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.

P.s.

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.


Thanksgiving for cancer support and prayers…

November 27, 2008

(Copyright 2008)

The WALTHER REPORT

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)

The WALTHER REPORT

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.


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.”

 




Life goes on with cancer….

July 19, 2008

(copyright)

The WALTHER REPORT

By Tony Walther

It’s about two days after I was told that apparently the chemo I had over the past year did not do the job it was supposed to do on my cancer. In fact, it may have actually caused me a problem that I did not have before, which is not to say that it did not save my life for the time being. I don’t know.

And that’s really the whole problem. I don’t know. I changed oncologists because the first one was never terribly communicative and it finally got to the point where he quit communicating with me or berated me for not knowing something he claimed (and maybe did) tell me at one time or another.

I wrote this once before. But I say again:

When you are diagnosed with some life threatening disease or condition, get a second opinion and learn as much as you can yourself. Now, of course, in the end, you have to trust most of the treatment to doctors, but at least you know what is going on and can maybe spot something that may be wrong or not to your liking.

Study up on your disease and ask your doctor or doctors questions, lots of questions. If they can’t answer them or seem resistant, maybe you need better doctors. In my opinion, doctors have no right to refuse or discourage their patients from being inquisitive. Of course it is your responsibility to listen to the doctor and to learn on your own a well, so you do not waste his or her time or the time they need to devote to others.

Doctors and all in the medical profession are only human and you soon find out you are not the only one on their mind. They get in a hurry and sometimes they make mistakes or misjudgments. And I am not accusing anyone of anything. I’m just reminding everyone that as skillful and learned as these people may be, they are human and not infallible.

So now I am in super limbo. I don’t know where I stand and don’t know how to proceed with a life that could go on for a long time, or not.

Much of what I have advised here I did not totally practice myself. I have learned some of this the hard way. I was so devastated when I got my first diagnosis somewhat over a year ago, that I just kind of blindly went through the motions and did what I was told. My wife has done more research on my disease than I, much, much more.

As I mentioned in my previous post, I have Waldenstrom’s macroglobulinemia or WM for short.

It’s treatable, but incurable.

You’re probably thinking, well, so how long did they say your life span will be? They haven’t directly. And I’m not going into it now. I have to do more of my own research anyway. But I am supposed to get more information about my current condition in an appointment next week.

And before I forget, I received several comments and e-mails from total strangers about my WM and they were reassuring. I thanked the authors of those messages, but I want to thank them again and let anyone know that if they get into a similar predicament, there is help, hope, and inspiration out there…..

– I live in the northern end of the Sacramento Valley of California. In a recent post I said that the smoke from the fires was not so bad for the time being – it’s back, the smoke, big time. It’s even getting kind of scary. While I don’t believe we are in any danger from the flames here, that smoke is getting intense. All that we have breathed in over the past several weeks can’t be good. For those who have lung or breathing problems already, it is especially bad.

And when you’re suffering from fear of the unknown as I am, this smoke just seems to magnify the feeling of doom (and since I first wrote this, weather conditions have lifted some of the smoke, but it’s kind of a minute-to-minute situation. And the fires are still burning).

Meanwhile, I still have my loving wife and my family and my oldest daughter is coming to visit today. Life goes on.

Postscript:

I want to make it clear that I have appreciated all of the medical help that I have received thus far, all the way from the folks who tidy up the hospital rooms to the nurses to the doctors. While I mentioned that I changed oncologists, I did not mean to suggest anything other than at the time I felt more comfortable doing that.