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

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.

About these ads

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

  1. Brenda says:

    I happened upon your blog while looking for information on my husband’s cancer. He has the same thing and I just wanted to add a bit of hope for you. He was diagnosed with WM in 2000 and he will be 81 this year. Life is not easy but he is still alive and kicking, drinking a beer or two a day and enjoying football.

  2. Kayleen says:

    Hi, I was diagnosed with WM mid 2012 and have just come across your blog. I’m a rare case, I was diagnosed at 44 after having a baby, I have just finished chemotherapy and will go back to have more tests done in late March to see how things have gone. I pretty much just get on with things, I have pain etc, get tired, but really, with a young child and family to look after, I have no time to be sick. I think in my case that is a good thing because most of the time I don’t think about the disease at all. I just get on with things.

    I found your blog really informative and I can relate to a lot of things. Thanks for sharing.

  3. Cathy Santerre says:

    Hi, My oldest sister was diagnosed about 8 years ago and is doing great. She tried a couple rounds of Rituxan early on but had reactions. Has done well since without treatment. Just this week my two other sisters were diagnosed with WM. I go to MD Anderson in three weeks to see if I am the 4th. Hang in there and if you aren’t a member of the International Talk List Forum, there’s a wealth of opportunity there.

    • Kayleen says:

      As far as I know I’m the only one in my family to have WM. I had chemo and Antibodies, which I think was the Rituxan, I had a reaction each time, but they just gave me hydra cortozone and something else to counter the reaction. I got through it. It wasn’t pleasant, but it wasn’t as bad as I thought it would be. I will look into the International Talk List Forum. Thanks for the information. :-)

  4. Johanna says:

    Hi there, thank you for your blog, It is very encouraging and I did find it by googling about WM. My father went through his first round of a chemo combinationbut he has not responded positively to this and his iron levels are low again also. He will be starting another 12 week round of a chemo combination. Keep up the positive blog.

  5. Stem cell transplant or not? My mother, 62 years old, was diagnosed with non-hodgkins lymphoma in 2010 and put in remission. Symptoms came again in July/August of this year. This time she visited MD Anderson and the doctors diagnosed her with WM. She has gone through several months of chemo and now they are telling her she needs a stem cell transplant. I’m trying to do research to find out if that is the best option.

    • Tony Walther says:

      I would not even attempt to give medical advice, but as someone with WM, in remission at this time they tell me, I can only say from my own experience the patient must know how he or she feels and keep informed (something I admit I have not done a real good job at) and think about one’s own age and so on — I once read a doctor’s advice that indicated too much treatment is not always a good idea. But that is not medical advice from me. Okay, I’ll add this: My doctor wanted to start me on chemo again at one point and I declined. I feel better than ever now. But every case is different. And I have probably said too much.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Follow

Get every new post delivered to your Inbox.

Join 32 other followers

%d bloggers like this: