Watching and waiting with Waldenstrom’s…

July 23, 2008

(copyright)

The WALTHER REPORT

By Tony Walther

I’m “back to square one” with my cancer, Waldenstrom’s macroglobulinemia (WM), is the sad, but not unexpected news I received from my oncologist today (Tuesday, July 22). Not unexpected, because she essentially already told me that in a phone call late last week.

Physically, I don’t feel bad (a little sluggish). And mentally, well, although I am not in actual denial, never have been, I do play that little mind game of not thinking about it. How else can one keep his sanity? We all know we face death. It’s just a question of when.

WM is treatable, but non-curable. It is a slow moving (indolent) form of non-Hodgkin’s lymphoma, in simple terms, a blood cancer.

I was originally diagnosed with WM in early June of 2007. At my former oncologist’s advice, I immediately started on chemotherapy. For one week, each month, for six months, I went to the doctor’s office each day (well actually a five-day week) and received treatment. Monday through Thursday, I would sit in a recliner and be hooked up to an IV and have what are essentially poisons run through my system. On Friday, I would get a shot of Neulasta to keep my white blood cell count up so I would not suffer neutropenia, the condition of having too low of a neutrophil count (a type of white blood cell),which causes one to be super susceptible to any bug or infection that comes along.

At the end of those six months, the good news, according to my oncologist at the time, was that my cancer was gone (for the time being).

I still had problems with a low white blood cell count, which was expected, and somewhat troubling was the fact that on some of my bone marrow biopsies, some scarring or fibrosis was evident. But I won’t go into all that for now (and my last biopsy, no. 5, did not look so bad). Suffice to say, my white cell counts went up, and I was pronounced good to go back to work. I felt fine. But I had a demanding job, driving a truck, pulling double trailers over the icy and snowy mountains. But, I hasten to add, it was really not the hard work that caused me a problem, directly anyway, it was apparently the fact that my white blood cell count dropped and I got sick. My last two days at work were among the longest in my life. The second to the last day I spent hours throwing snow chains around tires, putting them on, taking them off, waiting for the roads to open and so forth. Because of road conditions and hours-of-service rules, and my own worsening physical condition, I couldn’t get back home. I spent a night in an old and damp motel room, squirming in my own sweat, caused by both the damp condition of the room and the night sweats that come along with WM. I threw some more chains the next day, made it over the pass, and headed home – not knowing whether the road would close in front of me at any moment. But I made it. It was not long before I was in the hospital. I was in there on that stay for two weeks.

During my chemo treatment, in between my actual chemo weeks, I was in and out of the hospital, due to getting fevers as a result of my neutropenia. I just decided to add that fact to give you a clearer picture of the situation (and in a future post I will write about the mouth sores one can get with chemo and the issue I had with a tongue that would not stop bleeding).

But back to the present: My new oncologist (I’ve already mentioned why I changed in two previous posts) has given me two options. One is to watch and wait for awhile (and I think WM sufferers will recognize that one) or to begin another round of chemo, only this time it would be administered orally. With the fact that I am already close to being considered neutropenic again, the doctor doesn’t think I could stand up to normal chemo, with the IVs. I have chosen to watch and wait.

Now I should have gone into more detail here, but I confess, I still have not read up enough on my condition (and by this time, I should have been an expert) to make total sense of everything. In the past, I thought I had enough general info in my head about it, but that does not seem the case now. I am confused.

At the risk of being repetitive of previous blogs, if you get nothing else out of what I have written so far, please get this:

If you face a similar situation as I am or have faced, be pro-active (actually, I think the word active means the same thing, but I guess people prefer pro-active). Read up and learn as much as you can about WM or whatever condition you might suffer from. You will be asked for your consent to various treatments along the way, and you are at a distinct disadvantage if you don’t have some understanding of what is going on.

Get a second opinion. Most insurances pay for it and it is the thing to do. It could save you a lot of grief, it could even save your life, and it will at least give you some peace of mind.

For those of you who are really interested in this stuff and for those who have already contacted me and have given me some of their info, I promise again to go into more detail, but I am behind on my studies of WM.

I want to put out there what my oncologist proposes for chemo and something about stem cell transplant and all my bone marrow biopsies and so on. I’ll will do this as soon as I can.

And here’s a hint of something I want to mention, my oncologist suggests trying Thalidomide in the oral treatment. Anyone my age, 58, or older, will recall that drug was connected with birth defects in newborns many decades ago. Yes, when she mentioned it, it gave me pause. The doctor said the drug companies demand that women get pregnancy tests before using it (since I’m a guy, I won’t have to do that), even from one patient who is 70. At any rate, if anyone knows about the use of Thalidomide against WM, let me know. I’ll write about it some more in future posts.

So for now, my whole life is down to “watch and wait.”