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Shawn
Registered Member
     
Date Joined Dec 2003
Total Posts : 1
| Posted 12/29/2003 9:06 PM (GMT -4) |   | 'My fathers has been batteling myleoprolific disorder or mylofibrosis for approx. 4 years now. His spleen is extremely enlarged due to his weekly injections of 45,000 units of "EPO". Unfortunately, this is the only thing that will keep his red cell count up.
My question is does anyone know of anything that he can do, or take, to help relieve the terrible itching that he experiences constantly. He will literaly scratch himself until he bleeds, the itch is that intense. His doctor say that the itch is due to his ill balanced blood chemistry.
Any suggestions would be greatly appreciated!
Thanks you very much!
SHAWN'
mod: Myelofibrosis is one of the myelproliferative diseases. The marrow becomes essentially fibrosed over("scarred") as fibroblasts over-grow. The infantile hemopoietic organs like the spleen take over, and of course the erythropoietic drugs encourage that.( It's better than having endless transfusions.)Itch is characteristic as the abnormal cells and subtypes casue the release of histamine, serotonin, and bradykinin in the skin. Scratching until one bleeds is to be discouraged-- of course it takes enormous self-discipline-- and the usual approach is to try antihistamines, natural or drug, and antiserotonin/bradykinin agents, of which there are many. Heat -- like hot showers-- worsens it. It's not exactly "unbalanced chemistry", if it were it could be re-balanced.
Let's here what our other participants have to offer for itch.
MAL | | Back to Top | | |
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Nick Stratis
Registered Member
Date Joined Aug 2004
Total Posts : 2
| Posted 8/5/2004 4:13 PM (GMT -4) | | | I also have myleofibrosis for over a year now and the only thing i have taken medically for it is blood transfusions. I sure need to find out of any other medication that will ease the number of transfusions. | | Back to Top | | |
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tonya
Registered Member
  
Date Joined Sep 2004
Total Posts : 9
| Posted 9/17/2004 12:08 PM (GMT -4) | | | My father was diagnosed with mylofibrosis 2 years ago. last year his spleen was removed at 61/2 pounds. he has taken a drug called hydroxia but it quit working also he has taken procrit shots but did not help either. as of yesterday his hemoglobin was 6.2 and they have my father scheduled for a transfusion this friday. i wish there were other alternatives my father really doesnt like blood transfusions. My father has been a brick layer most all his life. im not real sure how he got mylofibrosis. but my understanding is that it is a cancer in the bone marrow. yet they say a bone marrow transplant is to risky for him. other then that all i know is they say there is no cure. i am looking for any kind of hope that there may be out there any info would be most appreciated thanks. | | Back to Top | | |
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Gerald
Registered Member
Date Joined Nov 2004
Total Posts : 3
| Posted 12/2/2004 2:08 PM (GMT -4) | | | I am 50 years, just diagnosed at the Mayo clinic in Rochester, Minnesota. Right now all I am experiencing is the being tired all the time from the lack of red blood cells, the enlarged spleen, the lack of appetite.The Mayo clinic was very adamant about how dangerous a bone marrow transplant is. My biggest question is with all the medical bills coming in after your company's insurance has paid, what do you do?They are very, very large and like most of us I have no nest egg, large savings account, or rich relatives. I live from paycheck to paycheck and barely make it on that. I have a wife and 2 kids to worry about and don't have any idea where to get help. Anybody got any ideas? Please and thank you. | | Back to Top | | |
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CindyLee
Registered Member
Date Joined Jan 2005
Total Posts : 4
| Posted 1/21/2005 4:57 PM (GMT -4) | | Hi everyone!
I just found and joined your forum. My mother has myelofibrosis with an exteme itch. She had colon cancer in '91 and soon after she quit the chemo she developed this awful itch. We tried everything and saw a number of doctors. About a year ago or so we discovered "neurontin." I think it is for seizures. At any rate, she has had great success with it. She still itches occasionally and hates showers but she has far fewer episodes making it much more tolerable. Hope this info helps you too!
