radiation-induced brachial plexopathy
Comments
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Thank you, Anna, and the same to you!
Ladies, I just discovered this BRA FOR WOMEN WITH LIMITED MOBILITY -- and it's even kinda pretty!
http://www.healthproductsforyou.us/products/Wear-Ease-Bras/2141/Wear-Ease-Sarah-Bra-Women.html
Click on the picture where it says "click to enlarge" and it should open a set of pictures of how it goes on, adjusts, and comes off with one hand.
Have any of you tried it? Any thoughts?
Hugs all around. Terri and Connie, continuing prayers for both of you.
Binney0 -
I have tried various over the head type sports bras and they do not work well for me. I had a frozen shoulder (on the "good" side) - about 7 years ago and almost anything over the head is hard for me.
I might think there is little support for a larger person, since it seems to be very soft material. Just my observation. The front hook bras work pretty good for me, but much easier to get off than put on...
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Hi Watts,
I'm sorry to hear you are having a recurrence. Please know you are in my thoughts and prayers. Wish I was close enough to give you a gentle hug.
Ralpha/Ronimom
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Nancy, Mom got a magnetic closure for her bra. She is larger and found when she is having a "bad" day this is the best closure for her to use. Otherwise she uses the back fastening bras and hooks them in front and shifts it around until the cups are in front. ( She swears she is going to petition the special Olympics to add a one armed dressing event.)
The bra looks interesting Binney, however with total arm paralysis I don't know, plus adding a prostheses may make over the head cumbersome.
Mom had really felt good, and has been enjoying the holiday.....Thank you all for keeping her in your prayers. With the holiday schedule, I think Mom's biopsy results are taking longer than we had hoped. We have an appointment tomorrow with her oncologist and hope to have some answers.
hoping this finds you all at a good time, and that you are finding joy in the holiday.
Terri
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well, I wish I was posting good news. Just got back from the oncologist...and the results from Mom's biopsy show BC cells. A PET scan has been scheduled for the 7th, to make sure it is not showing elsewhere. Once we have those results then we will know her treatment plan. She is very positive about dealing with this and is planning a cruise in April!!
thank you for all of the prayers and well wishes. I will fill you in once we know more.
Gentle hugs to you all
Terri
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Terri, I'm so sorry I can't even tell you. Your mom is an amazing woman, and obviously you take after her. I'm so glad about her April cruise plans, and I'll be looking forward to it with both of you. Where is she planning to cruise? I'm already praying for perfect weather and and a perfectly refreshing trip, with great improvement in the scans beforehand.
In the meantime, praying with you for better news on the 7th, with no spread anywhere else. Waiting rots.
Be well,
Binney0 -
Just adding a quick note. The PET scan for Mom was changed to two oclock today. She has an oncology visit this morning first. Thank goodness the answers are going to happen sooner than we originally thought.
I know that I don't need to ask you to keep her in your prayers....I know you will all be with us in mind and spirit.
sending hugs to you all and hoping this note finds you at a good time
Terri
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Terri, the day is clear for me, so prayers all day long -- with hope and joy.
Binney
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Did you know there is a website you can visit that teaches one handed QWERTY touch typing? I just found it today and printed out a picture showing one handed finger placement in color, and which fingers use which keys. It means re-learning touch typing. I am going to learn this. Is anybody doing this already?
Go to www.aboutonehandedtyping.com/howto.html.
I hope this will speed me up! You too!
Ralpha
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Did you know there is a website you can visit that teaches one handed QWERTY touch typing? I just found it today and printed out a picture showing one handed finger placement in color, and which fingers use which keys. It means re-learning touch typing. I am going to learn this. Is anybody doing this already?
Go to www.aboutonehandedtyping.com/howto.html.
I hope this will speed me up! You too!
Ralpha
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Connie, you're in my thoughts and prayers today, for bright and joyful moments in the middle of all this rotten waiting.
