Myelofibrosis

suesue555
suesue555 Member Posts: 25
I like any one has Myelofibrosis to contact me at my e mail address [email protected]
I just find out I have Myelofibrosis this August 2008
Thanks
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Comments

  • zahalene
    zahalene Member Posts: 670
    I am sorry....
    I do not have it Sue, but my mother did. She died from complications of diabetis about 2 years after being diagnosed with Myelofibrosis. She was in her 80's.
    She took thalidamide for it. The drug had some unpleasant side effects but did seem to help slow the progress of the disease. She also got regular procrit shots to boost her white counts, and occasionally blood transfusions which helped her feel much better for awhile. Cumadin also helped her circulation.
    As I said, she was in her 80's and had other serious health issues. Her situation was in no way typical and should not be considered a good 'example' of someone struggling with Myelofibrosis.
    God bless and I pray you find the treatment that works for you.
  • suesue555
    suesue555 Member Posts: 25
    zahalene said:

    I am sorry....
    I do not have it Sue, but my mother did. She died from complications of diabetis about 2 years after being diagnosed with Myelofibrosis. She was in her 80's.
    She took thalidamide for it. The drug had some unpleasant side effects but did seem to help slow the progress of the disease. She also got regular procrit shots to boost her white counts, and occasionally blood transfusions which helped her feel much better for awhile. Cumadin also helped her circulation.
    As I said, she was in her 80's and had other serious health issues. Her situation was in no way typical and should not be considered a good 'example' of someone struggling with Myelofibrosis.
    God bless and I pray you find the treatment that works for you.

    Myelofibrosis
    Zahalene: Thank you for the reply, I am going to see the doctor next Monday, then I will
    find out more, I am only taking the pills for high blood planlete,I have not gotten any
    medicine for my Myelofibrosis, the doctor said that this couple years, I should be o.k. as long as I do not turn into blood cancer. Myelofibrosis usually last for 5 years, I like to know any one have Myelofibrosis has lived more then 5 years to contact me.
  • mkteach
    mkteach Member Posts: 1
    suesue555 said:

    Myelofibrosis
    Zahalene: Thank you for the reply, I am going to see the doctor next Monday, then I will
    find out more, I am only taking the pills for high blood planlete,I have not gotten any
    medicine for my Myelofibrosis, the doctor said that this couple years, I should be o.k. as long as I do not turn into blood cancer. Myelofibrosis usually last for 5 years, I like to know any one have Myelofibrosis has lived more then 5 years to contact me.

    Myelofibrosis
    Suesue: I just was diagnosed yesterday. How has your treatment been going. I'm scared.
  • suesue555
    suesue555 Member Posts: 25
    mkteach said:

    Myelofibrosis
    Suesue: I just was diagnosed yesterday. How has your treatment been going. I'm scared.

    Myelofibrosis
    mkteach: There is nothing to be scared, I am taking regular pills for the high blood planletes,what does your doctor say? Do you need a Bone Marrow transplant, I cannot find
    a match for my bone marrow transplant, I am 60 years old ,how old are you? How long do you have high blood planlete? I have high blood planlete for last 18 years, so now it turns
    into Myelofibrosis. I am also taking chinese medicine as well.
    Keep in touch, my e mail [email protected]
    Welcome to write to me any time.
    Just stay happy and do not be scared.
    Regards
    sue
  • mono5
    mono5 Member Posts: 94
    Hi Sue,
    You mentioned chinese meds that your taking for Myelofibrosis. Can you give me some information on it and if its been effective... I would appreciate it. Take care, god bless, Monty
  • suesue555
    suesue555 Member Posts: 25
    mono5 said:

    Hi Sue,
    You mentioned chinese meds that your taking for Myelofibrosis. Can you give me some information on it and if its been effective... I would appreciate it. Take care, god bless, Monty

