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Old 09-25-2004, 11:41 AM   #1
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Chronic Lymphocytic Leukemia

Hi.
my mother has been sick for quite a while.
She was scheduled to have back surgery for a cracked vertebrae in august, but it was cancelled because her pre-op blood work showed that her platelets are dangerously low. they were about 80,000, when i think they are supposed to be 300-400 thousand. after this, they did a bunch of tests and an ultra sound, and found out that her spleen is enlarged to twice the size it should be. Now, they are giving mom an MRI (or some kind of body scan) to look for lymph nodes.
Mom wont tell me what exactly that the doctors think is wrong with her, but this sounds like symptoms leading to the detection of chronic lymphocytic leukemia. It runs in my family.
I would appreciate any opinions of what you think this may be , or what her symptoms sound like.
Thanks.
Concerned Daughter

 
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Old 09-25-2004, 05:27 PM   #2
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Dear Maggie HB User
Re: Chronic Lymphocytic Leukemia

Hello concerned daughter! How old are you?

What type of work do your family members do? What does your mom do, or what was she doing when she felt really, really tired?

Sometimes people think things run in their family, but the truth is that they are all being exposed to the same chemical. I am not a medical person, but I have studied one chemical that is in paint, and cleaning compounds, and almost every one is at risk from harm from it ... so learning about it is a very, very good idea. It is 2-butoxyethanol. It causes hemolytic anemia of which enlarged spleen is one of the symptoms. (I suspect acquired autoimmune hemolytic anemia) If I am right it would be a very big help to the doctors to look at her 'retic' ratio and look at the red blood cells in depth. Check the posts I've done today, as I have some very good information I just posted.

I recognise CLL as one of the cancers it causes. It was something that the head of DEC in Valdez had, as did another lady I've been in touch with who also had some job during the Exxon Valdez oil spill cleanup.

If you look at your mom's symptoms and the 'gulf war syndrome' symptoms they may have a lot of similarities. Gulf war troops then and now and many years prior have also been exposed to this chemical. For sure, you do not want to add more exposures ... as it will push you toward cancers that you might otherwise avoid.

But alas, our nation is not educated about this chemicals harm.

 
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Old 09-25-2004, 11:07 PM   #3
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Re: Chronic Lymphocytic Leukemia

Dear MAggie,
Thanks for all your input, but the docs have ruled out any chances of any kind of anemia. Shes not exposed to any weird chemicals...just the normal household stuff every now and then...nothing weird.
im 20 years old. mom and my aunt run a resturaunt together. Yes, the leukemia runs in my family, and everyone in my family that has had it did not have similar jobs or lifestyles.....
dont think its chemicals or anything. wish it were that easy.

 
Old 09-26-2004, 07:20 AM   #4
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Dear Maggie HB User
Well, that depends on what they clean with

Dear One,

It may be that easy, sad to say. It depends on what your mom and her relatives clean with. Six days ago I got a call from a woman who has had some serious health problems and was mostly calling about her husband whom she loves dearly. He is battling a rare cancer. As a military man, he thought it was exposure to Jet Fuel 4 long years ago as he was an aviation man and when he did the checks on the jets, it would run back in his face.

True this might be one exposure to 2-butoxyethanol. The jet fuels numbers 2, 3, 4, 5, 6 are labeled as pesticides and talk in their warnings about 'defatted' skin (...which is one thing 2-butoxyethanol does, it causes leathery skin, dries out the skin and mucous membranes, nosebleeds occur, etc)

Now, I'm going to get my discussion that I wrote up ... and add it on this post.

As to ruling out anemia? That's because the anemia I am talking about DOES NOT show up in the regular blood work doctors do, and if it did, they wouldn't be saying that they do not know what the fatigue is of Chronic Fatigue Immune Dysfunction Syndrome, Chronic Fatigue Syndrome, even 'gulf war syndrome' How long has your mom felt this fatigue? Ask her if she remembers her eyes burning and hurting and having flu-like symptoms and her urine turning dark and a horrible FATIGUE hitting her that has been with her all this time, no matter what she does?

Check for blood in urine, and monitor the red blood cells compared to prior to fatigue Red Blood Cell Count, and the reticulocyte count which is the rate new red blood cells are made. It will be higher than it is supposed to be at first, and slowly drop, and drop. The mystery for medical science to answer is why the hemoglobin and hematocrit and all blood counts look OK even years and years later: when not enough red blood cells are being made, and those that a person has are immature ... not the normal ratio of mature to immature red blood cells.

The direct Coomb's test and the ferritin counts and what's going on with protein in the body may shed some light, too. I have no medical background; however, I studied the one chemical that causes a lot of cancers, and gets blamed for none of them, so if they would participate in a preliminary health survey ... maybe we can help a lot of other people, too.
___________________________________

OK, This is on 9-20-04 to Dee & Randy of Texas -

They both have health ailments that could be related to the chemical I study. She called me this AM because her husband's rare malignant soft tissue sarcoma was from JP-4

He was an Air Force Sgt in 1972-1976
He was a mechanic who tested the airplanes and the jet fuel would pour back on his face ... or mist or something.

