MDS Patient Commonalities
January 23, 2007 at 10:58 pm #16813
I am a newly registered member to this forum, and new to forums in general, and I want to know if anyone has looked at similarities among people with MDS. For example, my husband (RAEB) has psoriasis and used coal tar shampoo 2x/week for 30-40 years; he also has severe gum disease; he developed tinnitus (or some noise-producing problem in his head) about two years ago; he slept inches away from a clock radio for decades; he worked in a computer room filled with computer servers just feet away for 5 years; he devloped precancerous skin lesions a few years ago, etc., etc. Has anyone looked at these potential commalities to try to determine simiarities? I just wondered because MDS is not inherited/genetic, so wondered if there are common factors. Has anyone posted something like this to the entire forum to answer? Thanks.January 23, 2007 at 11:18 pm #16814J.claireMember
What a good idea! Maybe we could come up with a sort of checklist of things that people with mds have experienced that we wonder if could have been a part of developing this disease. I used to walk to work every day through this mist that was put out by a factory where they coated paper using tolulene, which is similar to nail polish remover. They always said that the amount in air was not toxic, but I always wondered because you could smell and feel it.January 24, 2007 at 12:03 am #16815
Thanks for your comment. I had read that benzene can possibly trigger MDS, and that it is obtained chiefly from coal tar. Our hemotologist did not seem to know that. I believe I read it on the MDS-Foundation web site. Nevertheless, I would like to do whatever I can to help eradicate this dread disease and if providing info is one way, then great. Our doctors never asked us if we wanted to participate in any studies to determine origin of MDS. I wonder why not and I wonder if they exist. Keep up the hope!January 24, 2007 at 2:47 am #16816betyMember
My husband, Ed, had nearly 150 precancerous skin lesions removed (only 2 proved to be cancerous). Our new dermatologist, who is very competent, felt that most of them did not require surgery. Ed also had contact with x-ray diffraction machines for several years, which may have had a leakage problem. All the best, bety
Dx 7/03 Mds RA, cytopenia, very low counts, tx dependent.January 24, 2007 at 6:57 am #16817jga_socalMember
Scary when you think about it. Our lives are filled with chemicals in various forms. I’d like to get a complete profile of everyone with an incurable disease. I mean, down to the toothpaste they use, the air they breath, the content of the clothes they wear, proximity to electronics, powerlines, diet, anything they put on their skin, etc…
If you have enough data and analyze it, patterns *may* emerge… but they may not… 🙁 The thing is, getting the data to find out. Fortunately the web provides a wonderful place to collect data from people. I’m a techie guy with mds one year now. I also have Tinnitus, a high pitched hissing in the ears. It can be very bothersome and distracting, especially in quiet times. It’s estimated that 30million people has Tinnitus. Severe Tinnitus can drive the sufferer crazy. No one really knows what mechanism causes the sounds. So, I’ve been thinking about this symptom/journal/database thing for a couple years. I created a website http://www.t-journal.org. You can read some of my ideas on the website. The concept of building a community health database can apply to *any* incurable disease or condition (tinnitus is considered a condition not a disease). I believe there may be answers to help relieve, treat, and even cure various ailments. The answers lie in our ‘collective’ intelligence, our collective experiences. If people contributed their experiences in an intelligent manner (a web site?), the data could be ‘crunched’ to look for commonalities, etc…
In my research I found a website that has a fairly robust health survey along the lines of what I’m thinking. The results of the survey, I’m pretty sure, are not analyzed for commonalities between different respondents. The website simply gives you your results. But who knows? I’ve never paid for the survey. It’s only $25. The website is http://www.diagnose-me.com. You can look at all the survey questions here http://www.diagnose-me.com/faq-q.html
My plan for t-journal.org is to basically host a whole slew of surveys. The survey questions would start with the basics. But here’s the thing: website members would be able to contribute their own survey questions. So you’d end up with surveys created by the survey takers. I think survey takers are the best ones to know what questions to ask, Don’t you?