    Myelofibrosis
    Monty: I am only taking this chinese medicine for 3 months, it will take at lease 6 months
    before I can see a result, as long as this medicine keep my health stable, that is good,
    I am taking one week med.for killing cancer cells, and other week, I am taking med. to clean
    the toxi in my body, and one week taking med for my splent, and some
    chinese herb too, as long as I don't turn into blood cancer, then
    I am o.k. I suggest that you go to see a chinese specialist doctor for
    cancer. There is where I got my med. I don't think you
    can buy them from the market, it is quit complicated.
    If any thing I can be help, I am more than happy to provide you
    the information.
    Regards
    Sue
  • lawnmower511
    lawnmower511 Member Posts: 8
    Myelofibrosis
    I was just told I have Myelofibrosis.I am in great health an just turn 52.What are your options?Anything can be beaten try your best.
  • suesue555
    suesue555 Member Posts: 25
    Myelofibrosis-Lawnmower 511
    The Bonemarrow transplant is the best treatment, if
    you can find a match. Otherwise just take the medicine
    doctor gave to you to take.
    Do you have high blood plantelet before or you still have
    high blood plantlete?
    I will go to take another blood test at beginning of April,
    then I will know more about my chinese medicine to see they
    are working or not.....
    Please keep your processing post, then we can compare the situation
    of each other if you don't mind.
    Thanks
    suesue
  • kam_k_pang
    kam_k_pang Member Posts: 1
    Myelofibrosis Support Group
    I have created a Myelofibrosis Support Group site on FaceBook
    http://www.facebook.com/groups.php#/group.php?gid=73982664441&ref=mf
  • suesue555
    suesue555 Member Posts: 25
    Good news - Update - Myelofibrosis
    I have been going to see a chinese herbal medicine cancer specialist, it has been 7 months now,finally, on my last blood test result, my blood plantlete and my white blood cells count have been lower, my spleen is also come back to be normal, it seems these chinese herbal medicine is working for me .........I will continue to see this doctor, I am still seeing
    my can.blood specialist every 3 months.

    Regards
    suesue
  • Julie Jonck
    Julie Jonck Member Posts: 2
    Myelofibrosis
    Hallo,
    I am Julie Jonck and have been diagnosed with this illness in August 2008. I had pain on the rightside and pain in my back and my Hemoglobin count was very low. I am waiting for
    a Bonemarrow Transplant. I have blood transfusions every month and receive other medication. Hydrea capsules and Remeron injections every week. I do feel better, though very tired at times. I live in Pretoria South Africa. I hope you are feeling ok. Would love to hear from you.

    Regards Julie
  • suesue555
    suesue555 Member Posts: 25

    Myelofibrosis
    Hallo,
    I am Julie Jonck and have been diagnosed with this illness in August 2008. I had pain on the rightside and pain in my back and my Hemoglobin count was very low. I am waiting for
    a Bonemarrow Transplant. I have blood transfusions every month and receive other medication. Hydrea capsules and Remeron injections every week. I do feel better, though very tired at times. I live in Pretoria South Africa. I hope you are feeling ok. Would love to hear from you.

    Regards Julie

    Myelofibrosis
    Hi, Julie
    Nice to hear from you, I have been diagnosed with this illness in Aug 2008 too,
    I am luck that I do not need blood transfusions yet, if you don't mind, how old are you?
    I am coming 60, I am also on waiting list of Bonemarrow transplant, It is hard to
    find a match, just like to win a 649 Loto. Did you find a match yet, I havenot yet.
    My problem is that my red blood cells are low, my blood planlete and white blood cells
    are high, I am taking 3 Anagrelide pills per day, plus my chinese herbal medicine,
    I had taken Hydrea capsules before switched to Anagrelide.
    I feel so tired daily, I am still working for time being, cannot afford to retire yet.
    Just keep in touch, we can exchange experiences or talk. You also can e mail me
    [email protected]
    It is always nice to hear from some one, some where, some times,
    Just pray too..............we have done every thing we could................
    Regards
    sue
  • Julie Jonck
    Julie Jonck Member Posts: 2
    suesue555 said:

