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Myelofibrosis

suesue555
Posts: 25
Joined: Dec 2008

I like any one has Myelofibrosis to contact me at my e mail address suesue555@hotmail.com
I just find out I have Myelofibrosis this August 2008
Thanks

zahalene's picture
zahalene
Posts: 680
Joined: Nov 2005

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
Posts: 25
Joined: Dec 2008

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
Posts: 1
Joined: Jan 2009

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

suesue555
Posts: 25
Joined: Dec 2008

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
Posts: 98
Joined: Jan 2009

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
Posts: 25
Joined: Dec 2008

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
Posts: 7
Joined: Mar 2009

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.

lawnmower511
Posts: 7
Joined: Mar 2009

I"ve have not been online for awhile.I"ve been getting procritt shots so far I've been able to keep my hgb around 10.7 to 11.3 .Bone marrow transplant has not been suggest yet.I have leg pain enlarge spleen and night sweats.I have it 3 years now.I am still working full time which is hard some days consider I work outside.There always hope everybody just keep swinging.

Hondo's picture
Hondo
Posts: 5927
Joined: Apr 2009

I have a different type of cancer but in the end it’s all the same, live with pain everyday and still working full time as well. Can’t afford not to work as I need insurance to help cove the medical bills and pay the house note.

I am glad to see you are posting again, so please continue and let us know how you are doing

Take care and may God bless and be with you my friend
Hondo

lawnmower511
Posts: 7
Joined: Mar 2009

I"ve have not been online for awhile.I"ve been getting procritt shots so far I've been able to keep my hgb around 10.7 to 11.3 .Bone marrow transplant has not been suggest yet.I have leg pain enlarge spleen and night sweats.I have it 3 years now.I am still working full time which is hard some days consider I work outside.There always hope everybody just keep swinging.

lawnmower511
Posts: 7
Joined: Mar 2009

I"ve have not been online for awhile.I"ve been getting procritt shots so far I've been able to keep my hgb around 10.7 to 11.3 .Bone marrow transplant has not been suggest yet.I have leg pain enlarge spleen and night sweats.I have it 3 years now.I am still working full time which is hard some days consider I work outside.There always hope everybody just keep swinging.

suesue555
Posts: 25
Joined: Dec 2008

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
Posts: 1
Joined: Apr 2009

I have created a Myelofibrosis Support Group site on FaceBook
http://www.facebook.com/groups.php#/group.php?gid=73982664441&ref=mf

suesue555
Posts: 25
Joined: Dec 2008

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
Posts: 2
Joined: Jun 2009

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
Posts: 25
Joined: Dec 2008

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
Posts: 2
Joined: Jun 2009

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
Posts: 25
Joined: Dec 2008

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
Posts: 4
Joined: Jul 2009

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
Posts: 25
Joined: Dec 2008

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

dianne428
Posts: 3
Joined: Feb 2010

I was diagnosed with MF in 2007. I have had essential thrombocythemia since 1976.
In May 2009, my spleen started to get massive and my platelets dropped. My Hemo doctor told me to get a BMT. I decided to go to the Mayo for a 2nd opinion.
There, they made all the tests I never had before (like chromosome study) and found out that I have the 5q deletion, and told me to get on Revlimid and that I have a chance to have a remission. To all the people out there, go for a 2nd opinion before you have your BMT.

westexgntleman
Posts: 4
Joined: Jul 2009

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
Posts: 25
Joined: Dec 2008

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
Posts: 3
Joined: Aug 2009

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
Posts: 25
Joined: Dec 2008

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

jamedon
Posts: 3
Joined: Sep 2009

Hi Sue & everyone

My Dad was diagnosed with MF in March of this year. He turned 58 this past April. From what I have read, I believe his condition was quite advanced when they caught it because his symptoms advanced rather quickly these past few months and he has suffered with many of the symptoms associated with the condition (IE: enlarged spleen; horrific bouts of gout, enlarged prostate etc). He had caught a cold in early December of 2008 and couldn't shake it for months. After losing approximately 30 pounds in 3 months - he went to get some tests and was diagnosed with the MF.

