Before I go into the next phase of my journey fighting melanoma, I think I should write a little bit about paraneoplastic syndromes. As I found out during my hospitalization in October 2010, much of what I was dealing with was not the malignancy but the effect that it had on my immune system.
***I suffer from a complex paraneoplastic neurological syndrome that first manifested itself in 2009 as transverse myelitis.***
My condition is progressive and I believe relapsing, each time a little different and worse than the time before. I have symptoms continuously but part of this disease seems to come and go. Hard to explain but that’s the way it is.
A paraneoplastic neurological syndrome is a condition that affects the nervous system (brain, spinal cord, nerves and muscles) in patients who have cancer. In my case, metastatic malignant melanoma.
***”Paraneoplastic” simply means that the neurological disorder or syndrome is not caused by the tumor (cancer) itself, but by the immunological reactions that the tumor produces.***
In this condition, the body’s immunological system interprets the cancer as an invasion and it mounts a counterattack by way of an immune response that utilizes antibodies and lymphocytes to fight the cancer. The bad part is that sometimes this counterattack leaves collateral damage to the nervous system. And this damage is sometimes very severe.
***For many including myself, the immune response has caused nervous system damage that far exceeds the damage that has been done by the malignant tumors themselves.***
For me, my paraneoplastic neurological syndrome has manifested itself in many ways creating a complex set of symptoms.
- Ataxia (loss of balance)
- Progressive polyneuropathies (numbness and weakness in the hands and feet)
- Myoclonus (involuntary body jerks)
- Problems sleeping (insomnia and chronic sleep apnea)
- Chronic overwhelming fatigue
- Loss of hearing and tinnitus (ringing in the ears)
- Emotional lability (pseudobulbar affect) causing uncontrolled crying and other emotional disturbances
- Short-term memory deficits
- Seizure-like spells where I am aware of surroundings but can not respond
- Tremors (shaking) of the hands
- Double vision and/or blurry vision (a sensation of jumpiness of the visual field)
- Vertigo and dizziness
- Changes in heart rhythms (bradycardia leading to pacemaker surgery)
- Lancinating pain (short-lasting, electric shock type pain)
- Taste sensations (metallic or other bad taste in the mouth)
- Shivers, chills, cold hands and feet – white fingers and toes
- Burning pain in hands and feet, pins and needles sensations
- Autonomic dysfunction including dry mouth, orthostatic hypotension, constipation, bladder dysfunction and erectile dysfunction
- Sensations in the face and drooping eyelids
- Weakness in the shoulders, trunk and hips that makes walking difficult
- Severe pain in muscles, tendons and ligaments
- Unrelenting itching that can not be relieved, particularly along the spine and radiating to the front of the chest
My cancer (stage IV melanoma) has been treated by way of excision (surgery) and high dose interferon therapy. The treatment of my paraneoplastic syndrome has included high dose steroids, IVIG, and long-term immunosuppressive therapy with Cytoxan (cyclophosphamide) as well as symptomatic treatment (pacemaker) and supportive treatment to help deal with the severe chronic symptoms.
***Cancer can have a significant impact upon your life both directly through the fight to eliminate the tumors and indirectly through paraneoplastic syndromes manifested by your own body’s attempt to fight the cancer that goes wrong and fights you instead.***
I hope this helps to explain some of what I am going through and provides more insight as I continue my chronicle of my ongoing fight in my life with metastatic melanoma.
Please go to the following link to read more about my battle with both the cancer and its effects:
The next chapter in my fight may be found at:
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