the range from frustrating to impossible with so many minor tasks. perhaps making your doctor more aware of your total condition instead of just another lumpectomy would help. and be sure to ask about the sentinel node thing; tell 'em, be careful!
i wish you the very best of luck and fortunate outcomes, and do stay in touch with us all.
barbara-
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Hello, ronimom,
I'm really glad you found us, and so appreciate your sharing the outlines of your story. I hope in reading back over the thread you'll find helpful information, encouragement and maybe even some new hope. The thread has gotten really long -- I think I'll go back and read it myself! Looking forward to your joining our conversation.
Nancy, I'm so sorry about all the concerns you have to deal with, and I hope you'll get clear answers from your rads doc. In the meantime, I wondered if you've seen the magnet buttons? They sew on like buttons but they're magnets and are very easy to fasten. The Sansu website sells them (and purses with hand slings built into them) here: www.sansu.ca The snaps are fairly expensive ($10 for six of them), but they work really well and make life a wee bit simpler.
Be well!
Binney0 -
Thanks Barbara. Tomorrow I meet with the rad onco and want details. She comes highly recommended by the surgeon and several other patients, so I am confident I will get answers.
OMG, Binney... THANKS a bunch for that link. Wowwie, woooo peeee !!!!! I have many "hand helpers" and this has Made My Day. As much as I hate to say I can't do something, I am getting better at asking for help.
Happy Vet's Day -- and have a GOOD day, everyone. Nancy
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I had the rad onco visit yesterday and got all my questions answered. This woman is one of the 5 breast cancer radiologist in the area (whatever the "area" means) - very highly recommended by my medical onco and surgeon.
I phoned the surgeon office to see if they would use a compression sleeve after surgery and was told if swelling happens, they will refer me to a pt and they can decide if I need a sleeve... and that is not sitting well with me. And I have a follow up surgeon visit a week after surgery. Is there a generic type of sleeve that I could have on hand "in case" -- I do have several hand splints for when I need them for fatigue and weakness in my hand and wrist.
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Lefty, I reviewed the treatment plan with my rad onc, and he went over what part of the body will receive what part of radiation. The BP is in the same area as the supraclavicular nodes, so if you are getting that level of radiation, you will have exposure.
Many people with early stage cancers do not have the supraclavicular nodes radiated. I would assume this would translate into significantly reduced risk of compications. If you have questions of concerns, talk to your doctor and understand your treatment plan. And discuss your concerns if the supraclavicular area is going to be radiatied. With cancer, there is always a trade off between risks and benefits.
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Hi, Nancy,
I can see why that wouldn't sit well with you -- nuts! Once there's swelling it's a lot harder to fix and control than if you just take the steps you can to prevent it. If you can get anyone on your med team to give you a referral to a well-qualifed lymphedema therapist, that'd be a big help in getting baseline arm measurements, risk reduction tips, instruction in gentle self-massage you can use prophylactically, and advice about your own individual risks. And also a fitting for a compression sleeve and glove (or gauntlet). They'll need to fit really well, which is why "generic" self-fitting doesn't work well, especially the first time out. Once you have them and the fit is checked for correctness, you can use them for exercise or strenuous activity, travel, or any time your arm feels heavy or achy. Splints will not work for this, though you can wear them for other conditions over a well-fitted compression garment as long as they don't bind or provide a tourniquet effect.
Here are two web sites for finding well-trained therapists near you:
www.mylymphedema.com Click on the therapist locator and follow all the links.
For position papers from the National Lymphedema Network that you can share with your reluctant doctor, see the ones on Risk Reduction, Air Travel, and Exercise here: www.lymphnet.org
Shouldn't have to do our own homework on all this, should we?
Wishing you smooth sailing!
Binney0 -
Thanks for the info. I may be over reacting to the possibility of lymphadema, but I am the type to be prepared before things happen. Time to sit back and not obsess for a day or two. Monday is a new week and I will gather myself and see if a pt referral from my primary will help easy my mind.