Her Dr. is considering removal of her spleen because her blood counts are very low. Can anyone tell me their experience with this procedure? She is 75 yrs old. Thanks. | | Back to Top | | |
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Mother Margaret
Registered Member
Date Joined Jan 2005
Total Posts : 323
| Posted 1/28/2005 3:29 PM (GMT -4) | | |
mod: "Let's hear what our other participants have to offer for itch"
Rashes, itch, etc are one way our body has of complaining about too much of some kind of chemical, that's what I think. Look at the list of the ways our body can 'complain' When a lady helped out with an oil spill drill that had a small cleanup involved a year ago, she lost her voice, now she has even lost her gall bladder (part of the big picture of what 2-butoxyethanol can do) AND did the doctor think it might be a chemical overexposure? He did a biopsy of her vocal chords. She knew more than most, because I had shared about this chemical and learned that her brother who was a painter died of the blood damage extended effects &/or the prostate cancer he was being seen for ... just a year prior.
PLUS a list of other things to report to your doctor. Look at the big picture
How is your dad? What kind of work does he do?
Tonya, you say your dad was a brick mason. I looked up a little info on it and found out that very good quality chemicals used in cleanup of a job were an important part of the process. That they are put into a piece of equipment (so handling full strength chemical) and then are sprayed after being mixed with water. If the chemicals have 2-butoxyethanol type of chemical, realize that the worst exposure is the vapors in one's eyes. We do not often see the 'protective equipment as using air tight eye goggles
One of the conditions you mention sounds like it should affect the white and platelet cells also.
Does your dad remember a time when eyes burned and hurt and his urine turned dark?
The autoimmune hemolytic anemia goes undiagnosed, I believe because it fools the basic blood info doctors take
It goes from a high number with an acute exposure to 2-butoxyethanol type chemicals ... and for years will be in normal range; and even when under normal rate for making new red blood cells, the other numbers can still look OK
Ask the age of red blood cells; their size and their shape
What are the membranes like?
They can test directly for this autoimmune hemolytic anemia, but they don't because, they don't think it is there.
I have no medical background. I just learned about this one chemical and have talked to a lot of people with known and suspected exposure to it. Thus I see what the patterns are
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art
Registered Member
Date Joined Apr 2005
Total Posts : 2
| Posted 4/18/2005 6:11 PM (GMT -4) | | I am caretaking my mother with myleofibrosis and need to get in touch with others who know about it and can share what tricks and remedies they may have. We live in the tampa bay area
I need to know what to expect so I can prepare. she is 74, requires freqent blood trnsfusions and has enlarged spleen. I have moved over here and want to make her as comfortable as possible.
Please point me to more information resources. | | Back to Top | | |
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lkl
Registered Member
Date Joined May 2005
Total Posts : 2
| Posted 5/18/2005 5:29 PM (GMT -4) | | hi my grandfather has myelofibrosis and he has a terrible itch which the dr says has nothing to do with this disorder. however it seems to be fairly common from what i'm reading here. he's been given procrit for the anemia i guess and they had been giving him steroids to help with the itching and it seemed too. i'm just curious what if any other kinds of treatment you all have heard of or tried that's worked ...
and on another note i read in an online mag. Salon.com about a new drug that theyve been testing to help with the symptoms of myelodysplatic syndrome its called Revlimid and they've been very pleased with the results. its not JUST treating the symptoms, its seems to be causing remission in quite a few of the patients tested.
if your interested the article is at www.salon.com
thanks for any info :) | | Back to Top | | |
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Mother Margaret
Registered Member
Date Joined Jan 2005
Total Posts : 323
| Posted 5/20/2005 4:27 PM (GMT -4) | |
ITCH not a part of the initial problem? It could be brought on by the medication or too much of some type of chemical
I think what you are describing could be a primary harm for many of the gulf war vets, too, by the way. Autoimmune hemolytic anemia could be underlying the other ailments they have. But the central nervous system damage screams so loud, that it goes unnoticed. Also it is the cause of CFS, CFIDS from my perspective ... and as doctors say, they do not know what the fatigue is.
