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John Nesci
01.01.94

Freehold, NJ; oakyjohn@cs.com

1936 / Transplant Class of '94 / Type: IgG Kappa / Last Update: 1/02

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Summary of current status.

  • In complete remission for the past 5 years. 
  • 11+ years since being diagnosed.
  • Currently on no medication or treatment for MM. 
  • 8 years since second of two autologous transplants.
  • Developing a cataract as the result of shingles attack to forehead 5 years ago.
  • Recovered from triple coronary artery bypass surgery in June 00.

I grew up, until the age of 20, in Central Connecticut. I did a stint in the Army from 1958-1962, spending most of my service time in El Paso, Tx (Fort Bliss). I've lived in the suburbs most of my life. For the past 30 years, I've lived about 40 miles from a nuclear generating station (Oyster Creek, in Lacy Township, NJ). They've had some mishaps there, but I don't think that any hazardous substances made it this far. Oyster Creek is on the coast of NJ and the prevailing winds sweep any possible hazardous materials out to sea.

Until being diagnosed with MM in September, 1990, my health was very good. I was slightly overweight, but had nothing that needed medical attention. So when the diagnosis was made, at age 54, I couldn't believe it. I worked in the telephone industry, as an engineer, a relatively clean existence. We used to be able to avail ourselves of complete physicals every two years, and it was the results of the bloodwork analysis, associated with the 1990 physical that revealed that I needed to see an oncologist, since my IGG was elevated. In prior exams, the IGG level was increasing, but not to the point where medical intervention was warranted.

Currently, I am in complete remission, having undergone two autologous transplants, one in Aug '93 and one in Feb '94. My Myeloma Marker value was between 1 and 2 prior to transplantation. The transplantation was done at Arkansas Cancer Research Center (ACRC) in Little Rock. I was under the care of their doctors from Jan '93 to June of '98. Since June '98, I have been under the care of a transplant doctor who used to be with ACRC, but now is chief of Myeloma Services at St Vincent's Comprehensive Cancer Center in New York City - a much easier commute versus Arkansas. I also use a local Hematologist-Oncologist and have been with his partners since the first diagnosis 11+ years ago. The local Onc is not MM specialist, but I'm well satisfied with him. When he doesn't know the answer to something, he gets in touch with the transplant folks, or persons from another specialty and they work it out together. The symptoms of my myeloma are minimal now. I have some bone pain due to 3 compressed thoracic vertebra (probably caused by the myeloma appetite for bone material) and there are times when I experience tiredness. Other than that, I lead a fairly normal and active life.

I am not now undergoing any treatment or using any medication for my myeloma. So, it could be said that the disease is on the back burner - I hope it stays there forever. Three years ago I was on pulsed Dexamethasone, 40 MG for 4 days every three weeks and two-hour Aredia transfusions every month. Both of these drugs have been discontinued because "I don't need them," according to the docs. I am on medication to keep the cataract and eye inflammation from the shingles attack in check. I am also on medication to regulate my heart rate and to lower cholesterol following the bypass surgery in June 00.

The type of Myeloma that I have is IgG with a Kappa Spike. Fortunately, I am not a Bence-Jones secretor. The treatment I received was two auto transplants, with all the usual chemo, total body irradiation (TBI), biotherapy, and all the ancillary drugs that are given to patients to provide relief from side-effects of treatment.

Some alternative therapies were tried without success. They were Accutane to try to boost platelets following transplantation, Interferon to try to improve remission prior to transplant, and IL-4 treatment to try to move me toward remission after the dismal results from the first transplant. Problems that I encountered during treatment were nausea, mouth sores, diarrhea, low hemoglobin, low platelets, some fevers, inability to eat, inability to concentrate, hair loss, and having a low attention span. I think that all of these problems have disappeared, but, don't ask my wife about the last one.

5 years ago, I had shingles. They attacked me in the forehead region and have affected my vision. Currently, I still have itchiness on the forehead and use a salve called, ItchX to provide relief. For vision problems, I sought treatment at the Wills Eye Hospital in Philadelphia and am still under their care. The vision problems have improved but , my sight has permanently been degraded as a result of the shingles attack. The reason that I have not had cataract surgery is that the eye that is impacted is my only "good," eye - I'm blind in the other eye. The Opthamologist is reluctant to operate on the good eye unless the vision deteriorates beyond the point where glasses can be used for vision correction.

Two years ago, I experienced angina when I exerted. My Myeloma doctors said that I should start taking up company with the cardio docs. After the usual testing (Stress and Angiography) it was determined that I had three partially or totally blocked coronary arteries. I opted for the bypass operation to be done using the minimal invasion technique. Thats where access to the heart is gotten by making a horizontal incision between the two ribs over the heart and spreading the ribs to get the heart out so it can be worked on. The usual operation requires a sternotomy, where the sternum is parted to provide access to the heart. Recovery is complete and chest pain is gone.

I'd like to say that nobody knows where they would be if they had done nothing to attack myeloma or waited too long before starting a treatment program. We all know people who have not survived these kinds of treatments, but on balance, I feel that I would not be here if I had not gotten into the transplant program. Transplants are probably not for everybody facing MM, but, I feel fortunate that the treatment has turned out favorably for me. It wasn't always that way, because it took me about 2 years, post transplant to overcome poor platelet production. Platelets are still low (around 180K) the oncs say its OK.

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Below, is a recap of the day I was told that I was in complete remission. Its included here as an experience that I wish would happen to all Myeloma sufferers.

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The doctor was busily flipping through my charts, reading rapidly, nodding his head affirmatively, or saying, "M-mmm. . ., " after reading each, moistening his fingers as he searched for more pages. I couldn't stand the suspense any longer, so I said, "Dr Barlogie*, are you in a position to state my remission status?" He said, "Just a minute - I'm about to tell you, but I need to look at a few more reports." Finally, he said, "You are in Complete Remission."

I had moisture in my eyes. This transplant road has been an arduous route and lately, though the M-Level (a measure of the degree of myeloma by analysis of blood) has been low, doctors have used words like, "Excellent Partial Remission, Near Complete Remission, A Hair Away from Remission, and Very Close to Remission. All these words were backed by the M-Level indicating 0.01. For comparison, a mild case of myeloma has a reading in the 1-2 range. Prior to transplant, I was a 1.2 and after transplant the level slowly fell - that's the correct direction. But for the last 4 months, the level sunk too low to measure, so the results were indicated as TR, meaning trace. My marrow is clear of cancer cells and radiographic testing shows no active bone lesions.

I am fortunate and thankful to be in this condition, 4 1/3 years following my second auto transplant. My wish for anyone else who has MM, or for anyone suffering from any cancer, is that they come join us in the expanding list of survivors. For those who provide care for cancer patients, my wish is that your burden be lightened by the person in your care returning to independence and a better quality of life. Thank you for the support that many of you have provided while I was recovering.

*Dr Barlogie is the head of the Myeloma unit of Arkansas Cancer Research Center in Little Rock and one of the leaders in the charge against Myeloma.

Feel free to contact me if you want to chat about this disease.


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