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Topic: radiation-induced brachial plexopathy

Forum: Lymphedema —

Lymphedema is swelling that can develop in the arm, hand, breast, or torso as a side effect of breast cancer surgery and/or radiation therapy. Lymphedema can appear in some people during the months or even years after treatment ends.

Lymphedema usually develops slowly, and you may feel an unusual sensation — such as tingling or numbness — that comes and goes before any visible swelling occurs. Other symptoms include achiness, feelings of fullness or heaviness, puffiness or swelling, and decreased flexibility in the hand, arm, chest, breast, or underarm areas. Tell your doctor if you experience any of these symptoms. Early treatment of lymphedema is important.

Learn more about how to lower your risk of lymphedema and how to manage it if you've been diagnosed.

Intro medically reviewed by: Brian Wojciechowski, M.D.
Last review date: November 22, 2020

Posted on: Jan 9, 2008 11:33PM - edited Aug 30, 2009 02:55PM by Erica35

Erica35 wrote:

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....

Best, Erica

See profile for treatment history Dx 7/3/2006, IDC, 1cm, Stage IIIA, Grade 3, 7/13 nodes, ER+/PR+, HER2-
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Page 23 of 25 (748 results)

Posts 661 - 690 (748 total)

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May 9, 2016 09:08AM glennie19 wrote:

Paula: So sorry that you are going thru all of this. That is so rough. I do not know about Taxol for the rest of your life. I would recommend asking that question over on the CHEMO forum, or asking in the Stage IV forum. I bet someone over there would be able to answer your questions about chemo. I do know some triple negative women will be on Herceptin forever,, so I guess it is possible you could be on Taxol forever,, but I would ask others more knowledgable on the subject.

About the nerve pain. How much Lyrica were you on? Did it do anything at all? I tried Lyrica for neuropathy and it did nothing for me,, so I asked to switch to gabapentin (Neurontin) which is similar to Lyrica,, and that worked much better for me. You may want to ask for it. Lyrica works for some,, but not all people,,, and for some people, the older med, gabapentin works better. And I think that if marijuana works for you, then I would ask for the medical marijuana card. I don't know how that all works, as we don't have it in my state,, but if you tried it, and it worked,, well,, I would use it.

Fibromyalgia and Truncal Lymphedema,,, some of the fun things I live with. Total hysterecomy 9/29/14 Prophy MX Righty 11/30/17 Dx 6/27/2013, Paget's, 1cm, Stage 0, Grade 3, 0/6 nodes, ER+/PR+, HER2- Surgery 8/7/2013 Lymph node removal: Left, Sentinel; Mastectomy: Left Dx DCIS
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Jun 18, 2016 10:37PM LindaKR wrote:

Find another doctor that will prescribe medical marijuana for you if it helps.

Modified Radical MX w/axillary dissection; 6xTCH, Hercpetin for a year, Rads, trying 3rd AI Aromasin. No Reconstruction. Lymphedema. Dx 3/19/2010, IDC, 4cm, Stage IIIA, Grade 2, 5/18 nodes, ER+/PR+, HER2+ Surgery 4/2/2010 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Targeted Therapy 5/15/2010 Herceptin (trastuzumab) Chemotherapy 5/15/2010 Carboplatin (Paraplatin), Taxotere (docetaxel) Hormonal Therapy 9/15/2010 Arimidex (anastrozole), Aromasin (exemestane), Femara (letrozole) Radiation Therapy 9/25/2010 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Arimidex (anastrozole)
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Aug 1, 2016 03:35PM bradie234 wrote:

i finished radiation about 8 months ago and have shoulder issues on the radiation side. It is very frustrating at time. I was given option of therapy but did not want it. i manage it everyday. so i understand what you are going through.

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Aug 1, 2016 03:41PM bradie234 wrote:

I have problems with my shoulder from radiation. My radiation dr suggested Star therapy he said it was different because of what i went through. I manage it everyday and sometimes i forget and then i lift something and intense pain.So i understand.

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Aug 1, 2016 05:23PM Moderators wrote:

Dear bradie234, Welcome to the community. We are sorry for what brings you here but glad that you reached out and shared your story. We hope that you will stay active here and keep us posted. Warm wishes to you. The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Aug 3, 2016 10:34AM Marga wrote:

welcome bradie234!! I recommend you to investigate about any treatment right after your radiotherapy, I hope you never go to the point you can't move your arm, but Drs never warn us about the side effects of that, so we need to investigate by ourselves, good luck!!

Dx 3/16/1997, IBC, Left, Stage IIB, Grade 2, 5/11 nodes
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Aug 29, 2016 11:35PM lionessdoe wrote:

Haven't been here in years. But I just wanted to let everyone know I was approved for Social Security Disability without diagnostic evidence. The adjudicator made the decision based on consistent self reporting of symptoms to my pain management specialist for two years. Huge relief to me for this long arduous process to be over. Gratification for being believed and approved. But also, no more self doubt incurred by those who did not believe me. Finally, a little sadness because I know that this, along with my lymphedema (which is well controlled now) will be with me forever. I rely on my garments more than ever due to continuous loss of fine motor skills in affected side. Just waned to drop by and let everyone know it's possible. According to my SSDI attorney, I had the most difficult adjudicator in the district. I guess what I am trying to say is, this process has made it so real all the way around that acceptance is finally approaching at the speed of light.

