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Neuropathy that seems to be worsening 18 months after last Chemo treatment

Sara Zipora's picture
Sara Zipora
Posts: 227
Joined: Sep 2010

Hey GuYs,

Have any of you experiencme worsening of neuropathy ? Now, 18 months after last chemo Gemzar after roundsofcarbo taxol and Carbo Doxil, my toe tingling numbishmess seems to be creeping up my legs to my calfs now. My doc just kinda shrugged.

As if Stage IvB grade3 Clear and Undifferentiated Cell Adenocarcinoma isn't enough, I lost my vision in one eye 9 years ago to a behind the retina hemorrhage, two surgeries left me blind in one eye and with glaucoma there. Not done yet, nope, now my good eye, has been clouding with a cataract which I have been loathe to treat as if something goes wrong I will have no eyes that can see!

Ironically, now, three years after Dx,  the cancer seems to be PG in a dormant stage,after four recurrences, chemo thrice and two surgeries and four radiation intervention treatments, but I am exhausted all the time trying to negotiate my world, work a half day etc, because of the energy I expend on seeing!

Sunday I have a PET scan three month follow up from last Thank God, clear one.

If, Please God, this one is ok too, I have an appointment for cataract surgery.

I am snarly, scared and cranky, feeling alone in a sea of people who are moving along with their lives and a big bit tired of being on the 'edge of their wits' worrying about me?!?!

Sorry for the long rant.

But back to the Neuropathy, any ideas?

Be well,keep fighting,

Sara

Alexandra's picture
Alexandra
Posts: 1260
Joined: Jul 2012

Sara, please read http://csn.cancer.org/node/260435 and

http://www.cancer.org/treatment/treatmentsandsideeffects/physicalsideeffects/chemotherapyeffects/peripheralneuropathy/peripheral-neuropathy-caused-by-chemotherapy-what-is-cipn

Medications: gabapentin (Gralise, Neurontin), lamotrigene (Lamictal), topiramate (Topamax), pregabalin (Lyrica), carbamazepine (Carbatrol, Tegretol) and phenytoin (Dilantin, Phenytek), Capsaicin cream, Lidocaine patch, amitriptyline and nortriptyline (Aventyl, Pamelor), duloxetine (Cymbalta)

Alternative treatments: acupuncture, biofeedback, Transcutaneous electrical nerve stimulation (TENS), alpha-lipoic acid (Evening primrose oil), Acetyl-carnitine, vitamins B1, B2, B6 and B12

And one thing that rid me of neuropathy for at least a month: sitting / swimming in hot mineral waters of Hamat Gader.

Feel better!

Ro10's picture
Ro10
Posts: 1471
Joined: Jan 2009

Sorry the neuropathy is getting worse.  So many have said how painful it is.  Luckily I only have it after walking for 20 minutes, or standing.  It goes away after I sit down.  Others have used some of the medicines that Alexandra has mentioned.  

I hope your PET scan comes Back negative.  I hope you can have sources full cataract surgery.  I can understand you being anxious about the surgery.  Losing your eyesight would be very frightening.  I hope when the surgery is completed and your eyesight improves your energy will improve also.  In peace and caring.

Kathy G.'s picture
Kathy G.
Posts: 116
Joined: Dec 2012

Sara,

I have always found your posts to be so interesting as well as motivational considering all you have gone through. I also find many of your viewpoints interesting because of the cultural differences. But most importantly we are all able to relate because we are bonded together by our mutual cancer diagnoses and treatment.

It sounds like you have alot on your plate, and I feel bad about having to deal with the eyesight issue in addition to already having another life-altering disease. I pray that your eyesight can be treated successfully so you can have one less burden to carry in this life.

Try to keep your chin up through this as you will come through the other side in good spirits...we can only be down for so long and you have a fighting spirit anyhow!

I know nothing of the neurapathy so I can only wish you the best with that also.

