radiation-induced brachial plexopathy
Comments
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I have just started chemo, and radiation to start in August, But with these postings Iam not so sure I will do the radiation , I already have some neve damage in my rt hand and cannot deal with any further problems. Haven't talked to radiation people yet . Has anyone decided to forgo the radiation?
Sherry
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Sherry, I sent you a private message.
Binney0 -
Hi Sherry - I'm certain that Binney was able to supply you with a wealth of accurate and extremely helpful information. She has for me and many others. As always, I thank her for being a well informed advocate, ready to help us all.
I will add that I would not have changed my treatment plans for the Hodgkins Disease in the 80's or the Breast Cancer in 2006. They saved my life twice. However, I was not aware of the destruction of nerve cells I would endure down stream from overlapping fields of radiation and higher than average exposure to the combination of chemo taxotere and vincristine. If I was made more aware of these issues, or rather, my Doctors been more aware, they could have taken the steps to ensure my brachial plexus was adequately protected during the 2006 radiation. They were fully aware of my heavy dose mass given in the 80's, and knew there would be additional good cell damage with the Breast Cancer treatment. I immediately pointed out the pain, numbness, solid like cement, symptoms I had at the beginning of my radiation treatments in '06 to the Radiology Dr. However, she said she didn't know why that was happening. And the radiation protocol remained the same for 33 sessions. These are the things they should know, and need to know.... Treat the patient, not just the disease. The more we speak out, the more we can help the medical field and researchers see the quality of life they just saved. Believe me, when I say I am extremely impressed and happy that we have the technology and knowledge from research, education, clinical trials, and patient input, to have saved my life twice, is an understatement. I am still kicking - not as good as I once was - but still kicking just the same because of it.
My advice to you, and all others still in treatment phase, is to be aware of changes in your body, and speak to your Dr in detail. Be sure she/he understands what you are feeling.... Not just physically, but emotionally. Bring up the concerns you have and don't give up until they provide adequate answers that put you at ease. They are indeed the professionals, with way more knowledge than I have in my little finger. Making them aware of what we feel physically and emotionally helps them help us. Voice your concerns, gain as much knowledge as you can about your treatments, and be sure to fight the war against those nasty cancer cells with everything possible. Your treatment plan is a decision only made by you and your doctor. That is the most important thing there is now - focus on getting past this interruption of your life and getting well!! Keep us posted on your progress.
Stay strong,
Cindy0 -
I am looking at radiation this month, but because of the glossed-over immediate side effects and delayed side effects, not to mention possibility of secondary tumor, lung scarring and cancer, and damage to bones and heart, I have asked for partial breast radiation, either external or internal. My DCIS was very close to the nipple, i.e. at the farthest extent possible from the chest wall, and I am asking to have the radiation only in the local area.
My rad onc. has not been thrilled with this idea, but she's going along with it, I guess because she might have me bolt out of treatment altogether if she insists on whole breast irradiation.
I am not recommending this plan to anybody else, but I'm frankly afraid of radiation side effects and this is my pick of poisons. I should add that I already have an incomplete spinal cord injury as a result of spine surgery about 4 years ago, edema (probably not lymphedema) in one leg from that, plus chronic pain and chronic fatigue of some 15 years standing. So you give me any more deficits and I won't be good for a darn thing.
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Anne, hello! I wish you the very best with your rads treatment!
I wonder if you've seen a well-qualified lymphedema therapist for an evaluation of your leg edema? They deal with edema of all sorts and might be able to help you ease that situation. And the bonus would be s/he could take baseline arm measurements for future reference and give you some personalized risk-reduction tips for your arms as well. You'd need a referral from any doctor on your team -- here's how to find a well-trained one near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htmBe well!
Binney0 -
Binney, etal...Hello..I see many new names here. Welcome, I hope that this sounding board brings you comfort and answers. I know that is has been a haven for me, and I have missed dropping in.
