Back Home Next

John Nesci

 

  Freehold, NJ; oakyjohn@gmail.com

1936 / Class of '90 / Transplant Class of '94 / Type: IgG Kappa / Updated: 1/09

Summary of current status.

bulletIn remission for the past 12 years
bullet18+ years since being diagnosed
bulletCurrently on no medication or treatment for MM
bullet14 years since second of two autologous transplants
bulletStable cataract as the result of shingles attack to forehead 10 years ago
bulletCompletely recovered from triple coronary artery bypass surgery in June 2000.  

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 37 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 air-borne 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 blood-work analysis, associated with the 1990 physical that revealed that I needed to see an oncologist, since my IGG was elevated - slightly more than 2000. In prior exams, the IGG level was increasing, but not to the point where medical intervention was warranted.

Currently, I am in "Excellent," remission (A pronouncement from my Oncologist, Dr Jagannath), having undergone two autologous transplants, one in Aug '93 and one in Feb '94. My "M" Marker value was between 1 and 2 prior to transplantation. The transplantation was done at Arkansas Cancer Research Center (ACRC) in Little Rock. (That facility is now known as MIRT, Myeloma Institute for Research and Treatment.)

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 (Jagannath) 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 18+ years ago. The local Oncs are not MM specialists, but I'm well satisfied with them. When they don't know the answer to something, they get 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. 13 years ago I was on pulsed Dexamethasone, 40 MG for 4 days every three weeks and two-hour Aredia transfusions every month. Both of there 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 2000.

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 problem.

11 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 sometimes 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 Ophthalmologist is reluctant to operate on the good eye unless the vision deteriorates beyond the point where glasses can be used for vision correction.

In 1998-1999, 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. That's 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. My 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 writing this 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), but the Oncs say its OK.

For the past 10 years, I've made myself available through this story and by working with CancerHope, Blood and Marrow Transplant, Leukemia and Lymphoma Society, and friends to offer encouragement and a channel through which newly diagnosed MM patients can speak with a survivor. I consider myself a survivor, as is anyone who has gotten a diagnosis of MM and is still alive. This activity is a rewarding experience. Through CancerHope, alone, I've talked with more than 100+ MM patients, to some more than once, and each time I have a chat with them, I hope that it benefits them. For myself, I get great satisfaction from talking with these people.

I'd enjoy talking with anyone who thinks that I can be of help to them. Just send an E-Mail to <oakyjohn@cs.com>.

 

Site 2000-2015 Dean Gallea (in loving memory of June Brazil)

Site 1996-1999 June Brazil - Webmaster:
(To email story contributor, see address at top of story)