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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, September 08, 2011 4:53 PM
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,
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, November 09, 2011 2:02 PM
Wanted to share some YouTube video posted by Memorial Sloan Kettering Cancer Center, featuring Dr Michael Stubblefield.  He is describing Radiation Induced Fibrosis, and Radiation Induced Brachial Plexopathy issues for Hodgkins Disease, Head & Neck Cancers, Breast Cancers, and Sarcoma survivors.  Very well done - you'll find these to be easy to understand.  Dr Stubblefield is who I went to specifically see in NYC at MSKCC in August 2011.  My previous installments in this forum were focused on that 2 week visit with him and his PT/OT staff.  This is good stuff!
http://www.youtube.com/watch?v=xumJojH94Ts&feature=youtube_gdata_player
http://www.youtube.com/watch?v=LvZJKNtNXXc&feature=youtube_gdata_player
http://www.youtube.com/watch?v=cp5PGCUYRdE&feature=youtube_gdata_player
http://www.youtube.com/watch?v=dczzQxAaLYQ&feature=youtube_gdata_player

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
Anna Rae

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Re:RIBP & CIPN - Nerve Damage from radiation and chemo treatments - Wednesday, November 09, 2011 4:04 PM
Cindy,

I'm happy for you checking off the items on your list. I also read back through your posts on this thread, WOW! 

Best of everything to you!
Love,
Anna Rae
Like Jerry said, What a long, strange trip it's been... 

DCIS Stage 0, Right Side Unilateral Mastectomy -  May 14, 2010
HER2+ BC Stage 3C, Right Side Lymph Nodes - 6 Months Later
End of Tx, June 8, 2012
NED - July 5, 2012

http://www.caringbridge.org/visit/annaraebamberggilder

Anna Rae
cdicapua

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Re:RIBP & CIPN - Nerve Damage from radiation and chemo treatments - Wednesday, October 24, 2012 9:50 PM
I am so sorry for your pain. I also worried about radiation therapy and chemo.  The long term effect could be awful. But like you said you are in the war to win whatever it takes
Cathy DiCapua
mammogram 8/19
dx 9/4
DCIS
Mucinous carcenoma stage 1 a, bilateral mas/w recon 10/19 , Letrozole for 5 yrs
cdicapua

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Re:RIBP & CIPN - Nerve Damage from radiation and chemo treatments - Wednesday, October 24, 2012 9:53 PM
i am also a patient at Sloan I feel very confident in my drs
Cathy DiCapua
mammogram 8/19
dx 9/4
DCIS
Mucinous carcenoma stage 1 a, bilateral mas/w recon 10/19 , Letrozole for 5 yrs
cdicapua

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Re:RIBP & CIPN - Nerve Damage from radiation and chemo treatments - Tuesday, January 01, 2013 4:48 PM
Cindy Thank You for your post, I chose bilateral mast No radiation or chemo, just letrozole for 5 yrs the side effects are hot flashes, elavated liver enzymes and bone loss, I have severe joint pain and and my wrist , ankle or right ringer will swell to the point that i get black and blue and than go just go away leaving just the black and blue. I had osteo arthritis for 15 yrs never a problem , I am on letrozole for 1 yr. I am also not complaining and the oncologist clearly told me about bone pain and loss. Just wanted to put my side effects out there as well. I can live with all the discomfort and am grateful for the current treatment and options.
Cathy DiCapua
mammogram 8/19
dx 9/4
DCIS
Mucinous carcenoma stage 1 a, bilateral mas/w recon 10/19 , Letrozole for 5 yrs
msamy034

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Re:RIBP & CIPN - Nerve Damage from radiation and chemo treatments - Thursday, January 03, 2013 7:02 AM
Wow-thank you for your post. I, too, am experiencing the prickly, stinging, electric type feelings in my arms and legs. I chalked it up to side effects. I will discuss it with my onco later this month. I stopped the Tamoxifen for now to see if it makes a difference.

I have 'vein pain' where the chemo was administered and collapsed my vein ( I did not have a port)-will that ever go away? They can only draw blood from my left hand now and unless I get an experienced person, it is an awful experience.

I have had acupuncture in the past for other issues and will definitely look into getting insurance approval to get more.

Amy G
IDC and ILC right breast, ER+/PR+, HER2-
Diagnosed 2/7/12
Lumpectomy + 4 nodes (neg) 3/13/12
Chemo started 4/12/12; ended 6/14/12
Radiation completed 8/2/12 
Tamoxifen and Effexor started 8/15/12  
Switched to Arimidex, added Lupron shots and increased Effexor 1/31/13     
7/2/13 heading back to surgeon to get tested for possible IBC :(



    
karey

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Re:RIBP & CIPN - Nerve Damage from radiation and chemo treatments - Monday, January 07, 2013 12:33 AM
I developed peripheral neuropathy after my very first dose of taxol. It quickly spread to both my feet and my left hand but never affected my right hand.

I never noticed it intensify during radiation treatment and in fact, it seemed to be diminishing a year later. In December of 2009, it had left my hand and was reduced to some patchy areas on my feet. I was hopeful it might go away altogether but shortly before midnight on December 10, 2009, I had a cerebral aneurysm rupture and had a subarchnoid hemorrhage and a stroke. I was asleep when it happened but fortunately my husband wasn't yet and he quickly realized something was horribly wrong.

When my memory started to come back a week later, I remember wondering why my feet were tightly wrapped and bound. I looked down at them and discovered they weren't! The neuropathy had returned with a vengeance while it diminished a bit, it has been in both my feet and my left hand from then on.

