[joca2002]

Hi all,
This is my first post and I'm looking for some answers from people who are more knowledgeable than me. I went through 6 months of chemo for colorectal cancer in 2005. One of the drugs I took was oxaliplatin which left me with a terrible case of PN in my hands and feet. My hands have pretty much fully recovered but my feet have not.
I have severe pain in my toes and it feels like someone is sticking red hot needles into them 24/7. I am on 450 MG of Lyrica per day and Vicodin.
My oncologist does not have any suggestions other than to wait it out but I am not sure that they will ever get better.
Does anyone have any information on how long it takes to recover from oxaliplatin-related PN? Do the nerves ever recover? Can it get worse from here? Does anyone know of any types of other meds or alternative treatments that have worked for my situation
Thanks in advance and good luck to everyone who is suffering from this maddening disease! I empathize with each of you!
John

[Brian]

Welcome to this forum Joca,
The healing process is very slow but once your nerves are in the right environment they can and do regenerate,
mine took 3 years to heal and mine were only my feet caused by a prediabetic state, but to nourish your small nerves i suggest you get some good quality vitamin B multi, take 1 a day and if you can get some B12 methylcobalamim 1 -5 mg daily is a reasonable amount, but take the b12 seperatly to the multi B, it works better that way and drinking plenty of water has a lot of benefits as well.
I am sure other will be along shortly.
Brian

[dahlek]

that you look at the top of this forum at the wealth of info on neuropathy sites called "Important Information/Stickies" . Be sure to check out the Nat. Inst. Health/National Cancer Institute, as some research is being done there...tho what's available to us patients is still a bit sparse.

The majority of this info addresses neuropathies in general and you will find that there are ever so many types and causes. Probably your neuropathy is due to the toxic aspects of chemo and you are not alone.

I've met many folks who have acquired neuropathy as a result of chemo and the majority of them see a neurologist who specialize in PN for treatments. I would ask your ocon. about a referral or if you are in a PPO plan, make an appointment yourself...but get your records [background, history, treatments, blood work, tests, films etc.] ready to bring to the neuro.

I hope this all helps, and don't feel afraid to ask questions. Lots here will tell you that I've asked my own share of them. - j

[joca2002]

Thanks for the great info. I will check into the Vitamin B thing. I was surprised to find out that you could still be regenerating nerves 3 years down the road from chemo. I thought it pretty much stopped after a year or so
That is encouraging!
What types of things does a neurologist do for you besides meds? Do they have any other types of treatment
What about ACCUPUNCTURE? Anyone got any experience with that?
John

[Brian]

Originally Posted by joca2002

Thanks for the great info. I will check into the Vitamin B thing. I was surprised to find out that you could still be regenerating nerves 3 years down the road from chemo. I thought it pretty much stopped after a year or so
That is encouraging!
What types of things does a neurologist do for you besides meds? Do they have any other types of treatment
What about ACCUPUNCTURE? Anyone got any experience with that?
John

The only one thing that will benefit out of accupunture for small nerve Neuropathy is the accupunturist bank account, accupunture can be fantastic for other problems but no not small fibre neuropathy, unfortunatly.

Seeing you know the cause, its really pain managerment you would be looking for, so a good neuro that is a PN expert are the people to see, normal neuro's don't know enough to give you the best advise and that should cover medications as well, a pain doc is another consideration.
One thing that aggravates PN is stress, emotional upsets etc, so try to keep calm as you can, if possible.

I second Dahleks advise about the stickies, up top on the front page you will learn a lot from there, a don't hesitate to ask questions there are some very knowledgable people here that will help if they can

good luck
Brian

[mrsD]

has come up before. For many years the HIV community has used
acetyl-l-carnitine ( an amino acid) to help with drug induced PN.

Here is a study on chemo:

In Vivo. 2005 May-Jun;19(3):631-7. Links
Chemotherapy-induced allodinia: neuroprotective effect of acetyl-L-carnitine.

* Ghirardi O,
* Vertechy M,
* Vesci L,
* Canta A,
* Nicolini G,
* Galbiati S,
* Ciogli C,
* Quattrini G,
* Pisano C,
* Cundari S,
* Rigamonti LM.

