I was diagnosed with Waldenstroms in Sept. 2000. The thing that sent me to the doctor in the first place was bruising. I was getting bruises for no reason. I went to the Dr. to find out what was causing this. I was sent to the Lab for blood work. The Doctor sent me to the emergency room immediately as my platelets were at 7000.

To say the least it was very scary. I was admitted into the ONCOLOGY ward that night. The next day Tuesday I started a battery of tests which lasted four days. On Friday evening I was given two Packs of Platelets and went to surgery to have an infusaport installed in my chest. I had been diagnosed with this rare disease.

I started my first chemo (fludara) on Sunday morning. I have had no problems what so ever with the chemo, ether Fludara or Rituxan. To date I have had eight shots of Fludara and four of Rituxan. Three treatments of PP to lower my IgM, (6000+ before and 2300 after) and the serum viscosity. Had my nose cauterized twice due to bleeding also I had problems with bleeding teeth.

As of this date my Dr. says my lymphoma is in remission. No bruising or bleeding for about two or three months. The problem is my IgM remains elevated. We attempt to control it with Cytoxan. I am taking 100mg daily for three weeks then off for three weeks. After taking Cytoxan my IgM will go down to around 3000 and then return to around 4000 during the three off weeks. When diagnosed my HGB was in the high 7's or low 8's. Last blood test it was up to 11.9 and platelets were up to 138,000.

With the exception of the IgM my blood tests are getting better and better. I feel my strength is returning more and more each week now. I also notice that my blood pressure is beginning to increase. When diagnosed my BP was always around 100/65 sometimes lower. I was getting dizzy when I would stand up especially when I was kneeling or sitting down. Now I'm getting the high to 130 and up to 160 and the lower number is sometimes in the low 80's. No more dizzy spells.

I guess that's about it to this date. I have a doctors appointment March 7th. Blood tests one week before that. I will find out if anything has improved. I'm waiting for spring when Bexxar or Zevalin are available for all of us with this problem. Maybe this new chemo will make this disease a thing of the past. We can only hope.

I always wondered what my emotions would be if a doctor would tell me I had some terrible disease that could threaten my life or change my life style significantly. It was almost like I didn't realize what he told me. In reality I knew exactly what he told me and I accepted it immediately. Then he told me that this disease was not curable but very controllable. It almost was like I had no emotions at all. My first thought was let’s get on with the control. Of course it has changed my life very much. Seeing my Doctors almost on a daily basis, I got used to that. I guess I got very comfortable knowing what my blood tests results were. In January I was given three weeks off from the doctors appointments. After the first week I was getting apprehensive about not having an appointment and the doctors word that everything is going along OK. I wondered what my platelets and everything were doing. I am very comfortable with the three weeks now. I realize that I will probably have frequent appointments even if I get into full remission or cured.

On my last visit I mentioned remission and he told me not to use that word again. The new chemos, Bexxar and Zevalin will be out this spring and he explained how they work and that we are going for the cure. I understand that the trial period is over and they are waiting on FDA approval to put them on the market.

Hope is just around the corner. I am feeling fine though I'm still weak and can not do much for any length of time without sitting down and resting for a while. When the weather gets warmer I will start walking each day and will increase the length of the walks as I go. I have even shoveled snow off the walks twice.

I'm coming back. E.E. "Gus" Gustafson