Another year gone and I am still surviving Waldenström’s…

December 31, 2012

WordPress, the blog service that makes this site possible, tells me that among my most frequently called up topics is Waldenström’s Macroglobulinemia, WM, a non-Hodgkins lymphoma.

It’s been quite awhile since I have done a post on this so I figured it’s about time I did another.

So 2012 is almost history as I write this and it’s been another year of survival for me since being diagnosed with WM, an incurable cancer (they tell me), in 2007.

In fact, I have been doing great. Chemo over a six-month period was not fun and then trying to get my immune system back over the course of a year or so was touchy (the chemo having nearly destroyed it along with cancer cells) and those bone marrow biopsies were not fun either. (See more on immune system recovery at the very end of this post.)

WM affects different people in different ways and the symptoms if there are any noticeable ones are not the same for everyone.

Before I say how it affected me I want to say right here and now that since recovering not from WM but from the treatment, I have felt better and stronger in some respects than I felt in much of my life preceding. Part of it may just be that I am so grateful that I am alive and able to get around and work and enjoy life and that I no longer take good health for granted. But I still don’t eat the things I should much of the time. My long-distance truck driver lifestyle gets in the way. But I was led to believe, partly by my own misunderstanding, perhaps, and maybe in the way it was put to me, that I only had about five years left. Really. Well, I made it through year five anyway and there is no indication that I am going down hill. In fact I only see my oncologist about once every six months now and I am not on any prescribed medicine. But my blood tests show I still have WM. I have too much protean in my blood, however, my blood viscosity has been staying at a normal level. It had been way too thick previously.

While I did some research on WM initially, I did not stick with it, and I am not going to go over all that stuff in this post. You can find all that yourself via Google and other sources.

But I will recap what happened to me (I think a lot of the traffic on this site is from people who have just been informed they have WM or their loved ones):

Oh, and before that, I will add that WM is rare, about 1,500 diagnoses per year in the U.S.

And as I think I already said, not everyone will have the same symptoms and, in fact, many experience no symptoms and it just comes up on a routine blood test. But even if you don’t know you have it, it can cause things to happen to you and lead to death.

So what happened to me is that I had finally late in my working life landed a great paying truck driving job and was feeling great. But then I began to have tingling in my toes. And about this time I noticed a strange sore on the upper, front part of my tongue. Then we had a backyard barbecue and I bit into a big thick juicy steak but also my tongue. It began to bleed and I could not stop it. I went to the emergency room and they could do nothing, really. It did eventually subside.

(And remember, the symptoms are not always the same.)

I have to leave out some details here because it just takes up too much space, but I need to tell you that over several months I had these bleeding episodes and I must have swallowed gallons of blood in my sleep. Finally my oncologist ordered a transfusion of a blood factor into my system and that seemed to stop it all. However, I got a scare recently when I had a dental implant done. It seems that the deep digging they did in my mouth caused a resurgence of uncontrolled bleeding but this time from my gum. But it stopped within 24 hours and no trouble since. And I have had other dental work done.

Over the course of a year I was in and out of the hospital. Once I got so dehydrated from bleeding that I fainted and I actually thought I was in my death throes. I mean everything went blurry but I could still hear voices. I still had some consciousness.

I wanted to protect my good-paying job so I ended up going back to work too early. I got terribly sick while tramping around in deep snow installing snow chains on a truck. I was put back in the hospital. My immune system had not yet recovered enough.

Lost that job. Now I am back at one that pays much less for more work. But I am happy about it nonetheless. I am living and I have a job (no minor deal in this economy) and I am self-sufficient.

I have an appointment with my oncologist next week. I don’t expect any real news out of that, but if there is I’ll post something.

Several people have emailed me and some have told me how they or a loved one with WM are long-time survivors of WM. I hope I continue to be one.

Not sure what this has to do with it, but my mom is 102. I want to keep up with her.


While I certainly do not want to be seen as offering medical advice, I do want to note this: from what I have read there seems to be two general approaches to WM treatment, aggressive and not so much (pardon the modern slang). I read somewhere a doctor advising to try not to disturb the patient’s quality of life any more than is necessary. You see, not a lot is known about this form of cancer. So it is often a guess, albeit hopefully an educated one, as to what steps are appropriate in treatment. Of course you really need to go by what the doctors say, but it would not hurt to read up on things such as the different types of chemo. I had a fairly harsh variety I think, but I understand there are milder forms now. I hope all of this has helped.

