Bette and Paul - good thoughts. I'm already on Synthroid and have my levels checked every 3 months. I suppose that could be affecting things but this has been going on for longer than that.

I also had some evidence of leukopenia - low white cell count - this was more than a year ago before these current symptoms became constant. At the time my doc sent me back to the MO who's also a hemotologist, but he didn't think there was any problem that warranted treatment.

The diabetes/glucose angle is another interesting one I hadn't considered - yikes. I have an annual physical coming up in January so I'll ask my doc about it.

Many thanks!

Everyone will develop neuropathy and depending on your awareness of your own body it can be a big deal or just discomfort. The alternative is no treatment. Also be aware of LeHermitte's sign. When you bend your head down while walking down stairs you will feel as if a lightening bolt is shooting up your spine. This is supposed to resolve but as everyone points out you never know how long and drugs can help but you may go through a slew before you find one that helps. Mine is still there 9 yrs later. Excercise those muscles and get the blood flowing. Ask about HBO treatment early if you had surgery too but if it persists. Check vitamin B1 as nerve damage can result and be permanent from low B1. You cannot take pills for this as it is water solvable and you need injections until it is up as well as checking B12. Water is now your best friend. Finding anyone to address this is perhaps the single biggest post treatment problem we face. Permanent nerve damage will only get worse and waiting may result in permanent damage. Be well but be diligent.

Ed

Have just had a letter through inviting me for EMG/NCS 'Investigation' from the neurophysiology dept.It goes onto say it will be "a test on the nerves and muscles in your arms and/or legs."
Having read PaulB's post, I do wonder if I'll be volunteering for the tasered patient of the month award, with a standard result of 'yeah. . you've got nerve damage in your hands and feet , the door is over there,' as I stumble out of the unit emitting electricity like the Emperor from Star Wars.

Lol. Good luck, and hopefully it's not that bad. I was given a prescription for Neurotin last week, and took it for two days, and stopped taking it since I was out of it, and felt high. I have a lower dose prescription I'm going to try. If its the same, I'll deal with the pain instead, which I probably will, and reason I stopped the meds three years ago. Going to see about physical therapy again, accupuncture is not covered by Medicare, I believe, and don't feel like paying out of pocket.

Cisplatin is well known for causing varying degrees of peripheral neuropathy (nerve damage in the distant parts of extremities). It usually takes the form of anything from numbness to tingling to pins and needles to (sometimes) pain. Some liken it to the sensation you get when a limb that has been nearly frostbitten begins to warm up, or to the unpleasant sensations associated with a limb "falling asleep". As a group these altered sensations are called paresthesias.

Usually, peripheral neuropathy does not "go away". It may "lighten up", or gradually fade, or we may simply become more accustomed to it and notice it less. It can cause foot drop (tip of foot hangs lower to ground), it can make standing up more difficult (harder to stand when you can't feel the floor well!), and it can cause stumbling and even contribute to falls. I had peripheral neuropathy before treatment, and although I only had 1 and a half doses of cisplatin, it has worsened. Oddly, it did not worsen until about eight weeks after my last chemo. In my case it is one more annoyance, and distressing to a degree, but it is tolerable and manageable,

Another form of nerve damage that Cisplatin can cause is loss of high frequency hearing--that "sisssss..." of cymbals, the sound of leaves moving, the way water sounds in the shower are all affected. It can heighten sensitivity to some sounds while diminishing sensitivity to others. It is like the peripheral neuropathy, something that affects some more than others, some not at all. I developed high frequency hearing loss as well. It can also cause or worsen tinnitis, a ringing or whooshing sound caused by auditory nerve damage, which I also had (mild form) before treatment, and which the cisplatin worsened to a degree.

Unfortunately there is no know treatment for these neuro side effects, though there are some experimental approaches being study to help minimize their development in the future. There are support groups in many communities for people with peripheral neuropathy (there are many forms and many causes), and I recommend these; just as with this forum, they are a great way to learn about the problem, and to learn what others have found helpful for adjusting and living with these changes.

