June 25 1999

About Christopher:

My 22-year-old son, Chris was diagnosed with Leukemia on Nov. 5th 1998. Initial symptoms were a spontaneous bleeding nose, unexplained black and blue marks on his legs and arms, fatigue, and badly bleeding gums when brushing his teeth. This all progressed from no symptoms to diagnosis over the period of two weeks. After the first week he was misdiagnosed with bronchitis. The second time he went to the heath center a more competent Dr saw him and sent him directly to RI Hospital Emergency room. A bone marrow sample was taken and he was diagnosed with Acute Myeloid Leukemia (AML) and admitted. Further test classified it as sub type M3 - Acute Promyelocytic Leukemia. It turns out that APL is one of the more easily treated of the different types of AML. That is, it can be brought into remission without chemotherapy or bone marrow transplant in 90% of the cases using a drug called All-Trans Retinoic Acid (ATRA). A note about "remission". Remission does not mean cured. Remission is the removal of symptoms and reduction of the level of the disease below normal detection methods. ATRA therapy, unlike chemotherapy which kills cells (good as well as bad), induces maturing of the white cells through a process called differentiation. APL is the only type of cancer that this currently works on but a lot of research is being done to try and induce differentiation in other leukemias and cancers.

Chris was in RI Hospital for 6 weeks for his initial treatment with some complications but was stabilized and sent home to continue his treatment on ATRA. He still had to go back to the hematology clinic 2-3 times a week for transfusions and blood tests. Remission was documented near the end of December. He has since undergone three planned rounds of chemotherapy for what is called consolidation treatment to try and kill any remaining undetectable leukemia cells. In fact he is on his second day of the third round now. In fact I am writing this from his hospital. Each round consists of 3-4 days of getting two different types of poisons pumped into his body then waiting 10-12 days for the maximum effect when his white, red, and platelet counts go down to fractions of the normal levels, it then takes about a month for the levels to climb back. During these recovery periods he is home but must be taken to the hospital 2-3 times a week to receive whole blood and platelet transfusions and is given heavy doses of antibiotics to counter the low white counts. This is all accompanied by continual nausea and fatigue, and of course social isolation to minimize the chance of infections.

The standard ATRA protocol based on trials completed in 97 is to obtain remission with ATRA followed by two to three rounds of intense chemo-therapy. Chemo-therapy is basically controlled poisoning design to kill any remaining undetectable leukemia cells, but unfortunately kills most of the good blood cells along with them. The chemo-therapy is followed by one year of treatment with ATRA for maintenance. The 2-3 year survival rate for APL patients undergoing this protocol is over 75%. Though this may not sound great, it is much better than most adult Leukemia's.

One of the things about this treatment is that there is no way of immediately telling if it's working. If you don't go into relapse in 2-3 years it probably worked. The accepted cure condition for Leukemia is 5 years without relapse. If Chris does go into relapse there are still other alternatives. Evidently you cant get back into remission with ATRA but there are some active trials at several of the major cancer centers, Sloan-Kitteran in particular, using Arsenic Trioxide (more poison), possibly followed by a Bone Marrow Transplant (BMT) which seems to be the treatment of choice for APL patients who relapse after ATRA protocol. Chris's only sister was tested for HLA matching for bone marrow but was only a 50% match (as was my wife and I). So if he does ever need a BMT it will probably have to be an unrelated donor from the National Bone Marrow Donor Program (NBMDP). By the way, if any body wants info on joining this registry, I can provide it. Both Debi and I have joined. Its basically like the lottery, the odds of being called are slim but the reward of being a matched donor who can save another persons life is better I think than winning powerball. To become a donor you first have to get educated about what would be involved in doing a marrow harvest and then give 8 vials of blood to be HLA tested. This would normally cost about $50, but there's a new RI law that requires any insurance company operating in RI to pay for HLA matching. Any further testing and medical expenses for donation are covered by the patients insurance.

The chemo drugs that Chris has been getting are slightly different than those normally used for this protocol since the standard chemo is traumatic to the heart and Christopher has had two corrective open heart surgeries, at 4 mos. and 8 years, for the congenital heart defect he was born with, Tetrology of Fallot. The alternate chemo he is getting is less traumatic to the heart but has a higher risk of causing permanent marrow damage, and get this; it also has a small risk of causing a different kind of leukemia. In spite, or because of, of all this Chris is doing great. He has recently had a special bone marrow test (PCR) that is much more sensitive than the test done to diagnose and document remission and it came back negative. Chris is a strong kid, and he has that and his age going for him. Debi and I are both starting to feel pretty confident that after this last round of chemo that Chris and we will be able to get back to our normal lives, at least normal for us.