Many are concerned about the "gulf war vet" and similar harm to our current troops. I took an extreme interest when I realized how similar the "gulf war syndrome" symptoms as put out by the American Legion ... were the same as that of those from the Exxon Valdez oil spill cleanup ... those exposed to 2-butoxyethanol in Corexit or Inipol EAP 22. (The latter no longer available for use per EPA ... the former sold to the Dept of Defense, Australia, Karachi ... who knows who. It is 3 times the strength and was not selected for use during the oil spill cleanup, but remains to leak in the arms room and be carried to and fro by Seabees.)
I'm sure we are all concerned with this potential threat to today's troops ... it seems to show up especially in war time. Such with these 3 soldiers in recent months AFTER their service in Iraq. A weapon's sgt and paratrooper I spoke with; I wonder about Staff Sgt James Alford. I asked his dad to see whether or not there was blood in urine and red blood cells that were immature. This article was e-mailed to me by a "gulf war syndrome" vet.
One military man said that his "gulf war syndrome" symptoms that he came down with in 1985 .... kept pointing to jet fuel as the source of his ailments. I found that jet fuels no 2-6 were labeled as pesticides and had some of the "warning" terminology such as you find with 2-butoxyethanol: causes "defatted" skin, etc. This is a govt comparison of JP-5 to JP-8. IF it is of interest to you, make your own copy, as sources can be deleted or changed, such as this which I did make a copy of (this chemical and it's double strength tested by EPA as an endocrine disruptor chemical).
High hope for help from an immune system 'vitamin' such as glyconutrients. Dr. REG explains the microbiology of them.
Dr. Garrett of Kansas is doing a clinical trial with them now. He shared his thoughts also with Dr. Lea Steele, who asked ...
May 12, 2005 Diann, Do you have more specific information about what the glyconutrient therapy involves, what types of conditions it is used for, and what types of results have been seen using this protocol? Thank you, Dr. Lea Steele
Research Advisory Committee on Gulf War Veterans' Illnesses U.S. Department of Veterans Affairs 2200 S.W. Gage Blvd (T-GW) Topeka, KS 66622 website: www.va.gov/RAC-GWVI
Help - good nutrition and glyconutrient food supplements
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Jenny Gomatos
Registered Member
Date Joined Aug 2005
Total Posts : 4
| Posted 8/15/2005 6:54 PM (GMT -4) | | | To everyone out there with myelofibrosis. I just wanted you all to know that my father was diagnosed with the disease in 1980. His name was George Holden from Henderson North Carolina and he was "larger than life". THe best father that a girl could ever wish for. He died at age 58 in 1995. At first, we were told that he would not live more than 5 years. As you can see, he lived 15 more years and was able to work at his office until the day he died. He went on trips, he walked me down the aisle, and saw his first two grandchildren come into the world. The thing I learned during the time that he lived with this disease is that THE WILL TO LIVE and the patient's attitude is a huge factor in the outcome. You all may want to check in with Joe Moore at Duke University in Durham NC. Joe was my father's doctor and we could not have been more grateful to him for his loving care of my dad. Hope this helps! With Love and Hope - Jenny | | Back to Top | | |
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viv_c
Registered Member
Date Joined Jun 2006
Total Posts : 10