He has had a tough six months - he has been extremely tired and anemic. The transfusions did a lot for him at first but after a while they were not as effective. Again - I suspect his condition was a little more advanced that some of those that I have read about so far. The medications he had to take to battle each of the side effects of the condition began to multiply as each of those medications caused other side-effects and so on....the poor guy. I had encouraged him to seek out some alternative health care options also to at the very least, try and deal with the gout etc, but his Doctor was not very keen on the idea. Perhaps because his condition was more serious? Either way - we took her advice and never did get around to seeing an alternative practitioner....but I always wondered if it could have helped in some way.

We also live in the Calgary, Alberta area and we have received AMAZING support and care from the Tom Baker Cancer Center and his hemotologist here - they are so kind and wonderful and have been nothing but good to us. Dad's sisters were not a match for a BMT, but we were really, really lucky in that a non-related donor was found for him this summer. He received his transplant on the 28th of August and is still recovering in the hospital.

We are now at 2 weeks post-transplant and are waiting on the edge of our seats for the blood test results to come in each morning as the grafting is supposed to start to show results +14 of transplant - but nothing yet. The nurses said they don't get concerned until the 3rd or 4th week I guess - but I wondered if there was anyone out there who has been through this experience themselves or with a loved one that can maybe share their experience?

It has been a tough road for my Dad (and my wonderful amazingly strong mother)- and he has been so brave and strong, but I am looking for a little bit of encouragement here and hoping to hear from someone that has been through this experience and can tell us how it went for them - ie: days it took for WBC & Platelet levels to start increasing etc. I also suspect he may have GVHD (Graft vs Host Disease) and I wondered if anyone can share with me their experience with that.

I am determined to battle this thing with positivity and laugh in it's MF Face and get my Dad back!!!

God Bless each and every one of you - you are all in my prayers. Those of you still awaiting your transplants - hang in there, it will happen.

suesue555
Posts: 25
Joined: Dec 2008

Hi Jamedon: It is the best news I had heard so far, your father is the second person
who has a BMT for MF, the lady in England who has a perfect match from his brother,
so she did a BMT at June 1, she is home rest now.
Let's wait and see how well your father doing, if he can recover quickly, then there
is no need to worry, if he recovers slowly, may be he needs my chinese herbal Med.doctor
to give him som chinese herbal medicine to help him to recover faster.
You can e mail me for his address if you need it.
I am out of Bone marrow transpant clinic waiting list, my doctor said that there is very
slim chance I will find a match. Therefore, they close my file.
I have foot pain last week about 10 days, I went to get couple time acupuncture and some
chinese herbal med., now my pain is 90% gone, I think I may have gout.
Regards
suesue

mom0162
Posts: 1
Joined: Oct 2009

I was diagnosed with MF in Feb 2008. Since March 2008 I have been on Dacogen, given IV like a chemo treatment, every day for a week, then 3 weeks off. I am 47 years old. I started out with Very low hemogloin, white count and platelets. After 18 months of continous treatment, my blood counts have improved greatly. The treatments are VERY expensive ($20,000 per month). I am lucky to work for an excellent company who has great insurance, and allows me the time off for treatment. I continue to work full time, but am very tired at the end of the day. I have also developed high blood sugar, and may need to start diabetes medication. Overall though, it has been very beneficial. I am a single mom and I've been reluctant to discuss a transplant as of yet.

At this time, I feel pretty good. Short rest periods are needed to get through the day, and my feet tend to swell easily. My daughters are great shoppers (18 and 22) and I can't keep up with their all day marathons anymore, but I can now handle a couple hours.

ms_survivor
Posts: 6
Joined: Mar 2010

I just turned 51 and was diagnosed last March. My disease was very advanced. I believe, however, that I had this disease as early as 1999. I was seeing a hematologist then for low blood counts. He believed that I just had a virus that would eventually work its way out of my system and go away. In 2005, had a physical and all my counts came back normal. I think this was a fluke.
Last year, I started feeling really fatigued and out of breath. Went back to see a new hematologist and ended up having a bm biopsy. It was inconclusive until I went to the University of Chicago and had a second biopsy.
I also was on Dacogen during May, June and July of 2009. However, none of my counts improved. I also suffered from low white, red and platelet counts. Last spring and summer, I had over 50 transfusions either whole blood or platelets. After awhile, transfusions seem pretty easy. If your disease advances, it is true that the only curative option that you have is a BMT. Don't be afraid of this. I have six siblings - I am the youngest of seven - and none were a match. However, I had a perfect genetic match in the Bone Marrow Registry. I received my transplant on October 1, 2009. I came home about 5 weeks later. I don't fully have all my strength back and am currently working only 2 days a week, but what a wonderful thing. So far all my blood counts have been great - all in the normal range. I feel like myself again, or at least I will when my hair grows back.
Wish I had found this site sooner. Practically noone has ever heard of this disease - even doctors.