About Leukemia:

Leukemia is a cancer that originates in the bone marrow and/or lymphatic tissues were blood is formed. The cancer is in the form of genetically altered white cells that do not mature into functional cells but multiply uncontrollably and take over the blood system minimizing the number of functional white and red cells and platelets. It kills more children between the age of 2 and 15 then any other disease, and it kills more adults then children. It is not inherited and it is not contagious. It is believed that some forms of radiation and some industrial chemicals can increase the chances of getting leukemia but these account for less than 1% of the cases. Most forms of Leukemia can only be brought into remission using high doses of chemotherapy and may require a bone marrow transplant. Christopher's form of leukemia is an exception and is explained in an above paragraph.

About THE LEUKEMIA SOCIETY:

The Leukemia society is the primary fundraiser for research money to find treatment and cures for all the blood diseases (spelt CANCER). Leukemia research is often the leading technology for new treatment methods that are applicable to all cancers. They are also very active in patient services providing literature, support groups, a 24 hour information service, and some patient medical expense assistance.

About Platelet Pheresis:

Don't feel like making a cash donation, How about your blood. I've donated whole blood for years and had heard something about blood component donations but never realized how important, and easy, it is until recently Leukemia patients as well as victims of other blood diseases and cancer patients undergoing chemo all require periodic transfusions of platelets. One transfusion consists of one bag of 6-8 units of platelets. One unit of platelets is the quantity that can be extracted from a one-pint donation of whole blood. Platelets can either be extracted from donated whole blood or directly from one donor through Pheresis. One Pheresis donation can produce the 6-8 units required for one transfusion bag. The preferred transfusion method is to use a single donor bag because it minimizes the chance of bad reactions to the transfusion. I've lost track, but Chris has probably received over twenty 6-8 unit transfusions so far during his treatment as well as numerous whole blood transfusions. Rhode Island does not require "one for one" replacement donations (as they once did) mainly due to the efforts of the Rhode Island Blood Center in running blood drives and the generosity of the donors in this state. One other thing about platelets is that unlike whole blood, which can be stored indefinitely, they have to be used within 5 days after being donated. Anyone who can donate whole blood should also be able to donate platelets, but it takes a little longer and you have to do it at a blood center. Rhode Island blood centers are located in Providence and Middletown. The complete process takes about 2 hours from entering to leaving the building. The actual Pheresis takes about 70-100 minutes. The process includes one IV type needle with three lines attached to a Pheresis machine, one to remove blood, one to return blood that the platelets have been extracted from and a third which adds anticoagulants to the blood. The Pheresis machine is basically a centrifuge that separates out the platelets. The typical reactions during the process can be slight chills and tingling of the gums from the anti-coagulants. The Pheresis nurses will supply you with blankets, heat packs, and Tums. The calcium in the Tums counters the gum tingling. You sit in a comfortable chair with your own TV&VCR and headphones and can watch a movie, they have about twenty tapes or you can bring your own, read a book, or just talk with the staff. All of your red and white cells are returned to you during the process, and your body will replace the platelets within 24-48 hrs. I've done Pheresis five times in the past 12 weeks and so far my only reaction was that I a had a slight chill driving back to work. You can do Pheresis donations 2 weeks apart, unlike whole blood were you have to wait 8 weeks between donations. Actually you have to wait 8 weeks after a whole blood donation to do Pheresis but then can do either whole blood or Pheresis after another two weeks. By the way you'll also get a Rhode Island Blood Center Pheresis coffee mug "Pheresis donors are patient people" on your first visit.

Still here? If your interested in more info about becoming a regular or even one time donor, call or stop by one of the blood centers and talk to one of the Pheresis nurses and pick up some pamphlets or even talk to me. You do have to go for a pre-donation blood test, two small vials takes 5 minutes, to type and check your platelet count at least one day before your donation. On subsequent donations you may or may not have to do a pre-count depending on your prior post donation count. From my many visits to the hematology clinic at RI hosp I can assure you that both whole blood and platelets are continually needed and appreciated by an unfortunately continual source of hematology and oncology patients.