Myelofibrosis

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 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 suesue555@hotmail.com
Welcome to write to me any time.
Just stay happy and do not be scared.
Regards
sue

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

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

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 said:

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
suesue555@hotmail.com
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 said:

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 said:

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 said:

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 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 suesue555@hotmail.com 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