[St George 2013]

I just signed up today so please bear with me on any mistakes I may make on this site.

What a year I have had ! I'm 51 and on Sept 25 of 2012 I was laid off from my job of 26 years my daughter got married 2 weeks later in St George, FL , exactly a week later I had a routine hysterectomy due to uncontrolled bleeding. The dr came in an said everything looked Great ! Two weeks later I got a call from his nurse asking me to come in to discuss some "options". She would not tell me what the issue was. So....took my husband with me and was told I had a rare uterine cancer call Serous. Very aggressive but was small (0.5 cm) per path report. Dr said the size of your small fingernail. The dr knew so little about Serous he had to look it up. He sent me to Gyn onocologist who recommended chemo, no radiation. Had 6 chemo treatments, Dec 2012 to Mar 2013 of Carbo (600 mg) and Taxol (1st 2 treatments at 330 mg and last 4 at 300 mg). He lowered the dose of Taxol due to my neuropathy symptoms which were not really bad at the time. Some numbness and tingling in hands and feet, issues with hot and cold water. PET scan in April came back clean. In remission

And here is the rest of the story:
Exactly one month after treatments stopped I started having severe pain in hands and feet. Burning, electrical shocks that stopped me in my tracks, numbness from middle of each foot to toes, etc. I thought (lol) that the chemo was trying to get out of my body so I got pretty physical (not normal for me) and trimmed bushes, deep cleaning in the house...you get the picture......2 weeks later I could hardly walk. Had no experience with neuropathy at that point. Went to my dr of 5 years and she said neuropathy....probably from diabetes (used metformin 500 mg 2 x a day) and the chemo I had just went through. She did extensive blood work and everything was good except my A1C which was 8.7. She put me on 2 mg of Glimepiride 1x a day added Gabapentin at 100 mg 3 x a dy and sent me for nerve cond test along with the test with the needles.....electrical stuff was ok but that dang needle hurt ! Test was normal. Had spinal x-rays, MRI of neck and she sent me to Neuro surgeon just to get a 2nd opinion on results. (too much detail but Neuro surgeon said nothing compressing that would cause my symptoms) Suggested increase in Gabapentin to 300 mg 3 x a day. My regular dr then upped that for me. Went to my onocologist on my own and he said neuropathy from diabetes and chemo and stated could get better in days, months, years or could be permanent. Then, on my own, went to neuro dr, he did not have a good bed side manner but increased my Gabapentin to 600 mg 3 x a day gradually over 3 weeks. No improvement. Went, on my own again, to foot and ankle dr. FINALLY someone who cared ! Said neuropathy and did skin biopsy on Sept 10, thru Bako Path Services. Got results on Sept 19. On a scale of 0 to 15 (15 being the best) I scored 0.0 and 0.06 on my 2 skin punches. I cried with relief that I finally had a definite diagnosis. He said a score of 4 to 7 he could work with. Nothing can be done with a score under 4 and I was 0. He is now sending me to a pain management dr on Sept 30th.

I know this is long but you have no idea (or you probably do) on how good it feels get ALL this off my chest. I've been amazed at how little info I can find on the net. This site has helped me more than anything ! And I so appreciate it. But I do want to find someone who had diabetes, chemo with Carbo/Taxol and has the same issues as me or close to it. The pain is bad and the only relief I get is having my feet elevated. Walking a little is ok but if I don't continually sit or lay down throughout the day I'm done for about 2 days ! I don't take the viocdin unless I absolutely have to (dr told me to take the dang stuff) and on really bad days I have to add 1/2 a Xanax to be able to deal with it.

I have lots more I could say but if you read this....thank you SO much !

From Georgia to everyone....hope you have a great and painless day !

P.S. My AIC is now 6.7....I have the Glimepiride to thank for that

[mrsD]

Welcome to NeuroTalk;

If you search "chemo" here you'll find the posts, that explain
acetyl carnitine use to help with PN from chemo.

It is best to be using the carnitine during the chemo, but I'd try it anyway. It may also help the diabetic PN as well.

Start with 250mg a day, and increase by 250mg a week until you reach 2 grams a day. Take in divided doses to improve absorption. This is not a quick fix but it may help over time.

Are you using statin drugs as well? These are known PN causers.

Everyone here should be tested for B12 and Vit D. Fixing those will help too. Low D in diabetics is linked to more pain. Your test of B12 should be at least 400pg/ml. Do not accept "normal" as test ranges do not reflect the new treatment protocols and go very low. If you are low in D do not take the RX version offered by the doctor, but get yourself some D3 OTC... 1000IU for every 10 points to raise to the new acceptable low of 50 from the test.

Also diabetics lose magnesium in the urine. Fixing that by taking a well absorbed magnesium supplement like SlowMag (available at WalMart), or using a lotion like Morton's Epsom lotion, can help alot.

The Big Three--- B12, Vit D and Magnesium are the most common nutrients low in PNers (and others in this country).

There is alot of information on this forum and on the subforum here. So it is best to start reading a bit each day, to find what works for others and which may help you further.

[Kitt]

Just curious as to the kind of chemo you had. As you know, they are all poison but some are really bad. Thanks.