westexgntleman
Posts: 4
Joined: Jul 2009

Good news!! I was tested and the transplant facility said I was a complete match. My marrow can be used if my sister requires a transplant. Right now the drug, revlimid seems to be working so I guess they will put off a trans plant for now.

sheilalu
Posts: 1
Joined: Nov 2009

A good friend of mine gave me this website address so that I can talk to those who have Myelofibrosis. I just wish I knew about it months ago!

I was diagnosed in December (three days before Christmas actually) of 2008. Since this news, I have had two bone marrow biopsies and six blood transfusions. I am waiting for a bone marrow transplant -- my four siblings did not match and both my parents aren't living.

I go for blood tests every three or four weeks where up until two months ago it was every week. They transfuse me when I am at 90 for my hemoglobin. When I first went to the doctor in December it was because of lower abdominal pain and shortness of breath. My hemoglobin count came back at 70. I had two transfusions in a week. My husband and I were so dismayed with the news of this illness because it stopped a long anticipated trip from Chemainus to Calgary and of course we thought I would die.

I saw a specialist in Vancouver in February and again in late March and both times I was told that if a match were found, I would be transplanted. I gave up hope recently of this happening but my family doctor told me to not give up hope.

The phone rang awhile ago and it was from the Vancouver General Hospital. I am going to see the specialist Nov. 18. I was very disappointed it wasn't the transplant call. Oh well, I feel pretty good actually and will keep waiting. I will write about the visit to the specialist in a couple weeks. Bye for now!

suesue555
Posts: 25
Joined: Dec 2008

Sheilalu: I am confused, my hemoglobin count was 90 but my doctor never told me that I need
a blood transfusion. I have shortness of breath, and I have left side lower abominal pain,
I went to scan and they found nothing, so no one know what is wrong with my left side lower
abominal pain. Last visit to my specialist, he measured my spleen and liver, he told me that
My spleen and liver are enlarge, but there is no pain, I told my chinese Dr. he is adding some
chiese herbal med. to my daily chinese herbal med. to drink.
Last blood test, my hemoglobin is 100 now. a little bit better.
But my regular specialist did not do any thing other than gave me the same medicine for
my high blood planlete, last blood test, my high blood planlete is at normal level.
Hope to hear from you about the Vancouver dr. visit, my other problem is my white blood
cells count is very high, 7 times high then normal.
Best Regards
sue

justbychance
Posts: 8
Joined: Nov 2009

I was diagnose with myelofibrosis in April of this year 2009. I had to have blood transfusions and a splenectomy. My spleen was over 5lbs, they took a liver and lymph node biopsy and the myelofibrosis has spread to those organs also, they tried a low dosage chemo pill called revlimid and I have so many different allergies to medicines that I couldn’t take it. I got a reaction of dinner plate hives from it. I was taken off of it for 30 days and now they are going to try a low dose of hydroxyurea and see how I get alone with that. They had to remove my spleen because I was having very high fevers, losing a lot of weight, mouth sores, red blood count and platelets very low, but white count high and other different things. When they were removing it they found it had attached itself to my diaphragm for more blood supply, which was help causing me to get anemia and breathing problems which I didn’t realize at the time. Three years ago I was diagnose with breast cancer had an lumpectomy and radiation, then they found I had a factor V deficiency which cause me to have a deep vein blood clot in my leg and is being treated with warfarin, then 2 years later start having female bleeding which they done a d&c and a procedure called nova sure which none helped which was sure it would,, but they think now the warfarin and the myelofibrosis combined is not helping my problem with that it could be causing it. The symptoms that I was having with the spleen was coming and going over a year before diagnose because they was looking for something with the breast cancer. My white blood count and platelets is high right now. The revlimid was helping the platelets but the Eos was extremely high because of the reaction and the white count was getting higher. I was 48 when diagnose with myelofibrosis. Just wondering has anyone experience any symptoms like this and had to get there spleen removed and is close to my age. Please let us know. Does anyone know if there is a certain age for bone marrow transplant (someone told me some places doesn’t like to do them after age 40) and can you receive one with out a spleen.

