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

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.

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

  1. Fionna says:

    I am ten years post diagnosis for WM – and four years since last treatment. Nose bleeds were my main sumptom – I have not had a serious nose bleed since I was first treated with PP soon after diagnosis.

    It is almost four years since I last had a course of treatment – 7 rounds of Fludarabine with Cytoxin added for the last three rounds – all taken orally.

    I do not take any regular medication and I continue to lead a fairly energetic working life which involves quite a lot of travel.

    Yes, WM is a mysterious disease, and each one of us reacts differently – but, speaking as one who has had a previous form of cancer, I know which of the two I would prefer to have! There is at least one person on the IWMF Talk List who was diagnosed more than 25 years ago! So WM is not a life sentence and, if it cannot be cured as yet, at least it can be controlled.
    With best wishes
    Fionna
    Glasgow, Scotland

  2. Pete says:

    I am a physician (non oncologist)whose brother was diagnosed with WM over 4 yrs ago. He is doing great. Asymptomatic on his 3rd type of chemo (an investigational drug called RAD001). The most important thing I can tell you is find the WM expert in your state and make the trip for a consultation. That was the key for my brother as the local oncs had very little to no experience with WM. Look his doc on the web–Steve Treon. He’s the man!

  3. larry says:

    RAD001 is not chemo. i have been on this regimen for 15 months thru the mayo clinic… it is derived from a bacteria from easter island.
    while my wife and daughter are physicians… i rely on the expert and conservative advice of the mayo clinic. a terrific place for a second opionion by world experts on waldenstroms.
    after seven years my counts are the best since dx. my hope is to be on this RAD trial for five years.
    the waldenstrom talk list is a treasure trove for all who have waldenstrom. the once a year symposium is worth a try. wm does not have to be a death sentence but an opportunity to discover new passions and adventure during our brief stay here.
    larry

  4. Debbie Paul says:

    Thank you all for your words of encouragment and wisdom, as a newly diagnosed WM patient I have so many questions and feel my doctor is too busy to answer them all. I am currently on the watch and wait status. My IgM level is high but, not extremely high. He said once the level is 5g we will discuss starting treatment. (Rituxan). My IgG and IgA are both low. My bloodwork all looks good right now except for these #’s. Where would you go for more info. Thank you guys for all you do and God Bless. Debbie

    • Hi Debbie, I was diagnosed 3 years ago and have had chemo twice as well as pp and wait & see.There are v. good Dr,s out there, example Dr. Gladstone at Johns Hopkins in Baltmore Md. Keep faith,stay active NEVER give up. Mike, Age 72, Central Pa.

  5. David Winn says:

    Hi Debbie, I was just Diagnosed in September 2010 on My 50th B-Day. I live in Chicago and my oncologist has never had a case of WM before. I’ve read non-stop about this disease since diagnoses. I start a tral of P.P. Monday.

    I would recommend going to Boston. Set up an appt. with DR. Steve Treon at Dana-Farber. Also for reading, Google “How I Treat Waldenstom’s Macroglobulnemia”

    Lots of information out there.

    Dave

    • Sharon Thompsen says:

      Hi Debbie and Dave, I was just diagnosed yesterday with WM. And I too have been reading as much as I can find on it. My chief complaint was my total fatigue. I feel so blessed that I found a doctor who could find why I was so tired. I will be doing chemo within the next week because with everything I have read, it looks like there is no other choice. I hope you are both doing fine. Sharon

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