MDS more common than previously thought

[Birgitta-A]

Hi all,
MDS are nearly five times more common in seniors than previously thought
http://checkorphan.getreelhealth.com...iously-thought
Kind regards
Birgitta-A

[knstone]

This is an interesting report. The prevous reported cases always seemed low and many doctors thought the number of MDS patients was higher.
This data seems to confirm that MDS is more prevalent.

Thanks for you continued great research on MDS.

Thanks,

[Neil Cuadra]

The number of diagnosed MDS patients identified by the study is alarming and so are the higher incidences of other conditions among MDS patients.

According to their findings, based on data from 2003:

Within 3 years of diagnosis    % Medicare patients  % MDS patients
-----------------------------  -------------------  --------------
heart attack                         54.5%               73%
diabetes                             33.1%               40%
shortness of breath (dyspnea)        28.5%               49.4%
liver disease                         0.2%                0.8%
blood infection (sepsis)              6.1%               22.5%
3-year survival                      84.7%               60%

However, 2003 was before MDS was routinely treated with drugs like Vidaza, Dacogen, and Revlimid. It's a reminder of just how important the development of these drugs has been to the patient population.

[Ray V]

I have always wondered if these reports measure effects, causes, or things that may have a related unmeasured cause. For example, is there something about the autoimmune response in diabetes that also is involved in a disposition to MDS?

Also, I wonder just how many people are walking around and are asymptomatic and thus not getting a diagnoses. In other words we may only be sampling from one end of the bell curve of patients and thus biasing the results. The real number of patients may be far higher than this report indicates and a great many of them may never develop symptoms or have a bone marrow test done and continue to lead otherwise normal lives.

[Birgitta-A]

Hi Ray,
You are probably right about a higher number of patients with MDS - many patients get their dx several years after the disease. At dx my HGB was 70 and my platelets 65 - it takes years before you get so low counts and I could have got some other serious fatal disease during these years without anybody suspecting MDS.

A proportion of patients with RA have a positive response when they get ATG and these patients are supposed to have an autoimmune disease. Their prognosis is sometimes very good.
Kind regards
Birgitta-A

[Ray V]

Birgitta-A,

Yes I think so.

But there might also be another issue here. If many have MDS and are not diagnosed and survive for many years without any treatment, could the current methodology be flawed to the point where it might not be helping those who are under treatment to the degree it ought?

There are a lot of doctors that live in my community and many tell me that they have hoards of older patients who present with mild anemia and leukopenia for decades. I have for 5 years now and it was only my insistence on "getting to the bottom of this" that had me undergo a series of tests thought otherwise unnecessary by both my GP and my consulting hematologist/oncologist at a major Cancer center. I am otherwise asymptomatic and have had two bone marrow tests with differing results as to the type and degree of MDS and recommended treatments of choice. I will repeat a bone marrow test next month and compare it's results with the other two.

[Birgitta-A]

Hi Ray,
I am afraid that I don't understand the sentence "could the current methodology be flawed to the point where it might not be helping those who are under treatment to the degree it ought". You know English is not my first language.
Kind regards
Birgitta-A

[lotusbud]

It sounds interesting.
Me too, had I not insisted in the beginning nothing would have happened. Well the hemo would and still is watching me.
But since my blood values are good enough even with my suspected MDS, then does it really matter? Except of course things may be happening in the bone marrow they will not see in the peripheral blood, immediately. I have been told a lot things along the years by doctors. One was, that with good steady life I should not be suffering. Well I did a lot things and exposed to things.
But perhaps there are many like me, with indolent smoldering disorder. But then, what does it mean?

[Ray V]

Birgitta-A and lotusbud -

What does it mean? In my case I have received three different treatment recommendations from two specialists at two leading cancer centers (top 25 listed centers). But I also know a number of doctors interested in the problem. If I am asymptomatic and my blood tests show only mild anemia the question becomes do I proceed with any treatment or do I wait for a drop in the blood count or symptoms to appear? Clearly treatment will have some negative affects but might prevent an unrecoverable decline that could happen if I wait. Yet there is little evidence that early treatment (pre-symptomatic) effects the end results. The statistics that we have are largely from those that are symptomatic. Thus when I said "could the current methodology be flawed to the point where it might not be helping those who are under treatment to the degree it ought" I mean (basically) two things. First, those who are asymptomatic may be directed to early treatment that might be unnecessary or unwarranted or might cause more discomfort earlier with no, or little prolongation of life. Secondly the question remains with some in the medical community about if the treatment results do differ between early pre-symptomatic treatment and later treatment, with some holding that the side effects and potential risks of early treatment may shorten both the length and quality of life.