suesue555
Posts: 25
Joined: Dec 2008

Justbychance: Sorry to hear that you have been thruought a lot compared with me,
I am sort of lucky in the way, the bone marrow transplant is good until
age of 60 that is what my doctor told me. I had taken Hydrozyurea and Anagrelide.
I am still taking Anagrelide now, I just feel very tired daily, other wise,I am o.k
some people even think I am a heavy person. Beside the Anagrelide I am also
taking a lot of chinese herbal medicine daily. It may be helpful, as long as
my condition is not getting worst. If you find a perfect match for bone marrow
the doctor will tell you that is suitable for Bone Marrow transplant or not,
no worry for now. Keep it up, and God bless you.
Regards
sue

ghaynes
Posts: 1
Joined: Dec 2009

I have had MF for almost 6 years. I manage it well and work full time.
I do take Revlimid. I have taken it for 2 1/2 years now.

The gout issue is many times resolved with Allopurinol. If you study the proces, the excess uric acid can be controlled easily. Keep uric acid below 6-8 and you have no problems. If it get above 8-10 gout will begin in one of your big toes.

Ask your GPO about it. Dr. Gilbert, now deceased, wrote a good paper on it on the MPD support site. I can find that if anyone wants a copy of it.

Gary

LPVJPSCSN
Posts: 1
Joined: Jan 2010

Gary

In 2009 December, doctors did the bone marrow biopsy and told me that I have a Myelofibrosis. Iam consulting the doctors in HuntsMan Cancer Hospital, Salt Lake City, Utah. They are in the search of finding a matching bone marrow to do Bone Marrow Transplant. Right now Iam taking Thalomid 100mg a day. Iam getting blood transfusions for every 4 weeks and Nupogen shot to stimulate white blood cells.

Please share your experiances with me and please send me Dr.Gilbert document. So Revlimed is working fine to you? Take care and god bless you.

ms_survivor
Posts: 6
Joined: Mar 2010

I am 5 months from transplant from an unrelated donor. You can see my story above. Things for me are going very well. Just this week stopped taking anti-rejection drugs to see if my new immune system can pick up the slack. Hopefully, I will not get Graft vs. Host Disease, but so far so good. If you need further details about the actual transplant process, let me know. Just found this site today, but will check back frequently.

suesue555
Posts: 25
Joined: Dec 2008

Gary: I have Gout for past 2 years, and I have twice already this year, my
right foot toe and back pain, it is so painful, it felt like fire on the bottom of
my foot, well this time it took 17 days to recover, I did not take any medicine,
My dr. said that Revlimid is not for me, I am only take high blood platlete pills
Please send me more or medicine for my Gout
Thanks
sue

lennox123
Posts: 1
Joined: Oct 2010

I have just joined the discussion. I was diagnosed in 2006. Please read the latest research for NEW TREATMENT options.

http://investor.incyte.com/phoenix.zhtml?c=69764&p=irol-newsArticle&ID=1471706&highlight=

Phase I/II Data Published in New England Journal of Medicine Demonstrate that Incyte JAK Inhibitor, INCB18424, Provides Marked and Durable Clinical Benefits in Patients with Myelofibrosis, a Rare, Life-Threatening Blood Cancer

The INCB18424 is going to Stage III Clinical Trials and getting excellent results!

Bronsons
Posts: 1
Joined: Nov 2010

Is there a support group for myelofibrosis?

julieruse
Posts: 3
Joined: Jan 2011

My husband turned 50 in August when he last gave blood (and his blood count must have been normal then) but has just been told he has high white blood cell count and high platelets and his spleen is enlarged (he went to the dr's because of the spleen aching - but didn't know what it was). We only found out two days ago and are in a state of shock at the moment. He doesn't feel bad or tired like some of you poor other people feel and he hasn't really read up about how serious this all is because I don't think he can face admitting he has tjis and dealing with telling family and friends.
I HAVE to know what to expect, because I want to help him as best I can, does anyone think this is a fast progression as his spleen is already enlarged? Has anyone considered Gerson Therapy - I am going to try him on this as soon as I can because he doesn't have his BM tests until 2 weeks and then we have another 3 week wait.

