Posted on: Jan 9, 2008 10:33PM, edited Aug 30, 2009 01:55PM by Erica35
Looks like I'm special as I'm one of the <2% of patients who get this complication. Really tired of being special...
I don't want to scare anyone off of radiation....it's an important part of breast cancer treatment. There are risk factors for my complication such as supraclavicular and axillary radiation, high rads dose, young age, and concurrent chemo. If you have had paresthesias (burning, tingling, etc), numbness, swelling, or weakness in your radiated side could you respond to this? Since it is so rare, there is not much literature for me to go on about my prognosis. Looking for someone else with experience. I think it might be related to my having avastin after radiation.
Any of you other gals in the avastin treatment after radiation have any problems with arm pain, hand paresthesias, hand or arm weakness?
I'm really struggling through this freaking marathon, after having surgery, 4 months dd chemo, more surgery, radiation, 5 months avastin/xeloda continously since July 2006 I am now facing multiple complications. First I had a lung injury from the interaction of avastin with radiation which left me breathless and unable to exercise for a few months (started beginning of October, now resolved). Then I had this arm problem which started the end of October with burning in my hand and has now progressed so that I can't button things or open jars or cans or do anything that requires fine motor skills. Also my fingers are numb along with the constant burning and I have arm pain that feels like a vice. Apparently, there is no treatment for radiation-induced brachial plexopathy so this is a new disability that I will have to deal with for the rest of my life. Searching for the energy to meet this new challenge....
Posts 571 - 600 (623 total)
Jan 30, 2014 09:49AM Binney4 wrote:
barb, a knowledgeable therapist can be a great help in helping to maintain strength and range of motion for as long as possible. A good LE therapist also needs to be involved, as a dependent or painful arm needs extra help to keep the fluid moving. And an occupational therapist can help with adjustment to specific activities of daily living when one arm is disabled.
The real trick is getting your insurance to see it that way, since they want to see progress toward a "cure" in order to continue to fund it. So that part might take some appeals in order to get what you need.
Feb 2, 2014 02:23PM Dorian wrote:
Barb, Yes, chemotherapy can cause shoulder pain. I am currently receiving chemotherapy for a BC recurrence and was recently diagnosed with brachial plexopathy. They think it is the result of inflammation caused by my chemo drugs (Gemzar/carboplatin) rather than the radiation I had in 2001 because I only have pain for a couple of days after I have chemo. My radiation oncologist says that if the BP was caused by radiation, the pain probably would be continuous rather than sporadic. We'll see what happens when the chemo ends.
Mar 3, 2014 02:32PM lionessdoe wrote:
Radiation therapy to the chest, neck or axillary region for the underlying tumor may result in brachial plexopathy. Factors like radiation dose, technique and concomitant chemotherapy play a vital role in the brachial plexus injury. Radiation dose < 6000 cGy less likely leads to plexopathy. The interval from the last dose of radiation to the first symptom of plexus disorder is usually a mean of 6 years. Breast carcinoma is most commonly associated with radiation plexopathy (40-75%), which is followed by lung carcinoma and lymphoma.
Limb paresthesia, swelling, and motor weakness are common presenting complaints. Pain is not a consistent feature of such plexopathies. Unlike metastatic injury, radiation-induced plexopathy has a predilection for the upper trunk and not for the lower trunk, probably secondary to the protective effect of the clavicle and relatively shorter course of the lower trunk through the radiation port. Endoneural and perineural fibrosis, occlusion of microvasculature and direct injury to the myelin sheaths and axons are the proposed mechanisms for radiation-induced plexopathy. MRI may show thickening and diffuse enlargement of the brachial plexus without the focal mass, but does not always differentiate metastatic and radiation injuries. Radiation fibrosis in the chronic form appears as hypointense on T1WI and T2WI. Nerve conduction studies in the early stages may show features of demyelinating conduction blocks. Unlike metastatic plexopathy, EMG studies in radiation injury show spontaneous activity in the form of myokymic discharges.
It has dismal prognosis, with the patient requiring palliative care depending on the distressing symptoms. Lymphatic bypass surgery to relieve lymphedema may rarely be required. The patient is advised to continue rehabilitative measures.
Mar 15, 2014 05:19AM , edited Mar 15, 2014 05:27AM by LindaKR
Hmmm, 6 years doesn't seem right, I thought I read elsewhere 6 months, not sure though!
Apr 11, 2014 05:24PM barbaraellen wrote:
I have been absent a long time, but now I am back, and catching up on the latest posts. I can throw my 2 cents
in here about the cause of BP. I never had chemo, just radiation, and 20 years later the first symptoms of
BP showed up. I have always heard that it is caused by radiation. I am heartened to know that the percentage
of patients who develope BP is not 2% or 4%, as I always read, but increases greatly to amost half of all patients at 20 years or more! I feel less freaky and not nearly as isolated as I did for years.
Apr 11, 2014 06:24PM hugz4u wrote:
Barb. thanks for popping in. I have been lurking on this thread for awhile and find it so interesting...not that interested in myself contracting this condition though... but one must get educated on stuff like this as MD's just not that smart with aftereffects of BC.