My hearing changes have stabilized and seem to actually be improving somewhat; that isn't usually what happens, but I am hopeful that I may gain a degree of improvement. I hope that your paresthesias also gradually lighten and/or become less noticeable. I developed mine in my early 30's and although I am aware of them, they no longer enter my consciousness very often, and likely that is what will happen over time for the worsening that has occurred. Best wishes, and here's to hope that one day we will no longer have to be poisoned and/or burned just to survive cancer! In the meantime, I will pay that price to (hopefully) live to see my children finish school, get out on their own, marry, to meet my grandchildren, and to see many more sunsets.

Addendum: some do find neurontin to be helpful, and others find vitamin supplements such as B-complex and niacin to be helpful (though niacin in larger doses can be dangerous). And although mainstream research tends not to support it, some find relief from complementary medicine techniques such as massage or acupuncture, whether through actual effect or placebo effect. Unless dangerous or breaking your budget, they may be worth a try.

The hearing loss is from Cochlearotoxicity caused mainly by Cisplatin. There are many causes for Ototoxicity, mostly medication induced, and one is by Chemo, mostly from platinum based chemos like Cisplatin, and this �Cochlearototoxicity,� which can either be reversible, temporary or permanent, and is dose dependant, meaning it depends on the dosage of Cisplatin you received, and the medical community has found it occurs more often when Cisplatin is given in high doses, above 60mg, bi-weekly, instead of lower weekly doses. What happens is the Cisplatin is absorbed in the cochlear�s sound detecting hearing cells, and damages them being some chemos attack fasting acting cells like hairs, nails, nerves, etc. It is suggested that you tell your oncologist when in treatment if hearing loss or tinnitus occurs since they can regulate the dosage, stop it or change the medications, so not to make this adverse effect permanent.

There are 20 different types of neuropathies, and the one from chemo is "CIPN", Chemo Induced Perpheral Neuropathy. It is basically damage to the peripheral nervous system. The nervous system transmits information between the nervous system and rest of the body, particularly the hands and feet and too a lesser degree the bladder and bowel, including vision. Peripheral neuropathy can repair itself over time, but sometimes is permanent and with no real cures. This nerve damage is also a cause of chemo brain or fog. Some symptoms appear right away, during treatment, but some platinum based chemos have a delayed onset of symptoms from weeks, months or even years, so this should be considered and discussed before, during and after treatment, especially with pre-existing conditions like diabetes, alcoholism and other co-contributing factors.

Chemo drugs attack fast growing cells like cancer, hair, bone marrow, so explains the loss of hair and lowered blood levels, but nerve cells are effected the same way and are are more sensitive than other cells and can be damaged easily and can be the cause of chemo brain and peripheral neuropathy..After chemo exposure, the cells that are responsible for producing Myelin, a fatty substance, that insulates and protects nerve conducting fibers, can become damaged.

There are many other contributing factors that can make CIPN worse like other illness, lifestyle, nutrition, amount, duration and type of chemos. Some symptoms, and their effects for day to day activates vary. Sensory symptoms like numbness, tingling or burning sensation. Sensation to touching something cold or cold breezes cold or burning of hands, balance, trip or stumble when walking, unsteady feeling walking on uneven surfaces, need to hold onto handrail going up or down stairs, pain with fine hand and difficutly writing or typing on keyboard, decreased of vibrations and diminished or no reflexes, Some people have to wear socks, gloves, scarves, hat to minimize sensation and in some cases causes weakness, incontinence, constipation, muscle paralysis in the limbs and many others. I was unable to walk fore 10 months due to the severe neuropathy from 5 day Induction chemo of Taxotere, Cisplatin, and 5-FU, and had to relearn to walk.

As mentioned, there is there is no real cure, but some find relief with treatments benefit from vitamins, pain medications, physical therapy, acupuncture, changing lifestyle and reducing exposures to certain chemos, Cisplatin, taxotere and 5-FU, to name a few.

I thought you would appreciate more info I have about these conditions from personal experience, but does not mean they may occur.

Thanks, Paul, very helpful. I'm 19 weeks out of treatment and still have neuropathy on the soles of the balls of my feet. My Chemo Doc told me that he "thought" that it would go away by now but it hasn't, though it does seem to have improved. Good to hear straight talk.