Ralpha, when I pull up that page there's a whole list of sites. Did you find one in particular that offered on-line typing lessons? Or do you mean you're ordering a set of lessons? Do keep us posted! I use a FrogPad, which is a one-hand keyboard. It required re-learning toch typing, but it's smooth as butter now and I've been very happy with it. Still, if you could learn to use a regular keyboard one-handed, that'd be a real boost, as it would work on everybody's computer!
HELP WITH MEDICAL TRAVEL:
The National Lymphedema Network newsletter this month had a news item about the National Patient Travel Center, which offeres one free roundtrip flight per year to patients who have had cancer for distant specialized evaluation, diagnosis or treatment of either cancer or its side effects, including both lymphedema and RIBP. I called them this morning just to check out their services. In short, you could travel to another city to see a LE or RIBP doctor (or even therapist if you don't have one near you) for diagnosis or evaluation. They also offer referral to other patient-travel organizationsfor on-going travel needs for continuing therapy. The process involves calling them to start the process. They need statements from any one of your doctors requesting distant service, and they then make arrangements with either Delta or United to fly you where you need to go. The process takes 5 to 7 working days, so planning two weeks in advance gives them the time they need to complete the arrangements. The number to call is 1-800-296-1217.Sounds good to me, and thought it might be useful to some of you who need better help than you have available close by.
A New Year full of only good surprises to each of you!
Binney0 -
Drum roll please...most of the waiting is over and the PET scan results are in.....The cancer is only just under Mom's skin...no organs involved!!! yipee...yipee...we go Monday to the oncologist to get additional pathology and treatment plan. The radiation oncologist feels that it needs to be treated systemically. Mom is doing well, although we are all exhausted from waiting.
Thank you for all your prayers and good wishes.
we are happy tonight!! Terri
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Ta-da!!
Terri, I'm so glad to hear this news. Doing a happy dance with you tonight, and will be looking forward to a sensible and doable plan on Monday. Oh, whew! Hope you both sleep well tonight, and will soon be ready to go knock those rotten cancer cells to kingdom come.
Happier hugs!
Binney0 -
Ditto on the happy dance. Best wishes and hugs, Nancy
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Well, I had written a long post yesterday, and then I lost the whole thing before submitting it. So I will try again to update you all on Mom.
She had her first Chemo this morning. We were told it would take between 4-6 hours. She was done in an hour!! She is on Gemzar and will have 3 weeks on one week off. Then repeating as long as necessary. I photographed the lesions, which have increased in number since she discovered them about a month ago. The PET scan did not show the lesions either...so we are praying that they were caught early. And the photos will help us see if the drug is working.
Her arm has been ballooning up and down, and we have been challenged to keep it under control. Thank goodness that the chemo only lasted an hour, it was hard for her to get comfortable.
Thank you for all of your prayers and good wishes.....we are feeling them with us on this journey. I hope that this note finds you all at a good time.
Terri
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Terri, thank you for the update. So glad the infusion wasn't as long as advertised. How's she handling it today? I'm so sorry about the stupid lymphedema acting up like that. Does she have a comfortable night garment that would help? I'm praying about her comfort level, as pain is so draining and disheartening.
A bit of joy would help, so I'm asking for that as well.And how are YOU, Terri? Hugs, prayers,
Binney0 -
Binney, I am so blessed to have you all here, as well as the rest of my family. We are 6 siblings, and although we are spread out over the east coast we are close. I also have two sisters close by. Mom has been weak and the spasms on her right side have been her cross. She went to the therapist yesterday and she was able to relieve much of her discomfort.
We are not sure if the fatigue is from the Gemzar or if it is from thelack of sleep from her spasms. We are hoping that this friday she is feeling strong enough to go to a concert at church. There is a young man named Bryan Murdaugh who is a singer songwriter. Bryan was in my niece's weddingand we really enjoyed having breakfast at the hotel with he and his family. So a little joy to look forward to. If she can not go I will go and get a copy of his new CD for her "29"
Thank you Binney...
Terri
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Terri, you're all an inspiration! Tomorrow is the concert, yes? Good! Looking forward to it with you, and hoping Connie can go too.