How have you been doing and are the symptoms stable or getting worse? Dang postcancer stuff.
Apr 11, 2014 07:17PM Binney4 wrote:
BarbaraEllen, so good to hear from you! 20 years later is truly a nasty "surprise," but it sure does explain how an "average" of six years could be arrived at. Would love to hear how you're doing. Still traveling?
Here's my latest more-questions-than-answers article on new hope for paralysis caused by lost nerve connections:
This is not about RIBP, but about spinal injuries. May be totally unrelated, but I'm working on tracking down the study author, and I'll let you know if she answers.
May 1, 2014 12:50PM barbaraellen wrote:
Good to be back. We were lucky enough to escape Chicago's horrible winter, but now we are headed back to a comparatively balmy 54 degrees. Interesting article about spinal stimulation. Please let me know if you find out anything that could be helpful to us RIBP-ers.
Hugs 4 (cute!), my RIBP seems to have stopped below the shoulder, so I can shrug if I want, but I cannot move the elbow or anything below it. The lower you go, the number it gets, so that the fingers cannot even touch each other. It has not gone any higher lately, but you never know with this stuff. It is very insidious, very sneaky. This is not for sissies, you know, so stay healthy.
Jun 21, 2014 02:04PM Jennie93 wrote:
Wow! Now that is interesting! Maybe nerves can regenerate a little over time, after all?
Jul 18, 2014 05:59PM Dorian wrote:
Ladies, I was diagnosed with brachial plexopathy in February and am gradually losing the use of my right arm. I haven't received any occupational therapy yet because I'm in a sort of a treatment limbo, waiting to go to Boston to participate in a clinical trial, and my physiatrist thinks I should get OT while I'm there. Meanwhile I'm losing the ability to do much of anything with my right arm. I live alone and I'm wondering how I will take care of myself if I only have one functioning arm. Is there anyone out there who has been through this loss of motor function who can tell me how you learned to deal with it?
Jul 18, 2014 11:17PM Binney4 wrote:
Dorian, welcome! I'm so sorry you're dealing with this. Is the clinical trial for brachial plexopathy? How long before you can start some PT? I hope you'll soon be able to see a OT, and possibly PT as well for strengthening the shoulder and providing the most mobility possible.
I don't know how much of this thread you've read, but there are quite a number of coping ideas here:
This has been a really slow thread lately, but I'll go see if I can rustle up some of the gals to respond. In the meantime, please know you're in my thoughts.
Jul 20, 2014 02:36PM Dorian wrote:
No, Binney. The problem is inflammation caused by the recurrence of an invasive cancer in the pectoral muscle that is affecting the nerves in the brachial plexus. All my doctors agree that the only thing that will stop the progression of the plexopathy is to stop the progression of the cancer, and the clinical trial is for the cancer. But even stopping the progression of then cancer may not result in restoration of function. I'm started working my way through the 500+ messages in this thread and I see that some people have been dealing with major loss of function, but I have not yet come across messages that describe how they dealt with things when they first began to struggle with this, and some of the messages are so old that I'm not sure if the posters are still actively following the thread. It would be really great if you could get some previous posters to respond.
And thank you for the link. There is some great stuff in here!
Jul 21, 2014 03:17PM barbaraellen wrote:
Sorry you are in this situation, especially since you live alone. Brachial Plexopathy is very insideous; just when you think you have hit a stable plateau, it continues up the arm. I have had this in my right arm since about 2000, 2002, when it was finally recognized for what it was, but mine was caused by radiation. I am assuming that your cancer is being treated with chemo and/or radiation, and stopping the progression of the cancer does sound like step one. However, I do not know if the cause would affect the outcome.
What I can tell you is that the paralysis renders my arm, from the fingers to somewhere in the upper arm, numb and useless, But I can shrug my shoulder. My elbow cannot bend unless I bend it with my other hand. My wrist is immobile.
There are many things I can no longer do, like signing my name or shaking hands, but the most upsetting one for me, the one problem I cannot solve, is getting my bra on. Now, if you are fortunate enough to be small-breasted, you may be able to get away with no bra, in certain fabrics, of course. My right breast, thanks to the radiation, is the size and shape of a naval orange, right under my chin, almost, and my left breast most resembles the size and shape of an old football that could use some air. There is no way I can go anywhere without my bra. My husband and I indulge ourselves in a little black humor now and then, that if something happened to him, I wouldn't be able to go to the funeral unless somebody got me into my bra first.
However, I have learned a few things that make life a little less complicated. I wear pants with no zippers, just pull-ups, Shoes with no laces. Socks I can handle, but panty-hose is just a memory. Cardigan style tops with buttons, no overheads. Clip-on earrings only, and overhead necklaces. Jackets with buttons, no zippers. Cooking is cut way, way back (which is not all bad) but be careful not to buy things you can't open with one hand. Eat out, order in. Use liquid soap with a washcloth, not bar. There are lots of tricks, some of which I am sure you know already, but the most important thing is not to beat yourself up over anything, Let me know if there is anything specific you want to know, perhaps I can help.
