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Delayed Onset Neuropathy?

fishmanpa's picture
fishmanpa
Posts: 1127
Joined: Jan 2013

I'm 9 weeks post Tx. two weeks ago I started getting nerve pain in my upper body from my head to my chest and arms. It's as if my skin is over sensitive, much the way my neck felt for weeks after my selective neck dissection. Touching my skin is painful but not in a deep tissue way. It's more like painful over-stimulation if that makes sense. Pain meds don't do anything to relieve the discomfort and it just remains at a 4-5 level and is exhausting. 

I emailed my team and got a call back from my oncology nurse practitioner. The first thought was that it was shingles but I have no rash or visible signs and it's been consistent in the level of pain. She said it could also be side effects from Tx and to visit my PCP (he's been keeping up with the teams assessments and reports as I requested).

I visited my PCP today and he feels it's a delayed reaction to the Cisplatin. I have no numbness in my hands but I do have some in my toes, however, I've had that prior due to circulation issues stemming from cardio vascular disease. It has gotten a worse since Tx. 

He prescribed Lyrica which I started taking this evening. We'll see if this helps. Has anyone experienced a similar side effect/ailment and what was the reason/cause? 

"T"

cureitall66's picture
cureitall66
Posts: 874
Joined: Aug 2012

Hi "T" (not Mr. T)

Kreg has been out of tx about 6 months and although he has not complained of leg/nerve pain, he has complained of severe soreness around his neck/shoulders/chest lately. It comes and goes. He has been getting massages and that seems to help for a few weeks. He was told it was most likely from tx. Of course, he worries about his heart with it as he had that heart attack in 05 and triple bypass in 07. But, his cardiac doctor doesn't think it's related since he just had a check up and stress test.

Hope the lyrica helps. I know my dad takes it for diabetes.....helps him alot!

~C

 

longtermsurvivor's picture
longtermsurvivor
Posts: 1830
Joined: Mar 2010

but, no disrespect to your PCP, not likely Cisplatin.  Your description indicates cutaneous hypesthesia, which would more likely reflect  spinal or peripheral nerve irritation from whatever the agent is that has got things stimulated.  Radiation is a more likely culprit.   A detailed history and physical exam by someone expert at this would be revealing.  Although I must say, lyrica is as good a impiric treatment  as any, and may very well prove to be helpful.  If not sigificatly improved in a very few days, I'd go see the ocologist, who himself may need to refer you.  Again, no disrespect to the PCP, but this isn't a problem he/she is going to have a great degree of expertise in handling.

 

best to you

 

Pat

fishmanpa's picture
fishmanpa
Posts: 1127
Joined: Jan 2013

I'll be seeing my RO in August. Also getting my 1st post Tx CT and PET. I can ask about it then if it's still persisting. To me, it would make sense either way. Platinum based chemo and rads destroy cancer cells as well as healthy cells (like nerve cells). I had the same issue after my heart surgery as so many nerves were cut and killed by cracking open my chest. It started months afterwards and it was very painful. It was due to nerves coming back online. I was given amitriptyline which not only relieved the symptoms but helped me sleep like a bear in hibernation! While the nerve pain disappeared, I have areas on my chest that will never have feeling again. 

My ENT/Surgeon told me that the tumors were very aggressive and were intertwined in the nerves, muscles and blood vessels in my neck. The surgery took a few hours longer than expected due to the invasiveness and subsequent intricacy of the surgery to remove them. I was lucky that he was able to extradite the cancer without sacrificing the nerves. However, the nerves were traumatized in the process, thus my shoulder issues and now possibly a contributor to this nerve pain I'm experiencing. 

I just started the Lyrica last night. My PCP said it would a few days before it would kick in. Hopefully that's the case as this is VERY uncomfortable and adds to the fatigue.

"T"

denistd's picture
denistd
Posts: 511
Joined: Apr 2009

Hi T. Sorry you have this, I am experiencing something similar in my neck on the left side, it's not painful, just numb and tight, I saw my rads Onc yeaterday and he said delayed effect from the radiation. I had carotid artery surgery on this side 4 months before I started radiation. There was always a little numbness from that surgery, it has taken 4 years to expose itself at this new level. I am getting used to it and don't notice it much of the time or it's improving. Hope the lyrica helps, I had that after the neck surgery and before cancer and it helped, can't take it now due to the kidney damage but I don't need it anyway. Denis

backachedp
Posts: 124
Joined: Oct 2009

Bob has Numb Toes and Hands they did an EMG on him and they said it was from the Cisplaitan and 5 FU Chemo.  He has pain numbness and not much strength  in his hands at all..Hope the Lyrica helps you they did not offer anything for Bob.  He does not ever tell the Dr's everything he tries to be so tough and he is hurting from the Throat issues, and all the other stuff that has cropped up since he finished treatment.  The Fatigue is also a big issue with him, but I am glad he get's to Nap and take it easy as he is not strong like he used to be.  Keep us updated on how the Lyrica works.