P.s. P.s.

Thought of something else. I have gone through three oncologists and left and gone back to one of them. But each one of them did something positive for me. The first one had the worst bedside manner but he saved my life (so thanks). The second got my immune system jump started after consulting with some experts in the SF Bay area. Up to that point the standard things did not work. I took a heavy dosage of Prednisone for about a week. It worked. You are always feeling up and eat like crazy. The third was easy going and gave me confidence. And now I am back to the second one. I live in a relatively rural area, so it is difficult to find doctors knowledgeable about this rare form of cancer here, but my present oncologist is willing to consult the experts — and it did work last time.

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.

Keeping an open mind about Indian doctors

March 12, 2009

In a followup to my how do I find a non-India Indian type doctor post, I can report that I met with my new Indian (India) oncologist today and I can understand him and he seems interested in helping me and indicates he will give my problems a thorough study. He talked with me, and my wife, for a long time.

While my frustration has been real after dealing with two previous doctors from that mystical place half way round the world, I appreciate whatever they may have done to help me. And I am willing to give it a try one more time.

Apparently there is more motivation and brain power available on the Indian subcontinent than in the United States right now when it comes to medicine – no offense to our existing homegrown medical professionals intended.

I went most of my life without having to deal with doctors – only a few exceptions. What I have come to believe after being diagnosed in June of 2007 with a form of cancer known as Waldenstrom’s Macroglobulinemia or WM (a non-Hodgkins lymphoma) is that it is up to you as a patient to make sure your doctors (primary and specialists) are willing and able to communicate with you. Far better to take a chance and get second, third and so on opinions than be railroaded into treatments you do not fully understand the consequences of.  And I quickly add that I am not saying exactly that such has been the case with me. I’m just saying be picky about doctors. It’s your life.

I’ve also come to the conclusion that the number of opinions you get will likely correspond to the number of doctors you talk to.

While I stand by what I said in a previous post (s) about Indian doctors, I am obviously seeing yet another one and am keeping an open mind.


For my WM fans, I plan to do a post soon to update you on my condition. But if you scroll down on this blogsite to the long post entitled: “The great Indian doctor quandary” you will get a fairly good and up-to-date-rundown. Or just click onto WM at the right side of this page under categories.

(copyright 2009)

Thanksgiving for cancer support and prayers…

November 27, 2008

(Copyright 2008)


By Tony Walther

The one thing we all face together in this thing called life is that none of us are going to get out of it alive.

Once one faces that fact, maybe it is a lot easier to face the future. I’m 59 and was diagnosed with a treatable but incurable type of cancer almost a year and a half ago.

For me, if often seems the future is already here or maybe it has come and gone. I mean I always spent so much time either thinking things would be better in the future or putting things off till the future.

When I was first diagnosed with Waldenstrom’s Macroglobulinemia (WM), I was told that the average life expentency after diagnosis was five years. But the problem is when did the clock start running? No one knows when he or she first got it. I litterally thought I was a goner when I was first diagnosed. Then I read some blogs and some info on the net that indicated that my life expectency could be somewhat longer or in fact that it was really unknown how long I might live. One doctor suggested I might even live to be a relatively old man (I doubt it, though).

Cancer never shows up at a good time, but for me it seemed particularly inconvenient. I was not long into the best job, at least pay wise, that I had ever had. I have four years of college, but pulling double freight trailers up and down the highway was paying me more than I had ever seen. In fact, I was always happy to note that my wages were as high or higher than a lot of those listed for beginning professional jobs in my area of the country. Of course beginners in the professions can make a lot more eventually, although they have to better themselves and move on to do it. Or as my former oncologist not so delicately put it, those doctors down at the urgent care clinic do not know what they are doing, if they did, they wouldn’t be working there (hopefully I don’t have to go to an urgent care center and hopefully if I do the doctor didn’t read this and besides I was just paraphrasing my egotistical former oncologist, who as far as I know did at least save my life at one point).