Pray for Randy
Says his wife, "Randy has Malignant Fibrous Histiosarcoma High Grade 4 caused by JP-4 Jet Fuel" It started as a lump on his leg, then kept growing, but the doctor said it was just a fatty mass, not to worry; then it spread to the lymph nodes in the groin, then the lungs. He has had multiple surgeries and chemo therapies. Now his inner ear is bleeding a clear fluid (?)

She shared some of her own health-ailments... bone, thyroid ...

& I passed on some things to check for the 'identifying marker' of 2-butoxyethanol: autoimmune hemolytic anemia (Is there blood in urine and are the red blood cells mostly immature?) left out web page

I shared with Dee that we would be praying for her, and those at church, too, to which she replied,
Quote:
Thankyou for your prayers and putting in prayers with your church because through all of this there has been so many miracles that only the heavenly father could have done. So thankyou!! Every prayer helps!

The sad part about all this is there is not any services available for people like us that own our home and were in business for ourselves until both of us were down & sick in February and had to close the company. Being middle age it makes it very hard!

Again, Please Pray for Us!
Thanks
Dee
Dee said,
Quote:
Like I said soooo many great miracles have happened the last two years that sometimes I let the bad things take over! I have been so blessed keeping Randy for as long as I have because this is a very deadly cancer and I praying he will be here alot longer! I do believe that Randy with God's help has proved so many Doctors wrong and their heads are still turning! I'm so proud of him!

I really am glad I found your web site! It feels so good to let some of this go and have someone to listen! It makes me realize that we all need a sounding board sometimes and I just get so busy trying to get things done and never take the time just to release some of this stress inside! All we need is the prayers and the Lord will take care of the rest! Please allow me to send you emails so I can release some of the anger and fear I have inside, that's all I need!

Reading your website was not an accident, this was meant to happen!

Thanks for being there!
Dee
__________________________

and more 9-21-04: Oh, Oh, You Use Simple Green!

Question: When did Randy's fatigue start? ... yours?

Dee, do either you or Randy remember a time when your eyes burned and hurt and you had flu like symptoms and your urine turned dark and you were so, so tired ... just exhausted?

That is sometimes a clue that someone has had exposure to this ethylene glycol monobutyl ether (2-butoxyethanol)

If so what were you doing at that exact point in time?


Check through this info

left out 2 web pages - not allowed on this forum

2-butoxyethanol causes hemolytic anemia. Seems to be autoimmune hemolytic anemia; however, I suspect this same chemical of being the cause of CFS, CFIDS, 'gulf war syndrome'

Answer: I've had these problems for quite some time?

We owned a service company where we worked on food prep equipment for restaurants, deli's etc. Randy would come in with grease ALL over his clothes and it was very hard to get it out. I started using Simple Green and would scrub his shirts until I had blisters on them from 2000 to 2004.????? I started having symptoms a few years ago, but Randy's just started within the last few months, I believe his is from ALL the chemo, meds and stress, but maybe not!!

I will research this later today. I have to go to the doctor today and I will have them check what you have told me. Maybe she can help. I'm going to take a copy of your fax with me if that's OK and help her get updated on this!

It's about time we gather together and stop the EPA & the US Government!!!!!! It's really sad that we can't even do laundry without having to worry if it's going to kill us!!

I'll get back with you later today and update you on what the doctors reaction is! Do realize we both have seen a whole lot of doctors within the last two years! I will get with them in the near future and talk to them! These are very renowned doctor's in the Oncology world and the medical field. They can make a difference if I can convince them to help!

MAD IN TEXAS!!!
Dee


Reply, "OK - Mad in TX

Simple Green would have been an exposure for you to 2-butoxyethanol...."


left out web page - not allowed on this forum

and if a strong exposure, Randy could have gotten some second hand exposure

The eyes and the cuticle area of hands are the best route of exposure for this chemical

Glad you have influence with the doctors

left out web page

OK, ALL, this is a clue that our average every day citizen needs protection from this chemical, too. These are the pages I faxed to her yesterday: Sorry, not allowed to share on this forum

_________________________________

9-22-04 Jet Fuel 4? ... what she thought was the cause of her husband's cancer caused her to go searching for answers. She didn't say much about her own health ailments, but I recognized them as being part of the 'pattern' of the chemical I study. (I should do screening for this chemical prior to doctors seeing patients) ...

This is what she shared last night
Quote:
Sorry but I got a little upset with our Government last night!

Your right that's probably what has happen. That's probably the reason I lost my thyroid in Jan. 2004! I gave the info to my doctor. She was interested and said she would read & research it. That's a start! More than likely it didn't completely wash out of his clothes because I could smell it even after I dried them. I sure hope she can help. Now I need to get with several of the Oncologist, surgeons & regular doctors we have seen in the last two years. Also Randy used Simple Green in cleaning things too because he was the one that told me to try it on his uniforms!