Doe Dx 9/5/2007, IDC, 1cm, Stage IIIA, Grade 2, 4/19 nodes, ER+/PR+, HER2-
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Aug 31, 2016 02:57PM - edited Aug 31, 2016 02:57PM by lionessdoe

This Post was deleted by lionessdoe.
Doe Dx 9/5/2007, IDC, 1cm, Stage IIIA, Grade 2, 4/19 nodes, ER+/PR+, HER2-
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Aug 31, 2016 03:01PM lionessdoe wrote:

This post is for Buford. Was any of this covered by insurance?

Doe Dx 9/5/2007, IDC, 1cm, Stage IIIA, Grade 2, 4/19 nodes, ER+/PR+, HER2-
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Sep 23, 2016 09:03PM Buford wrote:

Sorry for the delay, insurance covered everything including PT. The Dr. had to deal with the insurance because he was out of network but it was no problem because no Dr. in network was capable of the surgery. I would be happy to let you know more about it.

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Sep 27, 2016 01:54PM bradie234 wrote:

thanks for your post

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Sep 29, 2016 09:51PM Icietla wrote:

Hi Friends. I do not have RIBP; however, I have and have had some of the same challenges as many RIBP sufferers have or go through among the effects of RIBP.

I am a very right-handed person. My abilities are variable but only limited. At the time I make this post, I have a mild degree of truncal lymphedema at at my right side axillary area. My right biceps has been torn for over forty-one years, and my left biceps has been torn for nearly three years. I have had nerve entrapment in my feet for more than eight years; as to my feet, the effects of this overlap and compound the effects of peripheral neuropathy -- from a chronic demyelinating disease -- affecting all my extremities. I have limited arm use; right side back musculature very weakened; limited ability to walk; very limited ability to stand in place; paresthesia in my hands and feet; more extensive nerve damage in my feet; and much more in the way of neurological complications, including but not limited to memory issues and other cognitive impairment, balance issues, and moderate to severe neuropathic pain strikes that may be felt at any part/s of my body. In addition, I have been through a long phase during which any of my limbs might suddenly "go to sleep" at any time.

I will be doing more posting on this thread to encourage and share some tips with others who may be similarly situated.

What follows is my post from Katiejane's recent thread here in our Lymphedema discussions section.

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Sep 24, 2016 11:28PM - edited Sep 24, 2016 11:52PM by Icietla

Hi Katiejane. I am so sorry you are suffering so with those terrible injuries, besides your same arm being afflicted with lymphedema too.

Since my first mastectomy surgery, I have had just a mild degree of truncal lymphedema on one side of my chest, at the axillary area. My biceps injuries preceded my cancer diagnosis and treatment. Your case is much more complicated, as a very troublesome degree of lymphedema affects your injured arm/shoulder, and your injuries in there are clearly more extensive.

The biceps tendon in my dominant arm was torn more than forty years ago, in my later childhood. I could not have any treatment for it then, and I had to keep using it then, so it was never capable of healing. Most use of it can still give me the same sharp pains as when the tear was new. With that arm extended at all -- i.e., with my humerus and elbow positioned away from my trunk at all -- it can lift its own weight and about one pound; however, with that arm close against my trunk, I have ordinary lifting strength for a weak, sick person. That side of my back is very weak from all the years of compensation (avoidance, when possible, of the most painful motions), so that if I reach out with that arm (on its own strength) more than just a few times in a while, I get a backache. My posture has naturally been affected too. I do regular passive stretching to keep that shoulder from freezing up.

The biceps tendon in my other arm was torn in a very bad fall three winters ago. My arm was frozen stuck down very tightly and painfully for some time, then I gradually recovered wrist and lower arm use, and then the shoulder loosened up a little. For a long time I could wear only very loose kaftans -- to put one on, by dropping that one arm into its armhole first of all; and to take one off, by pushing the rest of the kaftan up overhead and then dropping the kaftan off from that one arm. I could no longer manage with back-closure bras, and front-closure bras were a long, difficult, painful struggle for me to fasten or unfasten, and I still needed help to get the second of my arms into them and to adjust the positioning of their back bands. I had a few steroid shots in that shoulder, and physical therapy, sometimes with battery-charged special dressings following sessions. The strengthening exercises made significant setback for me, though, and after some more weeks I was dropped for not making further progress. The refreshed pain went on, and even after some improvement, that degree of pain returned sometimes over a very long time. I did passive stretching exercises every day unless my arm complained that it was too much, and then I would just rest it for a few days before starting passive stretching again. That arm does not have nearly the range nor the strength it had before the fall that injured it. These days I can manage pulling lightweight covers over myself without too much pain. I believe that shoulder's having had lengthy rests was key to its eventually having its appreciable improvement.