| Posted 6/27/2006 11:49 AM (GMT -4) | | | I was just diagnosed with myelofibrosis a few days ago and am trying to learn all I can about what to expect and what treatments are available to me. I am 39 with 2 kids, ages 16 and 13, so needless to say I am somewhat worried and fixated on the life span of 5-7 yrs. It does make me feel better to read about others living much longer but I still dont know what to think. I have been battling rheumatoid arthritis for several years now and had finally gotten on enbrel which was a wonder drug for me; I seldom had any symptoms other than being anemic. That is how they discovered the myelofibrosis. I had to have a bone marrow biopsy to find out why I was still anemic. Is there anyone who can direct me in what to expect next? | | Back to Top | | |
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lb
Registered Member
Date Joined Nov 2006
Total Posts : 2
| Posted 11/15/2006 12:01 PM (GMT -4) | | | I have just been diagnosed with myleofibrosis (age 67). I am on hydrosyurea. I would be interested in any side effects experienced. Also, I would like to know about length of use and other suggestions. lb | | Back to Top | | |
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Btucker
Registered Member
Date Joined Feb 2007
Total Posts : 2
| Posted 2/12/2007 2:54 PM (GMT -4) | | | I am 44 years old and I have myleoprolific disorder, I to currently take hydra I've been taking hyrda for over 15 years and some of the side effect are dark spots in your hand and on your feet. I find myself tried all the time even though I work I'm always tried. I wish you the best and I pray that God will heal you. | | Back to Top | | |
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tonya
Registered Member
Date Joined Sep 2004
Total Posts : 9
| Posted 3/15/2007 12:36 AM (GMT -4) | | | On March 10th, 2007 my father passed away. He just turned 75 yrs old in Dec, 2006. He was diagnosed with myelofibrosis in 2000 and in 2002 his spleen was removed weighing 61/2 pounds. Since the spleen was removed until the end he had tried many different medications and was getting blood transfusions. In Oct, 2006 my dad started complaining of a numbness in his left arm from his shoulder to his elbow, but he kept assuming possibly it was from a vaccine or possibly one of his procrit shots that may have hit a muscle. He also started getting chills up his back. On Nov 14th I took him in for a scheduled blood transfusion and while he was being trasfused he had a seizure (something he has never had before) he was rushed into emergency and kept overnight, they sent him home on a zpack (antiobiotics) because they said he had a touch of pneumonia and they said they thought the seizure was a reaction to the blood transfusion. On Nov 18th he is still getting chills up his back and the left arm is still numb from the shoulders to the elbow, he had another seizure. The ambulance took him to a hospital other than the one he always goes to because we were out of town, they ran many tests and released him not knowing what caused this seizure. On Nov 28th the chills are still there and the numbness has moved lower into the arm he is back in his hospital getting another transfusion and has another seizure ... Now they do an MRI and find a mass in his brain the size of a walnut. He is admitted into the hospital and scheduled for brain surgery . . . the surgeon believing he is going to find a tumor.
Between Nov 28th and Dec 5th my dad is in the hospital and now his whole left side is completely paralyzed. Dec 5th doctor does the brain surgery....There is no tumor instead he extracted a pocket of pus (infection) they send it to a lab and it turns out my dad had an infection called NORCORDIA...OR....NORCODIAL i am not sure of the spelling. They told us this is something he breathed into his lungs and it went to his brain (because he has no spleen his immune system is compromised) and he could not fight off this infection. He stayed in the hospital untill Jan 27th and they sent him home to live with me under a program called paliative care (nurses help). On Feb 27th he had a seizure, a real bad one and the ambulance took him back to the hospital. On March 7th he got to come back home this time under a program called hospice. On March 10th he passed away with all of his children next to his bedside at home where he wanted to be.
