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MDS Myelodysplastic syndromes

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  #1  
Old Tue Dec 10, 2013, 10:21 PM
Kathy S Kathy S is offline
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Location: Leesburg, Fl
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Exclamation Camp Lejeune contaminated water

I have been researching something that I saw about contaminated Water (with Benzene) 1958-1980's.at Camp Lejeune. My husband was stationed at Camp Lejeune in 1965. We have started contacting the VA and of course all lawyers want to get involved. The admission has already been made that MDS has been determined to be a possible disease to be medically covered by the VA from the contamination along with a multitude of other diseases. Has anyone else been involved with the VA regarding this, or was anyone stationed at or born during that time at Camp Lejeune?
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Kathy,wife of 69 year old male with DX June 2013 with MDS= RAEB 2refractory with Extra Blast Very High Risk WBC 1.9-RBC 2.29-HGB 8.1-PLT 32-, as of Aug 2013:. BMB 12/4/13= WBC 5.57/RBC 4.86/HGB 15.5/HCT 42.8/RDW 49.6/PLT 188. 3% blast.BMB 4/11/14 WBC1.6,PLT12,RBC2.6,HGB9.2
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Old Wed Dec 11, 2013, 02:38 AM
Neil Cuadra Neil Cuadra is offline
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Kathy,

You'll find half a dozen threads about Camp Lejeune if you search for the word "lejeune" on the Marrowforums search page.
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Old Wed Dec 11, 2013, 07:59 PM
Kathy S Kathy S is offline
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Thank you Neil
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Kathy,wife of 69 year old male with DX June 2013 with MDS= RAEB 2refractory with Extra Blast Very High Risk WBC 1.9-RBC 2.29-HGB 8.1-PLT 32-, as of Aug 2013:. BMB 12/4/13= WBC 5.57/RBC 4.86/HGB 15.5/HCT 42.8/RDW 49.6/PLT 188. 3% blast.BMB 4/11/14 WBC1.6,PLT12,RBC2.6,HGB9.2
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Old Thu Dec 12, 2013, 07:43 PM
kgtuck kgtuck is offline
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Camp LeJeune Water Contamination Exposure

Hi Kathy, I had a very similar diagnosis as your husband 4 1/2 years ago and continue to get treated with Dacogen that have kept my counts pretty much normal ever since. I lived at LeJeune in 1961 at the age of 14, freshman at Camp LeJeune High, did everything on base - swimming pool, teen club, movies, etc. No major illnesses 3 generations back in my family. My disease was likely caused by the water contamination.

Like Neil says, there are several threads on this site and an internet site, " The Few, The Proud, The Forgotten, www.tftptf.com/" for information. You can register at that site.

So glad your husband is doing well. Is he currently taking treatments?

Take care!
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66 yr female;diag 6/09; MDS, unspecified, normal cytogenetics: blasts 10%; successful Dacogen;every 4th wk.; as of Aug.'12 changing to every 5th wk., stable at Hgb 12-14/platelets 200-300/wbc 2.-3.

Last edited by kgtuck : Thu Dec 12, 2013 at 07:54 PM. Reason: additional info
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Old Thu Dec 12, 2013, 10:33 PM
Kathy S Kathy S is offline
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Yes kgtuck he is still taking Vidaza 5 days on 3 weeks off. My husband was stationed there in 1965 and just heard about the water contamination. Happy you are doing well. Are you still on treatments and how are your BMB? Did you ever do the BMT?
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Kathy,wife of 69 year old male with DX June 2013 with MDS= RAEB 2refractory with Extra Blast Very High Risk WBC 1.9-RBC 2.29-HGB 8.1-PLT 32-, as of Aug 2013:. BMB 12/4/13= WBC 5.57/RBC 4.86/HGB 15.5/HCT 42.8/RDW 49.6/PLT 188. 3% blast.BMB 4/11/14 WBC1.6,PLT12,RBC2.6,HGB9.2
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Old Fri Dec 13, 2013, 11:16 AM
kgtuck kgtuck is offline
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Hello again!

Kathy - From my experience over the past few years, my best advice for you and your husband is to learn as much as you can about MDS in regard to making decisions re: treatment options, BMT, etc. Great site is AA/MDS - webinars (seminars over the internet) are most helpful, and of course, getting a second opinion from an MDS specialist, I'm also in a local Communities of Hope Support Group. I chose not to go for the transplant, one factor was my age, but, currently age is not as much a factor as it was at the time. I've decided to continue with the Dacogen for now (I feel absolutely wonderful and no real side effects from the treatments). It is a very personal decision that only you, family, doctors can decide.

Well wishes to your husband. I hope that I've have helped a little. I know how scarry and bewildering it can be at first!
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66 yr female;diag 6/09; MDS, unspecified, normal cytogenetics: blasts 10%; successful Dacogen;every 4th wk.; as of Aug.'12 changing to every 5th wk., stable at Hgb 12-14/platelets 200-300/wbc 2.-3.
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