What triggers MDS?
 

I understand that there are several possible causes, but is the trigger that gets it started a complete mystery? I can understand a virus as trigger for different medical problems, but this is different. Perhaps my question is an age old question that has no answer. I have always wondered if it is the same trigger that causes remission to come to an end?

Bailie,

I think that the answer to your question is that once they figure out the trigger, the disease can be cured.

Therapy-related MDS and environmental related MDS both seem to have some degree of explanation, but even here, the root cause of why some people get it and others don't is unknown. People who have been exposed to prior chemotherapy, particularly alkylating agents used with auto-transplants, and other cancer treatments have a higher rate of MDS than the general population. People who have prolonged exposure to benzene also seem to have higher rates of MDS - so this includes mechanics, fuel delivery and processing folks, and yes, even smokers. Another strongly suspected cause that is exposure to agent orange.

One other circulating theory is that there is an immune response at some time in your body that never shuts down. Swedish researchers found that people that had frequent pneumonia or bronchitis had elevated risk of MDS. I think the number they used was 6 times over their lives.

I have wondered if there were a cause and effect with the amount of functioning bone marrow which could explain why there is a correlation between loss of functioning bone marrow and increasing age. At some point in life the resistance to the disease (in less bone marrow) is overcome by the power of the environmental influences. And, maybe my thoughts make no sense :).

Chromosomes are the key (as explained to me)...

Everyone's Chromosomes deteriorate over time, and that's why MDS is considered and 'older' person's disease...

Example:
Every one has gotten ditto's in school that had been copied year after year (for decades), to the point of illegibility (can't make out everything perfectly)... basically Chromosomes are a recipe for making blood, and the recipe is like the ditto, problem is chromosomes never use the original copy, only the copy of the copy of the copy of the copy....

After many years, and who knows what (environmental, viral, bacterial, fungal infection, copier malfunction, etc...) your chromosomes can develop a tear that will be compounded with time...

I was born premature (6 months back in 1968), and I suspect that I may have had a .0000000000000000000000000000000000000000000000000000001 tear in my chromosomes at birth that was then multiplied to .0000000000000000000000000000000000000000000000000000002
.0000000000000000000000000000000000000000000000000000004
.0000000000000000000000000000000000000000000000000000008
.0000000000000000000000000000000000000000000000000000016
.0000000000000000000000000000000000000000000000000000032, etc...

after 45 years, it was at .75 or 75% of my chromosomes shot, and high risk MDS...

I was lucky that Dacogen bought me into full remission, and that my brother was a perfect match, now at day +92 and doing very well...

Thank you. That makes sense. It also ties in with the explanation given by my Dr. at Oregon Health Science University (OHSU). She explained why MDS/AML is so much more difficult than chronic myeloid leukemia (CML). There are many more variations in chromosome structures. Dr. Drucker at OHSU helped prove it was possible to shut down the mutations driving (CML) cancer without harming healthy cells.

Dan L......that is very interesting, the Swedish research, my Pal had pneumonia more than 6 times, otherwise a very healthy man, he did catch colds so very easily, & always went to his chest.....we always wonder what is the cause, I'm of the belief it is a combination......

All the best with your BMT....new birthday for you....

kate

why mds is a mysterious cancer
 

hi, my mother passed away about a year and a half ago from mds. i did alot of research into this condition and was surprised to find that it isnt lifestyle related. its still a confusing condition to learn about. i know my mother had anemia as a child, fauly chromosones might have had a helping hand, but specialists were still unsure. all i know is that the onset is pretty swift if its raeb type 2, which my mothers was.
another complication was a condition that hindered any chance of a bone marrow transplant. i remember once when she had an allergic reaction to platelets and she was left in a room for three days with staff not sure what to do for the best. there was blood on the floor and the commode wasnt cleaned. i think the staff were just scared and it was awful.
constant injections and biopsies took their toll and she looked like a pin cushion. a specialist recommended a hickman line, which was risky, but it helped my mother alot considering she was having transfusions twice a week. as for appetite, its best to try body building formulas because they have all the body needs and are loaded with calories. this helped my mother to keep her strength up when her platelets were low.
the specialists didnt object to this and at least she was getting some sustenance. and it was a half pint drink which was easy to digest, with at least 1500 calories.
alas, aml did set in and it was the worst experience of my life watching my mother die, my blood wasnt a match so i couldnt even help. you will go through a gambit of emotions, including anger and guilt. its best to make the time just to talk and just be there because it means so much in the end.
its a terrible condition and im hoping research into russian wild horses who roam around chernobyl with no ill effect will aid in the prevention of this and other cancers. to have 4 extra chromosomes seems to be the key, but only useful at the genetic level,
regards,
paul

Paul,

Thank you for telling us about your experience. I'm hope it didn't take you long to realize that MDS isn't caused by bad habits that would leave someone with the blame. The anger you felt or still feel is perfectly understandable, but you shouldn't feel guilty about your mother's illness.

Even though the onset of a diagnosable condition was fast in your mother's case, her childhood anemia is a clue that she was living with a bone marrow deficiency for most of her life. When the symptoms became severe enough she finally learned what was wrong and got the MDS-RAEB-2 diagnosis, on its way to AML.

Your mother should have had better care from the medical staff when she had an allergic reaction to a platelet transfusion. It's a common problem, there are ways to deal with it, and it's not dangerous to others. Unfortunately, caregivers (like me) rarely have much medical knowledge when their family member gets sick, and we often learn more in hindsight that we can learn in advance. It's a shame that patients should ever have to keep an eye out for poor patient care.

Even when one family's ordeal is over, another family's ordeal is just beginning, so like you I'm hoping that new research will lead to a cure, to better and better treatments, to faster recognition of the symptoms, to more knowledge about the causes, and eventually to an end to all forms of bone marrow failure disease.

Although my husband will always disagree with me, I believe his MDS was caused by his yearly use of a well known weed killer that contains Benzene.
He was in the insurance business for over 30 years so there was no exposure to chemicals there. He was not in the military and had no prior chemo treatments. His CBC was normal in March, 2008 and by Nov. all 3 lines were heading south. A couple of years after his diagnosis, there was a report in the news that named this weed killer as a potential cause of MDS. But I don't think we will ever know for sure.
I wish everyone well on the forums.
God Bless,
Sally