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RIBP & CIPN - Nerve Damage from radiation and chemo treatments
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CindyGraeff

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Re:RIBP & CIPN - Nerve Damage from radiation and chemo treatments - Thursday, June 09, 2011 4:25 PM
Thanks Pat!

That's great information - I looked up Dr Stubblefield at Sloan-Kettering - It looks like he's got a our back's on this issue! Here is the link if anyone wants to look it up too.  http://www.mskcc.org/prg/prg/bios/666.cfm

How refreshing to find someone dedicated and understanding to our plight!  :)

He terms our symptoms "radiation fibrosis syndrome" .  So, I did some research on that term, and found a power point he put together, that he used to speak at a 2010 medical convention.  I wish I could have heard his presentation.  I also see he has a medical publication that may be good reading.  I do not have access/subscription to these publications personally, but I may be able to obtain it.  The abstract is at http://www.ncbi.nlm.nih.gov/pubmed/21600368

I see you live in NY state - I am in TX, but I used to live in PA - I have been to Sloan-Kettering in 1983 for my Hodgkins Disease - as a last resort for treatment protocol.  Saved my life. 

Please keep us posted on your progress with him!  I am very anxious to hear more. 

Stay Strong,
Cindy
Breast Cancer Survivor
Diagnosed 11/17/05
double radical mastectomy - right tumors 5 & 7 cm - left contained pre cancer cells
100% Estrogen Positive
HER 2 Negative, 5/8 nodes, Stage III
8 chemo cycles - CAT (Cytoxan, Adriamycin, Taxotere) - first 4 Cytoxan Adriamycin;  last 4 Taxotere - completed 05/23/06
33 radiation treatments - along right mastectomy scar and auxillary nodes - completed 08/08/06
Hodgkins Disease S
CindyGraeff

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Re:RIBP & CIPN - Nerve Damage from radiation and chemo treatments - Friday, July 01, 2011 10:40 AM
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,
Cindy
Breast Cancer Survivor
Diagnosed 11/17/05
double radical mastectomy - right tumors 5 & 7 cm - left contained pre cancer cells
100% Estrogen Positive
HER 2 Negative, 5/8 nodes, Stage III
8 chemo cycles - CAT (Cytoxan, Adriamycin, Taxotere) - first 4 Cytoxan Adriamycin;  last 4 Taxotere - completed 05/23/06
33 radiation treatments - along right mastectomy scar and auxillary nodes - completed 08/08/06
Hodgkins Disease S
PDV1949

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Re:RIBP & CIPN - Nerve Damage from radiation and chemo treatments - Friday, July 01, 2011 4:03 PM
Hi Cindy,
 
I'm thrilled you are scheduled for a complete evaluation by Dr. Stubblefield, and I pray he will have everything you are seeking to improve your QOL.
 
I too have a consultation appointment on 8/18/11 with him, and also hope for the same!
 
I may need to return to see him again, but it's only a 5 hour trip, and I have relatives and friends to stay with if I need a few days. I was hoping his botox or other injections might help me. But we'll see what he says, I'm up for anything that will improve QOL.
 
I wanted to also mention the Texas Brachial Plexus Institue in Houston to see if maybe they could assist when you return. I don't know if you're nearby, but they do treat adults, and they do offer PT. They don't specifically mention brachial plexus injuries following chemo or radiation, but they have highly specialize MD's who probably could help those of us with CIBP/RIBP if only they knew the problem existed!   
 
I'm at pdvautrain@msn.com I hope you will contact me via email to send me a copy of his paper and also so we can exchange emails and phone numbers. If we're in NYC at the same time, and time allows, I may try to call or see you. My appointment is at 4 pm, and I'm traveling with my sister from Long Island, off the Jersey shore. It just so happens we'll be there on a 2 week vacation when the appointment comes up - what a co-incidence!
 
Can't wait to hear how it all goes for you. I'm so excited for both of us! We'd better tell Dr. Stubblefield there may be more coming now that the word is out!
 
Prayers and all my best to you and your QOL!
 
Take care, Pat 
 
CindyGraeff

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Re:RIBP & CIPN - Nerve Damage from radiation and chemo treatments - Friday, July 29, 2011 3:53 PM
Well.... I had my "rash" checked by a dermatologist that's on my right arm and chest.  It looks nasty, even when not itching, kinda like very thin scarred skin – oh wait – it is scarred - by the radiation.  Arm/chest biopsies are benign, and a condition mostly caused as an after effect of chemotherapy/radiation. He gave me some topical cream to help calm it down. However, while I was there, he noticed a spot, smaller than a dime, on my right thigh. He took a biopsy there too. That one is Basal Cell Carcinoma. He removed it this week. What was less than a dime size spot is now a 4" incision. Ouch! It was rather interesting to look at.  Haven't noticed any other spots.... :)  So, cancer #3 has paid an unwelcome visit. Whoever said "three's a charm" is a liar!
Next week, I need to have a cardiac catheterization as a more thorough look into my Cardiomyopathy and increased symptoms I am having.  Yes, the Cardiomyopathy is also a direct result of the chemo/radiation….. another reason we need more attention given to the survivors, pay attention to what’s happening to the lives saved, and work at kinder, gentler, cancer killers – does anyone at SGK read these posts?  Hey!!  Pay attention to us!!!
It’s almost time (< 1 month) for my 5th year (from end of treatments), 6th from diagnosis, breast cancer cancerversary.   No matter how many of these we got through, there is always some anxiety that comes along for the ride. 
In the meantime, I am looking forward to my visit to Memorial Sloan Kettering Cancer Center and Dr. Stubblefield.  I will be posting each day I am there with updates on progress and information.  ;)
Stay strong,
Cin
Breast Cancer Survivor
Diagnosed 11/17/05
double radical mastectomy - right tumors 5 & 7 cm - left contained pre cancer cells
100% Estrogen Positive
HER 2 Negative, 5/8 nodes, Stage III
8 chemo cycles - CAT (Cytoxan, Adriamycin, Taxotere) - first 4 Cytoxan Adriamycin;  last 4 Taxotere - completed 05/23/06
33 radiation treatments - along right mastectomy scar and auxillary nodes - completed 08/08/06
Hodgkins Disease S
CindyGraeff