    Myelofibrosis
    Hi, Julie
    Nice to hear from you, I have been diagnosed with this illness in Aug 2008 too,
    I am luck that I do not need blood transfusions yet, if you don't mind, how old are you?
    I am coming 60, I am also on waiting list of Bonemarrow transplant, It is hard to
    find a match, just like to win a 649 Loto. Did you find a match yet, I havenot yet.
    My problem is that my red blood cells are low, my blood planlete and white blood cells
    are high, I am taking 3 Anagrelide pills per day, plus my chinese herbal medicine,
    I had taken Hydrea capsules before switched to Anagrelide.
    I feel so tired daily, I am still working for time being, cannot afford to retire yet.
    Just keep in touch, we can exchange experiences or talk. You also can e mail me
    [email protected]
    It is always nice to hear from some one, some where, some times,
    Just pray too..............we have done every thing we could................
    Regards
    sue

    Myelofibrosis
    Hi Sue,
    So glad to receive your reply. I am 57 years this July. I am also still waiting for a donor yes it takes a lot of time. I will go on with the blood and medication until that day comes I dont have the very bad pain in my bones anymore I just have terrible night
    sweats. It is my red blood platelets that is the problem, the blood vanishes quickly. I still work, I design bridal jewellery and sell pearls. Luckily I work from home and can do it when I can work. I really am so listless it is terrible. I am going to visit my daughter in Belgium in 3 weeks time and before I go I will get 3 units of blood. I think
    the trip will be very tiring. Must say the blood really make one feel better, perhaps you should talk to your doctor about that. Hope you feel better today. Yes we can only pray for strength to go through every day. Where do you live? Very interested in other peoples countries I go onto Google Earth and locate the town and then I feel good to know where
    the person are.
    Have a nice day
    Julie
  • suesue555
    suesue555 Member Posts: 25

    Myelofibrosis
    Hi Sue,
    So glad to receive your reply. I am 57 years this July. I am also still waiting for a donor yes it takes a lot of time. I will go on with the blood and medication until that day comes I dont have the very bad pain in my bones anymore I just have terrible night
    sweats. It is my red blood platelets that is the problem, the blood vanishes quickly. I still work, I design bridal jewellery and sell pearls. Luckily I work from home and can do it when I can work. I really am so listless it is terrible. I am going to visit my daughter in Belgium in 3 weeks time and before I go I will get 3 units of blood. I think
    the trip will be very tiring. Must say the blood really make one feel better, perhaps you should talk to your doctor about that. Hope you feel better today. Yes we can only pray for strength to go through every day. Where do you live? Very interested in other peoples countries I go onto Google Earth and locate the town and then I feel good to know where
    the person are.
    Have a nice day
    Julie

    Myelofibrosis
    Julie: Nice to hear back from you, I live in Calgary, Alberta, Canada, I don't know you have
    heard our city, it is beautiful, and cold, the cold is no good for me, but I like Calgary,
    I came from New York in 1975. After 34 years, I still here, I go back to visit my
    family twice a year, If the economic is getting better, I wish I can retire,
    I do not want to work until I die, no body knows when I will die, but I plan every thing already, I got a will etc........... I am lucky I don't have too much pain, there is a lady
    in England who is 42 has a perfect match from her brother, she is going to do a bone marrow
    transplant at the end of this month, her spleen is getting big and pain...........
    My specialist Canadian doctor just give me the same medicine as 18 years ago, when I found out
    that I have high blood planlete it was over 1,200,000 now I am down to 300,000 with chinese
    herbal medicine and can. med. together. I hope the chinese herbal medicine will help more,
    I start to take them since Oct 2008,
    so Keep in touch.
    regards
    Sue
  • westexgntleman
    westexgntleman Member Posts: 4
    Myelofibrosis
    My sister who is 54 has just been diagnosed with the disease and she is receiving blood transfusions about every 90 days. Her hematologist advised her to do a transplant, but another doctor at medical city in Dallas suggested a drug that costs $5000 a month which the medical insurance won't cover, but it will cover a bone marrow transplant. From what I have read about the disease, a transplant is the only cure but it has a lot risks, but so do drugs. I have a different blood type than she does and I am wondering if my bone marrow could still be a match. She is my baby sister and I would be willing to donate as much bone marrow as I can if I am compatible. I will pray for all of you and hope you keep my sister in your prayers. I hope that my bone marrow is a match..
  • suesue555
    suesue555 Member Posts: 25

    Myelofibrosis
    My sister who is 54 has just been diagnosed with the disease and she is receiving blood transfusions about every 90 days. Her hematologist advised her to do a transplant, but another doctor at medical city in Dallas suggested a drug that costs $5000 a month which the medical insurance won't cover, but it will cover a bone marrow transplant. From what I have read about the disease, a transplant is the only cure but it has a lot risks, but so do drugs. I have a different blood type than she does and I am wondering if my bone marrow could still be a match. She is my baby sister and I would be willing to donate as much bone marrow as I can if I am compatible. I will pray for all of you and hope you keep my sister in your prayers. I hope that my bone marrow is a match..