I am on pain medicines for the duration, for a quadruple-whammy of painful disabling conditions.

You will still naturally tend to use your dominant arm and hand. You will find your very own, better-for-you, adaptive ways of doing what you must do. With some time and practice you may find some particular zig-zaggy way around (not through -- but avoiding) having the most painful (angles among) positions coincide with the most painful arcs in your arm's range of motion. Ordinary closet-rod arrangement is a real bitch. Some kitchen cabinet arrangements can be a real bitch -- but there are lots of practical ways to deal with some of the kitchen challenges. You will very likely become an enthusiast for Universal Design. If you cook, you might want to get a Swedish coil whisk -- it can work from simple wrist action, even from simple fingers action. You will want "helper handles" (handles on opposite sides) on any of your larger cookware items. Immersion blenders are much easier to use than countertop blenders. You will want a countertop model microwave oven. If you use a purse, you might want to get a rather small, flattish, lightweight shoulder bag and wear it crossbody style to hang at its easiest-to-handle position on your front side; but using handy pockets or lightweight vests with sufficient handy pockets instead (like fishing type vests, as examples) might be kinder for your shoulder and arm. Wall corners and doorjambs make excellent back-scratchers, and indoors, one can always be found nearby. You will find that some (currently) able-bodied persons seem not to have the capacity to believe in invisible disabilities. Theirs is far worse than yours.

((Hugs))

My latest (Stage IVB) diagnosis is almost certainly of another distant primary type. To the best of my information and belief, I am still apparently what we call NED as to breast cancer, doubtless thanks to Letrozole. Dx 2/12/2016, ILC, Right, Stage IIA, Grade 1, 0/13 nodes, ER+/PR+, HER2- Surgery 2/19/2016 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left Hormonal Therapy 4/1/2016 Femara (letrozole) Surgery 4/25/2016 Prophylactic ovary removal Dx 8/2018, Stage IV
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Sep 29, 2016 11:13PM ChiSandy wrote:

First, there is nothing morally wrong with being “addicted" to not being in intractable pain. Opioids are supposed to be prescribed for post-surgical pain and cancer patients. The heroin epidemic is not due to opioids being a gateway drug and too readily available—quite the opposite: they are closely controlled (and are easily crushable for faster absorption via snorting or injected), so that they have developed the reputation of the heroin high without the stigma of infection, arrest or needles. And when the Rx runs out, the patients—many of whom are trying to control the physical pain for which the drugs were prescribed, not looking for a high or staving off withdrawal—look to heroin because it's cheaper and more widely available now than even the lowest doses of opioid. You now have to go to a physician for a paper prescription that you must then fill in person, there is no longer such a thing as a “refill," and doctors can no longer prescribe more than 30 days' worth at a time. (10 years ago, you could go to the pharmacist's counter in Canada, show photo ID, and buy Tylenol #1 without a prescription). The moral squad has driven prescription opioids underground and is pretty much responsible for the 21st-century suburban and rural heroin epidemic. Because a bunch of prigs decided to impose their belief upon everybody that pain is natural and something that needs to be endured, that it is spiritually desirable to offer up your suffering, and that it is immoral to try to avoid or keep it at bay regardless of its cause, we have kids in small towns, soccer moms and farmers shooting up…and dying. So if you are offered “addicting drugs," ask yourself what the hell is so noble about having pain and suffering needlessly?

Second, if your MO will not sign your MMJ card application, and MJ relieves your pain (for me, it only made me high and set off coughing fits that led to asthma attacks), your local MMJ dispensary can refer you to a physician who specializes in facilitating application for an MMJ card. (They may have to do this under the table, but they can do it. The one in my ‘hood told me that if I ever need it for pain relief before metastasis—either Stage IV or chemo-induced cachexia are the only reasons my MO will sign an application—they have several doctors who are willing to sign an app. for anyone with a valid proven diagnosis of the qualifying conditions in IL—of which cancer at any stage is one).

Diagnosed at 64 on routine annual mammo, no lump. OncotypeDX 16. I cried because I had no shoes...but then again, I won’t get blisters.... Dx 9/9/2015, IDC, Right, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 9/22/2015 Lumpectomy: Right Radiation Therapy 11/1/2015 3DCRT: Breast Hormonal Therapy 12/30/2015 Femara (letrozole)
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Oct 25, 2016 05:37PM - edited Aug 3, 2018 03:39AM by Icietla

Jan 13, 2012 11:57PM barbaraellen wrote:

[...]

It hasn't been easy for me to shop for clothing, particularly overhead tops for several years now, but lately it has become just about impossible. I have to take my husband with me, of course, and I am grateful to have him. But getting permission to take him in the changing room with me is another story. So I often take home 2 sizes of something and wind up taking one or both of them back. At home by myself, I have to sit on the floor to get my arm into a sleeve. Anybody have any suggestions for this either?

[...]