I was diagnosed with type 2 diabetes just after completing radiation in August 2008. When the ruptured occurred, my husband said my blood sugar went crazy and though I wasn't on meds at the time yet, they had to give me insulin in the hospital for more than a week. So I have no doubt that diabetes played a role in it as well. The thing is I had a lot of bloodwork done prior to chemo and at that time, I was not a diabetic or even borderline so it is pretty certain that the neuropathy was chemo-induced but aggravated by the fact that I developed diabetes and then worsened after the SAH.
Kathy
Diagnosed at age 47
DX: 12/13/07 IDC Stage IIa Grade 3 3.5 cm TN
Lumpectomy 1/30/08 SNB neg
Chemo-2/29/08: 4 A/C 4 Taxol-Done 6/6/08! NED!
33 Rads 7/7/08-8/20/08 Done!
12/10/09 Now Ruptured Brain Aneurysm Survivor!
brezinabnam

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Re:RIBP & CIPN - Nerve Damage from radiation and chemo treatments - Sunday, July 28, 2013 3:29 PM
I was diagnosed with Breast Cancer at the age of 35, now almost a year later, I am still having nerve problems. I have the tingling, the numbness, the feeling that my shoulders/neck are on fire. I also have recurring dizzy spells that just suddenly come on without no warning. Sometimes, it even hurts to move. I was told that I have peripheral neuropathy. I haven't worked since having a double mastectomy and don't think I will be able to back to work when school starts again. I have filed for disability. On top of all that, my cancer is Estrogen based so I will have to have a hysterectomy in the near future. I was wandering if anybody else has had peripheral neuropathy this bad. Did you all return to work? I feel all these decisions are all on me and I'm so confused. Thank you
BBBBOOTS

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Re:RIBP & CIPN - Nerve Damage from radiation and chemo treatments - Wednesday, October 02, 2013 1:19 PM
Cindy -
 
I am so sorry you have had so many distressing side effects.  Talk about bad luck - neuropathy due to chemo, heart damage due to chemo and RIBP.  Could your previous treatment for Hodgkin's have made you more vunerable (not that you could do anything about it)?  I was told you could only receive rad once.  Anyway, I am sorry that you have had to suffer so much.
 
I am very thankful, however, that you have taken the time to discuss your condition on this board. I think I also have RIBP, and have had a huge problem finding anyone that knows anything about it, let alone be able to treat it. 
 
I was dx with breast cancer 10/11.  I had mastectomy 10/11, chemo 11/11 - 3/12 and rads 03/12 - 05/12.  I had 3 tumors, once of whcih was 2.5 cm.  The tumors were triple neg, grade 3/3, and grew in between mammograms (surgeon guessed in about 6 - 8 mos).  All the tumors were very close to the chest wall, so to get clean margins, the surgeon had to remove a lot of tissue.  I think he even removed the muscle fascia.  Therefore, I have a deep "divot" in my chest with just a thin covering over the ribs. 
 
The rad dosimetrist told me that the doctor expected me to have a bad reaction to rad as I had "nothing there" to protect me.  I had 33 rad tx and devoped a huge, deep, draining wound.  I had to take 2 weeks off of work because I could not wear any clothes on top.  It seemed to heal fine, but about 3 mos after rad was done my chest and armpit became hard.  I noticed also that I had dcreased range of motion and was unable to do some things without help.  I also began to have significant pain in my chest, shoulder, arm, armpit and neck.  The pain was of three types: 1) an electrical shocking stinging type pain that started in my chest or armpit and at times traveled down my arm to my hand: 2) a painful
sensation of being stabbed in the back of my arm; and 3) a deep aching pain mostly in my shoulder and armpit. 
 
When all this began interfereing with my work and requiring several doses of pain killers a day, I knew I had to do something.  My rad onc sent me for PT.  I had about 5 months of wkly myofascial release (very painful at times).  He also sent me to a Rehab Dr.  She stated she doubted I would ever have normal ROM in my shoulder and nothing could be done about it.  Her only suggestion was gabapentin (Lyrica) for the pain.
 
The PT decreased the hardness a lot, but did not do much for the pain.  I decided to stop it after about 5 months (it was very expensive).  I learned to avoid certain movements and to avoid moving my arm repetively, as both of these would bring on pain.  I managed for about 4 - 5 months, then everything started to worsen.  Presently I will get pain (slight to severe) when I rest my elbow on the table, sleep on the affected side, drive, put on my coat, reach above my head, reach behind me, and move my arm repetitively  I still have decreased ROM and my arm is weak.  I have recently developed a new kind of pain - a sharp sudden pain in my shoulder or chest that feels like a cramp.  I also sleep poorly, as I am often awaked by pain.  Every doctor and therapist I have seen has told me the cause of my problem is scarred muscles and nerves, but, other than meds, they have no ideas of what to do.
 
I am presently seeing a massage therapist qowk for scar mobilization.  I figured might as well try it as no one else knows what to do, and it is much cheaper than PT.  I can only take gabapentin occas and in small doses, as it turns me into a zombie.  I used to swim for exercise and scuba dive, but can not do either now.  I understand I had a nasty agressive cancer that needed heavy-duty treatment.  I know I might never be able to use my arm the same way I did before.  But, come on, not being able to drive or dress myself?  That seems ridiculous.
 
By the way, I researched RIBP and diagnosed myself.  I have not dared to tell any of my doctors as I think they will be miffed.  I also have lymphedema and wear a compression sleeve.  Sorry to make this so long, but wanted lots of details there for others to see and  recognize (I hope).  Has any one had any luck treating this distressing condition?  I saw the suggestion for acupuncture, will likely try that next if there are no other suggestions.
 
Hang in there Cindy and all my other strong sisters,
bbbboots
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