Kathy

Kathy G.'s picture
Kathy G.
Posts: 116
Joined: Dec 2012

Sara,

I have always found your posts to be so interesting as well as motivational considering all you have gone through. I also find many of your viewpoints interesting because of the cultural differences. But most importantly we are all able to relate because we are bonded together by our mutual cancer diagnoses and treatment.

It sounds like you have alot on your plate, and I feel bad about having to deal with the eyesight issue in addition to already having another life-altering disease. I pray that your eyesight can be treated successfully so you can have one less burden to carry in this life.

Try to keep your chin up through this as you will come through the other side in good spirits...we can only be down for so long and you have a fighting spirit anyhow!

I know nothing of the neurapathy so I can only wish you the best with that also.

Kathy

cleo
Posts: 124
Joined: Sep 2009

I have neuropathy after radiotherapy.   Not painful as such but the toes tingle and feel numb and this has worsened over 5+ years.      There are periods when my lower legs also feel numb but this comes and goes. Lipoic Acid seems to help...as do fish oil tablets...I tried TENS and it didn't. I am very loathe to try any other medicatons as  there are stated  possible side effects and I am not too keen to tempt fate when the body appears to be settled!!   If I walk for any distance I now use a walking stick as I find that my balance can be debatable and it keeps me going straight.

You are having a very tough time at present and I hope that you will now have some positives.

Sara Zipora's picture
Sara Zipora
Posts: 227
Joined: Sep 2010

2013-07-02

Firstly thanks so much to all of you for ur support!

secondly would have written sooner, actually tried, but the 'computer' list, swallowed and ate my replies!

Thirdly, got PET results ahead of schedule by asking for raw disk, which they are loathe to give, and giving it to my nephew the radiologist.

the good news is very small sighting of cancer hotspot. If it were a dental cavity the dentist would say 'let's just watch it'.

the less good news is that my ureters, tubes from kidneys to bladder, show blockage due to scar tissue from radiation. They, scar tissues, are 'hot' as they are most likely radiation suffused and not, I pray, tumors. The right is more occluded than left. Both kidneys show backups, which is dangerous and could lead to kidney failure.

the solution, seems to be a stent, a procedure that requires placement of a plastic tube to stretch ureter and help urine to get down from kidney.

the problem is that thing needs to be replaced every three months! Requires endoscopy,three holes thru tummy to kidney, or going in thru urethra which I don't want, as frequently doesn't work,painful and still needs tummy entry.

Now seeing specialists to decide priory order:

cataract

son's wedding in States in August 

urological intervention

or another order.

Any thoughts or experience Warriorettes?

Sara

Ro10's picture
Ro10
Posts: 1471
Joined: Jan 2009

Glad you got good PET scan report.  Sorry to hear that you have scar tissue in your ureters.  Did you have full abdominal radiation or just pelvic radiation.  I did not realize that the stents needed to be replace every 3 months.  Good luck with the opinion of the specialist.  You sure do not want to have kidney failure.  I hope you get everything settled to go and enjoy your son's wedding in August.  In peace and caring.

minalavers
Posts: 2
Joined: Jul 2013

Sara, I know what your going through.  It hurts so bad that it sometimes makes me cry at night.  I am new to this network and really don't know what the protocal is.  It was a suggestion from my therapist that I seek out support groups to help me better understand how I achieve finding the new "norm".  My last treatment was March 28 of this year, but the pain and side effects of the chemo and radiation just don't seem the same.  I was prescribed Gabapentin by my physician to ease the pain, but it really doesn't go away.  It helps leviate it a bit, but it comes right back.  I am taking 2400mg a day and it still hurts.  I guess I really shouldn't complain since I haven't been dealing with this for a long time.  This is all I can say about this matter.  I hope you get to feeling better one thing that did help the burning was a shot of morphine I received in the emergency room during my chemo treatment because the pain was unbearable.  I will be praying that your PET scan comes out clear.

nempark
Posts: 596
Joined: Apr 2010

Sara:  I finished chemo in 2010 and (not confirmed by Doctor) but I am having pains in my side and legs.  Last scan was January and everything was clear.  I was always in pain in my abdomen and at the lower back since sergery, I must say that it is getting a little better, but the legs are painful and new.  I will discuss it with my Dr.  next visit, which I am dreading to make an app.  Best regards. 