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Icietla writes:

Go to those stores pretty early on Tuesdays. Point out what all garments you would like to try on, and your husband can collect and carry them for you to the changing room when you are ready to go there. The clothes should be placed on one side of the bench in the handicap changing room, with room for you to sit on the other side of the bench, positioned so that your more capable arm will be closer to the garments. There should also be another seat in there for your husband, so besides assisting you otherwise, he can wait for you to decide on the garments and then he can hang them up as you decide to get them or reject them. You should not need permission to have his assistance in there. You are clearly disabled within the meaning of the ADA. I suggest acting as if you do not need any such permission from store personnel.

We all regularly need some arm coverage, even if only to protect our arms from sunshine while we are outside. You have doubtless found that elastic-waistband, pull-on pants can be put on and taken off with one hand. For other everyday type clothing, the one thing I can suggest for easier dressing and undressing for such challenged arms is getting very loose (as to upper body) garments with very generously sized armholes and sleeves. If the garments are loose enough for one to get within/inside so that one can drop the more impaired arm into its armhole (or lift the garment over/around the more impaired arm), or arrange the impaired arm forward into and then otherwise duck into the garment first of all, then taking them off can be done in the reverse order, by dropping the garment over and from the more impaired shoulder and arm last of all. Universal/free-sized kaftans work well this way, and typically do not present the complications of buttons or zippers. There are also universal/free-sized shorter kaftans, which can work as separate tops or as short dresses. Any front-closure dress or top can be kept (at all times) fastened as it is worn, but used as pullover/overhead type (as I generally described) instead, obviating the complications of any fastening, if it is sized large enough to work this way.

Men who suffer from this or similar condition might consider the Panabresa/Cubavera/Guayabera type shirts and adopt them as their own style for warm weather and dress shirts. They are available with short sleeves or long sleeves; they are not styled with tuck-in tails (so the absence of a belt beneath is inconspicuous); they are available in large enough sizes to likely permit (overhead, as I generally described) dressing with a kept-fastened front; and they typically have plenty of handy pockets. Bolo ties are appropriate for most dressing-up purposes, and a man having the use of one arm (and hand) can use them without assistance.

Here is a fairly simple, no-sew way for concerned helpful others to make for you a loose, pocketed dress from a typical open-front, kimono-style robe having wide armholes and wide sleeves. Whether they are made for men or for women, these robes are all pretty much alike, with some variation as to size and length, and can be found in solids, embroidered solids, stripes, paisleys, foulards, and other prints. Besides chenille ones, garments generally styled like this can be found made of seersucker, other woven cotton, silk, velour, and velvet. [If you want a loose fit, have the belt loops cut off and discard the tie/belt.] Try over and over and over with those central vertical edge sections pinned together (one on top of the other) to make certain of exactly where that band should be closed to afford you both satisfactory chest coverage and enough room to get your head through easily enough. When you are sure of the level for your head opening, your helpful other can close the rest of the front for you using some iron-in adhesive fusing strips. [NB: The iron-in adhesive fusing strips products have very particular instructions as to how long heat should be applied, and also as to leaving a pressed/fused section undisturbed while it cools.] For repurposing robes into dresses like the one shown here, I use two lengths of fusing strips (side by side, generally parallel, but not overlapping each other) between those central edge sections to be fused together.



As Binney4 suggests, capes are the easiest-to-wear outerwear for warmth. If you are shopping for one that is round (or generally round) in its construction, make sure it has some lower front or side holes or slits for your forearms. Here is a fairly lightweight one – not for the coldest weather -- that is generally rectangular in construction. It is narrow enough so that the sides fall short of being in the way of arm use. To prevent its falling off, its open front can be kept fastened with a single costume jewelry type pin.



For travels in extremely cold places, I wear an all-day cloak fashioned of a folded personal-sized blanket (or throw) put on kind of shawl-like, wrapped around, and pinned through its layers over one of my shoulders. Depending on how such a blanket is folded and wrapped around, it can be worn to hang fairly short to fairly long. I wrap mine so it is short enough at the sides so that it is not in the way of arm use. I can draw in my arms under it for more warmth, and I can bunch much of its length up over my shoulders to use a commode or to vent away excess heat. [Yes, we can take it pretty easy on our arms, shoulders, and backs to comfortably wear even long, even heavy winter capes or cloaks all day.]










My latest (Stage IVB) diagnosis is almost certainly of another distant primary type. To the best of my information and belief, I am still apparently what we call NED as to breast cancer, doubtless thanks to Letrozole. Dx 2/12/2016, ILC, Right, Stage IIA, Grade 1, 0/13 nodes, ER+/PR+, HER2- Surgery 2/19/2016 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left Hormonal Therapy 4/1/2016 Femara (letrozole) Surgery 4/25/2016 Prophylactic ovary removal Dx 8/2018, Stage IV
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Oct 25, 2016 08:16PM - edited Aug 3, 2018 03:39AM by Icietla

Each of these Swedish coil whisks is made with a single coil of wire placed around another single length of thicker wire. It takes only simple wrist action or fingers action to use whisks like these for small mixing tasks. The whisking loop end can be bent to most any angle, and the wire sides of the handling end can be twisted or otherwise bent to make a section give fairly snug fit around/against fingers. The weights of the whisks shown here range from twenty grams to thirty-four grams.