Is this an illness that takes the same time in everyone, does is depend on age etc and what does it mean if he has the JAK cell??? Is this good or bad?

I have looked a lot at causes and it seems Benzene is a likely cause for him (he is a builder and painter), I know this dopesn't help HIM but I don't undrstand why such a strong powerful man who eats really healthily, never had vaccinations, hasn't been ill snce he had malaria at 18, would suddenly get this.

Because he is so worried about upsetting his family he wants to keep this all quiet, I am finding that part hard because I need help with understanding all this new medical jargon and I'm too stressed out to take it in. Can anyone please wite to me in layman terms what is happening and is likely to happen - also he has 2 fit sisters and 3 children, 19,18 and 7, can they be possible BM donors?

Sorry to all of you out there having to deal with this horribly sad illness and if we have any significant changes with Gerson Therapy I will endeavor to let ypu all know.

I look forward to talking to someone please.
J x

Brenn
Posts: 1
Joined: Nov 2009

Julieruse, I am so sorry your husband is having to go through this. I am 58 and was diagnosed in Oct of 2009. I had an enlarged spleen, and was anemic, and had alot of left shoulder pain. After going to my family doc and an orthopedic doc, they ran some blood tests. THen I was referred to a hemotologist/oncologist and they did a bone marrow biopsy to confirm. My doctor put me on a medicine called Revlimid to reduce the spleen, and it works great. It is very expensive medicine and my insurance did not cover so the drug company qualified me for free drugs. The drug does have some (possibly) severe side effects, but I only have some minor ones. I have my blood tested every 2 months now, and right now my counts are mostly good. May I ask where you live? I live in Indiana, and go to the IU Medical hospital in INdianapolis. I have not heard of the Gerson THerapy.
If you would like to email me, my email is brenn52@tipmont.net and I could maybe give you a little more info. I see that it has been a month since your post, so maybe you have more info now?
Good luck and if you wish to email me, please do.

Debra502
Posts: 2
Joined: Mar 2011

Hi. My ex-husband has been recently diagnosed with this disease. We don't know how far the progression is. His hemoglobin has been at around 7, except for after he received a transfusion late in January, prior to the official diagnosis. He also has problems with his heart and is lately having pain in his legs. I'm fearful this may be blood clots. He said he's going to have an ultrasound for his legs next week, but I'm afraid for him to wait that long. Also, he is unemployed and is trying to qualify for SSD. He literally can't work, as he can barely walk. His spleen and his liver are enlarged as well, that's what got him to go to a doctor. I'm very afraid for him, as he has no money and is having problems paying his rent. Does anyone know if this disease qualifies him for SSD? Thanks for your help.

risoli_1
Posts: 1
Joined: Jul 2011

I was diagnosed w/ essential thrombocytosis in 2001, lately my WBC,hemoglobin and platelets went down,and just learned yesterday that i had myelofibrosis. My doctor stopped my medication and said that bone marrow transplant is the only remedy. I was really devastated thank you for this website it made me feel much better now.

dagafak
Posts: 1
Joined: Dec 2011

I was admitted to Herman hospital in Feb 1997 due to sharp abdominal pain. The MRI, CAT scan and Ultra sound both shows massive spleen size. The pain eventually went away but the hospital conducted liver biopsy and found nothing. Serveral years later, around 2006 I experienced the something. I was told to take MRI exam and the result was consistent. The same thing is also done in 2008 but this time I was sent to Leukemia specialist and tested for cancer cell. The result was negative. In 2010, the pain was nonstop and I went in and out of hospital for week. Finally sent to Methodist where they have done major surgery to reconstruct my bowls. About 15 cm is removed because it was died. This was the time I had bone marrow taken and was told Jak2 positive. Currently, I regain my wait, in good mood, no medication of any kind but my spleen is still enlarged. Therefore, I'm not sure if mylofibrosis is with me for 20, 15, 5, 2 years.

