radiation-induced brachial plexopathy
Comments
-
About eating and holding yogurt with one hand; I have no idea how you manage that! I salute you! However. I am also a yogurt lover, Greek, preferably, and I put the container in a shallow bowl, just a little bigger than the container. I hold it steady between my knees.......do not try this in a restaurant....and the container stays in one place. I can even mix the strawberry into the yogurt this way. The secret is in finding the right size bowl.
0 -
Glad to discover all of the information in this thread. I have not posted in a while, but continue my daily struggles with lymphedema in my left arm, breast and trunk. I have new issues which concern me. Of course, by coming here I see they are familiar to others. I have been experiencing a pins and needles sensation in my axilla and upper back for a year now. It progressed to a pain in the axilla region if I move the wrong way (sometimes when I am driving). It's like something has caught. I have relayed the info to anyone that will listen (oncologist, surgeon etc) I was sent to see my LE OT. He worked some of the fluid out of my upper back and it helped somewhat. He said he did not think it was lympedema, possibly nerve damage or scar tissue. My oncologist has offered lyrica, but otherwise just seems not concerned.
Now, I am having trouble tolerating compression garments. The bras end up making my shoulder hurt to the point I can't sleep. The sleeve hurts my elbow. A new sensation has started in the muscle of my upper arm. It will tingle, then my forefinger and thumb go numb. It seems from reading these posts that it could be RIBP. The question is where do I get help? I do not want more meds....the femara is enough of a struggle. I have found swimming helps tremendously.
On a side note: Had to give up my shallow water aerobics because I have tendonosis in my ankle (I suspect due to the meds I have taken for LE related infection) Surgeon wants to do surgery, but I think I am going to seek a second opinion there. Right ankle and left upper body....I have accepted my new normal. I am just determined to make the best of it. Nothing annoys me more than when my oncologist (actually the NP-I never ses him) look at me and say "Well, you look great"
Glad I know where to find people that have answers, and understand.
Tina
0 -
Hi Tina, I'm really sorry to hear about this. I see a physiatrist (medical doctor of rehab medicine) for my LE and brachial plexus neuropathy (BPN). My physiatrist diagnosed me based on EMG, MRI and symptoms. Depending on the situation, he uses a combo of various drugs, rehab (OT, PT and LE), compression, and adaptive devices. Since LE and BP evolve over time, even within a person, management will change.
My BP/LE seems to be evolving. (My doc believes that this is because of progression of fibrosis in lower branch of brachial plexus.) For the past 7 or 8 weeks, I've been struggling to get a LE hand flare under control. Despite bandaging 23/7 and increased MLD, no success.
For the last few nights, a half an hour after going to bed, my fingers become completely numb (I can't feel them at all) and then start burning. (Qualitatively the pain is like when a body part "wakes up" after "falling asleep," only more intense and it lasts for hours.) When I take the bandages off, the numbness and pain subsides after 30 or 45 minutes. Alas, my hand balloons up without the bandages.
I could use advice from people wth BPN and LE on bandaging tricks to manage swelling without aggravating neuropathy. Materials? Layers? Placement of bandaging? - KS1
0 -
Thanks KS1. I will seek out a physiatrist. I have the same questions as you regarding how to manage bandaging/compression without aggravating neuropathy. The swelling in my arm is not really bad, but arm compression really hurts my elbow-it is always swollen and tender. My biggest problems with swelling are in my breast and upper left trunk, especially under my arm and in my back. I really need the compression bras to keep it under control. But, they really seem to exacerbate the shoulder pain. I'll keep checking back to see if you get any good info. Tina
0 -
Tina & KS1,
Following your posting with great interest. I too am interested to see others response. My LE has evolved to include nerve, shoulder and muscle pain. Cannot tolerate compression on some days. Upper arm, shoulder, truncal & breast involved. Never thought of possibility of LE evolving, but that's what's happened. Doing gentle MLD twice a day, LE exercises as tolerated. Re-grouping with my PCP & LE therapist next week to see if they can come up with any good ideas. Not having any numbness, so haven't thought of this as RIBP. Hope others will chime in here.
Deb
0 -
It's been a long time since I've posted anything specific about myself, or to anyone else, on any of the forums... Other than various articles of interest to share.