Think of the classic bell curve. We likely are only sampling those on one side of the slope as many (most?) without overt symptoms are not being measured. So if our treatment methodologies are based on our sampling, our evaluation of the results of treatment are invalid if projected on those towards, or on, the other side of the bell curve and equally, but oppositely, invalid for those diagnosed. The end result is that a patient evaluating treatment and treatment options may not be dealing with valid end result estimates. In one case they will appear worse than they actually are and in another better.

Now I recognize that we can only have so much precision, but ask most General Practitioners if they have older patients who have been running anemic and if they routinely refer them for further diagnoses. I have found most I have asked do not do that. And most older patients continue to lead health and active lives for quite some time.

All of this simply means that we, as patients or friends of patients, need to be aware of the inherent limits of science and to understand that treatment results for a drug may include the results for people who might not have needed the drug to improve, and for some that have had adverse results to the drugs, which are not benign. None of this is to reject valid treatments or to suggest that someone delay treatment when medically necessary. Determining that point is always a private and personal decision that I will never second guess for anyone. But it does make an informed decision a bit more difficult.

[Birgitta-A]

Hi Ray,
I agree with you about our knowledge about treatment from patients with serious symptoms but actually many patients are told to wait and control the counts for years.

Other patients with symptoms agree to treatment that only have had positive effects for less than 30% of the patients. That is very brave but I should never try a drug that will give more than 70% of the patients adverse reaction and no positive effects.

As you perhaps have read I only accept supportive therapy (RBCs, Desferal, Exjade and Neupogen) because I prefer living asymptomatic as I do now but I am 71 yo. The situation is very different for younger persons.

Hope your counts will be OK for a very long time !
Kind regards
Birgitta-A

[Ray V]

And the same for you.

Right now, despite leading experts telling me I ought start immediately with Vidaza (after having told me I ought start soon on lenalidomide based on the first bone marrow results), they cannot tell me why -- that is, what the difference in outcome likely will be versus waiting till the blood counts drop or I show ANY symptoms.

So my plan is to try a bunch of alternative things that do no harm and wait a bit for a third bone marrow reading while having blood labs done every second week. I just outworked people half my age (62) and have no fatigue or energy problems and no healing problems (even being a 40+ year type 1 diabetic), I think that I have a bit of time to review and carefully consider options.

While I support aggressive treatment where needed, I see no personal or scientific evidence for that now. Of course I will always consider new scientific evidence and I am quite in tune with my body and have usually picked up on problems before my doctors. My slightly low blood count (which is actually improving) was something I did not pick up on and therefor went through all the test everyone (generalist and specialist) told me were really not necessary.

None of this should encourage anyone with symptoms or significantly low blood counts from getting aggressive treatment soon. But I, personally, find it wise to make a more informed decision to consult with someone who holds differing views on the fundamentals of the treatment methods generally used.

[Birgitta-A]

Hi Ray,
You know Revlimid is not approved for MDS in EU because there might be a small increased risk for AML especially in the non-responders.
http://www.ema.europa.eu/humandocs/P...29408908en.pdf

Revlimid is OK for patients with the 5q- chromosome aberration and 75% of them have a very good response. I have read about patients who were free from symptoms more than 5 years when they got Revlimid.

Then a proportion of the RA paients have a positive respons to ATG treatment - som of these patients are free from symptoms during many years and seem to be much like AA patients.

The reseachers will perhaps find other groups of MDS who will respond to a special treatment.

Then we ought to know more about the best dosing - lower doses for longer time is perhaps better that short treatment during 3, 5 or 7 days in a 28 day period. Patients with CML take Gleevec every day and patients with Myeloma take Revlimid every day.