My latest (Stage IVB) diagnosis is almost certainly of another distant primary type. To the best of my information and belief, I am still apparently what we call NED as to breast cancer, doubtless thanks to Letrozole. Dx 2/12/2016, ILC, Right, Stage IIA, Grade 1, 0/13 nodes, ER+/PR+, HER2- Surgery 2/19/2016 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left Hormonal Therapy 4/1/2016 Femara (letrozole) Surgery 4/25/2016 Prophylactic ovary removal Dx 8/2018, Stage IV
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Oct 25, 2016 10:45PM - edited Aug 3, 2018 03:38AM by Icietla

These Enclume wrought steel cookware stands keep most of my cookware within easy enough reaching range for me. They are available in some taller models with more levels and some shorter models with fewer levels.



Steel tool cabinets with drawers, such as the one shown here, are great for handy storage of cookware, bakeware, measuring cups, dishes, small appliances, most any kitchen stuff. With this model, the lid over the top compartment must be opened (raised at front) to unlock the upper set of drawers, while the lower set of drawers can be kept unlocked. All of the drawers are lined with non-slip liner, and they move very easily on ball bearings. These (and some customizable) tool drawer sets can also be found in solid color enamel finishes.


You can customize your own set in pink (***!Do not look if you do not like pink!***)__

http://theoriginalpinkbox.com/cats/the-original-pink-boxes/

Here are some other tool cabinet colors, besides the typical red and black enamel finishes__

http://theoriginalpinkbox.com/cats/shop-colored-boxes/


My latest (Stage IVB) diagnosis is almost certainly of another distant primary type. To the best of my information and belief, I am still apparently what we call NED as to breast cancer, doubtless thanks to Letrozole. Dx 2/12/2016, ILC, Right, Stage IIA, Grade 1, 0/13 nodes, ER+/PR+, HER2- Surgery 2/19/2016 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left Hormonal Therapy 4/1/2016 Femara (letrozole) Surgery 4/25/2016 Prophylactic ovary removal Dx 8/2018, Stage IV
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Oct 26, 2016 02:51AM Icietla wrote:

Jul 23, 2008 10:41AM Sharalyn wrote:

[...]

Another thing is shopping has become a "nightmare" of it's own, always looking for long sleeves made of a thin material because where I live the summers are HOT!

[...]

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Icietla writes:

White woven (not knit) material is best for reflecting heat and sunshine. Here is a roomy white shirt of woven sun-protective (100+ SPF) material. A shirt like this can be worn as a top or as a cover shirt to protect one's arms from sunshine. Persons who have trouble with buttons can get shirts like this sized very large, keep them buttoned as they would be worn, and turn them to get their arm/s sleeved and unsleeved from the inside, instead of having to lift their arm/s through open shirt fronts to be buttoned and unbuttoned.

http://www.sunprecautions.com/product/17700


My latest (Stage IVB) diagnosis is almost certainly of another distant primary type. To the best of my information and belief, I am still apparently what we call NED as to breast cancer, doubtless thanks to Letrozole. Dx 2/12/2016, ILC, Right, Stage IIA, Grade 1, 0/13 nodes, ER+/PR+, HER2- Surgery 2/19/2016 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left Hormonal Therapy 4/1/2016 Femara (letrozole) Surgery 4/25/2016 Prophylactic ovary removal Dx 8/2018, Stage IV
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Mar 17, 2017 02:16PM - edited Mar 17, 2017 02:49PM by syncsister

My radiologist diagnosed me with RIBPN March 10, 2017 on the right side, based on my symptoms and from a contrast MRI done Dec. 2016 that showed damage to the brachial nerve. I also have inflamed cartilage in my right sternum and ribs (costochondritis), in the radiation field. Taxol chemo may have contributed to the condition; by week 12 of it, last June, I had some numbness in both arms, that went away, eventually.

I have had right shoulder nerve pain off-and-on since early December, seemingly triggered by therapeutic massage given by a physical therapist. I went to the ER with shoulder pain, and they did a CT scan and diagnosed it as spinal radiculopathy (?) , although the scan showed no damage to the discs. The pain continued, also in my legs, so my onc doc ordered a bone scan, and also a head and neck, upper torso contrast MRI, but there were no signs of tumors. The pain in my legs was thought to be caused by Arimidex, which I was told to stop taking. At that time the neurologist recommended more exercise and more relaxation; I took 6 weeks off from work and exercised in a warm therapy pool 3-5 days a week.

By Jan. 2017 I could swim 10 laps, of various strokes, and was working full time again, and had little pain. However after I started Femara in early Jan. the pain in my thumb joints and feet eventually got bad (I couldn't use my hands or walk without pain), so my doctor told me stop it after 5 weeks, and those pains went away, and I felt much better. However, the shoulder nerve pain gradually came back in Feb 2017, and this time also my arm and hand were affected. The the pain got worse in March, there was also some numbness. I went to see my radiologist. He prescribed prednisone 20 mg per day, and I will taper down to 5 mg per day, and it helps a lot. Rad doc is thinking nerves are somewhat damaged but will improve.