Getting back into it has been difficult emotionally for me - both my parents passed away last year. First my Mom, in July, followed in two very short months by my Dad, in September. This was more difficult than I had ever imagined it would be. My Dad would love to read anything I wrote. He would read them out loud to my Mom, as she could no longer see. Dad would share them with anyone he would encounter. He always told me he was proud of me. So, whenever I start to write, I think of that. Up until now, that was holding me back. No longer can it be my excuse. Instead, it will fuel me.
The day to day work load has taken its own toll. I was fortunate with my employer and management regarding my special needs. That actually lasted about a year... Changes in desk setup, changes in work hours, working mostly from home. I have now gone on full disability. I was a "worker bee" pushing through the days and evenings. Unfortunately, it began to take me 12 hours to complete 8 hours of work. The stress becoming more and more concerning. It's taken me several months to get used to not forcing myself beyond capabilities. I have a new stress, and that is $. Disability only nets about 50% of what I had been able to earn. Sad. But we are working through it, making changes, and making it work.
Enduring the nerve pain, tingling, electricity, numbness, weakness and overall discomfort is what we do, 24/7. It is down right miserable. It sucks. We try hard to not be as visibly miserable to others, as we want them not to suffer along with us. We want them to want to be close to us. We want to be able to do the things we loved. So we find a way. Being miserable and defeated does not invite many people to remain close. We want to be happy. For the most part we are. We want to be "normal" again - like we were before. That's not gonna happen. I understand that, but I don't like it. As none of us do. The Internet has given us many avenues to obtain information, and very importantly the ability to find others who are enduring the same miserable symptoms as we do. Wow... We are not alone! We have others we can vent to who do "get it"!! I can't imagine how difficult this could have been for people 25 years ago.
I would love if we could somehow share our new found disabilities and physical feelings with our medical care givers, employers, insurance companies, our government, research grant holders, family, friends, etc., who truly don't understand how this type of nerve damage feels. If we could share exactly what we are feeling with them, so they could have a true sense of how this affects us, then they would "get it". Just share those physical feelings with them like a Vulcan "mind meld" for a short time. Brilliant!!
In another forum, I read from a woman who did not have BC. She is a victim of soft tissue sarcoma. She has RIBP from her related radiation treatments, and found a thread to post for support. Shows that radiation damage is not only affecting BC or Hodgkins Lymphoma survivors. And it adds to the many of us who are looking for help. Looking for answers. Looking for changes for future treatments. There must be some way the Brachial Plexus can be preserved throughout radiation treatments. There must be some way to ensure our lives are ridden of the cancer, AND ensure the life saved, can survive with the highest quality possible.
The more collective voices we have, the louder we become. The louder we become, the more opportunity to be heard.
My Oncologist's PA talked with me the other day. We discussed my issues and damage from the chemo and radiation. She, recognizes the need for continued care of the survivor. She told me that this need is finally escalating. And that she would love to be a part of it. Is that not the best news!! Think about it, a clinic or Dr we could go to after the Oncologist turns us loose as a survivor. Someone who understands a "cold" for us is different then all other patients coming into a primary care physician. Someone who is extremely knowledgable of cancer survivor needs. Incredible! I believe we are making headway!
I was asked to write a short story for the Memorial Sloan-Kettering Bridges magazine, regarding my visit to the Rehab Center for survivors in August 2011. Here it is, in the Bridges - Spring 2012 edition.... Page 7, titled Surviving Survivorship. :)
http://www.mskcc.org/cancer-care/survivorship/newsletter-survivors
I hope everyone is doing well, and fighting the fight.
Stay Strong,
Cindy0 -
Cindy,
I am so sorry to hear about the loss of your Mom and Dad. My heart goes out to you and I hope that you have friends and family to help support you through this difficult time. Hearing your voice is a gift to all of us and I appreciate your generosity in sharing your story.
Very exciting to hear that you may have the opportunity to be a part of creating a survivorship program. Lord knows there needs to be more focus on survivorship and better resources to address the needs of survivors. Let the fight continue!