You will hopefully be able to "review and carefully consider options" during many years!
Kind regards
Birgitta-A

[lotusbud]

Hello Ray,
happened to read this and thought about you :
"Conclusion
An important part of the Hippocratic oath is this: First, do no harm. MDS is a puzzling, life-threatening set of disorders for which there are no easy cures or quick remedies. Treatment consists largely of supportive care. Relatively aggressive therapies such as chemotherapy and bone marrow transplantation can sometimes do more harm than good. But not all patients die from MDS. It is incumbent upon both patient and physician to be cautious in considering the level and type of treatment provided. Whatever path is ultimately chosen, above all it should reflect the patient’s preferences."
http://www.neutropenia.ca/research/mds.html

I like your bell curve thing. Also remembering, that treatment for MDS is fairly new, considering that the disease can last a while. Some 15 years ago, the only reference I found in a hematology textbook was "refractory anemia" (for macrocytosis), which generally had a poor prognosis (whatever that really meant) but a few could survive even for decades.
We have gone a long way from that, today. Even so, it seems many of these treatments are brand new!
So consequently there is little data to draw from... for statistical purposes.
Said that, I still believe that a good doctor can spot some particular "signs" in the patient, which would indicate which way the treatment should go. Of course, taking into consideration the doctor's general philosophy..
Like a doctor, who wants to give me a drug that may treat vertigo but causes dizziness so severe that I could not work with that drug! Meanwhile the drug will not cure anything.
Well anyway you know yourself, and you are safeguarded by the frequent CBC tests.
Take care

[Ray V]

Thank you, lotusbud, for your comments. Of course medical science deals in statistics and treatment protocols but we are individuals. In something such as Traditional Chinese Medicine, five people with what Western Medicine would call the same disease would have five different treatments because they are treating the whole person. Western medicine treats individual diseases. It is what modern science requires it to do. Double blind studies can never be used to validate, or invalidate TCM treatments for this very reason. Each form of medicine has it's strengths and each approach to science has it's merits.

We must remember that Francis Bacon invented Modern Science based on a series of assumptions that Modern Science itself cannot prove. We have to admit the power of modern science, but it is not the only way of seeing nature or science or medicine. Still the advances made possible by modern medical science are remarkable, but, as you point out, even within it's limits we are are on unsure ground for many treatment protocols, much less for what is right for any specific individual.

In 1971 I had what was then called aplastic anemia. The best any doctor gave me was a 50-50 chance of survival, but as an aunt of mine, who was also a physician, pointed out, my chances of survival were 100% or zero. MDS presents of the alternative of possible prolongation of life, and with that, the hope that modern medical science will develop greater knowledge and experience during that time.

I still wonder just how many cases there might be of spontaneous remission or of never to be diagnosed MDS that does not cause premature death. None of that is to take lightly the problem of really bad bone marrow results or of declining blood counts.

[Ray V]

Well my first BM done locally and by Quest showed 9% blast count. My next one done at Dana Farber showed 12% and my latest done at Dartmouth Hitchcock showed a preliminary of less than 5%. I am on Linus Pauling's absurdly high vitamin regimen and taking some really potent Chinese herbs from a formula a Grandmaster in China e-mailed me (well, at least they will not harm me till I decide on other treatment.) I see the Docs today and am wondering what they will say now. From the first two I wound up with three different recommended treatments. I expect to end up with an additional two new recommendations. The frustrating thing is Western medicine cannot get a diagnoses. At least I know enough about the methodology of modern medicine to insist on confirming tests before getting treatment. The good news is that I remain asymptomatic.

Ray

Saw the Docs at Dana Farber and by blood count was up. WBC has gone from 2.3 to 3.4 with rises in hemoglobin and hematocrit, but the RBC remains the same. Their conclusion is that I have an auto-imune abnormality that periodically attacks my bone marrow (I had aplastic anemia in 1971 but recovered too rapidly for it to have been from the medications). The guys at DF told em that there have been cases where they see a relationship between MDS and arthritis such that when meds help the one the patient shows and improvement in the other. The current plan is for monthly blood tests and semi-annual bone marrow tests. Meanwhile I am looking for a way to check my auto-imune system. Given that I have been a type 1 diabetic since 1967, there is an added reason to believe there are fundamental auto-imune issues lurking in the background.

Ray