Research and Development, Sigma-Tau S.p.A. Industrie Farmaceutiche Riunite, Rome, Italy. orlando.ghirardi@sigma.tau.it

BACKGROUND: We tested the hypothesis that acetyl-L-carnitine (ALC) may have a protective and a curative role in chemotherapy-induced hyperalgesia in vivo, in animal models of cisplatin-, paclitaxel- and vincristine-induced neuropathy. In addition, the possible interaction between ALC and vincristine antineoplastic action was assessed. MATERIALS AND METHODS: Chemotherapy-induced peripheral neuropathy (CIPN) was induced in different groups of rats. The effect of ALC was evaluated both when its administration was started together with the administration of anticancer drugs ("preventive" protocol) and when ALC administration was started later on during treatment ("curative" protocol). RESULTS: The ALC treatment significantly prevented the lowering of the mechanical nociceptive threshold when the administration started concomitantly and, respectively, with cisplatin, paclitaxel and vincristine as compared to each drug alone. Furthermore, when ALC administration was started later on during treatment, at well-established neuropathy, ALC was able to restore the mechanical nociceptive threshold within a few days. Finally, experiments indicated that ALC does not interfere with the antitumor effects of vincristine. CONCLUSION: Considering the absence of any satisfactory treatment currently available for CIPN in a clinical setting, these are important observations, opening up the possibility of using ALC to treat a wide range of patients who have undergone chemotherapy and developed sensory peripheral neuropathy.

PMID: 15875786 [PubMed - indexed for MEDLINE]

To help repair damaged nerves.. one needs B12, B-complex and
Essential fatty acids (mostly fish oil) to provide the nutrients to repair.
Magnesium helps too, with this function.
The acetyl-l-carnitine helps with mitochondrial cellular energy issues.
The fact that the hands have improved, but the feet not, implies at least to me that improving circulation will help get the nutients to that long haul
down there. Soaking in warm epsom salts helps, do that, as well as keeping feet elevated as much as possible, and keeping the feet from getting "cold".

[dahlek]

muffler guy 'does' mufflers....the 'alignment' guy does the tires, frames and all that keeps it going straight.

Since I've both Ocon and Neuro [in my case, the neuro came first] It's simple: Ocon deals primarily with the CANCER and a bit with the adjunct aspects, such as neuropathy; The Neruo deals with the NERVES and what all has caused the nerve issues and specializes in what can be done to treat nerve problems. Their areas of expertise overlap a BIT, but their knowledge of specific treatments are very different. Go visit www.neuroexam.com to find out exactly what neuro's look for, test for and why for some insight. The neuro's range of need to know's is different but just as big as the oncologists'.

PN in and of itself, by itself 'Gets No Respect'! The research being done on PN is in relation to other issues [causes], such as diabetes, cancers, eiplepsy, AIDS, spinal injuries, and a few other conditions. Every little bit learned about how nerves die and why, then regrow-how and why are important to anyone with neuropathies. Because, we ultimately benefit on the side! The vast majority of the meds and treatments used for PN are 'off-label' or not fully tested and approved for PN use by the NIH and FDA. As with many cancer treatments-WHO CARES? Especially if it works! Nerves can die due to a zillion reasons at the rate of miles per minute....they regrow at 1cm [less than 1/2 an inch] per MONTH! Only when all things are 'right'. Yes, it can take years to heal the damage...key is reducing the pain and encouraging optimum nerve regrowth.

It takes a LOT of learning, good living, and following your instincts - if your mind says 'something's not right' well, try and listen to it. The key is to get your docs all on the same page. If you've read other's posts here, and I bet from your own experience, it's easier to herd cats!

I hope this helps! - j

Mrs D ison target w/the ALC...Look up NIH clinical trials...there's lots of stuff going on!

[Brian]

To improve circulation i use to walk up & down a lane of our local [warm water] swimming pool 3 times a week,[ its non weight bearing ] so there's no pressure on your feet like normal walking on a pavement and i always got there early when they first opened [ 6.00 am ], as did a lot of other people all doing the same thing for all differant med problems, really gets the old pump [ heart] going and doesn't hurt your feet at all.
I found that going early you miss all the other swimmers that use all the pool, like loads of school kids anything from 9 am onwards is a good time not to be there trying use to one lane.

[joca2002]

I really appreciate you all taking the time to write! I know I have a lot to learn and a lot of work ahead of me but having a starting place is really invaluable! My experience through cancer and post cancer pain from PN is that you have to take a very active role in your recovery, especially for something as elusive as PN. So I am going to take the knowledge I get from the experts here and use it to get better!
My oncologist has set me up with a neurologist that specializes in PN and I feel like the info you have given me will help me get the best treatment possible.
Thanks again and good luck to everyone out there. It might not seem like it sometimes, but hey we are not alone so take some comfort in that.
Peace,
John

[dahlek]

RIGHT direction. Next step is to look up www.LizaJane.org and start a] getting all your med history & info., then b] pulling LizaJanes's worksheets together and filling in the blanks. Be forewarned tho, some doc's like the summaries, others feel as if they are sort of 'being told' what to do. I guess they don't like all the 'blank' things on such charts if they either aren't doing anything or feel no need to. At least it will give YOU a handle of what's to be done or could be done in your case.

Don't be overwhelmed by the charts tho. As you're learning, lots of us have had to get our diagnoses the harder way...as we've less direct cause/effect neuropathies.

I'm really glad that your ocon and neuro should be working on concert tho. I can't tell you how important that is!
Super good thoughts today! - j