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 - Sunday, January 05, 2014 1:56 PM
Winter/cold weather is the worst time of the year for my nerve damage.  Even when its 100 degrees outside, my right arm/hand feels cold to me.... but not as bad as this time of the year.  I am currently taking Cymbalta 60 mg once per day, Gabapentin 1200 mg spread out during the day, and Nortripyline 75 mg at bedtime.  These drugs take some of the edge off of the constant stinging, but thats it.  I still get a lot of breakthrough pain throughout the day and night.  Sleep is disturbed with many occurrences. I have more written about this plus several links to publications that are helpful with understanding our nerve damage.  Sadly, there is nothing to reverse the damage and elimination of the progression.  Stem cell research can bring us all so much once the break through the ceiling.  
http://survivingsurvivorship.blogspot.com/2014/01/cancer-survivor-calamities-ribp-ripn_2.html?showComment=1388766165113#c8532585343534244503
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

Sandi Henderson
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Re:RIBP & CIPN - Nerve Damage from radiation and chemo treatments - Thursday, April 03, 2014 8:14 PM
I understand all of the frustration. We do not get our old lives back...it is different now. I am an eight year survivor but I do believe our mental health stuff following treatment is key. One of my oncologists told me that I was selfish for not feeling happy that I no longer had cancer. I have had it three times...still not back to anything close to what I thought was normal.

oceanwitty
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Re:RIBP & CIPN - Nerve Damage from radiation and chemo treatments - Thursday, May 15, 2014 7:13 PM
Hi Cindy, We could be twins ( - Hodgkins ) re: our treatment for bc except I had more than 10 + nodes. I think I had 42 radiation tx's but that's not my point. First, I'm sorry you are going thru this and the only comfort I feel by reading your post is that now I can confirm to my Neuro Dr. that as he suspected, no, I'm not crazy! I do have positive aspects to my life but it get's harder and harder to keep hopeful the more time that passes. I just celebrated (not really but....) 5 yrs. and I'm not sure how much more my family should have to put up with. I can't work. Commitments are futile no much how much I plan ahead. There's no rhyme or reason to the pattern of my symptoms so now I feel like expecting anything is useless. I have a 10 yr. old daughter so basically, her whole life I've been sick. What kind of mother is that? I'm afraid of that answer! I feel that other than my husband, no one believes me!! To his credit, thank God he does but he has NO IDEA how much I cover up!!! If I complained as much as my condition hurt, it would be rare to see me have a good day!! Besides finding the few posts I've found here, the only other place I've seen this MAJOR CONSEQUENCE of using the drugs they used on us is The Mayo Clinic's Message Board. If you Google "hair loss", there are 100,000 topics. How about "reconstruction"? Ok, stop laughing.... But I'm serious, re: your Adriamycin treatments, did your nurse wear a mask and gloves (up tto her elbows) when she was pushing it? Mine did. I remember the look on her face when I asked her if the mask was really necessary? She was offended at first but then realized where she was....in a chemo room with 10 other cancer patients. She also didn't appreciate my jokes about it either. The other cancer patients loved my chemo days. I know it's my defense mechanism....it's ok I think....because I am aware of the gravity of making jokes about suffering if I am one of the sufferer's. Anyway, truthfully, I don't know if "I would do it all over again". My husband will not tolerate such thoughts but I think if we had an honest, intellectual pro v, con discussion, he would admit this too. To think that you are 4 more years into this, gives me less hope. How do you work? Are you self-employed? I don't want to make you dwell or feel worse so I'll stop here. I hope you have relief from your symptoms soon :-) Laugh often and a lot, Tammy

oceanwitty
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Re:RIBP & CIPN - Nerve Damage from radiation and chemo treatments - Thursday, May 15, 2014 7:46 PM
Dear Sandy, I hope it's an EX-oncologist!!! That's awful!!! What about "doing no harm??" Wow!! Ya know, the number 1 question I am asked by low-level medical personnel is "OMG, what did your husband say when you told him about your decision to have the radical double mastectomy?" At first, I was shocked. Now, I simply say "He knew better than to say that!" My surgeon spent more time trying to convince me that I should get a second opinion on reconstructive surgery then she did explaining my cancer and all of the particulars. In all of my follow-up visits, she would try again. Eventually I was cross with her and told her off but she probably would still try if I hadn't said what I said. I couldn't have reconstruction because I was thin to begin with, had small breasts and my diagnosis required so many chemo's (9) and radiation treatments (in the 40's...and yes, it is in my records but I can't remember) and my tumor was so large in my R breast that there wasn't a way (at the time...it was 2008). Anyway, my point is how much energy and attention is given to nonsense is amazing! Serious, life altering side effects are never mentioned...ever!! On this message board, obviously not this topic, I want to respond to some of the newcomers (to breast cancer, not this website)....truthfully. I would never but I do think about it! I don't want to go on and on so I'll leave it there. Laugh often...and a lot :-) Tammy