And I get off track so easily…. anyway, I got cancer and that put a monkey wrench into the works, to say the least. If you have WM you know or will soon find out that it is a watch and wait thing either before they decide to do treatment or after. It is incurable, so you always have that feeling of doom hanging over your head. But, remember, we all had that anyway.

I would advise joining a cancer support group – and I know if you are like me, you think, support group, no not for me. I don’t want to sit around listening to people moan about their misery. It’s bad enough I have this thing, without listening to the woes of others.

But my wife talked me into going recently, and the best thing for the both of us, is that we both go. She has gotten as much out of it as me. She’s the care giver. A lot of the spouses or care givers are in our group. One member does not have another person and others can’t get their significant others to attend. In some cases the non-attending others are the actual cancer sufferers and in some cases the spouse or care giver.

And it’s not just moaning and groaning — there can be some of that, but there is also happiness and joy, and education, and most of all, just normal every-day people sharing their lives and thankful they have others to share with.

What I really wanted to say in this blog was that I am thankful to be alive and thankful that I have a family and thankful that I can spend another Thanksgiving with them.

Through my family and friends a lot of people have said prayers for me, most of whom I do not even know. I thank them and the one to whom they are addressing their prayers.

The cancer has been a heavy burden, but at least it has allowed me to appreciate the good things the Lord has bestowed upon me and us all.

This truly is a time of thanksgiving.

Happy Thanksgiving to all!

Have WM? Don’t worry, be happy….

August 27, 2008

(Copyright 2008)


By Tony Walther

This was going to be a blog about the latest developments in my Waldenstrom’s macroglobulinemia (WM), a form of cancer, and maybe I will say some things about it, but really I’m just blogging now to put off other things I really should be doing.

(For a summer of fires update, please see the P.S. at the bottom of this blog.)

But, okay, I will say something about my WM. Went to my oncologist yesterday and found out that despite what I had been told many weeks ago by a specialist in San Francisco, I am not in remission. Actually, I don’t think he said unequivocally that I was in remission, but he suggested as much. But I already knew before yesterday that such was not the case. My oncologist here at home told me my cancer was still doing its thing several weeks ago, and again yesterday.

The good news was that things seem to be fairly stable at the moment, although my protein level in the blood is starting to climb again, if ever so slightly. The bad news is that I cannot go back to work and it is not looking as though I ever will. I also may be looking at another round of chemotherapy in the near future.

Not being able to return to work would not be so bad if I had a lot of money, but you know, I don’t. I was really holding out hope that I could go back to work and maybe build up a little nest egg. I am 59 now. So anyone reading this, especially if you are younger, please, for your own sake and for the sake of your family, if you have one, prepare for the future, for that future can come now.

It’s been about a year and two months since I was diagnosed with WM, a non-curable form of non-Hodgkin’s lymphoma. It’s slow moving, indolent they like to say, but the problem is by the time one is diagnosed, one never really knows how long one has had it (I use “one” to avoid that awkward he or she thing and now I have to explain it and I might as well have said he or she or just he because that is often gender neutral anyway).

You hear things like, your life expectancy once you’ve been diagnosed is five years, maybe even ten years, could be more, could be less than all that, because for one reason even the doctors don’t know how long you’ve had it.

So, anyway, the oncologist tells my wife as we are leaving (I’m sitting a ways away in the waiting room) to enjoy the time we have left and don’t worry. While that is easier said than done, I wholeheartedly agree with that advice (what would be the point in doing anything else?).

I intend to write a more detailed blog about my WM soon (as in today or tomorrow). This I would think would be of general interest but also of special interest to anyone who has WM or anyone whose family member has it. It is a rare form of cancer, so unfortunately there has not been a lot of research on it, at least not compared to the more prevalent forms of cancer.

This is my second summer with WM. I went through six, one-week, sessions of chemotherapy and many hospital stays, mostly due to a weak immune system, and worst of all early on I had a bout with uncontrollable bleeding of the tongue, finally put down with an infusion of factor 8 in my blood. When my immune system was at its worst, I had terrible mouth sores.

So now, I do not have any sores and little to no pain or discomfort – oh, except for the neuropathy or nerve damage in my feet, which was actually my first symptom. So if you ever get that, make sure you get a blood test, you might have WM and the sooner you jump on it, the better chance you have of prolonging your life. I have read that many times when one is diagnosed with WM nothing is done because it is in its early stages. I guess that can be unsettling too, to know you have a deadly disease, but nothing can be done about it at the time.