Have a good weekend and thanks again for being here. Nancy
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Hi Everyone,
I just re-read most of your letters and I am so glad to have found you. I have learned to kind of touch type with my left hand only. I am getting better and faster. It's just that I am again over-using my left hand.
2+ years ago I decided to deal with my weight and get in shape. For 18 months I worked out 2-3 times a week with a personal trainer, and it was really helpful. My trainer held my hand around weights and helped me exercise my whole arm and it began to make a difference in the size of my right arm almost immediately. I also learned how to eat more protein and be less hungry and less apt to snack. All this has kind of enhanced my metabolism, or something. And I have lost 50 pounds since then, and can wear a size med-large sweater instead of the 1X I was buying to fit my arm and big waist. The bad thing is I have difficulty working out in any gym by myself, because I need so much help adjusting the equipment, moving things out of my way etc. And I hate to say it, but I am not even walking on a regular basis. The personal training thing was just too expensive, and I thought I would be able to go to just any fitness place and work out, once I knew what to do. Bummer!!
However, my arm and hand are getting smaller, still!!! But the pan and electricity beat on!!!
Believe it or not, I feel very normal and I go ahead and work at being nice-looking and sharply dressed in casual clothes, jeans and T shirts, sweaters. It is still hard to find a jacket or blazer or even a blouse that fits my arm. So I am mostly into sweaters, especially the short sleeve ones you wear a long sleeve t-shirt under. I like these because when I wear a long sleeve sweater I have a hard time getting a coat on. I live in the Pacific Northwest, and hate it when I have to struggle into and out of a coat. Oh, and forget about zipping a jacket up.
I laughed out loud when one of you came up with the answer "it was a trapeze accident" That is hysterical! I have tried saying "it's not mine," or I'm carrying it for a friend. I was the only one who thought this was funny.
I have found a couple things that help me around the house. The best thing is to lay out the rubber shelf liner rolls that are soft and mesh like. If you don't know what I mean, please let me know and I will go to the store and find out what they are called. They stick to the counter and I can steady a plate or a piece of toast and use my left hand to spread the peanut butter.
I am on my 2nd electric knife, and hold my right arm and hand behind my back. I like my Black and Decker electric jar and can opener. It sits out on my counter and most of the time, I can use it.
Anyway, it feels good to write to you all, my new friends. My thumb hurts and I am going to get ready for bed. Pleasant dreams, all.
Ronimom
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Hi. I stumbled across this list by accident, but signed up because after reading, discovered there's valuable info here. Not sure whether I have BP or am developing it, but will keep monitoring what you have to say, because I think it's very important.
Just want to pass along a couple of positive things that someone in the forum might find helpful. I developed lymphedema in my right arm post chemo, surgery and radiation for breast cancer. Arm swelled to one and a half times the size of other arm. Saw therapists who were good. Learned I could control arm to major extent with day sleeve and bandaging. Used off the shelf arm sleeves and gauntlets from Jobst and Juzo. Tried to bandage every night. HATED whole routine!
New fitter from Ohio contacted my therapist (in western MD), who was impressed by her knowledge. She met with some of his LE clients, including me. I now have two custom-made sleeves. For day, I have a sleeve made by a company called Gottfried Medical (http://www.gottfriedmedical.com/). They make both vascular and burn garments, and their fabric is very different from others on the market...lighter, airier, more comfortable...My fitter had silk fabric insert sewn into elbow area.
My second godsend is the Telesto Med-Tech night sleeve (http://www.telesto-medtech.com/). Others have posted about the history of this sleeve. I can only say that I've had it a few days, but it's so comfortable and flexible that I tend to wear it instead of my day sleeve when I'm home. I can type, cook, put on makeup, etc. It slips right on...No zippers (which I can't manage very well), machine washable, very, very lightweight. I had it made with a separate gauntlet, since my hand doesn't always swell that much and I need to take it on and off. This sleeve does a better job than the bandaging did for me and has made my life SO much easier and more comfortable!
Just wanted to pass this along to all of you, hoping that it may help some of you.