I did a search for "Gemzar" here and did come up with some mentions of fatigue. Here's one:
"I have been on Gemzar now for 3 months and it is a much easier chemo with few side effects. I do have some fatigue, and after two weekly tx, I have to take the 3rd week off due to plt depletion, but they bounce right back after the week off. I also had to start Neupogen for the WBC's."
But for sure pain is exhausting too -- really glad her therapist is so capable and caring. What a gift! (I emailed her awhile back, by the way, but have not heard from her -- but then she's busy caring for people!)
Hugs to you both,
Binney0 -
Good Morning!! Just to update you on Mom. The last chemo was so different than the first. The back spasms had subsided and she was able to relax during the infusion. We were even laughing. She did make it to the concert that night and Church on Sunday too. It was so good for her to get out and see everyone...those hugs are so soul healing. There is still some fatigue, but she seems to be doing so much better. It also appears that the skin lesions are disappearing too.
Jeanne told me that she had heard from you Binney, but I am not sure if she has had time to answer you. I will try to remember to talk to her on Monday when Mom has her next appointment.
Watts, I hope you are doing well, with all of your therapies. You have certainly not been far from my thoughts as Mom and I embark on this new journey. Of course that goes for all of you. We are asked so often "what is wrong" with Mom's arm. And we tell people about all of you here.
I hope no posts, is a sign of peace in all of your lives.
Hugs to you all.
Terri
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Terri, I've been following you in your good and bad "adventures" with your mom, and I am still impressed with your devotion to her, and your determination to get her the treatment she needs. I am really happy to hear the latest report from you, which is really excellent, considering where you were not so long ago. I agree that getting her (and yourself) out among people and places that make her happy and make her feel like she is still part of the community is the best possible medicine for her until they actually do find the right medicine for her.
I cannot answer your queries and comments about the various medications Connie is taking, but I do know a thing or two about RIBP. Was it you who asked why they cannot or will not diagnosis that? The reason is that they diagnosis by a system of elimination. First they have to rule out new cancer, then they start in with carpel tunnel, allergic reactions, your imagination, and finally ectopic pregnancy (kidding) before they finally give in and label it RIBP, which was pretty obvious from the beginning. It is maddening because by then they have put you on a whole slew of medications that you really didn't need, and you're not getting the therapy you need for the arm.
Anyway, I want to wish you and your mom continuing good luck with this healing process, and I look forward to your new posts, all good, I hope.
Take care,
Barbara-
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Barbara, and friends, Thank you so much for all of your thoughts and well wishes, Mom and I are are so blessed to count you all as friends and your feedback is so appreciated.
I would like to update you on the latest in our current journey. Mom finished her first three weeks of chemo, and developed a case of cellulitis...she had neupogen shots and then a week reprieve. When we went for her oncology appointment yesterday, the Dr was pleased with his visual exam..and is reducing the dosage of the chemo, in the hopes of avoiding the drop in her white blood count, with out compromising the progress. She had an infusion yesterday and is feeling great today. She even came in to the store for a little while today.
Watts, I hope that you are doing well with your chemo. I often think of you when I am sitting with Mom during her infusions. Nancy, how is the "keepa your hands off my arm" campaign working?
I may think I am strange, but I can see a humorous comic strip about some the trials you have all gone through. I draw one for our store, based on some of the things that happen in our craft classes, and I use our craft logo Happy the Crafting Crab. I know that often humor is the one thing that keeps us sane.
Well enough said. I hope that this little tidbit of news brings a smile to your lips and a gentle Valentine's Day, celebrating with those you love.
Terri
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Hi Ladies,
A lot has been going on with me health wise. My chemo was stopped because my cancer was resistant and my heart function wasn't tolerating the Herceptin. A few weeks ago I began radiation on the tumors in my neck and shoulder, but it was interrupted by infection and hospitalization for 5 days. I am at home now recouperating on infused antibiotics. I should resume radiation soon and discuss other options with my oncologist and radiologist. The good thing about going in the hospital was being seen and evaluated by so my specialist who have made recommendations and services available to assist me. Ialso had fluid removed from my lung while in the hospital. I am now on oxygen.