He also referred me to an occupational therapist who has promised to touch me as little as possible, giving me exercises to do on my own and monitoring my progress. She said I have adhesions on my shoulder blade, ribs, sternum, arm, which cause pain and stiffness.

I have not been diagnosed with lymphedema, I bought a sleeve to wear for plane flights, but have never had trouble with that. The OT thinks I might have some cording, she can't see it but I seem to have the symptoms. I had a series of breast cancer surgeries within 12 weeks which may have contributed to some of my movement problems. After my original breast cancer diagnosis in Nov 2015, I had 3 surgeries (lump. with bad margins, lump. with bad margins, and then masty), and my left lung collapsed during the mastectomy surgery from the insertion of the mediport. To fix the collapsed lung a drain box was inserted into the left neck/shoulder area for about a week, and it caused nerve pain at that time.

So, in summary, I had a variety of treatments done that caused tissue and nerve damage, and I have a lot healing left to do! :-)



syncsister Dx 11/2015, IDC, Right, 6cm+, Stage IIIA, Grade 3, 9/19 nodes, ER+/PR+, HER2- Hormonal Therapy Arimidex (anastrozole), Aromasin (exemestane), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Chemotherapy AC + T (Taxol) Radiation Therapy Breast, Lymph nodes, Chest wall Surgery Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy
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Jul 20, 2017 07:16AM LaurieO1 wrote:

I too, have RIBP. My journey is a little different from yours but we have wound up in the same place anyway. I was first diagnosed in 1989 at the age of 43. I had a segmental mastectomy, axellary disection, chemo and 36 radiation treatments. Never had any arm problems. Fast forward to 2001 I started to have shoulder pain and loss of range of motion. After 2 months of physical therapy recommended by a shoulder specialist I asked my PCP for something else as this was not working. To make a long story short it was found that I had a 4 centimeter tumor in my Brachial Plexis. By the time I got to the oncologist he found one in my neck too. After they biopsied that one they found that It was recurrence BC. It was Her2 positive which they had not yet discovered in 1989. This time I had chemo, 36 more radiation treatments and cyber knife to the shoulder. (This is not surgery but a more intense radiation to the shoulde) After all this I did well. I was in a study for Herception and continued getting that every three weeks for 10 years. Still only minimal shoulder pain and a little swelling in my arm. About 6 or 8 months ago I noticed my shoulder pain was getting worse and radiating down my arm. I saw my oncologists and by this time had lost feeling in my fingers.He sent me to a onco neurologist. Since then I have had numerous tests, he put me on Trental400mg 2x day and vitamin E 400 units 2xper day. He did not put a name to it but said that I have scar tissue from the radiation. It was not until I put my symptoms in a search engine that I was able to put a name to it. RIBP. I guess I shouldn't complain as I am still alive but this really sucks. I have lost all my fine motor skills. I'm not one to ask for help.

But this has changed everything. Can't write a check, peel a potatoe, open a jar button a shirt and the list goes on. I think I have to turn the neurologists loose and see the radiation doctor, he may understand a little better. The neurontin seems to help I take 1600 mg per day and it helps with the tingling in my arm. Sorry for going on but this feels good getting it on paper. Hope to hear from others in the same boat




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Jul 21, 2017 06:49PM Binney4 wrote:

Laurie, welcome. I'm so sorry for the struggles that have brought you here, but glad you found us, and I hope you'll find both support and practical coping ideas here. Have you checked out the RIBP page at StepUp-SpeakOut? I hope others will be along soon (though this is often a slow thread).

http://www.stepup-speakout.org/Radiation_Induced_B...

Do let us know how the Trental/Vitamin E works out for you. It's a promising treatment regimen, especially when started early on. You'll want to get a referral to a qualified lymphedema therapist as soon as possible, since early intervention with swelling is a great way to keep that from progressing. Anyone on your healthcare team can write a referral for evaluation and treatment. Here's how to find a trained lymphedema therapist near you:

http://www.stepup-speakout.org/Finding_a_Qualified...

Please don't apologize for "going on" here, as that's what we're all here for. And please do keep us posted. Gentle hugs,
Binney


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Jul 22, 2017 07:37AM LaurieO1 wrote:

Thanks for the encouragement, I'm seeing the radiation doc 8/2 I'm hoping he can give me a referral to someone who understands this. I go to a big University Hospital, you would think someone knows about this! Hoping.

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Jul 22, 2017 12:32PM Binney4 wrote:

Laurie, I'm looking forward with you to some real expertise! Please let us know what you discover.

Hugs,
Binney

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Jul 23, 2017 06:48PM marianelizabeth wrote:

I have had this thread as a favourite for a couple of weeks but lots going on including what might be RIBP. I did post a few days ago on "Venting about permanent neuropathy" thread which is unlikely what is happening to me~~at least I hope not! A few women also let me know that it would be doubtful.