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Re:RIBP & CIPN - Nerve Damage from radiation and chemo treatments - Wednesday, August 03, 2011 5:43 PM
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/
Breast Cancer Survivor
Diagnosed 11/17/05
double radical mastectomy - right tumors 5 & 7 cm - left contained pre cancer cells
100% Estrogen Positive
HER 2 Negative, 5/8 nodes, Stage III
8 chemo cycles - CAT (Cytoxan, Adriamycin, Taxotere) - first 4 Cytoxan Adriamycin;  last 4 Taxotere - completed 05/23/06
33 radiation treatments - along right mastectomy scar and auxillary nodes - completed 08/08/06
Hodgkins Disease S
CindyGraeff

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Re:RIBP & CIPN - Nerve Damage from radiation and chemo treatments - Sunday, August 07, 2011 6:52 PM
Well... Holy hell - what was supposed to be an easy-peasy cardiac cath to measure the interior blood pressures, and take a closer look at the mitral valve disfunction, turned into the discovery of 3 blockages.... One required a stent, the Proximal Circumflex Artery, with 80% blockage.  The other two are the Right Coronary Artery at 40% blockage and the Left Coronary Artery at 50% blockage, these will just be monitored.  So instead of a half day hospital test, I had to spend the night.  it sure could have been worse.  I'm glad I had it done before a heart attack came along.  I just have a very nice shade of purple bruise along the top of my thigh/hip, and a new drug to add to the list of many others.  My Cardiologist was not on rotation to release me from the hospital, one of his partners was instead.  So I will talk to my Cardiologist at an appointment this week and get the details on everything else.  A week to go, and then it's off to Memorial Sloan-Kettering Cancer Rehab for a new adventure in survivorship :) 
Breast Cancer Survivor
Diagnosed 11/17/05
double radical mastectomy - right tumors 5 & 7 cm - left contained pre cancer cells
100% Estrogen Positive
HER 2 Negative, 5/8 nodes, Stage III
8 chemo cycles - CAT (Cytoxan, Adriamycin, Taxotere) - first 4 Cytoxan Adriamycin;  last 4 Taxotere - completed 05/23/06
33 radiation treatments - along right mastectomy scar and auxillary nodes - completed 08/08/06
Hodgkins Disease S
CindyGraeff

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Re:RIBP & CIPN - Nerve Damage from radiation and chemo treatments - Tuesday, August 16, 2011 2:30 PM
Here it is - the first installment of my trip to MSKCC Rehab and Dr. Michael 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…  J
My first Occupational Therapy is later this afternoon… I’ll write more tomorrow, after my EMG and PT/OT sessions. 

Stay Strong,
Cindy
Breast Cancer Survivor
Diagnosed 11/17/05
double radical mastectomy - right tumors 5 & 7 cm - left contained pre cancer cells
100% Estrogen Positive
HER 2 Negative, 5/8 nodes, Stage III
8 chemo cycles - CAT (Cytoxan, Adriamycin, Taxotere) - first 4 Cytoxan Adriamycin;  last 4 Taxotere - completed 05/23/06
33 radiation treatments - along right mastectomy scar and auxillary nodes - completed 08/08/06
Hodgkins Disease S
CindyGraeff

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Re:RIBP & CIPN - Nerve Damage from radiation and chemo treatments - Wednesday, August 17, 2011 9:04 PM
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.  J
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….  J
Stay Strong,
Cindy
Breast Cancer Survivor
Diagnosed 11/17/05
double radical mastectomy - right tumors 5 & 7 cm - left contained pre cancer cells
100% Estrogen Positive
HER 2 Negative, 5/8 nodes, Stage III
8 chemo cycles - CAT (Cytoxan, Adriamycin, Taxotere) - first 4 Cytoxan Adriamycin;  last 4 Taxotere - completed 05/23/06
33 radiation treatments - along right mastectomy scar and auxillary nodes - completed 08/08/06
Hodgkins Disease S
Jean Southward

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Re:RIBP & CIPN - Nerve Damage from radiation and chemo treatments - Thursday, August 18, 2011 11:44 AM
Wish you the best Cindy! This sounds as if you have really been thru the mill.
Jean S

Hope is that thing with feathers that perches in the soul and sings the tune without words and never stops...at all.

Emily Dickinson

IDC Stage IIB Grade 3 BC DX on 2-10-09
HER2+++
ER/PR+ 90% 
2 of 6 Node Positive
Double Mastectomy 2-23-09
Completed Chemo TC 7-10
Herceptin until 3-20-10
Arimidex for 5 years Started 8-09 
CindyGraeff

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Re:RIBP & CIPN - Nerve Damage from radiation and chemo treatments - Wednesday, August 24, 2011 11:25 PM
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,
Cindy
Breast Cancer Survivor
Diagnosed 11/17/05
double radical mastectomy - right tumors 5 & 7 cm - left contained pre cancer cells
100% Estrogen Positive
HER 2 Negative, 5/8 nodes, Stage III
8 chemo cycles - CAT (Cytoxan, Adriamycin, Taxotere) - first 4 Cytoxan Adriamycin;  last 4 Taxotere - completed 05/23/06
33 radiation treatments - along right mastectomy scar and auxillary nodes - completed 08/08/06
Hodgkins Disease S
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