THANK YOU FOR YOUR WELL WISHES AND PRAYERS.
Terri, best wishes to you and your mother. Hoping all is well with your mother.
Watts
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Terri and Watts, I don't know how I missed these posts, but I'm so glad to hear from both of you.
Watts, what an ordeal you've been through, but it sounds like you're getting lots of good care, and I'm grateful for that. (You're also an inspiration with your gratitude -- thanks for being you!)
Terri, I hope your Mom continues to do well (physically, that is -- she is always doing so well in her great spirit). You had snow in SC, yes? Brrrrr! Hope there are signs of Spring coming along now to warm everything up.
Watts, I don't know where you live, but hope you too are enjoying a season of thaw and renewal.
I wanted to let everyone know that the survey being prepared to look at experience with RIBP is nearly ready to launch. The researcher, Dr. Mei Fu, has been doing it on her own time, as funding is tight, so it's taken awhile. But it is moving forward.
Hugs all around, and continuing prayers,
Binney0 -
Good Morning Ladies, I cannot believe that it has been a month since I last posted. I need to update you all on Mom's progress and a new development. The Gemzar has been a wonder, The skin lesions have all disappeared, and her skin returned to it's normal color. We have had two bouts of cellulitis and 8 neupogen shots. The great news is that this Friday will be her last chemo, to be followed by her leaving on a cruise for the panama canal on the 9th. She is so ready for this trip. (Mom and Dad had planned the trip just before she was diagnosed.)
Mom has also developed another condition connected to the radiation damage. Through her last bout of cellulitis and neupogen shots she experienced extreme shortness of breath and a cough. xray and CT showed no tumor or fluids. We visited a pulmonologist (yes another ologist!) yesterday and he confirmed that the left diaphragm was paralyzed. He told us that the damage to the sympathetic nerve, that was causing the Horner's syndrome, also connects with the Phrenic nerve which effected the diaphragm. In examining anatomy books I can understand why she is having these additional problem arise. Her original radiation treatment included a site on the left side of her neck. Many nerves run along here.
Has anyone else been having breathing problems, and had this diagnosis?
I hope that each of you have been having quiet times. Watts, You are continually in my prayers. I hope that your journey has been easier.
Hoping this note finds you all at a good time, and recovering from a recent bout of pure belly jiggling laughter.
Terri
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Oh, Terri, what wonderful news about the chemo results and the cruise! It's so great to be planning something so joyful. Honestly, you guys inspire! Just a week and a couple of days and they'll be on their way. Beautiful!
The breathing is so discouraging, though.
And so many scary tests to find out what the real problem is, too. The relaxing pace of the trip should be just right for dealing with that.Bon voyage, Connie!
Binney0 -
Binney, thank you for the well wishes, I will pass them on to Mom.
The Pulmonologist decided not to do any more tests than what has been done already. He doesn't think it will show anything different... Mom is happy with that. They are pretty confident that the paresis is being caused by delayed radiation damage. and thankfully was no evidence of any tumors. She had some breathing tests already..a lot of huffing and puffing and blowing all of her breath into a mouth piece. She was exhausted by the time we finished.
We have another appointment to see him again in six weeks. As he said, there is nothing that he can do for her now, she just has to learn how to pace herself. No side trips on the cruise that involve zip cords over the tree tops, or horseback riding on the beach......
I am still praying that some researcher is out there looking for a cure for radiation damage to the human body..and finds one soon. ...
Wishing you a blessed Easter!
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Ladies, it's been so long since we've heard from any of you! Hope all are well. Connie and Watts, please let us know how everything is with you!
Okay, FINALLY! The survey we've talked about in the past is finally on-line and ready for your participation. The first part of it is for any woman who has been treated for breast cancer. That part should only take 10-15 minutes to complete, but following that is a SECTION JUST FOR WOMEN WITH RIBP! It was designed from all the questions you provided, and there are boxes to write about your experience. There is also a box at the end to write anything else you'd like to say about it that wasn't specifically covered by the questions. So the RIBP part will take considerably longer to complete. Please allow lots of time, and if necessary ask someone to help with the typing so you don't tire.