Judi
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hey, nancy,
you are not overreacting; it is always prudent to have plan B. sometimes even C. i love a picnic, but i always keep an umbrella handy. you are in good company. good luck next week.
barbara-
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Hi, ronimom,
I love your spirit! I also love your answers: "It's not mine," and "I'm carrying it for a friend." Had me cracking up here. But I can just imagine the un-amused response you get when you use it. I was at the mall with one arm wrapped in bandages, the other in compression garments, and a bulky compression vest that works great for the LE but makes me look like a suicide bomber. A feisty elderly man walked up to me and stuck his face in mine and said, "What happened to you?" I thought I was very clever when I answered right back with, "You should see the other guy!" But then he said, "I don't see how anybody could look any worse off than you!" And I decided right there never to use that line again!
So the trapeze line works for me too!I really appreciate all your hints for the day-to-day difficulties. It's those small things that seem to be so defeating. I had a beautiful, heavy wool cape that my mother bought for me years ago in Germany that would be perfect for you in the damp cold of the Pacific Northwest. I wonder if it would be possible to find one like it on-line?
Silfang, you sound so satisfied with your garments, and that's so cheering! It can take some time to find the garments that work best for you, but it's a relief when you do. Hope it never changes!
Barbara, YOU are good company!
Hugs all around,
Binney0 -
Greetings Ladies,
I had a PET Scan today, and requested an EMG for my left arm.
I am tired of my blouses and jackets hanging off my left side, not being able to brace myself or able to hold more than one item at a time. Having two working arms/hands are so important!
Thanks for letting me vent...
-KK
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hi, kk!
good for you! i am tired of exactly the same things as you....and i'm sure a lot more than that, if we really started listing. i can't wait to hear what they tell you. i am actually getting my hopes up here.
i had such a frustrating morning, trying to organize only 11 years of photographs, some in the basement, some in cartons on top of other stuff, so i can't reach them, some stuffed in envelopes and old boxes, upstairs in the bedroom closets, and trying to get them all on the dining room table. and i have it open, all 4 leaves! this is a tough enough job with 2 hands, but i am sure you know just how maddening that can be with only one. and is that one dirty!
boy, i sure hope your guys come up with some answers for you, because i have to get this mess off the table before thanksgiving!
barbara-
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I often wear a splint on my left dominant wrist due to multiple reconstructive surgeries from a drunk driver almost 30 years ago. When asked what happened, I sometimes snap back (depends on my mood, if you get the picture): "Why do you ask?" and or " what happened to YOU? " Other times I say something like, too hard to talk about or you do not want to know.
I did convince the surgeon for a le therapy evaluation and consultation and fitting for a sleeve prior to surgery on Dec 5. Now I wait for the appointment. Since I only have 30% of normal function in that hand and arm, I am looking to preserve as much range of motion and lack of pain as possible. Not a lot to ask for is it???
Barbara, I not only have a mess on the table, all but one chair has stuff piled on them. Good thing I am not the hostess for Thanksgiving !! But it might be a good idea to clean stuff off before I have surgery. Keywords -- "might be a good idea" !!!!
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Nancy, LOL! Those keywords will get you every time! Always leave yourself an out -- isn't that what they say about defensive driving? Same thing with defensive cancer treatment.
Glad you got the referral. Let us know how it goes!
Hugs,
Binney0 -
Hi Friends,
I am in to practicality, and it will be helpful for me to know what adaptive devices work best for you.
I love to read big, fat, library books, and I just found a great lap book holder at Barnes and Noble. I paid 39.99, and just found the same identical thing at amazon.com for 29.99. It is the Tranquility Zone by SPI Lapdesk with Light. It works the best of everything I've bought and tried. So now I am going to return mine to B&N or get a refund and or matching price.
If this helps anyone, great!!! Please share what devices work for you.
Ronimom
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Hi Everyone!