For me it is tingling/burning and pain in my hands along with pain either radiating to or from my scapula. I got Lymphedema for the first time in late April while flying. I had my compression sleeve on and was even on a lie flat bed in business class a (a big treat as I was using all my points. I had flown longer flights in January and March for NZ so was really surprised to see my hand like a balloon. Anyway, long story short I was on my way to Nepal to lead my swan song trek which I did do~~Mustang which is a high altitude trek. The lymphedema was there but did not bother me.

On my return to Vancouver I already had 6 monthly appts. made and by that time I did have the tingling in my hands and the pain from my scapula but still not bad. However my implant redo only less than 6 months prior, was already contracting and cording starting, the reasons for the redo in December. My PS decided to remove all ASAP and scheduled that for June 26 whereas it took me well over a year to wait for the previous surgery. We were moving also in June and there was a fair bit of stress~~duh! But all the problems were getting worse and by the morning of surgery, I could hardly wait for anesthesia everything hurt so much. I had hoped that would resolve the issues but no and the past weeks have intensified the pain and my fingers and hand have tingling/burning and intense pain at times along with the pain from scapula and through my arm. I now have numbness in my under forearm where there is mild edema. The strength in my hand has decreased remarkably in the past 10 days.

I had an ultrasound of axilla and supraclavicular area July 11 and unremarkable. I already had an MRI booked for same and since then my cancer agency has worked hard to decide what to do and luckily head of radiation was in on a weekend a couple of weeks ago when the MRI dept. was trying to decide on two MRI's. After lots of consolation the MRI July 31 is to be C-Spine and brachial plexus in hopes of finding out where the nerve damage is coming from. I also started Lyrica last Sat. 75 mg twice a day. I think it may be helping but am not jumping up and down about adding another drug.

I have not been able to lie on my right side for a month as immediately the pins and needles start and arm to hand goes numb. Wish I was left handed too! Possibly the Lyrica, but I am sleeping better and not taking any Zolpadem which was I was taking most nights though a small amount~~2.5 mg.

So that is my went for the day and am hoping one of you has similar circumstances. We are off to a folk festival today for the weekend so it should be fun and take my mind off this. Certainly it is a mystery.

Now home from the folk festival and last night was mostly sleepless with the pain and sharp zaps through my arm and into my fingers. We spent a few hours at the festival today and I loved the music but felt like I was constantly nursing the whole works with more shooting jabs. 8 days to MRI and not looking forward to them. Lyrica was supposed to be assessed after a week (yesterday) but not sure if it was me or doctor to assess! I don't see a doctor until day after MRI.

So that is my story for now.

breastcancereh.blogspot.ca Surgery 9/7/2012 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 10/15/2012 AC + T (Taxol) Surgery 3/5/2013 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right; Reconstruction (right): Tissue expander placement Hormonal Therapy 4/29/2013 Arimidex (anastrozole) Radiation Therapy 5/7/2013 External: Lymph nodes, Chest wall Surgery 12/6/2013 Reconstruction (left); Reconstruction (right) Surgery 12/12/2016 Reconstruction (right): Fat grafting, Silicone implant Surgery 6/26/2017 Reconstruction (right) Radiation Therapy 9/8/2017 Surgery 9/9/2019
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Jul 23, 2017 11:50PM - edited Jul 24, 2017 12:06AM by hugz4u

marianeliz. Hi I live near you and although I have only skimmed your post due to being busy and haven't digested your post yet I'd like to recommend a top notch lymphedema therapist. Pm me if your interested. You won't be disappointed.

Edited: ok I read your post. You have a big mountain to climb but we can support you here. Sometimes we don't have all the answers especially with what you might be dealing with. However, we can feel some of your pain and understand.

I think if would like excellent lymphedema treatment I have the girl for you. She has been my therapist since masectomy over for 12 years. She has what they call in the le industry "excellent hands"

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Jul 24, 2017 02:28PM marianelizabeth wrote:

Just realized that I neeed to update info here. hugz4u I moved to Victoria in June. It certainly kept me busy as we arrived in Victoria June 20 and I headed back to Vancouver June 25 for my June 26 surgery to remove all~~capulectomy, revisions, removal of implants etc. I also returned for the ultrasound at BCCA July and the MRI is also at same place. So far I am being treated in Vancouver since everything is there for now. I have been referred by Dr. Elliot Weiss to Janet Sprague an RMT for measurements, wrapping etc. He also referrred me for an EMG at Holy Family and that date is in August but have heard nothing from RMT. BTW, Dr. Elliot at St. Paul's says the tingling/burning in my hand and fingers are not LE symptoms.

Right now it is less the LE that is a concern as the tingling etc. have increased in such a big way along with huge lost of strength and that has happened only in the past 10 days so whatever is causing all this is moving fast. However, some of the issues are worse at different times so not continual for all~~tingling and burning in hand all the time but shooting electrical pains intermittent and pain to or from scapula is there but can really get bad. Took 2.5 mg of Zolpadem last night and slept 11 mucneeded hours. Last night typing on computer with right hand was near impossible while right now just uncomfortable.