I realize that it has been a long time since I last posted. Our journey has been a long one. Mom had been on chemo until the beginning of April. Over a year and a half. The last 4 months were really difficult as she developed problems with her stomach and lost about 65 lbs...and 4 inches in height!!! The good news, she appears to be in remission. And the talc treatment she received in November seems to be stable. Although a CT scan next week will give us a clearer picture. She has also gained 5 lbs..LOL We never guessed that she would be celebrating weight gain in her life time.
The other curious thing is that her chronic pain from the RIBP has been minimized. She is no longer taking neuronton. That has been since her last stay in the hospital. Her arm is still completely paralysed and the Horner's syndrome and paresis of her left diagram are stable. Her Breast Cancer support group have suggested that she become their poster child.
As always she is in great spirits, and is praying that she will be here to see her first three great grand children arrive this fall. Her only grand daughter is expecting twins in September, and her eldest grand son's wife is expecting too.
Big Smiles!!! I am doing well. Mom has not been able to do too much at the store, so I have taken on her buying responsibilities and my sister has added mine to her load. I cannot imagine Mom not being apart of the business, and she tries to spend an hour or so a week with us. I really miss her when she is not here.
I will have to spend a little bit of time and try to catch up with you all.
Keep well, and I pray that this note finds you all at a good time.
Terri
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Terri, how wonderful to hear from you! Give Connie my love and tell her I'm so happy to hear she's eating and gaining. And also a HUGE congrats on a whole flock of great grands about to make their splash in the world. Do they live close enough that she'll be able to see them? I sure hope so -- simply amazing!
Truly, Connie, you are such a blessing and inspiration to me -- thank you for being there and carrying on in such a loving way. I hope you're finding the moments of joy in today.
Terri, thanks for the update. And how are YOU? (Besides swamped, that is
) And your son -- any summer plans for him?It's very hot here already, so I'm working on indoor projects to keep everybody busy and COOL. Fortunately a close neighbor has a pool we'll soon be soaking in on a daily basis. It helps to cool off in the evening as the sun goes down -- makes sleeping in bulky lymphedema garments a bit easier.
Hugs all around!
Binney0 -
Hello, all,
Here's a blog post written by a PT who is also a Sister here at breastcancer.org, about making computers easier to use when are hands are compromised. Lots of interesting products there that could help:
http://accidentalamazon.com/blog/2011/06/01/adapting-practical-stuff-for-hands-arms/My favorite is a website that teaches one-handed typing on a normal keyboard. Check it out and see what you think:
http://www.aboutonehandtyping.com/howto.htmlHope everyone who's back East and in the South is surviving the heat wave we're hearing so much about. Take good care!
Binney0 -
Thanks for the info Binney. I had a student who had dyslexia and used Dragonfly Naturally Speaking to take his tests. It was fantastic! I also USED to teach calligraphy but cannot now with the wrapping and I think the glove I am getting will also inhibit me. I wonder if the gripper shown will help? I will have to try one. My handwriting is shot right now. I teach courses in special education and get all kinds of catalogs with adaptive equipment in it. I never thought to look in them for some ideas. I will now. Becky
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Michael D. Stubblefield, MD has got it goin' on for us! He terms these RIBP survivor complications "radiation fibrosis syndrome".
http://www.mskcc.org/prg/prg/bios/666.cfm0 -
Hmmm. Cindy, radiation-induced fibrosis (RIF) is different from RIBP, though if they're diagnosed at all the two are often confused. RIF has been shown to respond to trental and Vitamin E, especially when treated early. But RIBP, unfortunately, doesn't. Here's a section with recent trental/E studies:
http://www.stepup-speakout.org/Radiation_Induced_Brachial_plexopathy.htm#drugs%20trenIt's so hard, but so important, to get a firm diagnosis. I just wish there was enough awareness within the medical community to make it possible to get early and accurate diagnoses for all these radiation-induced complications. Without that basic awareness it's not even possible to get anyone's attention on prevention, treatment, or cure -- and that's what we need!
An update from Elise Radina who is doing the interview study on RIBP -- because some people who signed up for the study didn't even have RIBP, they're redesigning the announcement to eliminate people who stumble into it without even understanding what RIBP is, much less being diagnosed with it. So they'll pick up again with the study, probably as soon as August.