    Myelofibrosis
    West: Just go to get a blood test, then you will find out you are matched or not,
    then you can get over it. A lady from England who just has a bonemarrow transplant
    from her brother, he is a perfect match, she is home recovery now. Ther transplant was
    done in June 1. So, if you are perfect match, there is no risk.
    If it possible you can find the name of the medicine which cost 5,000 a month?
    I like to give the name to my doctor, to see what he says.
    Thank you.
    keep praying...........
    Regards
    sue
  • westexgntleman
    westexgntleman Member Posts: 4
    drug for myelofibrosis
    Suesue555 It is called Revlimid. Drug info here
    http://www.revlimid.com/multiple-myeloma/multiple-myeloma-revlimid.aspx
    Also some interesting info here: http://www.stemexstudy.com/
  • suesue555
    suesue555 Member Posts: 25

    drug for myelofibrosis
    Suesue555 It is called Revlimid. Drug info here
    http://www.revlimid.com/multiple-myeloma/multiple-myeloma-revlimid.aspx
    Also some interesting info here: http://www.stemexstudy.com/

    Myelofibrosis - Drug
    West, thank you for info, the stemexstudy is only up to 55, I am 60 so it won't work for me.
    As for the other site, I forward to my doctor friend, I don't understand, so he may
    explain to me better.
    Regards
    sue
  • sylvias
    sylvias Member Posts: 3
    suesue555 said:

    Myelofibrosis - Drug
    West, thank you for info, the stemexstudy is only up to 55, I am 60 so it won't work for me.
    As for the other site, I forward to my doctor friend, I don't understand, so he may
    explain to me better.
    Regards
    sue

    Myelofibrosis
    Hi suesue555,

    My husband has been diagnosised with myelofibrosis about 2 weeks ago. He is enemia and white bloods cell about 17,000. His spleen is enlarged and he is a little tired. Blood specialist says that there is no drug now that they can give him, and he is in low grade. What can we do at this time, they are going to monitor him once a month wit blood test. He had his bone marrow biopsy 1 month ago. Can we beat this and what about this chinese medicine that you were talking about. I am praying for all the one's that are going thru this. Please give me some information.

    Sylvia
  • suesue555
    suesue555 Member Posts: 25
    sylvias said:

    Myelofibrosis
    Hi suesue555,

    My husband has been diagnosised with myelofibrosis about 2 weeks ago. He is enemia and white bloods cell about 17,000. His spleen is enlarged and he is a little tired. Blood specialist says that there is no drug now that they can give him, and he is in low grade. What can we do at this time, they are going to monitor him once a month wit blood test. He had his bone marrow biopsy 1 month ago. Can we beat this and what about this chinese medicine that you were talking about. I am praying for all the one's that are going thru this. Please give me some information.

    Sylvia

    Myelofibrosis
    Sylvias: I was out of computer for couple week, sorry for the late reply,
    I have been seeing this chinese herbal medicine cancer specialist since Oct 2008,
    My spleen is normal now, I was gone to Cruise Alaska for a week, my planlete and white
    blood cells are high then before I went to Cruise, now, I have to stay home until next
    blood test which is end of October, I beleive my chinese doctor is good to keep the
    spleen at the normal level, if you like his e mail, you may want to send me an e mail
    to [email protected] then I can give you his e mail address, we are liveing
    in Calgary, AB Canada, where do you live? My doctor is gone to Vancouver for the
    long weekend.
    Keep faith, I just read a guy in Myelofibrosis section who has lived passed 10 years now.
    It is good news,it is on the same website....................
    Regards
    suesue