One week today MRI and next day I see my MO who is new to me as mine goes on sabbatical July 31.


breastcancereh.blogspot.ca Surgery 9/7/2012 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 10/15/2012 AC + T (Taxol) Surgery 3/5/2013 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right; Reconstruction (right): Tissue expander placement Hormonal Therapy 4/29/2013 Arimidex (anastrozole) Radiation Therapy 5/7/2013 External: Lymph nodes, Chest wall Surgery 12/6/2013 Reconstruction (left); Reconstruction (right) Surgery 12/12/2016 Reconstruction (right): Fat grafting, Silicone implant Surgery 6/26/2017 Reconstruction (right) Radiation Therapy 9/8/2017 Surgery 9/9/2019
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Aug 9, 2017 08:59PM Binney4 wrote:

Mariaelizabeth, thinking of you and hoping you have some answers by now.

Hugs,
Binney

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Aug 9, 2017 09:30PM Binney4 wrote:

I just today found a new study that looked at a new therapy called "Scrambler Therapy" that attempted to relief the chronic neurological pain that sometimes follows breast cancer treatment. It did NOT address RIBP specifically, but the technique may be hopeful for the pain related to RIBP. More information here:

http://www.sosido.com/articles/scrambler-therapy-f...

Here's a brief summary:


Scrambler Therapy for the Treatment of Chronic Post-Mastectomy Pain (cPMP).

Smith T, Andrea L. Cheville, Loprinzi CL, Longo-Schoberlein DCureus. 2017 Jun 21;9(6):e1378 [OPEN Access] Chronic post-mastectomy pain (cPMP), including post-lumpectomy pain, is common with no established ways of treatment. We treated three consecutive patients referred with cPMP with scrambler therapy (ST), a non-invasive electrical neurocutaneous stimulation. Treatment was given across the area of pain following the dermatomes for 45 minutes daily, for several consecutive days until relief, and then was repeated as needed. The ST MC5A device synthesizes 16 different waveforms that resemble action potentials, delivered to the surface receptors of the c-fibers, to send "non-pain" information along the damaged pathways to reduce central sensitization. All three had marked (over 75%) and sustained (months) reduction of allodynia, hyperalgesia, and pain. All reported marked improvements in their quality of life and normal function. One woman was able to stop chronic opioid use. No side effects were observed. Scrambler therapy is a promising way to relieve cancer and other types of neuropathic pain, and may be helpful in cPMP. Further prospective trials are warranted. PMID: 28775918 [PubMed]


I would LOVE to see this tested with RIBP pain, so will be watching for further news on this technique. I bit of treatment hope would be wildly welcome here!

Hugs,
Binney

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Aug 10, 2017 02:23AM marianelizabeth wrote:

Binney4, more info but still no defintitive answers. MRI showed enhancing tissue and head of radiology who got involved earlier then asked for a chest CT with contrast and I had it Sat. on a long weekend in Vancouver as there was a cancellation. 10 hour day in transit but so worth it to have it done quickly. I went back over yesterday for an appt. at the pain and symptom clinic at the cancer agency. The doctor there asked if I wanted her to call Dr. Martin the radiologist to see if he could check on CT results. Long and short is that yes he could see a lump snd will do an ultrasound guided biopsy which is yet to be scheduled. Looks like less any chance of RIBP and more likely recurrence.

Due to the pain, last week. I started on Oxycodone but yesterday it was changed to Oxyneo twice a day 10 mg snd it is helping.

I have to say I am relieved that the team is working together to try to find an answer.

breastcancereh.blogspot.ca Surgery 9/7/2012 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 10/15/2012 AC + T (Taxol) Surgery 3/5/2013 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right; Reconstruction (right): Tissue expander placement Hormonal Therapy 4/29/2013 Arimidex (anastrozole) Radiation Therapy 5/7/2013 External: Lymph nodes, Chest wall Surgery 12/6/2013 Reconstruction (left); Reconstruction (right) Surgery 12/12/2016 Reconstruction (right): Fat grafting, Silicone implant Surgery 6/26/2017 Reconstruction (right) Radiation Therapy 9/8/2017 Surgery 9/9/2019
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Aug 10, 2017 01:49PM Binney4 wrote:

Oh, mariaelizabeth, I'm so glad your team is working quickly, and I'm looking forward with you to getting on top of this promptly. The distance you have to travel is sure crummy, but great care is worth a lot. It's a relief to have the pain under control, now just deep breaths and ONWARD!

Hugs,
Binney

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Aug 13, 2017 07:35AM LaurieO1 wrote:

Well, met with the radiologist on Tuesday, August 1 and he concurred with the neurologist concerning the Trental and vitamin e but also felt I should try Hyperberic Oxygen Therpy so on August 3rd I met with that doctor and he too felt it would help. I started the next day. I am schudled for 30 treatments that are 2 hours each. It is kind of a pain getting there every day but if it works it will be worth it. Well, just another option for you all to consider. From what I understand they use this for wounds that won't heal, for carbon monoxide poisoning, the bends for divers among other things. Just hoping it helps

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