Onward!
Binney0 -
Thanks for clarifications Binney! There are indeed so many suffering with no firm diagnosis. I was lucky enough to stumble onto a great Dr who was able to recognize the symptoms and order the correct tests for my issues. Indeed I have multiple complications from the various treatments and exposures.... Having both RIBP & CIPN complicates things. The RIF could very well be what is affecting my neck, jaw (harder and harder to eat chewy foods), left arm, ribs. Right side is definitely the RIBP. I can feel the progression day to day in my right fingers, hand, arm, shoulder. Scary and sad. Legs, feet, left hand are all crazy with CIPN.... Dang it's hard figuring out what's going on where! Prior to the breast cancer they had tried to implant a port and could not get through the scar tissue from the Hodgkins radiation on my left upper chest... Had to go into my neck to catch the artery. Chest x-rays show a lot of scar tissue throughout, which tightens and limits the ability to take very deep breaths.
I'm glad Dr Radina is going to be able to continue her study and gain useful and helpful details. I'll look forward to her study picking up again.
Try and stay cool this summer! Hope you are well.....0 -
Through a previous Susan G Komen forum post (thanks Pat!), I was able to find a Dr who actually specializes in cancer rehabilitation for the type of radiation induced nerve damage I have. He wrote a medical publication I was able to obtain and read - here is a link to the abstract http://www.ncbi.nlm.nih.gov/pubmed/21600368
I was able to obtain a full copy of the publication. As I was reading it, I thought he had written it about me? The Hodgkins Disease radiation I received in the 80's and the prolonged and progressive damage it causes all by itself, and then add some overlapping radiation to the mix. So, I sent him an email - he is at Memorial Sloan-Kettering Cancer Center in NYC, Dr Michael Stubblefield. He responded in less than 2 hours - there's a surprise - and indicated he could do an evaluation/testing/etc. on my current condition and work up a plan of physical therapy and occupational therapy - would I be able to come to NYC and stay two weeks? So, I did some more research - will my insurance cover out of state/region hospital/medical fees - and it does. Sloan-Kettering is accepted in my plan and so is the Dr. I will have the usual co-pay and deduction responsibilities. Plus flights, and hotel, are on me. The hospital works with several hotels that provide discounts to those staying overnight for outpatient procedures. Hotels are not cheap in Manhattan..... the discount is actually quite substantial - so that helps. Dr. Stubblefield is not going to be able to cure, or fix, the nerve damage... he will be able to perform the needed testing/evaluations in order to pinpoint the areas I may be able to strengthen or adjust to using, and hopefully help ease the incessant pain and paresthesia - and I'll be able to bring back a plan to follow when I get back to TX. HHHmmmmm.... a plan? I always need a plan of action - and with this issue, no other Dr has been able to provide one... I have, in my court, some great supportive friends. Two of them, will be able to tag team travel with me to NYC for the two weeks I need to be there. That is incredible! Surrounding myself with positive forces is always a strength that can't be measured.
I'm optimistic about this trip, as it truly has been the only Dr (other than research universities/clinical trials) that I have found who truly understands the problem - one that won't stare blankly and tell me there is nothing they can do to help. I'm scheduled to go in August.
I totally get the severity of my condition, and know it can't be fixed - but to be able to enhance what I still have and overall quality of life is a great sounding plan to me. It feels like a last ditch effort in a lot of ways due to the closed doors, lack of medical research/funding/knowledge there currently is ... it's an opportunity/chance I need to take.
