Leukemia Forum - Myelofibrosis


Myelofibrosis

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Renia

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Joined: 14 Aug 2004
Posts: 2

Myelofibrosis Posted: 08-14-04 18:18pm


My sister has myelofibrosis. I am her care giver. She has recently started taking prednisone in an attempt to stabilize her blood. She is on three transfusions of blood per week and her system is just eating up the blood, the main reason for the prednisone. Her spleen is very, very large, and protrudes, she has just today started a new symptom. She is incredibly thirsty. I know her ferriten level is extremely high and her platelet count was only 23 this week so the Dr. Ordered extra transfusion of platelets. Her haemaglobin is usually about 54 to 59 each week until they transfuse her once per week with three units each time. This brings her up to 85 to 91 which lasts just one week. She is also reacting to the blood transfusions, spiking a temperature as she receives them. My question - why is she so thirsty? What more can be done for her? Thank you in advance. I realize she won't get better, but maybe we can improve her quality of life for now.

hotasfrick

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Joined: 23 Dec 2003
Posts: 3717

Posted: 08-14-04 18:42pm


I do not know anything about the condition you asked about. However, I do have a question. Why don't they remove her spleen? Would that make her more comfortable? I am sorry that you have to go through this. I will keep you in my prayers.

LIBlondie45

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Joined: 02 Aug 2004
Posts: 12

Posted: 08-15-04 16:46pm


Hi, i'm really sorry to hear about what your sister is going through and the same for her loved ones. It is very trying emotionally for the care takers and so heart breaking knowing how helpless we are for our loved ones. My 37 year old girlfriend went through excessive thirst last november for about 2 weeks. We all thought it was diabetes but turns out, she was diagnosed with aml late january 2004. My poor baby lingered in the hospital for 4 long months and finally died late may. I remain very angry, depressed and devastated that this came out of no where and took her. I go to the cemetery every sat and sun as it makes me feel "closer" to her but it is terrible losing someone so special. I will possibly join a support group next month as the individual counseling once a week is not enough. We weren't together that long but I got so emotionally involved when she got ill. I was at the hospital 5-6 days a week along with her parents so it has greatly affected me and the aftermath of it all has been very difficult. I don't know much about myelofibrosis but my gf had acute myeloid leukemia so the myelo part sounds like it's the same type of cancer. It's really one of the worst cancers because you cannot have an operation or cut out that part. Once it gets into the blood, good luck! Please feel free to write me as I have a lot to say along these lines. I wish your sister good luck and good health. You must stay strong, be there for her as much as you can and try to get your mind off the illness, even for just a few moments a day. Easier said than done, I know.

cateswrath

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Joined: 06 Jun 2005
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Location: United States

Removing of Spleen Posted: 06-06-05 05:00am


To those that suggest they remove her sister's spleen, they do not do this because she will die much sooner. Although we think the spleen is a useless instrument; in cases like myelofibrosis, it is what keeps the patient alive. This is also why it becomes enlarged. Your spleen has taken over where your bone marrow has failed. It is producing red/white blood cells that ward off infection and sustain life. The spleen is in overdrive mode; therefore becomes horribly enlarged. My mother's spleen has given her the look of a woman in a term pregnancy. She can only wear maternity clothing; despite the fact that she is 100 pounds.

Broken Branch Ranch

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Joined: 15 Aug 2006
Posts: 2
Location: California

Myelofibrosis Posted: 08-15-06 11:18am


My husband was diagnosed with myelofibrosis in march of this year. I'm tiring to locate someone who has it or a care giver who might be able to help. I want to know how big can a spleen get and at what rate does is grow. My husband's is now football size and grew from hand size to football size in two months. It that fast? It seems like it is to me?

cateswrath

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Joined: 06 Jun 2005
Posts: 4
Location: United States

There Is Hope!!! Posted: 08-15-06 12:53pm


I am updating, since I heard from renia. My very ill mother had her 20 pound spleen removed in june. The surgeon who performed the surgery told my mother that "if" it could be removed he could do it. Her platelet level at the time was 30. After one week in icu and an additional week in an oncology ward, they did another blood test. Her platelet level went from 30 to 65,000. You are reading this correct. She was on the brink of death and removing her spleen raised her count that much. Since that time she has maintained her platelet count from 50,000 to 70,000. My mother weighed 120 pounds going into surgery, so they removed 20% of her body weight by taking out the spleen. Hence, why it was so dangerous. If anyone would like the surgeons information, I will gladly foward. He is one of the top surgeons in the world. We nearly sat by to watch her days finish. I'm so thankful we tried. Her quality of life has improved one hundred fold.

Broken Branch Ranch

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Joined: 15 Aug 2006
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Location: California

Re: There Is Hope!!! Posted: 08-15-06 13:29pm


A 20 pounds spleen!! How long did it take to get that big? I thought football size was big. So was it the size of a ????? It had to be causing your mother a lot of pain! It makes me want to cry! I don't understand, the rise in platelet, it is my understanding that the spleen and liver take over because the bone marrow is scared and isn't producing enough blood. So... You see where my confusion lies. It great for you mother and her loved ones to have her better! How do the doctors explain this to you? Is this something that happens right after the spleen is remove and they fades? Or is it going to remain at a good level? And yes, I would like the doctor's info... I'm looking at ucla and a blood center in washington for our second opinion and/or case review. I just want to find a doctor who has the most experience with myelofibrosis.

Ditey

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Joined: 04 Apr 2007
Posts: 2
Location: Louisiana

Spleen Size/ Rena Posted: 04-04-07 23:50pm


I have been told by my doctors a spleen can get so large its sitting' on your knee's. Rena I would look into a bone marrow transplant for your sister. I met a lady at Anderson that had just had one 2 mts ago..and she was doing well at the time. She was on transfusions ever other day ...one day platletes and the other red blood cells....till her bone marrow transplant Also check into trail studies hon...their making great progress in research right now...i'm on one...and my levels all tho not as low as her's...are going back up...please don't wait to long....I met others at anderson that were transfusion dependent and are in trial studies and no longer having those transfusions....