radiation-induced brachial plexopathy
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Linda! Cindy! Ladies! Please include me in any forum, group, or tweet-thing that will bring those of us with late cancer treatment side effects together to email or chat or whatever the newest thing is! I feel quite insolated sometimes when all I can handle even moderately well is simple email. I hope I can become part of this new forum or whatever you call it........I am sorry to be so ignorant of the latest upgrades in communication here, and will accept any suggestion you can give me. With directions, illustrations, diagrams, etc. (I think this format has been altered since the last time I posted, and I think I just removed myself from all RIBP stuff accidentally!) I don't even do facebook!
I just had a scary setback. I do have some mild lymphedema, which I keep under control with compression sleeves and some massage, but it developed from my serious RIPB, which continues to grow worse. A week ago, I fell down. Yes, the worst thing you can do. On the right side, of course, the affected one. At first, I only saw my knee, which took a good bang, but has been turning colors and behaving as any normal body part would.
My arm looked and felt fine, considering it has no feeling. (Sorry about that sick joke. Couldn't resist.) Next morning it was slightly swollen and a little warm and I massaged and put on sleeve, etc. In a couple of days my hand, arm and wrist became very swollen, even fingers, and the palm is a nasty shade of black. The outside of the hand turned black, and is slowly fading now. I haven't put a sleeve on since. My therapist can't come until late tomorrow, but he says not to worry. Easy for him to say. I'm terrified.
We are going to Europe in 3 weeks!! I don't know what else to do. Any ideas?
Barbara-
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Oh, Barbara!
One of our grandsons has some serious medical issues that have required numerous surgeries over the years. His doctors tell him he must NEVER fall down EVER! Huh? So is he supposed to wear a bubble suit or what?!!
Anyhow, no good telling us to stay on our feet--there's just too much gravity around. It sounds like you really did some damage. You might start with seeing your PCP, who I would guess would order some x-rays. And if you're planning to travel, the sooner the better. Once you know what the extent of the injuries are, then you and your therapist can consider what to do about reducing the swelling.
Also, stay alert for infection--new swelling can be a sign of that starting up. Here's a refresher on what to look for:
http://www.stepup-speakout.org/Emergencies_and_Medical_Care_lymphedema.htmBUMMER!!
Please stay in touch and let us know how you're doing.Very gentle hugs,
Binney0 -
Erica - I have this too but contrary to you I am getting radiation to my upper chest/neck area to lesson my pain and zap the 1.6cm node. I have had severe arm pain and neuropathy in my right hand (all those tingly-numbness your having ) I received Taxol 6 years ago as part of my chemo regimen. I have had severe neeuropathy and weaknesses in my feet ever since. I have done 2 weeks so far of Rads w/no response as far as my pain. I just wonder if yours is not from Rads but somehow linked to the Avastin (a drug I had thought was not effective in BC) Whatever the reason I feel for you as I know myself being right handed it interferes w/all your daily activities . I was a big sewer but have not been able to do any for weeks now.Hugs and hang in there as I am also.
Rene0 -
I get very frustrated when these threads show a very old post first. I just wrote a long response to Erica before seeing it was a 2009 post. Why can this site not pull up the latest posts first. A 4 year old post is likely not the situation now.
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that is because this thread started so long ago~
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Barbara - Sorry to read about that fall! Sounds serious.... I hope you were able to get some relief. Let me give you a couple websites to explore.
My personal blog is http://survivingsurvivorship.blogspot.com/
I am working closely with http://www.myheartyourhands.org in order to spread the word regarding all cancer survivors and late effect, side effects from chemo and rads. These side effects are becoming more prevalient as we survivors are living longer.
Here is a video link for an interview with Stephanie Zimmerman, Co-Founder of MyHeartYourHands.org, regarding their mission. Additionally, it includes a sneak preview of the documentory she is producing. http://vimeo.com/73405731
I hope this helps you stay connected!
Keep fighting, my friends!
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test
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Just wanted to add this to the mix!
Radiother Oncol. 2004 Jun;71(3):297-301.
Is there a life-long risk of brachial plexopathy after radiotherapy of supraclavicular lymph nodes in breast cancer patients?
Bajrovic A, Rades D, Fehlauer F, Tribius S, Hoeller U, Rudat V, Jung H, Alberti W.
Source
Department of Radiotherapy and Radiation Oncology, University Hospital Hamburg-Eppendorf, Martinistrasse 52, 20246 Hamburg, Germany.
Abstract
BACKGROUND AND PURPOSE:
To contribute to the question whether the risk of radiation-related brachial plexopathy increases, remains constant or decreases with time after treatment.