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

Think once we hear the words cancer, any type of pains we go down path of IT'S BACK!!!!  Nempark, I had some pains in my lower back and each time I saw the oncologist he told me NOT CANCER. I tried all kinds of alternative options to alleviate the pains -- yoga, mindfulness, chiropractic -- still continued with pain.  The last straw was the pain going down my left leg...darn it and this really hurt!  Convinced oncologist to approve MRI and found I had a bulging disk, plus pressing on sciatica causing the pain down the leg.  Found a new chiropractor who did some decompression (machine) and after 4 months of treatments NO PAIN!!!

As well, time and time again I hear and read about the long-term side effects from external radiation (of which I had 33 sessions) .  The radiation causes everything inside to simply dry up -- muscles, tendons, ligaments, bones.....  I feel this will be an ongoing issue with me, but luckily mine is manageable and without Rx.  

Remind myself daily, this is NOT cancer, just part of the treatments.....so I go on with life and keep on smiling.  The alternative is much worse and I try not to ever go there.

Nempark, hope you find relief and as with me, simply part of side affects from these darn treatments.

 

Hugs,

Jan

nempark
Posts: 596
Joined: Apr 2010

Dearest Jan:  For so many years you still constantly keep in touch and is so encouraging.   I am amazed with so much busy schedules that you always find the time to write. Thank you so much. Continue NED and I will check out a Chiropractor and take care of this nonsense legs.  Thanks Jan.

RoseyR
Posts: 464
Joined: Feb 2011

 So sorry to hear that your neuropathy is worsening; it was the side effect I most feared from Taxol/Carbo, but my integrative doctor had me on several things during chemo that were supposed to minimize the likelihood, including a teaspoon of glutamine in a glass of water three times a day during the first four days of chemo, two TB of fish oil a day, and a few other supplements such as Vitamin E succinate (200-400 mgs a day).

Have you tried alpha-lipoic acid, a B vitamin called "Bentothiamine"?  If you Google them in relation to neuropathy, you may find some relief by adding them to whatever you are currently taking.

Best,

Rosey R

 

Sara Zipora's picture
Sara Zipora
Posts: 227
Joined: Sep 2010

Dear all,

I don't know why I hadn't found these articles until now!

Statins memory loss
http://onlinelibrary.wiley.com/doi/10.1592/phco.23.7.871.32720/abstract
 

and

 

Peripheral Neuropathy!
http://www.ncbi.nlm.nih.gov/pubmed/23121724
 
I had asked my Docs why my neuropathy seemed to be getting worse even though chemo ended 18 months ago. Well see articles above!
I stopped taking simvastasin five days ago and there is already an improvement in tingling in feet and lower legs!
dont do what I did, i really dont have heart issues ad was taking it for years as prophyactic care arfter reaching sixty, speak to your docs
If you take it and have peripheral neuropathy.
hopefully stopping it will also help me find my car keys!
;-)
 
sara
fuzzytrouble's picture
fuzzytrouble
Posts: 210
Joined: Feb 2009

Sara, I have had the worst pain in my feet and legs for the last couple of years and it has gotten worse. I finally told my PPC that the legs cramps and the toe cramps were getting so bad I needed something to help out. I got a prescription of Lyrica and I took one capsule this morning and I could feel it working. Today is the first day in a long time that I felt great. I am supposed to take 2 a day so I am hoping this is going to let me get back to walking again. I had now side effects yet, and I am hoping I don't. I was taking 2 Hydrocodone-Acetaninophen to get through the day because of the leg pains. I am hoping to stop taking those. I hope this helped a bit for you.

Sara Zipora's picture
Sara Zipora
Posts: 227
Joined: Sep 2010

Thanks a lot. My tingling and cramps have gone down considerably since I stopped taking the statins.

i will keep your advice on record if, heaven forfend, they come back.

Sara 

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