I just caught up on the site and want to welcme all the newcomers! For a while...it was just us chickens. Not really, you can't be a chicken and deal with what's on our plate....of course, no pun here. Ok..getting serious. First of all to ronimom and all others who are interested. I havefound the perfect device for readers. It is made by Kindle and you can find it by going to amazon.com, click on electronics and click on Kimble. Yes...it is a little expensive but for those of us who spend 50 bucks on a BN card and then a book or two a month, well do the math. Even my Costco books add up. Lat night we had an HOA meeting and one of the girls from book club brought and let me play. I am truly hooked already. the nicest thibng for me about it is that you can read in bed (I am a huge bed reader) and just click to turn the page. since I lie on my left side (can;t lie on right), turning the page with myLE/BP right arm is a huge task, hense I find myself not reading like I usd to. This gadget,you just click and the page turns. anything amazon has, you can order for $9.99. So thre's the scoop on that one. I am also getting a voice ativator that types but I don't know thename of yet because my daughter has it and will give it to me tomorrow. I am down to putting a heater at hand level so that my BP/LE hand doesn't freeze up. I have a terible intolerance to room temperature under 74 degrees. Along with the contsantarm, numbness, tingling, shooting pains under fingernails, weakness and clumbsiness of right hand....everything else is ok! I am taking Lyrica and that seems to help some of the nerve pain.
Thank you silfang for your garment tips. I have been wearing Juzo during the day and Jovi at night. Well..gotta go cause busy day prepping for man'ana! Hang in everybody...we're in this together! Sorry about mistakes but am typing with left hand and one finger on right. Happy Thanksgiving everyone!
((((H)))) Shari
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Hello all. I truly appreciate those of you who contribute often to the forum. I have been trying to get back to normal or rather accept my new normal. Not being very successful and mostly due to the unremitting pain of my RIBP. I don't know how to move on. I had a very rough time with moodiness on lupron which required effexor to cope and once I had my oopherectomy and could come off the lupron I wanted off of all chemicals. I am still taking tamoxifen. I know that the constant pain is really making it difficult to function, but I don't want to take anything that messes with my head. I also am an intermediate metabolizer of tamoxifen so I can't take anything that inhibits the cyp2d6 pathway which is most of the antidepressants that work for pain (lyrica, cymbalta, etc). I have very mild lymphadema so don't wear garments. Does anyone have advice for non-pharmacologic pain control? Have you used acupuncture? Do you worry about lymphedema with it? Does weight loss or weight lifting make it better? Right now I can't type with my right hand. I can't open jars or turn keys and have trouble with buttons. I don't mind the weakness as much as I do the numbness and burning pain. Anyone able to summarize for me what they have done for the RIBP that has worked? I'm glad that you are sharing the lymphadema tricks too but bigger issue for me is the RIBP pain. Thank you all for sharing your success at living with this. Erica
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Erica,
I have found this liver enzyme table helpful
http://medicine.iupui.edu/flockhart/table.htm
(I'm not having any real side effects on the tamoxifen, so I'm going to ask for the metabolizer test.)