PATIENTS AND METHODS:
Between 12/80 and 9/93, 140 breast cancer patients received supraclavicular lymph node irradiation using a telecobalt unit. Total dose was 60 with 3Gy per fraction at a depth of 0.5 cm and 52 with 2.6Gy per fraction to the brachial plexus at a depth of 3 cm. Twenty-eight women received chemotherapy, 34 tamoxifen. Brachial plexopathy was graded using a modified LENT-SOMA score. Actuarial complication-free survival and overall survival were obtained from Kaplan-Meier analysis. The impact of chemotherapy or tamoxifen was tested using the chi2 test. The annual incidence of radiation-related brachial plexopathy was assessed by exponential regression as described by Jung et al. [Radiother Oncol 61 (2001) 233].
RESULTS:
Actuarial overall survival was 67.1% after 5 years, 54.0% after 10 years, 49.9% after 15 years, and 44.0% after 20 years. In 19/140 patients, brachial plexopathy grade>/=1 occurred after a median interval of 88 (30-217) months. The percentage of patients being free from plexopathy was 96.1% after 5 years, 75.5% after 10 years, 72.1% after 15 years, and 46.0% after 19 years, respectively. A significant impact of type of surgery, chemotherapy or tamoxifen was not observed. The annual incidence of brachial plexopathy was 2.9% for grade>/=1 lesions and 0.8% for grade>/=3 lesions. The rates did not change significantly with time.
CONCLUSIONS:
The risk of brachial plexopathy after supraclavicular lymph node irradiation in breast cancer patients remains constant for a considerable portion of the patient's life.
- PMID:
- 15172145
- [PubMed - indexed for MEDLINE]
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I've been reading this thread since I was told I needed to do supraclavicular radiation. I just finished it one week ago and am still burnt but I think it is just starting to turn a bit brownish. Hopefully another week or so and it will stop hurting!
I really feel for everyone who has this horrible side effect. It sounds very difficult to live with and I admire those of you on this thread who show their strength and support each other. I was and am afraid of developing brachial plexopathy from radiation treatment. I have SEVERE neuropathy from my chemo - I was told it would probably go away within a few months of finishing chemo but it has gotten worse instead of better.
When I spoke with my RO about the very article sited above, his response was that the data is old - patients were from between 1980 and 1993. Back then they used cobalt instead of photons from a linear accelerator. Back then they gave 60 Gy - today they usually give 50 Gy (I opted to go even lower and get 45 Gy). In the study, people received 3 Gy/fraction - today they give 1.8-2Gy per fraction (I only received 1.8 Gy/fraction).
Although my RO convinced me that the statistics from the article weren't valid today, I (and especially many of those on this forum) know that the risk is still there. I have read articles regarding people who got 40 Gy and still ended up with plexopathy. I would like to see them do a new study with todays parameters to determine what the real risk really is to the brachial plexus. It would certainly help patients to make a more informed choice if we had accurate numbers. I felt I needed to do the radiation because of my cancer ... but also felt that most of the statistics I based that decision on were outdated (i.e. most studies were done before Herceptin even existed).
The bottom line is that more studies need to be done in the modern era looking at long term side effects. The old data isn't necessarily relevant and most new studies report survival rates without talking about side effects. For something like radiation, many of the side effects might not appear for years so a 5 year follow up period may miss what's really happening. I find myself unable to find figures regarding lymphedema, plexopathy, secondary cancers, and hypothyroidism that I truly believe. That being said, I still ended up doing the radiation. I0 -
Stacie, thank you for that very thoughtful (and thought-provoking) post. I too wish there were more research, not only into the rates of various side effects and how we might prevent them moving forward, but how to deal with the brachial plexopathy that already exists. Strategies for therapy, for pain control, and for delaying damage or preventing it altogether would certainly be welcome.
More (and more recent) RIBP research results here (unfortunately, none offering solutions!):
http://www.stepup-speakout.org/Radiation_Induced_Brachial_plexopathy.htm#Research%20and%20Experimental%20Treatment%20Options
Stacie, hoping you stay RIPB-free well into a ripe (and healthy) old age!
Binney0 -
This study was done in 2004.0 -
Doe, that's true, but some of the women included in the study were 20 years out from treatment, so the type of rads they had was not what we're using today. That would be the problem with any study of RIBP, though, because it does often develop really slowly over time. The issue is, are there women who are being treated TODAY who will eventually develop it, and I think there are, though it's rare. Still, just as with LE, the more improvements they make in BC survival rates and the longer we live, the more of these long-term side effects we'll see. For sure, it's time to address RIPB--way overdue, in fact.