kthomas41
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Re:RIBP & CIPN - Nerve Damage from radiation and chemo treatments - Saturday, June 28, 2014 4:33 PM
I too have nerve damage but mine is from a surgery.  I was diagnosed Jan 8th 2013.  I had a bilateral mastectomy and a sentinel node biopsy.  The sentinel node was positive so my surgeon took a few more and stopped. The other nodes were clear.  I had 16 rounds of chemo (ACTH).  I went for a second opinion to a reputable hospital and they told me I should have had all my lymph nodes removed.  They convinced me that it was dangerous if I didn't have the procedure.  I asked what the risks were and they told me I could have a little numbness under my arm.  That was all.
I had an axillary dissection and all the nodes were clear.  The surgeon damaged nerves under my arm and now I have excruciating pain.  I have two fingers that don't work right.  My arm feels like a log but I don't have Lymphodema.  It's been going on for almost 9 months.  I want my life back.  Is there anyone out there that has had this problem and can it be corrected?  I would travel anywhere to get relief.  


susan5775
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Re:RIBP & CIPN - Nerve Damage from radiation and chemo treatments - Monday, July 07, 2014 9:49 PM
I was diagnosed with DCIS in January, had a lumpectomy in February, and radiation for 33 sessions ending on May 6. I had "sunburn" from the radiation and my underarm and breast are still sensitive and tender 2 months after finishing radiation. After reading other messages, I know I have had it easy and that the sensitivity and tenderness are normal. My doctors have also told me that it could last for months or years. A couple of days ago I was in a pool for a few hours and now the skin seems to be more irritated, not sure if it is from the chlorine, the swimsuit or having the wet swimsuit on for hours. Any thoughts? I

butterflylady
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Re:RIBP & CIPN - Nerve Damage from radiation and chemo treatments - Thursday, July 24, 2014 7:39 AM
My friends who have had radiation say that the skin stays irritated even years later.  One friend who loved to fish, does not any longer, as the sun even through clothing causes more discomfort.  I am facing radiation and want to know about complications and side effects from brachytherapy.  I have RSD (CRPS) nerve damage in the breast that is already a serious problem.

butterflylady
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Re:RIBP & CIPN - Nerve Damage from radiation and chemo treatments - Thursday, July 24, 2014 7:46 AM
Was your nerve damage every diagnosed as RSD/CRPS?  I got nerve damage under the arm without RSD, but the overcompression in radiology before surgery brought on the RSD in the right breast..  I previously had RSD in Right wrist/hand after fall 7 years before the injury to my breast in radiology.

butterflylady
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Re:RIBP & CIPN - Nerve Damage from radiation and chemo treatments - Thursday, July 24, 2014 3:23 PM
So sorry to hear about your nerve damage.  Mine is awful, too.

cdicapua
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Re:RIBP & CIPN - Nerve Damage from radiation and chemo treatments - Tuesday, August 19, 2014 3:33 PM
I had senitnol node removed and node dissection on my non cancer side. I have severe pain in my fingers never connected the bilateral mas with the hand issues
Cathy DiCapua
mammogram 8/19
dx 9/4
DCIS
Mucinous carcenoma stage 1 a, bilateral mas/w recon 10/19 , Letrozole for 5 yrs

JK1083
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Re:RIBP & CIPN - Nerve Damage from radiation and chemo treatments - Wednesday, December 10, 2014 10:43 AM
I have a late side effect from chemotherapy that I haven't seen much about. Muscle aches. They started about a month after my last chemo; while I was getting radiation. The aches have persisted for two months so far. Anyone have information about this? I will just be starting Tamoxifen which has muscle aches listed as a possible side effect.