I wish you luck with your upcoming treatment, and if you go to Boston, you will be in one of the medical places in the world.
Hang in there, and stay in touch,
Jul 24, 2014 09:40AM Dorian wrote:
Thanks you for writing, Barbara. I've been in a slump for a couple of days and haven't been able to write, but today i've sort of picked myself up off the floor and am trying to move forward. I'm even beginning to see some humor in the situation, imagining what I must have looked like this morning trying to wrestle myself into my clothes. Luckily, my right hand is still working (at least for now) so if I can put my hand in place with my left hand, I can still do things like type with both hands on the keyboard. I try not to think about how I will manage if I lose that capability, but I know from past experience that when something I dread happens, I always seem to be able to deal with it. I think I'm just in a state of mourning.
When you lost the use of your arm, did it happen gradually over time? Or did it happen fairly quickly. Mine has been coming on slowly but seems to have taken a dramatic downturn over the past week or two, and that has been hard to accept. If it had continued to come on gradually, even if I ended up in the same place, I think I would have learned to adjust gradually too.
Meanwhile I'm off to chemo. Thanks again for writing.
Jul 28, 2014 01:31PM barbaraellen wrote:
Hi Christine (May I call you Christine?),
I hope you are feeling more un-slumped today? But don't apologize for it, we all get slump days, and some days our slumps are more slumpy than other days.
You asked whether the symptoms of my BP came on gradually or not. From the first tingle to the loss of the use of my hand it took about 3 or 4 years, to the best of my memory. But, don't borrow trouble. If it's not there yet, do the best you can with massage, like the LE massage. It may help to delay the progression of BP, and it will certainly make you feel better.
It is interesting that you say you were in a state of mourning. That is a very apt description, a way to try to explain to others who do not have this. Almost everyone can identify with a state of mourning for a lost loved one. It is exactly the same, if not worse, as losing (the use of) a part of your body. You are entitled to mourn until you are good and ready to resume your new life without it.
In the meantime, enjoy the summer flowers and eat some ice cream. Stay in touch.
Aug 1, 2014 02:12PM Tomboy wrote:
Dorian, i am so sorry that you are having cancer again. i was reading here to learn about RIBN, because i just have a little mobility and tingling issues along with my LE. it certainly has been a long time for you since the original diagnosis, which kind of makes it even worse. i am so so sorry, and that you seem to be alone with it too. I wasn't even aware that it could come back to a muscle. that is truly awful.
i was just looking for information on enlarged and hard nodes on the cancer side, that this far out from treatment, are really starting to bother me, only one was biopsied, i think, because what the report said was benign glandular tissue, without specifying whether the glandular tissue was a node or mammary gland tissue. bs said i have cording, LE'ist says no. i did a little at first, but if i do mld, and stretch it a little it does go away. All of these nodes, they say are doing the job of the others now, and that is why they are reactive. but, i never even felt the nodes before dx, and two of them were bigger than 2.5 cm's!! and i did a pet/ct scan, and it says there is inflammation, probably resolving, between the clavicle and coracoid process. i have looked up where that is, and i just wonder if it the very beginning of RIBN. i have had a notoriously hard time all along with my tx center, being so reluctant to actually "name" what was happening to me for a long time. they had denied lymphedema for so long that it did get much worse before i got any help with it. but they are already watching a "spot" under surgical scar,and i just think the node issue and that "spot" are some how related. Binney, have you heard of nodes getting so hard and larger this far out from treatment? thanks, kathe
Aug 1, 2014 05:01PM Tomboy wrote:
Nov 4, 2014 01:33AM ronimom wrote:
Hi Everyone! Long time no talk. It's amazing what I can do with my left hand: put on shepards hook earrings, cut lettuce, grilled chicken with electric knife. I stand back and cut with my left hand extended over the cutting board. Hug my friends and family. Many times I need to ask for help, like when I'm eating meat at dinner and have to ask someone or the chef to cut my meat. I'm very independent and plan to be so forever. After eight years I don't give it much thought, just live with it the best I can. #%*#>!
Nov 6, 2014 12:40PM Binney4 wrote:
Ronimom, you inspire!
Are you back to doing the Feldenkrais? As you look back on it, how much do you feel that contributed to your current great abilities and adjustment? What other strategies that you've tried have helped the most--or is it just an outlook that makes room for RIBP in your life and works around it?
Hugs back at ya'!
Nov 6, 2014 02:13PM Tomboy wrote:
Great to hear from you here, Ronimom!
Nov 11, 2014 12:05PM bhd1 wrote:
I was recently treated 4times by a physical therapist for riibp. 2 hr sessions. He did stretches, and worked on scar tIssue. He used frequency specific micro current. This technique has enabled me to raise my arm 60 degrees more. In recline position my arm now goes almost all the way back. Unfortunately this was a retired therepist who was doing this as a favor. Both he and I are quite excited about the results. I can now reach the 2nd shelf in kitchen cabinets and the car mirror.
Nov 12, 2014 11:53AM bhd1 wrote:
sorry Bonney it is all above me. You can google frequency specific micro current. It is not a well known technique. This pt is from Stanford. He has worked w many people with various maladies.