Here's why it's important. Obviously, little is known by the medical community about the actual experience of RIBP, whether symptoms, interventions, psycho-social impact, or coping issues. This survey will help doctors and researchers identify needs for both treatment and further study.
In the more immediate future, this survey will be used as a basis for an issue of LymphLink, the newsletter of the National Lymphedema Network, that for the first time ever will focus on RIBP. It will also be used in the workshop on RIBP planned for the International Professionals' Conference this September, to acquaint medical professionals with patient needs and experience -- something that's obviously lacking!
In other words, by responding to this survey you will be able to make your voice heard within the medical community in ways that have not been possible before. PLEASE make the time to fill out the survey and express your experience and your needs.
I'll post the official notice below, which contains a link to the survey site. THANK YOU, ALL! I'm so grateful to know every one of you -- you've made so much difference in my life.
Hugs, prayers,
BinneyAnnouncing a research study by Dr. Mei Fu of New York University School of Nursing, and StepUp-SpeakOut.org.
Please participate!
We would value your response to the questions on our on-line survey regarding Breast Cancer and Lymphedema Symptom Experience
If you are a female 21 years of age or older and have been diagnosed with and treated surgically for breast cancer, you are invited to share your experience of breast cancer in this online study.
The purpose of this study is to examine the reliability and validity of the Breast Cancer and Lymphedema Symptom Experience Index, an instrument to evaluate breast cancer survivors' symptom experience. Your valuable input will help researchers better understand women's experiences of breast cancer, including symptoms, distress, and quality of life. Ultimately, the information obtained from the study will help to gain insights into the needs of women who have survived breast cancer so that more personalized care can be provided.
The New York University Institutional Review Board "IRB" (an ethical review board that monitors research involving human subjects) has approved this research study.
The study is brief and will take about 10-15 minutes of your time. (Please allow extra time for the RIBP section). You can skip any questions that you might feel uncomfortable answering. Your participation is voluntary and anonymous. We will keep your responses confidential.
Your input is valuable. Please take the time to complete this survey. We appreciate your response!
Copyright 2010, College of Nursing
New York UniversityPlease click to take our survey:
Any questions, please contact us at:
StepUp-SpeakOut.Org
24 East Avenue
New Canaan, CT 0684
info@stepup-speakout.orgMei R. Fu, PhD, RN, ACNS-BC
Assistant Professor
Course Coordinator
Fundamentals of Nursing
College of Nursing
New York University
726 Broadway 10th floor
NY, NY 10003
mf67@nyu.eduThank you for your participation. Your feedback will help further research on breast cancer and lymphedema symptoms in order to improve patient care.
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Binney, and all..I was waiting until Mom and Dad returned from the cruise before I posted. They had a wonderful time, although unbeknownst to us, Mom had developed a UTI two days out. She was able to take an antibiotic on board, and was feeling better, until the perscription ran out. Then her cough and shortness of breath got worse. She called from the airport and sked me to make an appointment with the Dr. She got home Tues evening, saw the Dr Wed AM went for a chest x ray and was diagnosed with congestive heart failure. By Fri she had a hight temp and I rushed her to emergency and we sat for 6 hours...
She had developed accute cellulitis!! 5 days in the hospital, another 5 days on oral antibiotics and she is looking and feeling better than she has in months!! YEAH!!!!
I am excitied to see the questionaire and will have her fill it out soon.
My thoughts and prayers are with you all...hope you are all having a YEAH day!!
Terri
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Hi, Ladies!
Terri, I think you should consider writing a book. The non-fiction version of your life, of course, but everyone will think it is fiction. Your mom has more lives than a cat, thank goodness. Outside of her double whammy, did she enjoy the cruise? (Outside of that, Mrs. Lincoln, how was the play?) I assume she is home now and still feeling terrific?
Binney, I was trying your private address, but was told twice that it is not working. Don't you pay your bills? You will be happy to know that I just finished the survey. I couldn't bring up the LE part of it on my screen, so I just added what I thought would be relevant info.
Did you change your address? Wondering,
Barbara-
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