[St George 2013]

Thank you so much Mrs D for the info. I have actually been reading threads on this site since Dec of 2012. Since I have been in and out of dr's offices since my chemo ended I have not tried any of the supplements mentioned in these posts. I guess I'm just scared and trying to wrap my mind around this diagnosis.

I have all my doctors records and labs. My B12 is 632 pg/mL and the limits stated are 211 - 946 so I'm good there. My B6 is 6.9 ug/L and the limits for that are 2.0 - 32.8 so in the range but on the low side. He also tested Immumofixation, Serum G, A and M (have no idea what this is) in normal ranges and finally Immunofixation, Urine which also had a normal pattern.

I have filed for disability and have been turned down once. The appeal was sent to them on Sept 23. I talked to an advocate and he gave me some pointers. Just wondering if the 0 test results from the biopsy will help with the disability appeal. That is actually my main focus right now so I can have some peace of mind and work on getting my feet and hands well enough to at least clean my house and grocery shop. I live in a very small town so thankfully everything is close if I do have to drive. I do not drive or ride unless absolutely necessary. My kids, grandkids and mother have been wonderful. They grocery shop for me every week.....drive me to appointments and help clean and cook. I'm at home 99% of the time because having my feet on any surface makes the pain unbearable. I cannot wear shoes, only sandals and sometimes not even those. No socks. Not sure what I will do this winter. I'm hot and sweating all the time. Even when it's 65 degrees.

My feeling is that I had the pre-diabetes/diabetes and the chemo just sent it in to overdrive....does that sound crazy ?

[St George 2013]

Well hello Kitt. I've seen your posts before....nice to talk to you.

Both chemo drugs that are on the list for neuropathy issues.

Taxol (330 mg 2 treatments and then 300 mg for the last 4 treatments) &
Carbo (600 mg through the whole 6 treatments)

Any info on these would be much appreciated.

[Kitt]

Originally Posted by St George 2013

Well hello Kitt. I've seen your posts before....nice to talk to you.

Both chemo drugs that are on the list for neuropathy issues.

Taxol (330 mg 2 treatments and then 300 mg for the last 4 treatments) &
Carbo (600 mg through the whole 6 treatments)

Any info on these would be much appreciated.

Found this for Carbo:

http://chemocare.com/chemotherapy/dr...x#.UkMoiRDp7TA

and this on Taxol:

http://taxolsideeffects.org/

Of course, there are other sites. Good to talk to you as well.

[glenntaj]

--this sounds like a chemo-induced, or at least chemo-enhanced, neuropathy (you certainly could have had the beginnings of small-fiber neuropathy from diabetes/glucose dysregulation and your chemo regimen exacerbated it).

Many oncologists shy away from discussing neuropathy as a side effect of chemo and radiation treatments; it's our of their comfort zones and they don't know how to deal with it, though it IS one of the most common side effects of these treatments. Chemotherapy agents, particularly the ones based on metals, are notoriously neurotoxic and, as Mrs. D notes, when one is about to undergo these it makes good sense to try to get one's nutritional status enhanced before these agents are introduced.

Still, you should be taking more B12, even with those readings--many of us want to get our B12 readings at the very top of the range or even above, so that there is always enough available for repair and to support enzymatic functions, which these agents deplete terribly. (B12 has no known toxicity level, and many of us use methylcobalamin forms to avoid the need to have to methylate the commercially produced cyanocobalmin--there are people who have genetic errors in methylation processes, and chemo tends to throw that chemical pathway into conniptions anyway; besides, why force the body to get rid of cyanide?)

And yes, diabetics need to watch their magnesium and Vitamin D levels more than most.

It is possible you will get some healing over time, though likely very slowly. Among neuropathies, chemo-induced is one in which some recovery is more the norm, given the proper conditions (and a lack of a need to go through chemo again, of course, which we all hope for you). The diabetic neuropathies tend to be more recalcitrant, but one can improve there, too, with good blood sugar control and good nutrition and exercise to tolerance.
You may well be "co-morbid" in this--but small, unmyelinated fibers can heal and you can grow more of them if the things compromising them are removed.

By the way, the immunofixation tests were to detect monocolonal antibodies (M-proteins), which not only can cause neuropathy through interacting with nerve epitopes but are often associated with blood cancers. So good for you that the patterns did not indicate any.

[ger715]

Mrs. D,
Some time ago I recall your mentioning the use of Magnesium Cream. I did purchase Kirkman Magnesium Sulfate Cream. While my PN involves my legs; the burning is both ankles and feet (mostly ankles). I used for short time; but still have about 3/4 of a jar which I have not used in quite some time.

Actually, not sure if the proper way to use this cream is to rub on ankles and feet daily? Can you refresh my "how to use" this cream?

(I am curently taking Benfotiamine (4 per day), MethylCobalamin lMG) (1 per day) and R-Lopic 100mg (1 per day).)

Thanks,
Gerry

[ger715]

Glen,

Last year had cancer surgery. My surgeon wanted me to talk with oncologist about getting chemo. He was okay with my refusal; but wanted me to at least make an informed decision. I did as he suggested and went to see oncologist.

(FYI) I happen to have the one oncologist who did verify using chemo would most likely increase my PN symptoms.


Gerry

[mrsD]

Yes ger, just rub it into your ankles and the tops of your feet once a day.

You don't need much, so don't slather it on.