Hugs,
Binney0 -
Binney - Thanks for the link. I find the START trial side effects article especially interesting since it is so recent and uses modern techniques. I hope they continue to report longer term side effect results on that patient population - 10 year and 20 year data using modern methods is needed. The 5 year breast and arm complication rates are unsettlingly high. I wish they had specifically separated out the RIBP numbers.
Doe - Even though that article was written in 2004, the patients received their radiation between 1980 and 1993 so the technique is not the same as current day. However, the article definitely shows that radiation side effects increase with time! I find it scary that RIBP rates went from 3.9% at 5 years to over 50% at 20 years in that article even though it is old data. That suggests to me that when a 5 year incidence of a complication is reported, we still have no idea what the real risk is!0 -
Stacie aka Kirklandgal, I know exactly how you feel, we had similar diagnosis.. I did develop more issues post rads, and instead of getting better most have gotten worse, but I really believe all the treatments are what has kept me cancer free, so one day at a time I deal with the issues.
Wishing you all a blessed Thanksgiving!0 -
This news from Bob Weiss (the Lymphedema Activist and dedicated advocate) makes it possible for those who have been denied therapy because of lack of improvement to still receive therapy that slows or stops degeneration (which might have a wide range of interpretations depending on the creativity of one's therapist in writing it up).
The following notice from Bob includes a link for further information. I'm so hoping this will enable all of you who have been "given up on" by your insurance to receive the therapy that can control the lymphedema and protect the shoulder from damage. If you make use of this provision, please let us know how it goes!
CMS Changes Claims Processing Manual to Clarify Non-Existent Improvement Standard
In the case of Jimmo v. Sebelius,the Center for Medicare Advocacy (CMA) alleged that Medicare claims involving skilled care were being inappropriately denied by contractors based on a rule-of thumb "Improvement Standard" - under which a claim would be summarily denied due to a beneficiary's lack of restoration potential, even though the beneficiary did in fact require a covered level of skilled care inorder to prevent or slow further deterioration in his or her clinical condition. In the Jimmo lawsuit, CMS denied establishing an improper rule-of-thumb "Improvement Standard."
The settlement agreement is intended to clarify that when skilled services are required in order to provide care that is reasonable and necessary to prevent or slow further deterioration, coverage cannot be denied based on the absence ofpotential for improvement or restoration.
The following are some significant aspects of the manual clarifications now being issued:
•Coverage depends not on the beneficiary’s restoration potential, but on whether skilled care is required, along with the underlying reasonableness and necessity of the services themselves;
•While the presence of appropriate documentation is not, in and of itself, an element of the definition of a “skilled” service, such documentation serves as the means by which a provider would be able to establish and a Medicare contractor would be able to confirm that skilled care is, in fact, needed and received in a given case;
•When skilled services are required in order to provide care that is reasonable and necessary to prevent or slow further deterioration, coverage cannot be denied based on the absence of potential for improvement or restoration.
The complete announcement together with the actual changesto CMS Manuals may be found on my LymphActivist’s Site at http://www.LymphActivist.org
Pull down the MEDICARE Menu to “Improvement Standard," where you will find the details on 1) the Jimmo v. Sebelius Agreement, 2) the retirement of a Local Coverage Determination which implemented the non-existent improvement standard, and 3) the coverage manual changes being implemented.
Robert Weiss, M.S.
Independent Lymphedema Patient Advocate
Gentle hugs,
Binney0 -
Hi all well some how I always end up on this site even though I had Uterine cancer ... I was diagnosed with Lumbar Plexopathy two weeks ago .... A late effect of radiation to the pelvis 12 years ago!!! Very rare 0.03% world wide... My cancer did not reoccure but I have had Lymphedema for 12 years ... And now this.. I have numbness, pins and needles and weakness in my legs that has gradually progressed over past two years... For most of that I blamed the symptoms on Lymphedema.. I have difficulty walking upstairs and walk in general very slowly now... If anyone has links to info that would be great it has been near impossible to find info on this... I am I touch with a lady in the USA... She is now in a wheel chair ten years after diagnosis ... I feel like I try to fix the LE by a LNT and I have another issue pop up..
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Oh Helen, I'm so sorry to hear this! Admittedly the RIPB pages at StepUp-SpeakOut are almost entirely about…well, RIPB--but there might be information there that would help your situation too:
http://www.stepup-speakout.org/Radiation_Induced_B...
You might want to hook up with the UK group that speaks out about radiation injury too in order to find others to communicate with--their contact information is on that page as well. Maybe spend some time reading all the pages of this thread, as there are suggestions from the ladies here that will apply to your situation as well. Maintaining good control of the LE is very helpful, but I know you're already on top of that.