Deb
0 -
Cindy, I'm so sorry for your loss -- what a blow, and in such a short time frame! THANK YOU for coming back and reporting in -- it's always so good to hear from you. Will you and the onc's PA be meeting to brainstorm? Please share any ideas for advocacy with us -- this needs to be more than a single local development, and there are women here from many parts of the country.
Gentle hugs!
Binney0 -
Absolutely! However, it was just a discussion.... Nothing solid mind you.... And she is only indicating she would be interested in that field. I told her I'm on board if she pursues. We'll see... But at least they are becoming more aware of this need for survivors.
0 -
Cindy, don't leave it up to her to pursue it. Why not offer to meet with her and anyone else she knows who is interested at your cancer center to talk about ways you can make simple changes there -- even something as simple as a post-treatment questionaire patients can fill out at each visit noting any new or on-going problems. Many patients give up on bringing these things up, so they're never addressed or even recognized.
Just a thought....
Binney0 -
In Paris, there is an ongoing phase III clinical trial of the combination of pentoxifylline (trental), tocopherol (vit E), and clodronate (an oral bisphosphonate)for the treatment of partial RIBP:
http://clinicaltrials.gov/ct2/show/NCT01291433
When I asked my radiation oncologist about the trial, she said she would write the RX's if I am game. Given that it is the only RIBP game in town, I figure I might as well try playing.
Interestingly, a few years ago this same RO was skeptical about trental + vit E for the prevention of radiation fibrosis. KS1
PS Clondronate is not available in the US, but it is available from Canada by with a US RX.
0 -
I also wrote to the Drs in France regarding their clinical trial. We corresponded a few times, and unless I was in that same area to be monitored, they could not include me in the trial. But they did share with me the ability to obtain the Clondronte from Canada. I would have been willing to spend a few months in France if I would have qualified. She told me my RIBP was too severe for their study, but I could try the Clondronte from Canada.
0 -
Hi Cindy, I thought about you when I read the study, and my heart sunk when I realized that your RIBP is too severe and long-standing to qualify. That said, maybe it is worth a try. If you're at risk for osteoporosis, a little clodronate might not be such a bad thing....
0 -
Thank you! I'll try it.
Ronimom
0 -
Has anyone had any symptoms like the feeling you are having strong tremors in your affected hand.... But when you look, your hand is not moving or shaking? But inside it is shaking strongly, as if you are actually trembling? I've had this for a few months, but minimal. Now it's way more prominent in strength of tremor and occurrence.
0 -
My fingers jitter or twitch rhythmically. Sometimes the twitches are big and sometimes snow, but I think they are always visible
0 -
Hi Erica
I stumbled across this website having listed symptoms on google and trying to do some self help. Your post was the first I read and for the first time I realized that I was not alone with this problem.I too am a Breast Cancer survivor of eighteen months which have been a continuing battle. I couldn't believe what I was reading and passed your post over to my husband asking him to please read the post without explaining. His comment, "this is you!" I am not on avistan but Letrozole. I also have had pneumonitis from radiation and still have respiratory issues. I could not work out the arm and hand issues because while I have a moderate amount of lymphedema I was informed this was not he cause of the problems. My lead carer suggested that I had a carpal tunnel issue developing in my hand. Now I can relate to all my symptoms it has given me some closure. Thank you.0 -
Glenis, hello, and welcome to breastcancer.org.
Really sorry for the reason you came looking for us, but glad you found us. I don't know how far you've read though this very long thread, but here's a site with some specific tips and ideas from other women with RIBP:
http://www.stepup-speakout.org/Radiation_Induced_Brachial_plexopathy.htmHave you found a good lymphedema therapist? It's a help to continue with lymphedema self-care, even though that's not the underlying problem. It eases the discomfort, at least, and helps to prevent serious infection risk (nobody needs to add that to everything else!
)Please tell us how we can help!