HLA4BMT
Posts: 1
Joined: Jan 2013

Hi all,

Whar,s the best cure for myelofribrosis, any one ?

I was confirmed to have myelofibrosis after bm biopsy in 2002. My platelets were around 750,000 but my HB was normal. I was given thre  daily tablets of hydrea. This kept my myelofibrosis stable.

But since 2010 the hydrea became ineffective and my plateles went up to betwe 900,000 to 1,400,000 and my HB haemoglobin went downto between 9.1 to 10.2. This made me aenemic and feels tired all the time.I was then given  5 - 6 agrylin tablets daily. But this is also ineffective. Today my platelette are stil very high and HB very low and fels lethargic and my appetite is not very good. My haemalogist at the Royal Prince Alfred Hospital, Sydney appears to be confused and unsure about my myelofibrosis

Any suggesstions as towhar I have to do ?

cvrivera19
Posts: 1
Joined: Jan 2013

hello my father has idiopathic myelofibrosis we found out yesterday 1-25-13

how do i write a story on here

what can be done? his doctor said he has to see if he qualified for the meds.

his spleen is enlarge im not sure what cause this i just pray that everything or anything can be done so this can go away

once his spleen goes to normal can we remove it and his bone norrow become normal??

is there any type of food he should avoid or should be eating

i was also reading about chinesse herbs do you know anything about that??

can a BMT remove myelofibrosis??

if anyone can please help with any answers i will thank you so much my emaiil is cvrivera19@gmail.com

BELLE2013
Posts: 1
Joined: Aug 2013

Hello,

I was diagnosted with Myolofibrosis in 2012 after 10 years of ET. I started on JAKAFI 15 mg at day one year ago. My WBC went down and my platelet went up .

Suddenly last month my platelets levels went down to 45,000 and WBC are going back very 46,000.

I have been off JAKAFI for 3 weeks now. I am waiting for my platelets to increase before readjusting the dose.

JAKAFI did miracles for me.

Does any one knows of HERBS that helps the body and the bone marrow recover.

I would really appreciate the info.

Thanks

15plusmore
Posts: 2
Joined: Apr 2013

My son is 15 Yrs. past bone marrow transplant (given at 10 months of age 1998)  this July. He had Myelofibrosis as a secondary cause of an unknown cancer.  It is crucial to get on the bone marrow registry ASAP as it can take months and years to find a match.Platelets were always low and always needed transfusions before he had the transplant.  He had full body radiation except for the lungs.  We've heard of no other cases of infant radiation to this degree but there was absolutely no other option. His spleen had already enlarged three times it's size and he was only given abt a month to live.  Chemo was given to reduce the spleen size and heave duty chemo given just before transplant to eliminate all cancer cells in body.  Constant check ups with many doctores has been a way of life, but he is a healthy happy young man at this point. He has fairly significant dental issues, as you can imagine.  Very few adult teeth, baby teeth with many cavities, has already had crowns and root canals and has spacers where no teeth exist.  He jokes alot which is a great way to endure what you must.  We tell him his bro in aero space engineering will one day buy him a "small car" and park it in his mouth (implants!).  I've been told to try to keep the teeth as long as possible, also implants can't be done till mid twenties due to continued jaw growth etc. He has cateract that have not yet developed and has what I believe is long term memory loss so struggles with school testing.  At age two he also went thru a mini stoke due to the ant- rejection meds he was on and that resulted in brain surgery to remove one clot.  He has another that was inoperable at the time due to it being directly on the brain stem (nerve center).  That clot is stablized and calcified.  He just can't hit his head! More MRI's show about 5 more very tiny clots. His growth has totally plataued at five feet...  A beautiful and wonderful 5 feet.  Growth hormone daily injections have just now ended.  Growth hormone is something that you should consider as it helps bone density -not just growth.Ask about "adult" growth hormone therapy.  Check "Foundations" that may help cover the cost.  We also pack in liquid calcium daily.  As far as we know he is the only infant who has had and survived this condition which usually effect only 70 yr. old plus.  He is a joy to our family of 8 and to everyone who meets him. Also crucial is liquid vitamins with all the extras...it is very expensive but very needed for your body.

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