Up until this infection, my father functioned very well with the myelofibrosis. He was totaly able to do anything he wanted for himself. This infection took my father's life within a matter of 4 months. I know that it was due to the myelofibrosis that he could not fight it off and he suffered many complications because of it, but I just want to say if you have this disease please be aware that your immune system could be compromised and take the proper precautions to protect yourself. And if you should feel different symptoms do not assume you know what is causing them go in and have your doctor test, test, and test until he can tell you what it is. When my dad left this world his blood transfusion were needed 2 sometimes 3 times a month. And his body had started rejecting platelets which he also recieved through transfusions. He is no longer suffering but I still continue to pray everyday as I did while he was here with us. I pray there will be a cure for myelofibrosis. I know that the Mayo Clinic and also a cancer research hospital in Kalamazoo, Michigan continue to do clinical trial studies on medicine for mylefobrosis. My father was unfornately not a candidate for these studies but some of you may be intrested in them. Good luck to all and take the best of care!
Never stop researching this disease and never stop looking for answers. Post Edited By Moderator (DDye) : 3/14/2007 11:41:39 PM (GMT-4) | | Back to Top | | |
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DDye
Forum Moderator
Date Joined Jan 2002
Total Posts : 405
| Posted 3/15/2007 12:42 AM (GMT -4) | | | | |
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Jenny Gomatos
Registered Member
Date Joined Aug 2005
Total Posts : 4
| Posted 3/15/2007 10:54 AM (GMT -4) | | I still log on to see what the new developments are with myleofibrosis. My father meant to much to me and I think of anyone who has been affected by this disease as family. All I can say is that there is no doctor that can predict how long someone lives or the MOMENTS that they will have that are so special even after being diagnosed. Had my father believed the statistics, he would not have lived to see his first grandchild. I still picture them both, lying in bed watching BATMAN with suckers stuck in thier mouths and grinning because it was an R rated movie. Myleofibrosis does NOT have control over everything.
In terms of the itching that was mentioned in previous postings, the only thing that I remember helping dad were the baths with oatmeal. Also different pain medications can cause itching so I would suggest looking into alternative medications for pain.
If anyone needs to talk, I am here - 919-345-0563. My love and prayers - Jenny | | Back to Top | | |
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Mother Margaret
Registered Member
Date Joined Jan 2005
Total Posts : 323
| Posted 3/15/2007 11:00 AM (GMT -4) | | |
tonya,
I remember e-mailing you and posting on this topic. You are a loving daughter and I know your dad appreciated you. Didn't you share that he was a brick mason? I think I looked that profession up ... and the cleaning phase at the end was an important one. It seemed to me that the chemical I'm concerned about (2-butoxyethanol) would be in the spray mix .... and that it could get into the worker's eyes. (Do not mist the MSDS info will sometimes say; I think this is the WORST exposure.)
I too, am sorry to hear of all he dealt with and give my condolences to you and your family.
Seizures for the group of people I know about (EVOS workers) ... would be from lack of oxygen with exposure to 2-butoxyethanol. This is also part of the paralysis: advanced fatigue AND/OR it could be autoimmune action on the nervous system.
I would suspect he had a subnormal body temp in the last months of life (?) if this chemical were the primary cause of his ailments (especially swollen spleen).
I think 'the chills' also are part of autoimmune hemolytic anemia - at least the medical dictionary lists it as one of the 8 signs of this (research shows 2-butoxyethanol causes hemolytic anemia ... and I suspect AUTOIMMUNE).
In the documentaries I've seen on Pres FDR and the Pope John Paul II ... they both had comments of chills prior to death.
I'm hoping the harm of this chemical will stop.
And that if we found the EVOS workers & learned what happened to these 'forgotten ones' ... we would see that they look like those with CFIDS, like the 'gulf war syndrome' vets, like the soldiers of the Vietnam and WWII eras also.
I am asking for help in locating them and learning of what they dealt with.
Alaska has 'unfinished' business & a legacy for our Nation to learn of as well.
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"Frankly, in all the litigation, and through all the controversy after the spill, nobody has ever asked the question:
What about human health?"
said Dr. John Middaugh, Alaska state epidemiologist.
LA Times Article
milestone article about workers | |
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What happened to the Exxon Valdez oil spill cleanup workers? |
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Mother Margaret
Registered Member
Date Joined Jan 2005
Total Posts : 323
| Posted 3/15/2007 1:27 PM (GMT -4) | |
viv_c said...
