Dad Had MDS ,Now Mom Does

[tsj]

Hi again, just wondering if there is anyone on this forum that has had two members of their immediate family having MDS? You know this being our second time around you would think I would know more about what to expect with my Mom, its just that my Dad got sick so fast and died so quickly. At the same time my Mom has so many other illnesses it is hard to believe that she would survive many bouts with infection. My Dad had serious infections and bleeding are those symptoms common? Any insight would be welcome. Teri

[Neil]

Hi Teri,
It is very unusual for two people in a family to have MDS. Current thinking is they both were exposed to the same chemicals (such as benzene), since they were spending much of their time in the same environment. Another possibility is if they were both treated with chemo an/or radiation.
Infections are common with those with low white counts, particularly low neutrophils. Bleeding is a result of low platelets. It is also possible that white counts and platelets are not critically low, but an increase in the cloning of their cells produces more and more abnormal cells that do not function properly.
There could be other more obscure reasons, but think these would be the most likely.
All MDS patients are different. We all respond differently to the disease and to treatments. There is every hope that your mom will survive much longer than your dad. The number of variations in the disease make it difficult to develop a prognosis based on other patients.
I have a low white count (around 1.2, neuts around 1.0) but do not have and issues with infections. Had 4 colds in 8 1/2 years. My platelet count is in the 10,000 range. no bleeding issues I have not been able to handle myself. Had 2 platelet tx when I had surgery. They kept my count up till I healed.
All 3 of my cell lines are cloning, producing tons of abnormal cells that get identified, killed and flushed in a normal manner. BUT I still have enough normal cell production to keep me going without too much difficulty.
Have been on Procrit for 2 years and have ben doing well. Had to increase dosage twice to keep RBC/HGB up but by and large it works well for me. At some point it will quit. At that time the plan is to switch to Aranesp—unless Revlimid is approved and available.
My doc has not tried anything radical. He will not give me a drug that will make me feel worse than the disease. It has worked to this point. I have been very fortunate compared to others who have a higher risk level.
Hope I could provide a bit if insight.

[tsj]

Neil, Thank you for responding, your information is helpful. My parents never had radiation/chemo and were divorced for 30 years before my Dad became ill, so I certainly have felt some concern that there could have been an enviornmental exposure…..it seems somehow overwhelming and yet pointless at the same time to even consider the ramifications. I guess what I was hoping for and that you have indeed provided is hope that my Mom may have a better outcome than my Dad did. In view of how quickly and unexpectedly we lost my Dad it was devastating to learn of my Mothers’ diagnosis. Again thank you.
Sincerely,
Teri

[Sandy M]

hello….and welcome, I bet you wanted to drop to your knees with news of this type, wondering…why ?
well, there’s a forum member on this forum, her name is Marie, I met her when I joined this forum …her husbands name was Walt and her signin name is…waldens wife, she not only lost her husband, but her son a short time later to the same illness, benezene exposure and being exposed to chemicles or pesticides , and even from agent orange…
there’s lots of friendly hugs being sent your way from cali.

[tsj]

Sandy, Thank you for your kind words. Does Marie still visit this forum? What an unbelievable loss, a husband and a son. I can’t imagine. Teri

[Sandy M]

Yes Teri,
Marie does pop in once in awhile, I hope she see’s your post, she believes the common factor in her loss’s were do to benzene exposure.
My fiance, Joe, was exposed to benzene among other things, he was not able to pin-point one certain cause, he was in viet-nam, and had also worked with many chemicles throughout his whole life ….. If you look back into the archived forum records and look for “waldens wife” you can see what her experiences were (in your spare time ofcourse haha )

[Caroline]

Teri & Sandy,

My Dad was exposed to Benzene for most of his adult life as well. He was a maintenance electrician in a very large machine shop. There were alot of cleansers and oils used daily. I can still remember the smell of that shop when he used to take me in to visit the staff every once in awhile when I was little. He also used a particular cleanser on his hands every day when he got home from work to get the grease off. I am pretty sure that they have stopped making it. I found an old can that he kept to hold nails the other day and I tried to find a list of ingredients on the side but there were none. I would be curious to see what that cleanser was made of.

Caroline

[bhanson]

HI tsj, My husband has MDS aplastic anemia and has recently had thyroid cancer which was removed with radiation. He was a “downwinder” of Hanford Nuclear Reactor during the 1940’s. His counts have been going down for a couple of decades, and we are fairly competent that his diseases were caused by the radiation releases from Hanford. MDS is one of the diseases listed by the Downwinder Association. So, MDS could be in families if they lived in the general area of it other and were exposed to the same chemicals and radiation. There is so much that we don’t know that we are exposed to. It has to be devastating to have to go through this twice. We are thinking of you. You have a good attitude. Do all you can one day at a time. The people on this forum have helped us immensely. Regards, bhanson

[Walden’s wife]

This is Marie who is still recovering from the loss of my son, 47yo Christopher. He died on Oct.11,05. My husband died Sept.8 2004. The dx was Leukemia AML in both cases. They both worked with Benzene many years ago. No proof that this was the cause but I do have a lawyer looking into the case. If nothing else comes of it, my 3 granddaughters may get some help for there future. Hopefully, Teri’s mom will have a better outcome. And yes, I still pop onto the forum at least once a week. Can’t let go of the support that comes from sharing prayers and caring. Marie

[tsj]

Thanks to all for your kindness and insight. Marie, I am so sorry for the loss of your husband and son. Your story has touched my heart, as difficult as it was to lose my Dad, I have children at home and knew I had to get through it and show them we would be ok. It was so hard to see how my Grandmother grieved my Dad’s death, it truly broke her heart. I will surely keep all of you in my prayers. Teri

[Ensnee]

Hello everyone….I’m following your discussions with interest, especially in terms of the benzene. I did hear within the last few month, I think from Reuters, that low-level benzene is everywhere in air pollution, much of it coming from car exhaust. I’ve wondered if Hans could have been exposed to benzene while working his whole adult life at Toronto airport. He worked for Air Canada Cargo, and though most of that time he was in the office, not on the ramp, I wonder if airplane exhaust carries high levels of benzene, which of course would permeate the area…

Teri, I’m so sorry to hear of your Dad’s, and now your mother’s, illness. Very, very devastating. I hope your mom does well with her treatment.

Esme

[tsj]

Esme, Thank you for your kind words. My father worked for many years on the shipping & receiving docks of a large warehouse, plenty of exhaust fumes there……
My mother had a good Dr. visit today, her lymphnodes are enlarged, but they see no cancer so they will follow up with another cat scan in three months, there was a time I would have thought this was BAD news, now truly it is good news, we are grateful for the good days and good news. Thanks to all for your kindness. Teri

[Stephanie]

My step mother of 25+ years was just diagnosed. I never smoked but second hand from all family members (benzene) or we have both been to old Mexico a bunch.
Simular with your folks w/o being blood related. Enviromental? She is 60ish and I was 34 and diagnosed in 2000? Now they are saying they think I may have Lupus or something simular due to reoccuring meningitis. God blesses me with a new day everyday, after getting 3-5 to live! PLEASE pray for my upcoming MD Anderson Blood and Platelet Drive 12-10-05. We need blood due to the stress of extra patients and weeks of donations lost from hurricanes Katrina and Rita evacuations! Bless all who deals with this debilitating disease!

[tsj]

Stephanie, Rest assured you and the drive are in my prayers.
I’m wondering how many years did you and your step Mom share a home, also does anyone have info pertaining to time frames from exposure to benzene, etc. and becoming ill?

[Author]

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