JK1083
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Re:RIBP & CIPN - Nerve Damage from radiation and chemo treatments - Thursday, January 01, 2015 9:24 AM
After seeing my Doctor, this is how I understand it: the muscle aches are hormonal from Chemo sending me rapidly into menopause. It is not as bad anymore and tamoxifen has not caused any additional problems.
Dx April 2014: Stage II; grade 3; Chemotherapy,radiation, tamoxifen

Neshamah
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Re:RIBP & CIPN - Nerve Damage from radiation and chemo treatments - Saturday, January 03, 2015 10:39 PM
I was diagnosed with TNIBC 9-17-12. 18 chemos first. I got so sick after the second I ended up in hospital for 8 days with excruciating pain in bowel and stomach. My tongue was raw. What I now know is that it was the lorazepam given to me by the oncologist that was killing me. For two years I got sicker and sicker. My hands throbbed and my feet were numb and froze. I thought it was the chemo. Nope it was a reaction to lorazepam. Now at 4 months into withdrawal my arm is normal again. My hands are almost back to normal. I could not button my clothes. My hands ached in the car. I had to wear heated booties to bed. Again, it was the lorazepam. My feet aren't as good as hands but are much better. All of the many physical symptoms I had from the drug are now gone. My bowel and stomach problems continued until I stopped the lorazepam. Just check your meds for any kind of benzodiazepine like Ativan or lorazepam. Check the FDA website or google the name of your drug. I did not think I would live until Christmas last August. My lungs ached and I had flu feelings always. My oncologist could not identify a single adverse drug event symptom. I was scoped, scanned, tested and retested. Nothing. I thought it was the cancer or the chemo. It was neither. I have spent the last 4 months researching this class of drugs. NO one should take a benzodiazepine for more than 2-4 weeks.

Neshamah
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Re:RIBP & CIPN - Nerve Damage from radiation and chemo treatments - Saturday, January 03, 2015 10:39 PM
I was diagnosed with TNIBC 9-17-12. 18 chemos first. I got so sick after the second I ended up in hospital for 8 days with excruciating pain in bowel and stomach. My tongue was raw. What I now know is that it was the lorazepam given to me by the oncologist that was killing me. For two years I got sicker and sicker. My hands throbbed and my feet were numb and froze. I thought it was the chemo. Nope it was a reaction to lorazepam. Now at 4 months into withdrawal my arm is normal again. My hands are almost back to normal. I could not button my clothes. My hands ached in the car. I had to wear heated booties to bed. Again, it was the lorazepam. My feet aren't as good as hands but are much better. All of the many physical symptoms I had from the drug are now gone. My bowel and stomach problems continued until I stopped the lorazepam. Just check your meds for any kind of benzodiazepine like Ativan or lorazepam. Check the FDA website or google the name of your drug. I did not think I would live until Christmas last August. My lungs ached and I had flu feelings always. My oncologist could not identify a single adverse drug event symptom. I was scoped, scanned, tested and retested. Nothing. I thought it was the cancer or the chemo. It was neither. I have spent the last 4 months researching this class of drugs. NO one should take a benzodiazepine for more than 2-4 weeks.

Tess53
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Re:RIBP & CIPN - Nerve Damage from radiation and chemo treatments - Sunday, February 14, 2016 8:56 PM
Having all the issues that are SIDE effects post Treatment before I get Treatment makes me want to say no thanks on the radiation and Cemo. DX with MS and then 10 yrs later had Perifphreal Neuropathy added in which should have been the first guess.. I already have a lot of the issues mentioned due to the MS. That oncologist may be having to rethink what I'll allow..
2004 Diagnosed with one Life Altering Medical Diagnosis the lovely, Multiple Sclerosis, that ended my career, and makes daily living hard enough, now as of 01/07/2016 I got a new one, Breast Cancer. DCIS less then 1 cm pos estrogen and progesterone, neg HER2. Tess53

Tricia Keegan
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Re:RIBP & CIPN - Nerve Damage from radiation and chemo treatments - Monday, February 15, 2016 1:43 PM
Tess, sorry for your diagnosis although I'm sure the Onc is suggesting the treatment for your good not his own and it's worth throwing what you can at this the first time to help avoid a recurrance in the future, good luck.
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

marianwolf
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Re:RIBP & CIPN - Nerve Damage from radiation and chemo treatments - Saturday, April 16, 2016 11:44 AM
This topic has grabbed my attention bc of my own deteriorating health since chemo and rad 4 years ago. Although I pretty much breezed through my actual treatment (and actually felt guilty bc everyone else seemed to have toughed it out).