I was just diagnosed with myelofibrosis a few days ago and am trying to learn all I can about what to expect and what treatments are available to me. I am 39 with 2 kids, ages 16 and 13, so needless to say I am somewhat worried and fixated on the life span of 5-7 yrs. It does make me feel better to read about others living much longer but I still dont know what to think. I have been battling rheumatoid arthritis for several years now and had finally gotten on enbrel which was a wonder drug for me; I seldom had any symptoms other than being anemic. That is how they discovered the myelofibrosis. I had to have a bone marrow biopsy to find out why I was still anemic. Is there anyone who can direct me in what to expect next?
I was wondering how you are doing?
I noticed your post back in June, 2006.
I think the chemical that causes autoimmune issues is in our cleaning products too strong. You may learn some things on this site I put together http://groups.msn.com/clean
The autoimmune causing looks like 'the flu'.
Causes CFIDS or Chronic Fatigue syndrome pattern:
Doctors say they do not know what the fatigue (anemia) is
I think it is autoimmune hemolytic anemia caused by 2-butoxyethanol primarily.
Sometimes (new name) is Immune Mediated Hemolytic Anemia. Many times non Hodgkin's lymphoma 'goes with' It has a wide variety of ways it can show up. Thankfully not everyone comes down with everything 2-butoxyethanol does. And that's why it can do so much harm and get away with being blamed for none of it.
I think my friend Helen was harmed by 2-butoxyethanol or double version of it in household cleaning products she used. Arthritis is also an autoimmune issue I would suspect from this chemical exposure. AVOID it at all costs; you will also be helping your family, too as the vapors can get in everyone's eyes. http://www.valdezlink.com/pages/helen.htm | | Back to Top | | |
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iloveletters
Registered Member
Date Joined Apr 2007
Total Posts : 3
| Posted 4/23/2007 10:43 AM (GMT -4) | | Hi,
I'm new to this site. My Father (75) has had mylofibrosis for about 5 years. His blood counts were starting to drop and we were going for transfusion more often. He had been on a high does of Procrit. The Doctor then added a drug called thalidomide. His blood counts started to climb upward. He had gotten to a 9.0, which he had not been that high in a least 2 years (he had gone down to 7.2). However the day we got the good news about his new count was the same day the insurance company decided he didn;t need his procrit shots and would no longer pay for them. So now we are in the process of proving or disproving he needs both meds to maintain the higher counts. I will post again and let you all know how this works out. We will know in a week or two if he maintains good counts with just the one drug or if it is the combo that is doing the job.
He has been lucky he has not had any itching but he does have really bad edema. He did have a bad reaction to his first transfusion and they started giving him Benadryl with the blood and that helped.
I only have one piece of advice for the gentleman that was having problems with financial end of this. Get yourself a lawer and get financial advice, this is something my father refused to go to an elder lawyer and now its too late and he will more then likely loose everything he and my mother worked so hard for. Insurance doesn't cover the things you think it should but you only find this out when it is too late. To get help from most agencies you have to be poor. Middle class America gets no help that I am aware of. Our crisis at the moment is transportation. My dad has become wheel chair bound and i have no idea how they are going to afford a handicapped van to get him to the doctors for his treatments. If he uses the money in the bank to buy the van he can't pay his monthly bills and will lose his house. To get a transport to the center it cost about $150 per trip. He goes to the center once a week...he can't afford $600 a month. It's crazy! If anyone has any ideas or knows of any places that help people with the financial part of this disease please email me.
Thanks and I wish you all the best! | | Back to Top | | |
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Lana8
Registered Member
Date Joined May 2007
Total Posts : 4
| Posted 5/7/2007 1:26 PM (GMT -4) | | | A good mediation for itch is Triamcinolone 0.1%. | | Back to Top | | |
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