MDS Patient Commonalities

[Patsi]

This is my first post. I was diagnosed with MDS -5q 16 months ago. I was very fortunate that just weeks after I was diagnosed the FDA approved Revlimid. I was put immediately on the Rev-Assist program. The side effects have been low WBC and low platelets. My WBC is up now and the platelets, which are always low, are not dangerously so. I grew up in Iowa in the midst of chemical run off in the water. Our water was always suspect, they would just lower the standards if it got to a place where it wasn’t meeting the safety standards. My sister died of a myeloprolific disorder 10 years ago.

[sugarwhale]

We think we know EXACTLY what caused my mom’s MDS: an OVERdose of radiation for breast cancer 30 years ago. At the time the doctor gave the same dosages of radiation to his patients that were given similar patients at M.D.Anderson Hospital in Houston. However, Houston is sea level; we’re over a mile high. The dosage should have been cut in HALF! Many of these patients died. We could write a book! In addition to the overdose of radiation, my mom’s dad died of acute leukemia at the age of 82. He worked around benzene. A survey would be very interesting. I just wanted to add radiation to the list!
~~~ Janet

[choijk]

My dad was dx with MDS early this year in Jan and he smoked up until that time. He began smoking at an early age at 15 or so and did until he was 71. He also has really bad eating habits as he loves salt, sugar, and all those processed foods such as sausages, canned fruits, etc. Also, last year, my dad’s work schedule was from 3p.m. to 3 a.m. He led an unhealthy lifestyle and I’m trying to incorporate fish, vegetables, and fruits into his diet but it’s been hard.

[Kaleen]

My Dad was in Heavy Construction. He was exposed to all sorts of paints, adhesives, etc. I really think that it is definitely benzene related. He smoked also, and that made for even more exposure.

[shellbivens]

Benzene is a KNOWN carcinogenic. It is the ONLY known chemical to cause MDS. MDS wa formerly know as “preleukemia”. Zylene and benzene exposure has been associated with mds.
In the 19th and early 20th centuries, benzene was used as an after shave lotion, and for douches because of its pleasant smell. Prior to the 1920s, benzene was frequently used as an industrial solvent, especially for degreasing metal. As its toxicity became obvious, benzene was supplanted by other solvents.
In 1903m Ludwig Roselius popularized the use of benzene to decafeinate coffee. This discovery lead to the production of SANKA (the letters “ka” in the brand name stand for kaffein). This process was later discontinued.

Funny what you can find when you research…

[chuckk333]

I commuted on the LA freeways from 1-1/2 to 2 Hr/day for almost 40 yrs. Maybe all that traffic pollution discharge contributed.

Chuck

[Lizy]

What about the possibility of Radon wxposure(even though it is removed, and a ventilated system is installed the house?) We are moving to Colorado and they live with this type of stuff, however Colorado is known to be one of the healthest states in the country where people live long, as well.

[patti]

Lizy,

This is an interesting question. My in-laws lived in Philly for 60+ years in a home that was 200+yrs old. My FIL had lymphoma twice between the ages of 45 and 55. When they moved they had their home radon tested and it tested positive for too much so they had to have it fixed before they could move here. Ten years later, my MIL was dx with MDS which we believe was allowed to proliferate because of the stress of taking care of my FIL who had Alzheimers for two years (she kept him at home the whole time). Both disorders are blood diseases and the only commonality we could find was possibly the radon in their home in Philly. We’re figuring it didn’t affect my MIL until much later because she was so healthy her body was able to fight off the bad cells for a long time. But once she underwent the two horrendous years of stress her body got weaker because of the stress and the leukemic cells kicked in.

Regardless of if we “know” the cause or not, chemicals are known to damage the body in many ways. So I would say if there’s a chance you’re dealing with radon, taking care of it is a “better safe then sorry scenario.” It sounds like that’s been done with the ventilation system, etc. Perhaps have the house retested if you’re concerned and not sure?

Just my .02 worth.

Patti

[shellbivens]

Up until 1 year ago, my dad worked as a printer in a paper box factory for 27 years. He was not only exposed to, but periodically “hosed down” with some pretty nasty chemicals to clean him up before coming home. I can still recall the retched smell of chemicals from his clothes as mom sprayed him down with the water hose when he got home. At no time was anyone ever even offered PPE while working in this environment. To this day, I don’t think any of the workers are using PPE.

[jaxem]

my wife was given chemo propylactically following breast cancer surgery. almost 5 years to the day mds came. ironically, chemo is given to beat back the blast cells. we’re living in the stone age when it comes to fighting cancer.

[BETTE BOOP]

HI EVERYONE, I HAVE ALWAYS BEEN BLESSED WITH GOOD HEALTH UNTIL I HAD BREAST CANCER AND HAD RADIATION FOR 30 DAYS AND I FEEL SURE IN MY MIND THAT IS HOW I DEVELOPED MDS. BUMPS IN LIFE

BETTE BOOP

[Mary4Mike]

Hello Everyone,

I had to add my husband’s “exposure experiences” to the rest of yours. He was a jet engine mechanic in the service for 3 years which also exposed him to jet engine fuel. He was a hands on owner of 3 ready mix concrete plants for 20 years. This gave him daily exposure to diesel fuel, degreasing solvents, additives, etc. He also raced stock cars for several years which gave him exposure to racing fuel, fumes, etc. He received a severe gas/fire burn to his hand in a racing accident. I understand that benzene is also found in moth balls and now it has come out in the news that it is in soda pop!

The doctor’s don’t seem that interested in the “why or how” of this desease’s trigger point, BUT if it could prevent future MDS patients, you would think they would be asking more questions!

I also had a cousin who passed away from MDS (rather commplications from a SCT) a few years ago. She got it from the radiation treatments she received for colon cancer a few years prior.

Please add our info to your survey.

[annie-anne]

I was married to a man who smoked apipe heavily for 35 years then dated a man who smoked two packs per day, I really think that the benzene and other carcinogens in smoking products are a causal effect in MDS. Would love to complete a survey… did ask my Dr. who is following MD Anderson treatment protocols, if anyone was collecting data, he said yes, but I have never
completed any forms for him.

——————

Annie -Anne
Annie-Anne …Female, age 73,diagnosed,2001,MDS-RA 5q-9. ….Bloodwork periodically, OK until Oct. 2006, when hbg decreased,WBC down, and was treated withpacked cells and aranesp. Jan07 BMB showed inc. blasts and Dr. @ Vanderbilt put me on Dacogen immediately.Rx is 5 days Dacogen, and 21 days off. 7 mos. later, with a few bumps in the road, I’m doing pretty well, and tolerating Dacogen very well, still have some BM Dysplasia (from last BMB,July 07, ) but other bl. work excellent. Dacogen a lifesaver. Good luck to all out there with this roller-coaster disease that seems different with everyone.

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