There was an article in Family Practice News about a physician who was using ear stimulator accupuncture for pain, with good results, and it wouldn't involve needles in arms with LE
http://www.familypracticenews.com/article/S0300-7073(08)71259-3/preview
Article Outline In 2005, family physician Robert Bonakdar was searching through PubMed in preparation for a lecture he was about to deliver to physicians on the nonpharmacologic treatment of chronic pain.He came across two randomized controlled trials that described a disposable device that provides 1 Hz of continuous electrical stimulation to auricular acupuncture points as a treatment for chronic cervical pain and chronic lower back pain.“They showed that these ear treatments helped after 4 weeks of treatment,” recalled Dr. Bonakdar, director of pain management at the Scripps Center for Integrative Medicine in La Jolla, Calif. “I was intrigued.”He contacted the gadget's inventor, Dr. Josef C. Széles, a vascular surgeon in Vienna, who traveled to San Diego and showed Dr. Bonakdar how to use the device, which is called pulse stimulation treatment (previously known as IS-3 and P-STIM in Europe). Since then Dr. Bonakdar has treated scores of patients with pulse stimulation treatment (PST) and has found it particularly effective for patients with shingles and other forms of neuropathic pain.“There is a central sensitization phenomenon where the brain takes over and amplifies what would otherwise be a normal healing process and makes the pain worse,” Dr. Bonakdar explained. “That happens mostly in neuropathic pain and quasineuropathic syndromes such as fibromyalgia, phantom limb pain, or complex regional pain syndrome. This is a way to give a benign signal to redirect the brain.”Approved by the Food and Drug Administration for acute and chronic pain in 2006, the PST is a battery-powered controlled nerve stimulator that weighs about 7 g and is fastened behind the ear by an adhesive backing. Tiny titanium acupuncture needles are placed in three points of the outer ear that are considered to be indirect measures of nerve activity. Electrodes are then attached to the needles, which deliver 1 Hz of energy 3 hours at a time over the course of 4 days.“From an acupuncture standpoint, 1 Hz is the universal endorphin releaser,” said Dr. Bonakdar, who also performs traditional acupuncture and electrostimulation. “The patient feels a tapping for 3 hours; then PST goes off for 3 hours. From a neurological standpoint, this is really percutaneous auricular nerve stimulation, or PANS. The intriguing part is, there is nowhere else on the body besides the ear where I can so easily access the vagal nerve.”Most patients need 4–6 treatments of 4 days' duration (each requiring one of the devices) to achieve good results, which Dr. Bonakdar defined as achieving 33%–50% reduction in their pain based on traditional pain scores such as the Brief Pain Inventory. In his experience 60%–75% of patients achieve about a 50% reduction in their pain after 4–6 weeks of treatment.Others, including a woman he previously treated for pain related to shingles, achieved near-immediate results. Before treatment she was taking 18 narcotic tablets per day for symptom relief. The day after PST, that dropped to just 4 tablets per day. “Over the next 4 weeks she went off the medicines completely,” Dr. Bonakdar said.“With traditional acupuncture, you don't often get that immediate and strong effect. That's happened enough times to [make me think] we're hitting a direct circuit right from the vagal nerve to the brain stem with the PST.”In mid-2008 Nu-Life Technologies acquired the distribution rights and license to the patents for the PST (www.pst4life.com). In an interview, Nu-Life's CEO, Jim Robertson, said that the device will be available to physicians in the United States in October 2008, but the company's initial focus is to offer it to existing pain clinics that already have a high base of patients. The business plan analogy he used was being “like a McDonald's inside of a Wal-Mart, where we put a fully turnkey package inside or attached to large pain centers.”Mr. Robertson anticipates the cost of each PST to range from $350 to $425.Dr. Bonakdar is a member of Nu-Life's medical advisory board. He receives no compensation for his role and has no financial interest in the company, but Nu-Life does supply him with PSTs to use in clinical practice.Dr. Széles is working with Nu-Life to develop the next-generation PST.Accupuncture is considered relatively effective for pain, but is very practitioner dependent--you need to find someone good you can work with, and they shouldn't be putting needles in your bad arm.
I don't have brachial plexopathy, but I've definitely taken care of people with neuropathic pain: it's a hard thing to treat--people try TENS units, the usual meds you mentioned--neurontin, low dose tricyclic antidepressants, dual reuptake anti depressants, other neuroleptic drugs, and pain management centers run by anesthesiologists will do nerve blocks.
Totally anecdotal, but in the book "Lopsided", she got relieve from her neuropathy from chemo with B6--but it's toxic at high doses.
I hope you find some relief.
Kira
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aww, shari,
i got all excited when i read your post on that kindle thing. so i look it up, thinking i am going to find a device that will magically turn pages for me while i read a regular children's book to one of my grandchildren, thereby enabling me to wrap my good arm around him. wishful thinking again. but, i must admit, quite interesting, and great for bedreading.
however, if anyone out there knows of a magical device that will turn pages with a click, maybe, while it is attached to the three bears, let me know. (where are all those inventors who are always looking for a novel idea when you want them?)
barbara-
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