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

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.

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

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!

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.

Sara Zipora said:

Just wanted to say Thanks and PET results

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

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.

jazzy1 said:

Back Pains

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

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.