Gentle hugs,
Binney0 -
Hello Binney thank you so much for responding to my post. It is great to know that there are others out there who have similar issues but it also makes one take stock and remember there are many worse off. I actually saw my lymphadenopathy physiotherapist today to have better garments fitted and I spoke to her regarding brachial plexopathy. She was very aware and is writing to my GP regarding treatment (meds) which may well help the pain. She was also realistic and told me that because of the damage to nerves there was no "fix" and that it could become worse. I find it much easier to deal with these issues knowing that symptoms have been documented by others. I live in a quite isolated area of New Zealand so I thank all of you people who write posts. We have an excellent cancer society in NZ but population size means that there are only specific support groups in our larger cities.i appreciate the contact with survivors of breast cancer as there can be greater empathy. Cheers Glenis
0 -
I just found this thread about radiation induced brachial plexopathy. I was dx last year - my onc didn't seem to be very aware of the condition so it took work on my part to find an answer to why I'm losing function in my hand. I first started noticing symptoms about 12 years post radiation to my supraclavicular nodes and brachial plexus. I would be very interested in hearing from others about anything they've found that has helped. I have had some luck with OT/PT to strengthen my shoulder and to strengthen the muscles that still work.
0 -
Grayson, hello
I'm really sorry you're dealing with this. Looking back I see you were doing all kinds of tests as long ago as 2007--took a long time to get a dx!
What a long journey you've been one!So glad you have good therapy available, though. If you don't mind sharing, I'd love to know what-all you're doing for therapy. Are you able to keep the lymphedema in good control? Are you having to fight with insurance for the on-going care you need.
I do hope others will be along to share--it's been awfully quiet on this thread for a long time!
Gentle hugs,
Binney0 -
Hi, Ladies,
I actually replied last week, but the Computer Devil stomped, and in a second it was all gone. Took me a week to get over it.
I also have RIBP, starting 25 or so years after lumpectomy, but not properly diagnosed for more than 30 years. I had no idea what it was and started getting all kinds of therapy for weakness, muscle fatigue, and that old favorite, carpel tunnel. Then came the LE, starting as a small lump in the affected forearm, which also didn't get diagnosed quickly. Therapist was not helpful, continued having me squeeze balls.
To shorten this, the BP actually caused the LE, which I have pretty much under control. The BP, however, is ongoing. It started as yours, with tingling, etc, until I could no longer close my hand. Nor can I bend my elbow. And it is creeping up my upper arm, on its way to my shoulder. I can still shrug, but not as high as my other shoulder. I have no idea where this is going and no one seems to be able (or willing) to tell me.
I'd like to know what exercises you are doing to keep what you have. I'll try anything (except squeezing balls).
Thanks for sharing,
Barbara-
0 -
Hi All,
I cannot get comfortable in bed any more. The only position I can get in is lying on my left side supporting my affected right arm on a pillow. Most mornings I wake up with significant shoulder/neck pain right side. Thankfully I have a relax-the back recliner chair, and I sleep several hours in it, but cannot stretch out in bed comfortably for more than a few minutes. Is anyone else dealing with this?
Thanks,
Ronimom
0 -
Okay, checking out this topic from another one dealing with similar symptoms. I can relate to all the above issues. Especially the tingling, shooting pain, weakness and continuous aching. I also sleep with my arm resting on a pillow.
I have had an xray which showed degenerative disc disease in my neck. It is believed that this is affecting a nerve that is causing these symptoms. Last night I had an MRI to check further. It will be intesesting to see what the results are. I know that my acupuncturist believes that all the scar tissue and extensive radiation is aggrevating the condition. Perhaps it is brachial plexopathy.
0 -
I've been through a lot of treatment styles to help relieve the constant nerve pain from the RIBP. Which equates to a lot of high hopes/expectations that this will surely be the thing that alleviates the pain. And then, it doesn't. I am fortunate that i have many people who want to help and want to provide me comfort. I've even been given free treatments by some wonderful people who are truly trying to help. I appreciate it greatly. What has been the most help for me is good physical therapy that includes safe stretching and flexibility technique, along with as much massage therapy as I can afford. Nothing takes the pain away, but those 2 things make my body feel better. And very importantly, I feel like I am helped by them physically and mentally. The only drug that has helped me thus far is Cymbalta. It lessens the intense stinging in my arm and hand. If I don't take it, I definitely feel the difference. Additionally, I take a muscle relaxer (Methocarbanol) to help with constant spasms in my arm, neck, shoulder and back. As you all know from your own daily struggle, how difficult and frustrating the loss of muscle and nerve damage pain can be. It is quite damning. Each of us may find other techniques are helpful, and since we are all sharing the same type of nerve damage, we will all be at different levels. What works for me, may not for another, and vise versa. So try different things and share your experiences. I only caution to be aware of those who are taking advantage of our suffering by promising they have the "cure" or magical "fix". I like to research before I try stuff, and a good source to do so is http://www.quackwatch.org/
As always, stay strong - Cindy https://www.facebook.com/CancerTreatmentSurvivorship0 -
Hello, I know that is has been ages since I last posted...And I cannot remember Mom's password so I had to create my own account. Amazing how this group has grown. Sad that it is growing, but I remember the joy Mom and I felt when we finally found you all. Tomorrow marks the first anniversary of Mom's passing. A day does not go by that I don't think of her, and you all are on my mind daily as well.