I should add that I suffer from some anxiety and fatigue at times, which my oncologist tells me is expected with my disease.

I always know my blogs have gone on long enough when I get to the second page, so I’ll try to wrap things up.

As I said, I plan to write more about my WM with some more details or tidbits that might be of interest, especially to those with it or affected by it.

And I should always add this piece of advice, always get a second opinion and make sure you are comfortable with your oncologist from the get go.

For now, don’t worry, be happy.

P.S. This certainly has been the summer of fire here in Northern California. It all started about the first day of summer and went on for more than a month. Much of the time here in my town at the northern end of the Sacramento Valley we were nearly surrounded by fire, most of it burning in mountain forests and in brush lands. At times it looked like it would spread into the city limits, and I guess it did a little. But now that the fires are spent, for the most part, we had a close call yesterday. A fire broke out in some brush lands within the city limits and jumped a main road and spread to more brush lands and caused the evacuation of hundreds from homes and businesses and widespread power outages. We did not have to evacuate and suffered no power outage except for a split second during Hillary’s speech. The cause of the fires in the wild lands earlier was predominantly so-called dry lightening strikes. The cause of yesterday’s fire (and come to think of it there was another similar fire this morning) in under investigation, but I suspect it has something to do with transients who live in our urban wild lands… don’t know really.

A stealth cancer; almost bleeding to death…

July 24, 2008



By Tony Walther

The thing about Waldenstrom’s macroglobulinemia (WM) cancer is that you have it long before you know it and one usually doesn’t find out about it, except by accident.

My feet tingled. Yes, I was tired, and I did have a rather rapid weight loss, but I attributed the second two symptoms to the fact I was getting a lot of exercise.

But the tingling feet bothered me. At first I thought maybe it was frost bite. I had been out in the cold and snow in the mountains. But that did not really seem likely, since when I noticed the tingling it was some time since I had been in the snow. Then I thought it was the non-carpeted floor in parts of the house my wife and I had just moved into. But that did not seem likely either, since she was not experiencing a problem.

I went to my primary care doctor, the first time I had ever seen him, and he sent me to a foot doctor, but also ordered some blood tests. The foot doctor did not find anything wrong. But I think after I got the first blood tests back, someone somewhere was suspicious. They sent me for another test and shortly after that I was sent to an oncologist. I got a phone call from someone, I don’t remember who, before my second blood test and got the strong hint that cancer was suspected. That’s when my whole world changed. Earlier, when I had noticed my rapid weight loss, I had actually joked to my wife, “maybe I have cancer.” You have to ask yourself, why would someone joke about such a thing? I don’t know, believe me.

The oncologist confirmed that I had cancer. Then he informed me it was a rare and incurable, but treatable kind, WM.

One of the main giveaways in the detection was the fact that my blood was way too thick (I’m using laymen’s terms).

I’m just going off the top of my head here. I don’t have all the numbers and facts before me (something I still promise to get organized so I can write more intelligently about the subject).

But I will tell you: concurrent with all of this, I had developed a sore on the middle part and front of my upper tongue. Other than it was a little bothersome, I didn’t worry much about that. I don’t think I had been alerted to the possibility of cancer just yet, when we were having a barbecue out in the back yard. I remember, besides my wife, my oldest daughter and her family were there. I bit down onto a piece of thick, juicy, good-tasting steak, and at the same time, bit my tongue.

I got kidded a little about that. But, it started to bleed and would not stop. My wife took me to the emergency room and there I waited with a wash cloth, now soaked with blood, in my mouth. I think I waited for some time.

Over the next many weeks, this scene was repeated over and over. Usually in the middle of the night, I would go to the emergency room, bleed all over the place, often wait a long time, and finally it would stop bleeding on its own. I would be sent home, only to return another night (or day).

I even showed up to my first oncology appointment with a bloody rag in my mouth.

At night, I would wake up with a mouth and throat full of thick blood. I swallowed a lot of it, and how I kept from choking on the blood, I do not know. The worst part of it all is that no one seemed to know what to do about it.