Well, this is no longer a short post. I’m trying to turn over a new leaf… Gotta go.
JimJanuary 25, 2007 at 12:37 am #16818
Had a little time to go to your web site – looked nice! Thanks for sharing so many thoughts.January 25, 2007 at 2:05 am #16819MaryvillepatMember
My husband worked for an airline, so was around jet fuel for years and years. He also used and still uses a gas chain saw to chop wood. So far the Revlimid has not kicked in, but he got good results from Thalimid and Vidaza. His hgt is his main problem, although his cbc last week revealed all time low in platelets. His health was always excellent, and, remarkably, still is, but he is depressed lately because the Revlimid isn’t working.January 25, 2007 at 7:12 am #16820JSRNMember
My mom worked with my dad who owned a printing business. So she was around numerous chemicals, for many years. She also was in a car accident that killed my dad. She spent 3 months in the hospital and for about 2 months, received daily x-rays. She took DES, a hormone while pregnant with me and my brother. That has been found to increase breast cancer, which she had in 1989. She never took any chemotherapy but did take Tamoxofin for 7 years.
Her brother died of leukemia and I recall he was told he had a preleukemia. This was all before MDS was really known. After he died a group of people he worked with asked my aunt to go in on a class action suit as most of the employees where he worked developed leukemia. He worked for an elevator company, repairing them, also working with many chemicals.
It would be nice if they could come up with a link to this d@mn disease. Nicer if they found a drug that really worked!January 25, 2007 at 8:21 pm #16821maueenhParticipant
My father also worked for an airline and was around jet fuel for years.January 25, 2007 at 8:47 pm #16822BinnieMember
My husband was a skilled glassblower for 34 years and worked around many chemicals including arsenic, however, I believe the real culprit was radiation emissions from a nuclear plant a few miles away from the little town he grew up in. The factory shut down in the late 6o’s, but the town has since filed a class action suit because the cancer rate is 3 times the average, hitting most people in their 50’s and 60’s.January 25, 2007 at 9:38 pm #16823camiboxerMember
My dad (RARS) was a truck driver (semi’s) for 30 years. Around diesel fuel daily.January 26, 2007 at 2:24 am #16824pattiMember
MDS is nearly always environmentally caused by chemicals of some sort. That said, my MIL has NEVER been exposed to anything like that except for one very remote possibility. There home in Philly was tested when they sold it and told the radon levels were extremely high. My FIL had NHL twice while living in that house. Mom showed up with MDS only after moving out west. Both blood diseases. I’m guessing her body did a good job fighting whatever damage the radon did until she took care of my FIL with Alzheimers until he died. Most people do not do that anymore and the stress on her was more then her body could handle thus allowing the MDS to kick in.
Again – chemical caused. As for why they don’t have a cure here’s a good reason……
This fried my gizzard because I know it’s true. It all comes down to how much money pharma can make on a drug.
pattiJanuary 28, 2007 at 4:32 am #16825campbellMember
My husband also worked around paint in his early years.. lead paint in barges…….. and later worked around jets for 20 years. What are the thoughts about this disease being inherited. His mom lived to 93 and in laters years occasionally recieved TX and also his aunt is doing same now.January 30, 2007 at 7:07 pm #16826
Interesting post from patti about cancer cure (newscientist.com)! Campbell, I don’t know about inheriting the disease – everything I’ve read (and I’m sure I haven’t read it all) says it’s not genetic/inherited, but who really knows…If your husband was around jets, was he around jet fuel (there’s the benzene connection)?January 31, 2007 at 2:33 am #16827Kathy GMember
My father owned a Chevron station and was around benzene for 30 years – I am convinced that is what caused his disease but we’ll never know. He has NHL (T-cell lymphoma) and MDS it was awful for him. I worry since my brothers and myself worked in the business over the years that one of us will develop the disease.
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