Ladylacy
Posts: 507
Joined: Apr 2012

In December 2012 my husband started complaining about pain in his shoulder area going down into his chest and around to his back.  When he saw the specialist in January he said he didn't know what was causing it but was probably from the radiation.  Funny thing was we saw the radiation/oncologist in December about the pain but she wasn't sure what was causing it and put him on lortab 7.4-500.  Pain medication does help.

Now this pain is on his right side and we found out in February that the cancer had spread to his right lung, very small.  So don't know if that is the cause or not.  We also know from his PET/CT scans that his spine has been damaged from the 70 rounds of radiation over a 2 year period.  In fact it showed up after the first round but he wasn't having any problems.  He does tell me, which I don't believe because I see him in pain, that the pain has not gotten worse.  His pain medication is now lortab 10-3.25 and he rarely takes more than 4 or 5 in one day.  He doesn't like how he feels on pain medication.  But he will take it when it is bad.

Sharon

phrannie51's picture
phrannie51
Posts: 3819
Joined: Mar 2012

my hands and feet went from normal, to tingly to tingly-numb over a course of the first 4 months out of treatment....but I do know what you're feeling when you say your skin hurts....I got shingles many years ago, and that's precisely what I felt across my back....Let us know what happens with the lyrica....I wonder if it would help the tingly-numbness in my hands.

p

fishmanpa's picture
fishmanpa
Posts: 1127
Joined: Jan 2013

P,

My PCP gave me a few bottles of Lyrica (samples) and I had some gabopentin from my treatment. He said to try the Lyrica first. He also prescribed tramedol as it apparently works better for nerve pain. It's too soon to give you a definitive answer but this morning I was in extreme pain and now I'm feeling much better. The "skin hurt" has lessened dramatically and I can lift my left arm without pain for the first time in 3 months! Whatever it is, I'm grateful! I'll keep you informed. 

"T"

cureitall66's picture
cureitall66
Posts: 874
Joined: Aug 2012

I happen to get my magazine "Cure" in the mail today after you posted. I found an article on Neurophathy. I will post the link. Hopefully it comes through.

~C

 

 http://www.curetoday.com/index.cfm/fuseaction/journey.showArticle/id/9/enableStageSubMenu/3/article_id/2116

fishmanpa's picture
fishmanpa
Posts: 1127
Joined: Jan 2013

Thanks ~C

So it is a side effect of treatment.. chemo and rads. I know the surgery did some damage as well. It mentions Cymbalta. Lyrica is in the same class of drugs and from what I've read, works better at neuropathic pain. We'll see... I'm already feeling relief :)

"T"

fishmanpa's picture
fishmanpa
Posts: 1127
Joined: Jan 2013

As I was reading the Cure article, there was a link to more information on neuropathy. Apparently it can occur well after treatment as it has done with me. 

http://www.curetoday.com/index.cfm/fuseaction/article.show/id/2/article_id/1420

"T"

 

Roar's picture
Roar
Posts: 248
Joined: Mar 2013

About 3-4 months post tx my feet were experiencing the neuropathy you mention. And it was constant. They told me it was a Side effect of the citsplatin . Over the last couple of weeks the tingling and burning has subsided a lot. Hope you have similar results.

keep up the good work,

Ralph

CherieLW's picture
CherieLW
Posts: 438
Joined: May 2013

T,

Hope the Lyrica is able to relieve your side effects.  I've never heard of such a thing,but then again... I've never had to deal with this sort of thing up close and personal until recently.

Wishing you the best in feeling 100% quickly!  keeping you in my thoughts and prayers.

Cherie

fishmanpa's picture
fishmanpa
Posts: 1127
Joined: Jan 2013

Hi Folks,

I started taking the Lyrica Wednesday evening. One a day for two days. So Friday I upped the dose to two a day. Today will be three doses. Morning, noon and night.
The symptoms have lessened dramatically. The pain in my left shoulder is all but gone and I can exercise my arm which is increasing in mobility. The Tramadol in conjunction with the Lyrica has been very effective. 

So, as far as I'm concerned, the treatment is working. 

Positive thoughts and prayers

"T"

wolfen's picture
wolfen
Posts: 1198
Joined: Apr 2009

So glad to hear that the pain is getting less. I was going to throw in my own suggestion of AlphaLipoic Acid if your remedy failed. Ron took it for several years and it helped his Diabetic Neuropathy. OTC at Walmart is cheapest if your Lyrica fails you.

Luv,

Wolfen

debbiejeanne's picture
debbiejeanne
Posts: 2590
Joined: Jan 2010

t, i'm glad the meds r working.  i hope u continue 2 get better.

dj

HobbsDoggy
Posts: 165
Joined: Feb 2013

My neck area where they did the dysection is still sensetive.  Not all the time and mostly if I touch it.  No pain in shoulders or back, guess I am lucky.  I am 7 months out of treatment. 

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