I'll keep you posted! We might have to go to M.D. Anderson in the near future because the only chemo for this cancer didn't work so he will have to do experimental meds

Thanks for being here!!!
Dee ( Not So Mad Now in Texas)
Her doctors will have back up medical that will help them, her, and others ... whose harm from this chemical is going unrecognized.

I've been praying for them; with my friends who pray
So, I will be praying for your mother and your family.

Quote:
you just replied, All i wanted to know is if the symptoms listed in my first post were signs of leaukemia. no need to try and be all argumentative.
Thanks anyway. lovethemusic, daughter
Sorry, I don't know the answer to that, but your mom's doctor or your mom at least should be interested in this info

Last edited by Dear Maggie; 09-26-2004 at 01:05 PM.

 
Old 09-26-2004, 09:27 AM   #5
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Re: Chronic Lymphocytic Leukemia

All i wanted to know is if the symptoms listed in my first post were signs of leaukemia. no need to try and be all argumentative.
Thanks anyway.

 
Old 09-26-2004, 12:02 PM   #6
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Re: Well, that depends on what they clean with

Dear maggie said ::
"As to ruling out anemia? That's because the anemia I am talking about DOES NOT show up in the regular blood work doctors do, and if it did, they wouldn't be saying that they do not know what the fatigue is of Chronic Fatigue Immune Dysfunction Syndrome, Chronic Fatigue Syndrome, even 'gulf war syndrome' How long has your mom felt this fatigue? Ask her if she remembers her eyes burning and hurting and having flu-like symptoms and her urine turning dark and a horrible FATIGUE hitting her that has been with her all this time, no matter what she does? "

I have something to say in response to that one...



i want to add that of course my mother is farigued all the time. She is in constant pain from her back problems, and takes prescribed muscle relaxers and pain killers. She has Discognetic Disc Disorder and a cracked vertebrea. Anyone with these issues will feel tired all the time. she also has a thyroid disorder. There are several reasons that she has been fatigued, i highly doubt they are cleaning chemicals. She probably doesnt do much cleaning these days because she can barely stand up and walk around without being in serious pain.

Last edited by lovethemusic; 09-26-2004 at 12:04 PM.

 
Old 10-02-2004, 09:47 PM   #7
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Re: Chronic Lymphocytic Leukemia

Hi Lovethemusic,

My mother also has CLL. She was diagnosed with it 3 years ago. They found hers during her routine check-up. Her white blood cell count looked strange. They re-checked it and asked her what her mother died of. Her mother (my grandmother) died of Leukemia, as well as her Grandmother (my Great-grandmother)died of Leukemia.
They decided to send my mother to a cancer specialist and he confirmed the fact that she has CLL.

If you had to have any type of Leukemia, even though I wouldn't wish it on my worst enemy, CLL is the better of the Leukemia's to have. It is a very slow progressing cancer.

Neither my great grandmother or my grandmother had CLL. There cancers was the fast progressing kind. My Great Grandmother died within 2 weeks of finding out she had it. My Grandmother died in a year.

One doctor said that there is a possibility that our family carries a chromizone called the Phili******a Chromizone that causes the Leukemia.
My Great Grandmother had Leukemia, my Grandmother had Leukemia and now my mother has Leukemia. YES, IT IS GENETIC. Don't get me wrong, if a person has this cancer it doesn't mean that everyone in the family wil get it. But for it to be going down the line in my family the way it is going, yes in MY family it is genetic.

My OB wanted me to go and get tested for the Chromizone, but I said no. I mean why bother?? The chances are, that I do carry the chromizone. I go for check-ups every year, if there is anything they will find it in my CBC count. They can't take away the chromizone.

Well, anyway, like I said my mom has CLL. You can live for 20 years a very helthy life. She has had it for 3 years now and is doing great !!! She is at stage 0. Her last count was 26,000 which so far has been the hightest count for her. It has not affected any of her organs or Lymph nodes. The doctor said her count could be up to 100,000 and as long as it doesn't affect any of her organs or nodes, she will not need meds. The doctor said she is doing great !!

Make sure that your mom has a realy good doctor that deals with this illness. There is alot of treatment out there for this kind of cancer. Your mom could have a very long life with this just as long as she does exactly what her doctor tells her!!
My heart goes out to you and your mom !! Keep in touch and keep me informed on what is going on !!!

 
Old 11-12-2004, 06:04 AM   #8
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Re: Chronic Lymphocytic Leukemia

wow thanks for your reply.
It turns out that they did a bone marrow biopsy, and mom is LEUKEMIA FREE!! We are very glad about this, however...
she has been diagnosed with Splenic Lymphoma....and the doctors say that be best solution is to have her spleen removed. does anyone know anything about splenic lymphoma? She is having surgery on Tuesday...and im worried about her recovery. ill post something on the lymphoma board too in case they can help...
thanks for all your support.
~SARA

 
Old 11-13-2004, 07:56 PM   #9
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Re: Chronic Lymphocytic Leukemia

Glad to here that it is not Leukemia !!! I don't know anything on Splenic Lymphoma. Keep us posted !!!

 
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