So, there IS hope with Waldenstrom’s; Doctor from India is okay by me…

April 9, 2009

Via some e-mails I was assured there is hope for those who have Waldenstrom’s Macroglobulinemia (WM), a form of non-Hodgkin’s lymphoma, a cancer that involves the blood system. I was diagnosed with it in June of 2007 and it sure turned my life upside down, not to mention my wife’s life as well – well there I just mentioned it.

But I was not so sure about the hope. I had gone through six month’s or actually six weeks spread out over six months worth of chemotherapy and although it fought off much of the cancer the treatment did a job on my immune system, making it nearly impossible, not quite, for it to produce white blood cells.

After changing oncologists, I was given a strong dose of a steroid-type medicine called Prednisone and that apparently shook things up enough, because I started producing those life-saving white cells again.

I still had various symptoms, such as a too high IgM (has to do with protein in the blood) number in blood tests but it was going down – but then it went up again. But overall I was doing well and then I began to feel especially ill again and got headaches and night sweats. So my second oncologist, who by self admission had little to no direct experience with WM (but worked with experts out of town on my case via phone and fax or e-mail or whatever they do), with the advice from experts in San Francisco suggested that I needed another round of chemo, albeit a less toxic one.

I was not ready for that, and for some unknown reason I began to feel better. At the same time, I consulted a third oncologist about whether I should go through chemo at this time.

After interviewing me (if that is what they call it in doctor land) two times and looking at blood tests he ordered and I would hope poring over my records, he concluded I did not need chemo at this time. But he said I would likely need it in the future.

In fact, he said things looked good at present.

As anyone who has WM knows, there’s no cure for this thing. The best you can hope for is that you are put on wait and watch and that that period lasts a long time. It used to be the general prognosis for anyone diagnosed with WM was about five years, and that is what I have been living with for nearly two years. But now I have read that it is becoming common for WM sufferers to live ten years and longer from original diagnosis. Predicting life expectancy with WM is difficult. For one thing, even when you are first diagnosed, no one knows for sure how long you have had it. There are also many other factors that come into play, such as age. I am now 59, and that is probably better than if I had been diagnosed say at 69.

Need to add here that WM is rare. Only about 1,500 cases are diagnosed in the U.S. each year.

Not everyone suffers from the same symptoms when they have WM. My original main symptom was tingling in my feet. But my worst symptom turned out to be bleeding from my tongue. I have written about this many times, so you would need to look at my previous posts. Just Google in Tony Walther’s Weblog tongue bleeding or put in the key words Waldenstrom’s Macroglobulinemia, and that is probably one way to get that post, without scrolling down through all of my posts on this site.

Uncontrolled bleeding is a symptom of WM. In my case what finally worked was an infusion of blood factor 8, and I am not 100 per cent positive I have the right factor number, but I think I do, so don’t try this at home, let your oncologist handle it – just a little WM humor, you have to have it if you have WM. And by the way, the purpose of the blood factor infusion was to make my blood clot. WM can create a strange condition in which your blood comes out gooey thick, but will not clot. (And of course for any doctors who stumble upon this, I realize my layman explanations may not be always technically right on, but, hey, I know something about this WM. I have it. And please feel free to correct me via this blog.)

I think the following things, and not necessarily in this order, have contributed to my turnaround:

– Prayers by me, and many others on my behalf (and I confess I have not been a church goer during my life).

– A survivalist attitude I took, especially when I thought I was facing another imminent round of chemo.

– Exercise. My present oncologist strongly suggested it. I took his advice, and I feel so much better. We had the good fortune of recently moving to a place that is on a hill overlooking a river and has a trail up and down the slope. I have been walking that trail at least once a day, and sometimes twice.

– Being forced to somewhat downsize our lifestyle by necessity of lack of income, but feeling so much unexpected but welcome relief in the process.

– And this maybe should be first, a supporting wife and a supporting family.

– Also, as my India type Indian oncologist suggested to me: “you can stand on one leg and meditate or you can be part of the world”.

That last comment about my from-India oncologist brings up the subject of at least two of my past blogs. I had written about the fact that the only oncologists available to me are Indian. I had had some difficulties relating or communicating with my first one, and even to a degree my second one. But this new one I seem to relate to better. That may be partly because I feel better, and largely due to the treatment from the first two. It is also because he was willing to completely review my case and share his review with me, the patient, and the others were not.

But I am here to say that no matter what your medical problem, if it seems at all serious, you should always get a second opinion, and in my case, I am on opinion number 3 and glad of it.

Looking forward: we can do better in 2009…

January 1, 2009

(Copyright 2009)

Tried to post the following blog last night, but I was just too tired to do it, but I think I’ll go ahead and post it now – I hate to see my own efforts go to waste.

The blog not posted (until now):

Even though the dateline on this blog already reads Jan. 1, 2009, I’m writing it minutes before midnight on the last day of 2008 and am doing so because I realized that I had not written anything to do with the year in review or new year’s resolutions and such.

