Myelofibrosis

2

Comments

  • jamedon
    jamedon Member Posts: 3
    #22
    suesue555 said:

    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

    Myelofibrosis
    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
    suesue555 Member Posts: 25
    #23
    jamedon said:

    Myelofibrosis
    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.

    Myelofibrosis
    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
    mom0162 Member Posts: 1
    #24
    suesue555 said:

    Myelofibrosis
    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

    myelofibrosis
    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.
  • westexgntleman
    westexgntleman Member Posts: 4
    #25
    suesue555 said:

    Myelofibrosis
    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

    Myelofibrosis
    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
    sheilalu Member Posts: 1
    #26
    Myelofibrosis
    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
    suesue555 Member Posts: 25
    #27
    sheilalu said:

    Myelofibrosis
    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!

    Myelofibrosis
    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
    justbychance Member Posts: 8
    #28
    suesue555 said:

    Myelofibrosis
    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

    Myelofibrosis
    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
    suesue555 Member Posts: 25
    #29
    justbychance said:

    Myelofibrosis
    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.

    Myelofibrosis
    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
    ghaynes Member Posts: 1
    #30
    Gout With Myelofibrosis
    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
  • dianne428
    dianne428 Member Posts: 3
    #31
    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
    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.
  • LPVJPSCSN
    LPVJPSCSN Member Posts: 1
    #32
    ghaynes said:

    Gout With Myelofibrosis
    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

    Now Iam MYELOFIBROSIS patient
    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
    ms_survivor Member Posts: 6
    #33
    mom0162 said:

    myelofibrosis
    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.

    myelofibrosis
    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.
  • ms_survivor
    ms_survivor Member Posts: 6
    #34
    LPVJPSCSN said:

    Now Iam MYELOFIBROSIS patient
    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.

    Don't Worry
    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
    suesue555 Member Posts: 25
    #35
    ghaynes said:

    Gout With Myelofibrosis
    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

    Gout with MF
    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
    lennox123 Member Posts: 1
    #36
    Myelofibrosis
    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
    Bronsons Member Posts: 1
    #37
    lennox123 said:

    Myelofibrosis
    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!

    Is there a support group for
    Is there a support group for myelofibrosis?
  • julieruse
    julieruse Member Posts: 3
    #38
    Bronsons said:

    Is there a support group for
    Is there a support group for myelofibrosis?

    My husband
    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
    Brenn Member Posts: 1
    #39
    julieruse said:

    My husband
    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

    myelofibrosis
    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
    Debra502 Member Posts: 2
    #40
    Brenn said:

    myelofibrosis
    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.

    myelofibrosis diagnosis/disability
    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
    risoli_1 Member Posts: 1
    #41
    Myelofibrosis
    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.

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