Please do stay in touch and let us know how you're doing. Gentle hugs,
Binney0 -
thanks Binney.. I have had an MRI and still have to have a neurological study plus other test.. I see the Doctor again in February .. I think I have been lucky to find a neurologist who really knows his stuff.. When I read all my crazy symptoms local into place.
. Sadly he feels the NT may have made the situation worse as it affects more nerves in the leg.. How ever the plus is lower leg looks better!! Thigh and knee still need work!!! But no more surgery for me!! Will read through these pages when I have time and check out all the links ... Thanks for your support
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Helen, you've been so wonderful and generous in sharing your NT experience, it's really so unfair that it's difficult for you to find others who can share their experiences with plexopathy. I hope you find a lead or two from the information Binney suggests. Your condition is so rare, and yet with all the social media in today's world, seems like you should be able to connect with at least a small group who are in the same boat. In the meantime, you can indeed count on everyone here to hold a good thought for you and send waves of cyber support your way.
Carol
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Thanks carol... I will keep searching and intend to include this in my blog... Or maybe it calls for a new blog!!!! Although I cannot find much on Lumbar Plexopathy I have found more on Brachial Plexopathy but also other late stage side effects of cancer treatment.. Especially amongst those who were treated as children.. Gosh these things are rare but still a possibility ... At least if we were told we would know what was happening when symptoms start.. Thank you as always for supporting me and if I find any new info on BP I will pass it on..
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is the shoulder pain from ribp constant or can it be intermittent!?
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I am not sure if I'm in the right place, but the topic seems similiar to what I am now experiencing. I am in the middle of my radiation treatments, 16/30 and two weeks into the treatments I started to feel a burning sensation on my face, around my eyes, back of my neck, on my hand, moving up my arm. Now I'm feeling my hands and feet are tingling and cold at times. These sensations come and go, but the coldness in the feet and hands seem to be increasing. I am so scared of what is happening. Talked to my RO and she said the burning sensations are not caused by radiation, that the beams are precisely directed to my breast, that what I'm experiencing is incidental, maybe an auto-immune disease; the techs have now have a shield over my neck to see if that helps. I did not have chemo. just radiation and have never experienced anything like this before. So far I am not getting answers. I am searching the internet and this board and am finding out radiation can cause neuropathy, but usually it starts months or years down the road. Has anyone else out there had a similar experience? I am wondering if the radiation should stop. I know something is going on. Worried.
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ooo, sorry, have you also spoken to your MO?
when I first started the AL after ending my rads, I had pain in my leg which of course I blamed on the med....but it was not related to the cancer treatmen
rather it was a side effect of danged cholesterol med, switched med and pain went away
try to see if something else in your life could be the cause?
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Winter/cold weather is the worst time of the year for my nerve damage. Even when its 100 degrees outside, my right arm/hand feels cold to me.... but not as bad as this time of the year. I am currently taking Cymbalta 60 mg once per day, Gabapentin 1200 mg spread out during the day, and Nortripyline 75 mg at bedtime. These drugs take some of the edge off of the constant stinging, but thats it. I still get a lot of breakthrough pain throughout the day and night. Sleep is disturbed with many occurrences. I have more written about this plus several links to publications that are helpful with understanding our nerve damage. Sadly, there is nothing to reverse the damage and elimination of the progression. Stem cell research can bring us all so much once the break through the ceiling.
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when I was treated for stage 11 bc in 2011 i had chemo, surgery and rads. I had no lymph nodes removed. . Six months later i had recurrence in lymph nodes in auxilla , pecs, clavicle. I was treated w chemo . About a year later i developed brachial plexopathy symptoms. Pain in shoulder and wrist. They radiated the neck noes and pain went away for a year. It is back, So would you think my brachial plexopathy was caused by cancerin lymph nodes?
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barb, it can be caused by either rads or tumor growth, but on the other hand, pain in the shoulder or wrist might be caused by other things as well, including some cancer drugs. So it's definitely something you'll want to check out with your doctor. Hope you're feeling better real soon!
Gentle hugs,
Binney0 -
thanks for this link I have lumbar Plexopathy due to pelvic radiation ... Fortunately Ido not have pain but it is getting harder to use my left leg and I have severe pins and needles in both legs will goand look at this site... Thanks Cincerely....
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Binney are you saying chemo can cause shoulder pain?
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barb, I was thinking of the Aromatase Inhibitors, like Arimidex.
Binney0 -
Binney i am er pr neg. did taxotere for her 2posituve
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