My own life has not been without its own drama. All was going well..we welcomed identical twin boys and a little girl in the fall, they are the new generation of our family. Although Mom missed their arrival, we have all enjoyed watching them grow.
On the 4th May, I was asked to speak at our relay for life about Mom. That night a gnat flew up my nose. Although I thought I got it out, I woke up the next morning with a headache. I thought it was my sinuses and treated it as such. The headache got progressively worse and by Monday I was in acute pain. I was able to see my family doctor, and she thought I was having a migraine. She arranged a base line MRI. She was able to get it on Wednesday. After the MRI my dr showed up at the hospital and told me that they had found a small brain tumor. I heard 3mm. I was able to get into one of the top Neurosurgeons the next day, and learned that what I thought was a small 3mm tumor was actually a small 3.5 cm tumor. His concern was that it was pressing on my spinal cord, and that the tumor that showed like this usually was from a metastases. So...On the following Monday, I was having brain surgery. This journey has been truly blessed all the way. The tumor turned out to be benign, atypical meningioma who II. Dr B was not able to remove it all so I will be having radiation to shrink the remainder. I am doing well, and I realize that the journey I experienced with Mom helped prepare me for my own journey. There is still a chance that the radiation could leave some damage to my brain, although there is a 44% chance of the tumor growing back if I don't have the treatment and that could damage it as well.. I have given this whole journey over to my God, in doing so I have been placed in the hands of some amazing caregivers. I know that worry and speculation will not change the outcome. I can only imagine the lives my journey will touch, and hope that it enriches them for the better. Each of you have passed on courage, and determination as a gift to all who read about your journeys. Thank you for sharing. Holding you all in prayer and gentle hugs.
Terri
CAEarl's Daughter.
0 -
Here's something we can do to help get some attention..... LIVESTRONG cancer survey. Also, check out OVAC - One Voice Against Cancer. http://www.ovaconline.org/ They take the information we share via surveys and such, and use it to present to Congress for government funding of Cancer Research and Patient Aide. They are an advocate for us all in the US. Here is the link to the survey http://www.livestrong.org/cancersurvey. Stay Strong, Cindy.
0 -
Terri, I've thought of you so often, but never dreamed all this could be going on. Do I dare to say you actually sound good? You do! When do you start radiation. I'll pray, with joy, for protection.
How is your son? And the business--I hope it's not too much of a worry for you, and that you've found people to help with that while you go through treatment and recovery.
With God we're strong, even when we're weak. Looking forward with you to all his blessings for this journey.
Hugs, prayers,
Binney0 -
OMG.. After five years the side effects continue to haunt me. I do not know whete to turn. My BS is not who i want to see again, as well as my Rad.Onc. They lie and hide facts which really pisses me off.
Im 95% sure ive developed BP in radiated side, all the symptoms have developed over a year to a point where l need help. Where do l go? Should l call the cancer center and ask for a referral to a le therapist?
I just want an eval for le and bp. Dont want the bogus, costly visit where they say maybe, maybe not, try this or that and come back & pay more co-pays before we send you to the proper help? I dont think asking for an eval should be so hard to get.
Im clean on mammos but have had discomfort on bc side ever since surgery.
Saw ortho, said it was not rotator cuff. Pain management Doc has sent me to an addiction MD to get off pain meds.
Seems like there isnt a real doc out there who gives half a damn. Im miserable.0 -
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,
Cindy0
