For almost twenty years, I have been involved exclusively with pancreatic diseases, especially pancreatic cancer, as part of my voluntary work as head of several regional groups at TEB e. V.
Each group meeting is unique and always has its own dynamic, which is never predictable. Patients and their relatives use the opportunity to exchange their experiences, joy and disappointment in dealing with their own disease. In the process, a wide variety of topics such as nutrition, digestion, weight, diabetes or polyneuropathy come to light.
Today's topic "Polyneuropathy (PNP)" arose from many questions and discussions with affected persons from the various regional groups, professional lectures at diverse events and discussions with physicians.
Knowing that this is a topic that does not occur daily in my consultations, I decided to take up the topic and pass on my knowledge and experience.
Peripheral polyneuropathy, what is that?
Peripheral polyneuropathy is a disease that damages the peripheral nervous system, i.e. the nerve fibres outside the brain and spinal cord.
The peripheral nervous system is also called the PNS. It is the part of the nervous system that is not part of the brain and spinal cord, the central nervous system (CNS). For the most part, it is formed by the cranial nerves and the spinal nerves and connects the CNS with the effector organ.
An effector organ is a muscle, gland, or organ capable of responding to a stimulus, especially a nerve impulse. A nerve ending carries impulses to a muscle, gland, or organ and activates muscle contractions or glandular secretions.
The PNS plays an important role in controlling the movements of the body. Polyneuropathy can disturb these. In addition, sensory disturbances can occur as well as damage to the vegetative nervous system.
Affected persons describe their sensory disorders in the groups, which they usually feel in their feet and legs, hands and fingers, and less often in their arms. Touching them with cold and warmth hurts them, they find it very unpleasant and stressful. There are many things they simply can't do anymore.
Affected people suffer from various symptoms such as burning, numbness, tingling and a feeling of cold. In particularly severe cases, they also complain of paralysis, depending on which of their nerves are damaged.
One gentleman said, "I feel like I'm walking on cotton wool or I have something in my shoe and often I can't keep my balance. The continuous stabbing, blunt pain is a constant side effect. For some time now I have been stumbling more and more often, I don't feel the smaller bumps in the ground and they have become dangerous for me. So I often fell and hurt myself. Walking and running is damn hard for me because I can no longer deliberately control my movements. Again and again I get muscle cramps, muscle twitches, which restrict me in my spontaneous movement. I can’t and don't want to move any more, let alone do sports, although I feel that this makes me weaker and less capable. Yes, and for a few days now almost the same symptoms have been appearing in my hands."
Another affected person said: "My fingers are numb, I can no longer grasp properly. I used to sew a lot, but today I can no longer thread a needle. I can hardly do my housework anymore, many things simply fall out of my hand or I hurt myself because I can no longer feel whether the water is cold or warm. I have the feeling that my hands have become less sensitive to pain, often I don't even feel that I've burned myself again."
Polyneuropathy, is it common?
In Germany, it is estimated that over five million people suffer from polyneuropathy. Unfortunately, it is often recognized very late or not at all.
The list of questions as to why this disease breaks out and what triggers it is long and, unfortunately, it is not always clear which nerves are damaged and why.
Consequential disease Diabetics
In most cases I am dealing with people who already have polyneuropathy due to diabetes mellitus. Or patients who have undergone pancreatic surgery.
In this operation, which is one of the most severe abdominal operations, the head or tail of the pancreas is usually removed. Often, for various reasons, the entire pancreas has to be removed, which means that not only have enzymes to be administered, but the patient has become a diabetic in one stroke. This means that you have diabetes 3c as a result of the operation. This is not an easily adjustable situation because both messenger substances insulin and glucagon are missing.
There are many reasons why the pancreas has to be completely removed. Often the need for surgery is due to the diagnosis of a tumour in the pancreas.
Today, we know that the earlier we discover a tumour, the greater the chances of achieving a complete cure with the operation. Unfortunately, however, the tumour is often discovered very late, it has usually already grown or it has already spread to other organs, then ultimately only the drug therapy remains.
Today, there are a variety of different chemotherapies, all of which have the objectives of significantly prolonging life and maintaining quality of life. The goal is to ensure that the side effects are tolerable for those affected and do not restrict their daily lives more than necessary.
Are there any studies on the PNP?
Patients report that they have to complete a questionnaire on sensitivity muscle tests and laboratory tests.
The sensitivity and muscle tests should be carried out by a specialist to determine the extent to which surface and depth sensitivity, muscle reflex and muscle strength are still present.
They also report that a surface depth sensitivity test was carried out on them and that muscle reflexes and strength were also tested. The doctor has several options for performing this test.