My anticipated result -
1. A clear understanding of what damage has occurred
2. What to expect going forward.
3. An actual plan of action.
4. Physical therapy to help with range of motion.
5. Occupational Therapy to help with day to day life adjustments beyond what I've taught myself.
6. Pain/paresthesia relief.
7. A better outlook on quality of life. What a concept?
Stay Strong,
Cindy0 -
It is with a very heavy heart that I am writing to let all of you know that my Mom passed away this morning. The past two weeks she had been in the hospital, and had become paralysed from the waist down. At first we thought that it was because of a series of falls she had, but the Dr thinks that the cancer was in her spine. It had also spread to her right lung. God in His grace and wisdom, made sure that her mind was clear, and she was able to laugh and joke with all of her children in the days before her death. He also called her as she slept. She had many miracles throughout her 12 years as a triple negative survivor. Finding you all here to share your journey with RIBP was certainly one of them. I will check in from time to time, and I will continue to be a voice for you, however, when ever I can.
with Love and gentle hugs
Terri
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Terri, it's tempting to tell you how sorry I am for your loss, but in your mom's case it just seems more appropriate to say how grateful I am to have "known" her (and your family). In my mind she will always be very much full of life and spirit. The Welcome Home party God has in store for her will be so full of joy and wholeness, and it makes me smile to think of her enjoying God's presence and that promised feast -- no pain, no paralysis.
It must already seem so lonely to you -- and to your son and everyone who loves Connie. I'm praying you'll soon be laughing together with all the happy memories you've shared. You have so much on your hands now, with the work as well. So prayers also for extra strength for the days ahead, and lots of hands to pitch in and help. Please keep us posted as you're able. Thanks you so very much for being here with us.
Be well, all of you,
Binney0 -
Terri,
I am so sorry about your mom, because no matter how old or how ill, it is always too soon to lose a parent. I share Binney's sentiments for you exactly, and the only thing I can add is that I have always admired your incredible devotion to your mom, and there is absolutely no way you can ever reproach yourself for anything. No daughter could have done more than you, and I really do believe that Connie lived as long as she did only because of you. Her situation seemed quite dire, more than once, but your care and determination rode to her rescue each time. As it will be with all of us, eventually there is no more time.
You are a strong woman, Terri, and I know that the love and support of the friends and family that surround you will help you through this sad time. Please stay in touch with all your invisible friends here too, because we don't want to lose you either.
Rest content, for a task well done,
Barbara-
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Great work by Chemobabe! Komen does have the ability to do the "right thing" and use the multitude of $ raised to better serve the current needs of those recently diagnosed, with better/safer/kinder treatments, and for those who have survived the hell of the worst of it. Come on Komen!! We all need to make our voices heard - or change will not happen.... http://www.chemobabe.com/2011/08/attention/
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Bumping this thread for a lovely Ozzie lady I just met, hope she finds it helpful.
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I've posted my first installment of my NYC Memorial Sloan-Kettering Cancer Center Rehab and Dr Stubblefield evaluation at http://community.breastcancer.org/forum/69/topic/762916?page=2#idx_56 if you'd like to follow along with this adventure in surviving survivorship.
Stay Strong,
Cindy0 -
Cindy, for those here who might have trouble accessing that link, I've copied your comments below. Thanks for sharing them!
Here it is - the first installment of my MSKCC Rehab and Dr. Stubblefield evaluation.
Sunday, Aug 14th - Arrive in NYC! Good smooth flight, quick taxi ride to the hotel... raining and 70's - much different than the TX heat we left behind!
Monday, Aug 15th - Started with MSKCC Financial Center - to obtain my insurance info and explain benefits - from there I headed to Dr. Michael Stubblefield's office for my initial evaluation/consult. It began with a staff physician and medical student asking many questions regarding my past medical activity, specifically the Hodgkins Disease and related radiation/chemo treatments in the 80's, followed by the additional Breast Cancer radiation/chemo received in 2006. What was refreshing, and encouraging, about this initial discussion was that they understood the damage I have, the related nerve pain, muscle loss, and addition of heart complications. I didn't get the usual ‘deer in the headlights look, and shrug of the shoulders, of I don't know what to do', response. They then examined me and tested strength tested my fingers, hands, wrists, forearms, biceps, shoulders, neck, legs, and feet. After which, they discussed with Dr Stubblefield. He then came in, introduced himself, and said I believe we need to move to a larger room. OK - wasn't sure why at that moment, but OK just the same. As we walk into the larger examination room, he asks if I mind if his physician and intern staff join us so he can share our discussion and his examination for teaching/learning purposes. I welcome that - the more the merrier! The medical world desperately needs to learn about this virtually unknown, survivor quality of life, problem. So, in came 5 additional Drs. He then asked me questions about pain, numbness, paresthsia and performed some basic strength tests. He physically examined me, discussing out loud his findings for the benefit of the room - and he showed us all MRI graphics of patients with radiation induced brachial plexus involvement, along with photos of neck, back and spine distortions from the radiation nerve damage and related muscle atrophy. He indicated that my severity of nerve damage is mostly from the Hodgkins Disease mantle radiation from the early 80's - the Breast Cancer overlapping radiation of course added to the progression. I am apparently in a 1% population of overall patients he has seen. Interesting indeed. It doesn't make me feel better, or worse, necessarily, as I believe I am in the right hands for diagnosis/help now.
