Yes, I had 4 cycles of adriymicin/cytocin then 1 treatment of Taxotere. I had a severe allergic reaction to that, my onc stopped further chemo. Was supposed to do 3 more. I also had minor PN in my feet from diabetes. For 3 weeks the Taxotere made me wish for death. Truly. Now, a year later, I have lost feeling on the top of my feet, but it's not painful.

Another thing would be to get your A1c to 6.5, or lower to head off any other complications from D. None are pleasant, a slow painful way to die.

Good morning glenntaj,

Thanks so much for the detailed info. That is what I've been looking for and continue to do so. I was new to dealing with cancer and chemo so I had no idea this could happen. And of course no one told me a thing at the dr's office or even my sweet chemo nurses until after the chemo and I could not walk.

I will get a B12 supplement and start taking it.

I do have a question....do you have any insight on the Bako skin biopsy skin punches I had done. I have no one else to reference this with that I know personally. Range of test was 0 to 15 and mine were 0. Foot dr said he cannot treat anything under a 4 and that the nerves in my feet cannot be regenerated at this point.

Also making my first visit to a pain mgmt. dr on Monday Sept 30th.....any suggestions for my first visit and what to expect ?

It's a nice cool morning here in Georgia

Hey there Barb and good morning. Thanks so much for the response. My AIC is at 6.7 right now down from 8.7 a few months ago. My PCP added a little green pill in May to the gabapentin I was already taking and I have to say I believe that helped lower it more than anything. But I will continue to be diligent in getting this closer to a 6.0.

I'm so sorry you had a bad reaction to the Taxotere. All through my 6 chemo treatments I thought I did really well until I got my mind clear and realized I felt really bad during that time.

Thanks for the info and take care

This is a link to skin punch biopsy and results:

http://neurotalk.psychcentral.com/thread168511.html

Hey Mrs D

I read all the links you provided and they were very helpful. Here are my Bako Pathology Services report: (2 punches taken above right ankle, side by side referred to as A and B)

A. Intra-epidermal nerve fiber density severely decreased (epidermis essentially devoid of fibers: 0.06 fibers/mm
-diminished papillary dermal serve fibers/fascicles

B. Intra-epidermal nerve fiber density severely decreased (epidermis essentially devoid of fibers: 0.0 fibers/mm

Comments, A/B:

Immunohistochemical studies and morphometric analysis disclose a profound decrease in small myelinated (A-Delta) and unmyelinated (C) nerve fibers within the epidermis. The utter absence of fibers following immunohistochemical analysis using anti-PGP 9.5 antibodies is indicative of advanced small fiber neuropathy. The published specificity below the fifth percentile, (less than 3.8 fibers/mm), is 97% (in the context o an appropriately fixated post-biopsy specimen)

I would love to hear anyones take on these results. My foot and ankle dr said nothing can be done at this stage except pain management. The nerves will not regenerate.

I hope Glenn comes along...sometimes he is busy with things in his life. So be patient and he will be here when he can.

Severe loss, is pretty obvious in your report.
In the thread by en bloc on dorsal root ganglia... there is a link
explaining that when the dorsal roots are damaged severely, eventually the nerves at the periphery decline.

This is the link with many links to explanations about dorsal root ganglia, and damage to this part of the peripheral nervous system. This research is pretty new and is offering therapeutic targets for treatment. However, they are not available to patients as yet.
http://neurotalk.psychcentral.com/thread147771.html

Stem cells have been suggested, because it has been found that some people cannot repair damage to the dorsal roots. This appears to be genetic, and one paper has suggested stem cells. But that too is far in the future.

I know the links I am giving are complex, but if you read them slowly you can find the kernels of explanation there.

People exposed to toxic drugs, and who have other comorbid problems like diabetes, are going to have a difficult time IMO with this type of PN.

Glenn has had some regeneration of his fibers over time and has stated that on this forum. I just cannot find the posts for you at this time.

I am sorry your test results sound grim to me, but I am not an expert on the testing aspect of the skin biopsies. We'll have to wait for Glenn's take on your results.

--it's the week before the October SAT and I'm about to spend 12 hours tutoring.

But yes, those results are a pretty good indication of small fiber neuropathy; the 3.8 figure mentioned is the fifth percentile threshold for intrepidermal nerve fiber density indicated for age-matched controls at the lower calf/ankle in the McArthur protocols. (McArthur was the primary researcher at Johns Hopkins when the norms were set there for intraepidermal nerve fiber density obtained through PGP 9.5 staining and electronic microscopy.)

I'll have to research that 0-15 scale, which is new to me. (Can you tell me what facility the Bako pathology people used, if it says that on the report? Most skin biopsies for determination of intrepidermal nerve fiber density are sent out to specialty facilities such as Mass General, Johns Hopkins, Columbia Presbyterian/Cornell Weill, Jack Miller Chicago, etc., where there are electron microscopes and experienced pathologists.)

glenntaj and Mrs D

Please know that your time helping me understand these results is most appreciated.

glenntaj.......Reference at the bottom of my report states:

Ebenezer GJ, P Hauer, C Gibbons, JC McArthur, M Polydefkis. Assessment of epidermal nerve fibers: a new diagnostic and predictive tool for peripheral neuropathy. J Neuropathol Exp Neurol 66 (12): 1059-1073, 2007.

This report did not state the results scale is 0 t 15. That info came from my dr.

The only other thing on this report that I did not mention before is the Microscopic Descpription which I am now listing:

A/B: Representative fifty micron-thick frozen-tissue sections were taken for immunohistochemical analysis. Antibodies directed against PGP 9.5 demonstrate reactivity within surface epithelium only to the degree listed above (severe loss of intra-epidermal fibers). Scattered stained intra-dermal nerves are noted. Routine stains fail to demonstrate evidence of associated vasculitis or amyloid deposition.

That's the whole thing.......good luck with your tutoring and thanks again.

Debi

Well.....The dr said my only option at this point is a neurostimulator. But before insurance will let me try that I will have to do a sympathic nerve block that the pain dr already told me will not be helpful due to my severe, advanced SFN.

I am absolutely terrified of anyway sticking needles in my back ! Rather have a chemo treatment. Scared, confused and have no idea if there are any other options out there. During the last week my the symptoms and pain in my feet has escalated and I've been on vicodin and Xanax very day which is unusual for me.

Any thoughts would be much appreciated at this point.

Thanks

Debi