Prior to BC I enjoyed much good health due mostly to my genes. This began to change after treatment (surgery, chemo, rads). Shortly after rads, I began to have searing pain shoot along my bra line in my back. I brought this to the attention of my surgeon who hadn't heard of any other cases. As the pain broadened across my back I ended up having ultrasounds, twice. The pain prevents me from bending down from a sitting position or any type of bending over. It's a harsh shooting searing pain that almost made me faint once. I've also had an MRI. I still cannot account for nothing showing up on the scans but I can assure you that the pain is real.

Prior to BC treatment I had arthritis in my thumb, lower back and left knee. In the years following this arthritis has spread to all of the joints in my body and I'm chronically in pain. I take meds for the pain (synthetic morphine, meloxicam, tizanidine and gabapentin) but the meds can't take away all the pain. Further, my immune system has weakened progressively worse over time. 

All of this has put interference with my mental well-being and I take meds for that also. What I breezed through in 2011-12, I am now paying for.

I hate the phrase but it applies here: it is what it is.

Someone mentioned acupuncture and I'm going to try it. When I was in my 20s & 30s I had acupuncture treatment for a variety of ills and it always worked...one treatment was all it took.

Anyway, I thought I'd weigh in and check in after all these years.

Marian 

DX June 20, 2011
IDC, E+P-, HER2-, Ki67 49%
Lumpectomy 7/26/11 & 8/23/11   
Lymph nodes clear!   
BRCA 1-/2-
Stage 1, Grade III 
Oncotype: 36%
Taxotere/Cytoxn 1 2 3 4 12/12/11
33 Rads completed 3/16/12
Start Arimidex 3/17/12    

[link=http://www.caringbridge.org/visit/

Tricia Keegan
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Re:RIBP & CIPN - Nerve Damage from radiation and chemo treatments - Saturday, April 16, 2016 1:14 PM
Good to hear from you Marian although I'm sorry you've been left with so many issues since your treatment, if you're on Facebook look me up there(or anyone else reading this) as I can add you to the private komen group we have there.
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

Andi1961
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Re:RIBP & CIPN - Nerve Damage from radiation and chemo treatments - Saturday, July 16, 2016 10:21 AM
I haven't been on here in a while - fortunately most days I feel pretty good.  I do have some chemo brain, but it's a lot better than it was at first.  I can usually tell within the first 15 minutes of waking whether I am going to have any functioning brain cells that day, and can usually alter my plans and just stay home on those days!  I have neuropathy in my fingertips - no pain - just can't really pick up small items anymore, which can be a nuisance, as I am a quilter.  My biggest lingering issue is the neuropathy in my legs.  Walking up stairs is still a chore.  I have to use the handrail and pull myself along with it.  This, after over 4 years and a stepped-up exercise routine.  Also, and this is weird, I think, but it's what made me look at this forum today after I did yoga - I can't sit with my legs folded under me (Hero's Pose).  It's unbearably painful.  I try and give up because I can't relax all the way and have to hold myself off my legs.  This is so frustrating to me because I used to be very flexible prior to chemo.  Is this a "normal" lingering side effect?  Does anyone else have these issues?


Andi - age 55    
  8/15/2011 IDC Grade 2 Left Breast ER/PR +, Her2 -, Stage IIa
9/12/2011 Lumpectomy - 1.1 cm tumor + DCIS w/positive margins - 1/4 nodes +
10/17/2011 Modified Radical Mastectomy (Left) w/DIEP flap reconstruction
1/5/2012 -Began 6 rounds Cytoxan/Taxotere - DONE!!!! 
4/19/2012 - Lymphedema left arm & hand
5/2012 - DVT Brachial vein right arm
6/2012 - Began Tamoxifen X 10

Tricia Keegan
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Re:RIBP & CIPN - Nerve Damage from radiation and chemo treatments - Saturday, July 16, 2016 1:29 PM
Andi I'm really not sure but it's possible the Tamox may be giving you some stiff joints although it's usually the AI's that have that as a side effect. My Onc told me to use a daily supplement of Glucosamine/chondroitin  which may help for this.  I stopped Arimidex after eight year two years ago on the advice of my Onc but just began taking it again after the newer study showed ten years is better. I've been shocked at how stiff and sore I am especially on waking which must be the Arimidex, some of course could be the fact we're getting older but maybe try a supplement and see if it helps.
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

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