The loss of right hand/arm functionality, from nerve damage, is not repairable. The neck, shoulders, and left arm nerve damage, muscle weakness, and overall pain, is attributed to the radiation, and is also not repairable.
The numbness, paresthesia, pain in my lower legs, feet and toes, would not be related to the mantle radiation.
He has scheduled an EMG for Wednesday, that will be performed in the office. I also have been scheduled for two MRIs next week in the MSKCC hospital locations - one for the brachial plexus, the other for the entire spine. These will rule out any other potential issues, like a tumors - benign or malignant - other nerve disorders, spine problems. Also, they will measure the level of damage done, allowing a full diagnosis and prognosis, followed by a plan of action.
Dr Stubblefield is an incredibly personable and knowledgeable MD. He specializes in helping the survivor, surviving the treatments that saved their lives. Bringing back, some of the quality of life those of us have been missing for years. He works closely with the Physical and Occupational Therapy center and directs them to treat the individual needs of each patient. He will also share the plan for PT/OT with my Doctor back in Texas to continue once I return.
After my meeting with Dr Stubblefield, I headed to my first Physical Therapy session. There, I received a very detailed examination, and analysis of my physical condition. Measurements and notations made. During the entire time, they explained clearly what they were seeing, doing and documenting, along with why. This allows them to focus on the areas of weakness, which will in turn allow strengthening in core areas. Most of yesterday's time was spent on analysis and planning. Although I did get some homework! Diaphragm breathing while lying down - and learning how to keep the side-stitches under control. I'm already using muscles that have not been used in years. Also, a big change for me - will be practicing, and eventually mastering, sleeping on my back. Very big change - I have been a stomach sleeper for most of my life... and if not on my stomach, I am on my right side... two positions that in the long run do me no good. So, sleep positioning with correct pillow placement is in my future. Apparently, it's not normal to toss and turn all night long... who knew?? Correct positioning equals more restful sleep... 
My first Occupational Therapy is later this afternoon... I'll write more tomorrow, after my EMG and PT/OT sessions.0 -
MSKCC Rehab - second installment -
Tuesday, Aug 16th, I had my first Occupational Therapy session. It was mostly information gathering for the therapist, and a few measurements. Several were related to range of motion and flexibility. Another was sensory - a series of pen-like gadgets (5 or 6), each with varying size fiber attachments, from the thinness of a hair, to the thickness of a drinking straw. With my eyes closed, each size was touched to different points on each finger and hand to determine what size I could feel. Right hand could only feel the thickest one (drinking straw like) fiber, and only in a few spots. Left hand could only feel the middle sized fiber on fore and middle fingers. And the next thicker fiber on other two fingers. After that, she had me squeeze a hand held gadget that measures the strength of grip in lbs of pressure. The right hand gripped at its maximum 13 lbs of pressure. The left hand gripped at its maximum 45 lbs of pressure.