From my own experience, I know that there are also studies such as measurements of nerve conduction velocity by electron urography (ENG) or electromyography (EMG), which measure electrical activity in the muscle. In this way it is possible to determine whether the muscle itself is ill or the nerve that supplies the muscle with information.
I cannot say, whether these examinations always have to be done, if the polyneuropathy is a consequence of the operation or the chemo. It is always up to the doctor who attends to you.
In some cases the patients report that their attending doctor has referred them to a neurologist for clarification and further treatment.
Polyneuropathy caused by alcohol!
It is known that alcohol abuse can also trigger polyneuropathy and that it can lead to severe paralysis. Alcohol is hardly an issue in our groups, since the majority of people affected have pancreatic cancer and not pancreatitis, and alcohol is not often the cause of the disease.
It is often said that about one third of all diabetics can develop diabetic polyneuropathy over time. Diabetes mellitus is therefore one of the most common causes of polyneuropathy. Often people affected suffer from the symptoms even before they suspect that they have diabetes, it is often diagnosed later. In one of our diabetes training courses, it was explained that polyneuropathy is thought to be caused by damage to the smallest nerves that supply the blood vessels, or by the abundance of blood sugar that directly affects the nerves. This type of polyneuropathy usually occurs in the legs and feet.
Polyneuropathy can be triggered by poison, medication and harmful substances. We know that certain drugs can trigger polyneuropathy, such as cytostatic drugs (which are mainly used in pancreatic cancer and often contain platinum). Cytostatic drugs are cytotoxins that are mainly used in cancer therapies. Depending on their severity, those affected can suffer massively from the side effects of polyneuropathy.
Many patients who, for example, received a chemo-combination with the substance "oxaliplatin" report that their abnormal sensations in the hands and feet usually occur after the 2nd or 3rd cycle and that this is associated with considerable restrictions in their daily routine.
If you experience any of the symptoms I have described, it is important that you inform your doctor or oncologist immediately. He will certainly try to help you.
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Therapeutic approaches to Polyneuropathy
As a result of cancer therapy, in which nerve damage occurs, effective treatment is hardly possible. In the groups, sufferers report that they were informed during the consultation that the proposed chemo had a major side effect in the form of damage to the nerve endings, which could result in polyneuropathy.
If symptoms such as tingling, burning or numbness appear in the hands and feet, the attending physician must be informed immediately of these changes. He will either reduce the chemo, which can also reduce the effect, or often take out the appropriate medication, which may be responsible for the nerve damage. Or he will switch completely to another chemo.
If symptoms such as tingling, burning or numbness appear on the hands and feet, the attending physician must be informed immediately of these changes.
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Whether and to what extent the nerve damage will regress after the removal of the substances is not certain and cannot be answered with a definite yes. Affected persons also have very different opinions on this point. Some feel that it gets better when the chemo is stopped, others feel that it remains the same. None of the respondents said that all symptoms, such as the feeling of numbness, disappeared completely.
Treatment with medication is also possible, and whether or not it makes sense depends on the patient's symptoms. There are not many medications that have been proven to be effective and which effectively treat symptoms such as numbness or discomfort. Ask your attending physician about this.
But here, too, the answers of those affected were rather cautious. I had the impression that no faith was put in the drugs against polyneuropathy. As one patient said: "We have to choose between plague and cholera, knowing that neither is good. Chemotherapy is our only possibility, we don't see any other and nothing else is presented".
What can the affected person do?
People with pancreatic cancer who suffer from numbness in their hands and feet may find relief through oil baths, physiotherapy, massages, occupational therapy and electrotherapy.
Physiotherapy aims to maintain manual mobility and skill. With the help of foot rolls, stepping on sisal mats, walking on warm gravel or pebbles, lentils, peas, cherry pit cushions or hedgehog balls and finger gymnastics in warm water, the complaints can possibly be alleviated.
Whether vitamins B1, B6, B12, folic acid, L-carnitine or alpha lipoic acid or various medications available today are useful, is a subject that you should discuss with your doctor. This discussion is also very important in order to avoid potentially dangerous interactions with or reductions in the efficacy of your cancer therapy.
It is important to know that the efficacy of all the therapeutic approaches I have mentioned for the treatment of PNP has not been clearly and scientifically proven. It would be very beneficial and of the highest clinical interest if a meaningful effect were achieved in the treatments. This would significantly improve concomitant therapy in oncology. Cancer patients would have a better quality of life.
It is therefore all the more important that you inform and consult your doctor if you have any complaints, only he can help you to find ways to make you feel better.
Please also include your polyneuropathy when applying for a severely disabled person's identity card. In this case, it is essential that you have your doctor certify the extent to which your hands and feet have been impaired.
I hope I was able to explain polyneuropathy a little, even if it is not my specialty.