On one visit to the emergency room, a doctor did give me a shot of epinephrine directly into my tongue and it seemed to stop the bleeding for a time, but it came back (and I am not sure that was a good thing to do, from what I have heard or read since, but I don’t know).

Eventually, a specialist I went to removed the nodule on my tongue, took a biopsy, and found it to be non-cancerous. He stitched up his work, but eventually it broke loose and the bleeding resumed. It would stop for awhile and then start again. He finally demonstrated to me the correct way to stop it. It’s difficult and really only I could do it for myself. I had to put pressure on my tongue with a finger above and thumb below, hard pressure, and hold it for at least 15 minutes, sometimes much more (once for at least two hours, and I was in a hospital bed at the time). Sometimes this worked and sometimes it didn’t (it is a good first aid technique, though).

Eventually, my oncologist did come to the rescue, by giving me IVs while I was in the hospital with something called blood factor 8. After that, I had no more problem with the tongue bleeding. I never did find out or could get anyone to say how the tongue problem was connected with my WM, but certainly it was not just a strange coincidence (now was it?). The WM literature does speak of mouth and/or gum bleeding.

I did learn this, though: It would be possible to bleed to death right there in the emergency room.

My problems and McCain’s woes…

July 22, 2008



By Tony Walther

Probably by the time most read this I will be at my oncologist’s office finding out what turn my cancer – Waldenstrom’s macroglobulinemia (WM) – is taking. I’ve been down, up, down, up, and, well I don’t recall how many of each over the year or so since I was diagnosed with it.

For some time I lived under the hope, the illusion, maybe, that I would undergo my chemotherapy and go back to work and things would be back to normal, or even better, because now I would appreciate life more.

I did go back to work, for maybe a couple of weeks or more, and then things got so bad I was back to the hospital. I got out of the hospital, but I never could get my white blood cell count to stay up, despite Nupigen shots.

I changed oncologists, as I have already mentioned. There was a communication problem.

The new one had me on Prednisone, which is a form of steroid, although I’m told that won’t help me hit home runs, not the right kind. My white cell count shot up and, let me tell you, I felt much better. But now I’m off of them (can’t stay on them forever – they’d be too expensive for one thing) and don’t feel as peppy and apparently my white cell count has gone down again.

I should know more soon and will post what I can. I found out several days ago that when I post something about cancer and more specifically WM, I get a response, much more than I do with my usual political or current events essays. But I love to do those anyway. That degree I got in political science has to be good for something, well, then again, probably not.

So, I hope anyone who has read my previous posts about my WM will tune in, so to speak, for my next post, because I should have something to report.



– Democratic presidential candidate Barack Obama gets the press because he’s doing something, John McCain. And he seems to be offering something new and you do not seem to be offering anything new.

I did think it was wrong of the New York Times, though, to accept an opinion piece from Obama and not yours (oh, I guess they said you could resubmit if you could bring it up to their standards). Maybe you should start your own personal blog. No fussy editors.

– It also seems strange to see my nightly news on TV report with a straight face that everyone seems to be covering Obama and not McCain. You’re the reporters, so tell us why you’re not covering the other half of the race for president. The old man may be dull and his attempts at humor may be wearing thin, but he is the presumptive nominee of the Republican Party, so why not just cover what he does and let the people decide? Geesh, no wonder the public distrusts the media.

A strange thing happened along about the 1980s, suddenly the electronic media, the networks at the time, found out that news did not have to be a money loser that you put on for prestige only – you could dress it up and make money off of it.

But that’s when the electronic media and even print started thinking of their news effort as putting out a “product” to sell to the public.

Once upon a time, editors ran news based on journalistic judgment (well, the good ones). But the new way is to base stories on ratings. Obamamania draws more ratings than that sleepy old guy.

And I suppose ratings are just an extension or form of politics, but it seems like a hellava way to make such momentous judgments on how to present information to help voters decide who would make a better president of the United States.

I haven’t been watching the PBS News Hour lately, but since it does not depend upon paid advertising and the ratings game, it is probably the better way to go for serious news. Their five-minute news summary covers anything you’ll likely get on the networks in 30 minutes and their in-depth reports actually go into the issues and not just the visuals or sound bites.

(I confess, though, ratings mean something. In my blog world, I do check out my hits.)

Enough said. I have a doctor’s appointment to prepare for.