Wednesday, Aug 17th, was my EMG/nerve study with Dr. Stubblefield. An electromyogram (EMG) measures the electrical activity of muscles at rest and during contraction. A nerve conduction study, measures how well and how fast the nerves can send electrical signals. Not a very pleasant test, but certainly not the worst either. The overall study took 2 ½ hours.... I am very sore this evening.... muscles and nerves are very unhappy with those studies. The result is confirmation of RIBP (Radiation Induced Brachial Plexopathy) and Radiation Induced Fibrosis. Damage is more extensive on the right side, entire neck, and both shoulders. The Brachial Plexus has 3 main sections. The lower section is severely and extensively damaged by the radiation, which killed the nerves by stripping the sheathing off, causing them to short circuit, burning up the nerve cells. This lower part of the Brachial Plexus affects the hand/fingers. The middle portion of the Brachial Plexus is also damaged, in the same way, but not quite as severely. This middle section affects the forearm. The upper section of the Brachial Plexus, pertains to the upper arm. I do not have much damage to that section, so my upper arm may retain more strength. Loss of right hand usage will continue and eventually become a dangling arm extension. Forearm will continue to become weaker, and not be much more useful. Neck and shoulder weakness will also progress. The weakness is caused by the inability of the damaged nerves to feed the muscles. The nerve cells that have been destroyed are unable to repair on their own or with any medical/science treatments. Since the muscles can't be fed, they too die, which is the atrophy. No CIPN (Chemo Induced Peripheral Neuropathy) findings - which is good. Lower leg weakness, paresthesia and foot drop are stemming from my lower back, possibly where I had surgery/fusion in 2003.
I am going to be fitted with a neck support that simply acts as it sounds. I'll use it when I tire or am sitting up for more support, less fatigue on neck/shoulder muscles. Also, I will be fitted for lower leg/foot braces to help with walking and providing foot support. So, prognosis isn't great - but at least there are items to help, and range of motion/core strength/stretching/posture building PT/OT to build on. I need lots of help with that, and this is definitely the place to get it.
I asked Dr Stubblefield about stem cell regeneration, and if it is a possibility for this kind of nerve damage - sadly, he shook his head no, and said it is not anywhere in the works for this survivorship problem.
I have a full spine MRI and a brachial plexus MRI scheduled next week for further diagnosis and definitions.
Dr Stubblefield is amazing, as is the entire MSKCC Rehab PT/OT team. I have been given so much attention and assistance and information in just the first 3 days, I feel my head will explode - in a good way. Cancer survivors are living much longer than before, and they are just discovering the intensity and magnitude of the long term effects from treatments. Focus now, is improving the quality of the life that's been saved.
More to come after further PT/OT and MRIs completed...
Stay Strong,
Cindy
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Cindy, thanks for the detailed information. I'm interested in any practical helps you can share with us. For instance, why is back-sleeping going to be a help? Can you tell us more about the pillow arrangements that help with that?
So glad you're feeling so supported and HEARD! It's been a long haul getting to this point!
Be well!
Binney0 -
Cindy,
I so appreciate you taking the time to provide us with such detailed information about what you are learning at MSKCC. I hope that finding someone who has the experience and knowledge of RIBP will bring you some comfort and piece of mind knowing that there are some things that can be done to increase your comfort level and quality of life. You said it so well, that with people surviving cancer for so much longer that there needs to be a focus on the quality of survivorship.
Best wishes,
Deb
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MSKCC Rehab - third installment -
Middle of week two in NYC - Memorial Sloan Kettering Cancer Rehab - Both MRIs are completed. It'll still be a few days till the results/reports are received.