I’ve never been big on new year resolutions. Can’t recall the ones I’ve made in the past and doubt I held to them anyway.

As far as reviewing the old year, you’ve already been there, done that. But that won’t stop me.

This has probably been one of the most tumultuous year’s as far as current events, and even personal events, go in my entire life.

There was 1963 and the President John F. Kennedy assassination, but as momentous as it was, that was an event, not an entire year. And there was 1968 when I entered the U.S. Army and when we discovered as a nation that we were not going to win in Vietnam (I went to Europe to fill a spot in the Cold War – we did win that eventually, kind of). Robert Kennedy was assassinated while running for the presidency and Martin Luther King Jr. also fell victim to an assassin.  So maybe ‘68 rivals 2008 in my mind.

For me, 2008 essentially began in a hospital bed. I don’t think I was in the hospital right on New Year’s eve, but I was soon afterwards. The only thing that kept me sane was a television set and following the primary election campaign (and of course visits from my wife and family and friends). I’ve always been a political junkie, preferring to watch the political games to the watching of sports games. On the Democratic side I think Hillary Clinton was still thought to be the queen awaiting to be seated on the throne. But there was this interloper, Barack Obama. And wasn’t the smart money on Rudy Giuliani or maybe Mitt Romney on the Republican side? I had actually predicted in a family discussion, at Thanksgiving 2007 as I recall, that Romney would be the Republican candidate and would likely win. I had said this not because I liked him, but because I just thought he was smooth and smarmy — albeit with a little business-like edginess — enough and large numbers of voters had seemed to be going his way in politics in past elections. John McCain was a longshot. He was portrayed as too maverick for his own crowd and he was too old (he did his best to un-maverick himself, save that daffy VP selection, but couldn’t stop the aging).

My own prospects were not looking good – and I stop in mid sentence to note that the new year arrived about two minutes ago here on the West Coast of the USA and I didn’t even notice. Happy New Year!

Anyway, I had a failed attempt to go back to work in December of 2007. I lasted about 18 days. And then I was in and out of the hospital during the first part of 2008 with the effects of the cancer I suffer from, Waldenstrom’s Macroglobulinemia (WM). Through much of the year I had a hard time getting my white blood cell count up high enough. By Fall, though, I had seemed to have gotten it up high enough and stabilized, but my blood is still thicker than it should be and that problem has not fully stabilized (I plan to write more about WM this year – a resolution I hope I can keep).

I do feel much better than I have in the past, though.

But back to the nation. So we had this presidential campaign. And something, as cliche as it sounds saying it this way, I thought would never happen in my lifetime happened. A black man was elected president of the United States (what next? A woman, a black woman?).

And something that I have been assured all my life would never happen again in the United States has happened, a near total collapse of our economic system. In some respects it seems worse or potentially worse than the Great Depression. We will see about that.

It’s a global economy nowadays, so the collapse is global. Well, I guess it was last time too.

I have my own economic catastrophe, but as has been the case most of my life, I can’t tie it directly to the economy in general, it’s because I have treatable, but incurable cancer.

I feel strong enough to deal with my own problems. I can only hope that our nation is strong enough to deal with its problems.

We have promising new leadership. That gives me hope.

While I don’t like the fact that an Iraqi journalist threw his shoes at our current lame duck president George W. Bush, I can’t help but think that it was a fitting metaphor toward our nation’s (Bush’s) failed policies.

Even though Herbert Hoover has been reviled most of my life, there is some revisionism that says he was not so bad. And I have often read that Harry Truman was not liked when he was president, yet Democrats and Republicans often cite his name in a positive way.

And I read the other day that a Bush insider said that his presidency fell apart on his handling or I should say mishandling of the Katrina disaster in 2005. He lost all credibility after that. It seems strange to me that he could not have seen the political value of coming to the aid of his fellow citizens in a more robust way, even if he didn’t really care. I have to contrast his performance on Katrina with the quick and decisive action of the Chinese government (not an endorsement of their system) to this year’s earthquake (even if it may have been the government’s fault that so many buildings were not earthquake safe).

At least Bush did better on Katrina than the Burmese (Myanmarese if you will) government did for its people in this past year’s devastating cyclone. Incredible that a government would hold back on outside help in order to retain its power (oh, that’s right, we refused medical help from Cuba during Katrina).

At this juncture I have a hard time seeing how George W’s legacy can be saved, but history works in mysterious ways.

And we ended 2008 with a blowup in the Middle East between Israel and the Palestinians. Modern Israel was born the same year I was and it still can’t get along with the folks it displaced (and that’s a long and complicated story and hard to sort out, and I don’t mean to take sides). The more things change, the more they stay the same.

I can do better in my life and I think our nation can do a lot better, starting this new year.

HAPPY 2009!

Watching and waiting with Waldenstrom’s…

July 23, 2008



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.”