I was fitted for and received the lower leg/foot braces and neck support on Friday. The leg/foot braces may need to be adjusted. And the neck support will need some getting used to - both are not to be worn all the time, just when most needed to aid when doing more walking, and when my neck muscles tire from holding my head up during the day.So far, I've had 12 total sessions of physical, occupational, and manual manipulation therapies - learned so much in this short time. They always give me printouts with detail pictures and instruction on each exercise. It's a good thing they do - chemo brain would never be able to remember it all! I had to by a binder with sheet protectors to keep all the exercises in. There are many posture correcting exercises I can do on my own, that help stretch and position my shoulders and neck. Most are very simple, yet very beneficial. Breathing from the diaphragm is helpful for core strength. Using the diaphragm allows deeper breaths and better posture. Remembering to sit and stand erect as if there is a string pulling my head straight up to the ceiling. Squeezing shoulder blades together while leaning against the outer corner of wall. Pushing each shoulder against a towel along the edge of a wall corner, while keeping my body straight. Multiple hand flex and finger coordination exercises, some using play-doh type putty.... I always liked play-doh! There are strength exercises to help maintain my upper arm muscles, as they are least affected by the nerve damage. These are more isometric, not using any weights. The weights dramatically increase my stinging paresthesia pain and what I call "bee stings" in fingers/hand. The PT manual manipulation is incredible... she is able to get down into the tissue, with very little pressure, but so exact in positioning that it has already helped loosen my bound shoulder from my neck. Amazing. She gets into my neck/head at just a couple points, and it makes a huge beneficial difference. Learning again how to use leg muscles that haven't been used properly in quite some time is a big challenge, and probably the most physically demanding. The entire plan will be brought home to continue. Suggestions on therapists at home were even provided, based on their completed levels of training and knowledge. Goals of feeling better and enhancing quality of life are being met.
Learning to sleep on my back is still taking time to get used to - sleeping in a hotel bed isn't helping either - back sleeping is best because it opens your chest for better breathing, and helps keep the shoulders stretched out, much better for back health. Its important to use a flat head pillow, and be sure to place it above the shoulders, so it isn't pushing your shoulders forward. Placing pillows under the legs helps keep the natural curve of your back. Once you are in a comfortable position, there should not be much movement through the night. A long restful sleep - what a concept?! Sleeping on your side can cause the shoulders to fold inward, allowing them get into the position that only encourages them to want to stay that way - binding the scar tissue/fibrosis even tighter.
Two more days of therapy and learning to go - then I head home to continue on this path of rehab and QOL goals. This has been incredible - thanks to the MSKCC rehab medical staff - thanks to my life partner - thanks to my supportive friends who came on this journey with me - thanks to the internet for providing so much knowledge at my fingertips, and connecting new friends for support and knowledge sharing..... let's see, who is that? Al Gore??? LOL
More to come after I get home and have the results of my MRIs.
Stay strong,
Cindy0 -
Cindy, wonderful! Thank you so much! So very glad you're getting such help and encouragement!
Be well,
Binney0 -
Terri: I am so very sorry for your loss. I have not been a frequent poster but I have read all of your posts about Connie's struggles and so appreciated your continuing to keep us involved in your family. Sending you and your family much support as you adjust to life without Connie. Thank you for all that you both did to share your RIBP and LE stories and treatment with us.
Best, Erica
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MSKCC Rehab - 4th Installment
It's been a couple weeks since I've left my new friends at Dr Stubblefield's Cancer Rehab Center. I was able to speak with Dr Stubblefield on the morning prior to leaving NYC. He talked to me about the MRIs I had earlier in the week. The total spine MRI showed no additional cancer or tumor activity. I do have moderate to severe stenosis at L2-L3 and severe stenosis at L3-L4. This is what affects my lower legs/feet/toes with weakness, pain and numbness/tingling. The MRI of my Brachial Plexus did not show any additional cancer or tumor activity. It did show that the bottom 3rd portion (nerves leading to the hand/fingers) has been severely burned/damaged by radiation. The middle portion (nerves leading to the forearm/wrist) have also been severely burned/damaged by radiation. The upper portion (nerves leading to the shoulder/upper arm) has been burned/damaged, but not severely. From the elbow to fingers will continue to get worse with pain, numbness, tingling, and muscle atrophy. Eventually becoming nothing more than a dangling appendage. Time frame is an unknown factor. The upper arm, should potentially remain stronger, allowing movement to some degree. It's not the best of news, but at least confirms all that has been occurring over the years, and more so over the past 12 months. Dr Stubblefield told me that my Brachial Plexus radiation damage was the worst he has yet to see... Overall radiation fibrosis throughout the neck and chest areas was also abundant. He said that my individual case shows just how radiation treatments can damage. In particular, the Hodgkins mantle treatments of the 80's, followed by Breast Cancer overlapping radiation. He said that he is going to change his presentation and related MRI slides at his upcoming conference to use my case, because it clearly shows the long term affects of the damage caused by the radiation. He told me that i am an incredibly strong woman, for he understands the results on every day life of this type of damage. He said to be able to do as much as I force myself to do is amazing in itself. This somewhat embarrassed me, and at the same time gave me more strength. I have always done what I have to do to endure and hang onto quality of life. The same as we all do. It's never ever been easy as all of you who have had these same symptoms well know. It felt good because finally, a medical professional who actually knows what the hell has happened, and understands what the hell we actually have, and doesn't look at me with that "deer in the headlights I don't know what to tell you" look. He also reached out to my oncologist here in TX to discuss. She in turn told him she will discuss with her radiology partners. Going forward, the more they understand the long term effects of overlapping radiation fields for patients with prior mantle radiation, the more consideration they can give to the individualized treatment plan. And the more they can give to the patient for combined Dr/patient decisions on their treatment plan. I was at my oncologist this week for my 5th year "cancer-versary" from end of treatments. November 17th is my 6th year from diagnosis mark. We talked specifically about the findings of my MSKCC visit, and her discussion with Dr Stubblefield. She was grateful for his call and indicated the new information was beneficial for her and the radiologist for treatments on patients with prior Hodgkins radiation. YAY!! Finally, recognition from the oncologist world! That alone is a huge leap in the right direction.
By the way, my overall visit with the oncologist was good! No obvious signs of recurrence.... A little lab work, and I was dismissed for 1 year! That's a HUGE step!
Now, I continue with the PT/OT plan established by the MSKCC Rehab group. I still have, and will continue to have, the intense nerve pain, and constant paresthesia 24/7.... That does not go away, or get better - no magic pill or treatment. I totally get the severity of my condition, and know it can't be fixed.
The entire journey to MSKCC was well worth the time, cost, EMG pain, and exhaustion endured. The last day there, I hugged Dr Stubblefield, and cried. Same thing with the PT/OT staff.
My anticipated results were - and the RESULTS
1. A clear understanding of what damage has occurred - CHECK
2. What to expect going forward. - CHECK
3. An actual plan of action - CHECK.
4. Physical therapy to help with range of motion. - CHECK
5. Occupational Therapy to help with day to day life adjustments beyond what I've taught myself. - CHECK
6. Pain/paresthesia relief. - UNFORTUNATELY NO
7. A better outlook on quality of life. - CHECK
Overall, SUCCESS!
Stay Strong,
Cindy0 -
Cindy, thank you for sharing this whole chronicle. No real surprises, unfortunately (I was kinda hoping he'd have some insider information about pain relief, y'know?
) But definitely a very helpful experience overall. And it must be good news to you that he'll be using your data as a teaching tool -- YES! GO TELL 'EM, DR. STUBBLEFIELD!For our part, we could have told HIM you were a strong woman! All he had to do was ask us!
Be well, Cindy!
Binney0 -
Thank you for your in-depth recount of your experience.
Ralpha
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Cindy: Thank you so much for the update on your visit. You are so generous with us. It is very helpful to hear other's experiences with getting pain relief or better quality of life or simply acceptance or understanding. Tough to have an outcome from cancer treatment that saps the love of life. We all need to share our resources. Other than cymbalta which reduces my hand pain from a 10/10 to a 7-8/10 I haven't found any other treatments. My current persistant hand weakness is minimal but I do have moments after activity where I momentarily lose ability to lift my arm. I had the hand weakness start at the same time as my pain. Over the years the fine motor weakness stabilized but I have lost total sensation in my hand (except for the burning pain
). This new intermttent arm weakness just started. Did anyone have the paresis progress like this? When I was first diagnosed with the RIBP I did take 6 months of trental/vit E and have no idea if this is what halted my hand paresis or if it was just coincidence. It seems like the paresis part is so variable for many of us. Also not everyone has the pain as a main part of this. My hand feels like it is burning 24hrs/day. Anyone else have burning pain?Best to all of you. Cindy thanks again for sharing your experience.
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