Myelofibrosis
Comments
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MyleofibrosisStill Here said:Myelofibrosis
Hi Stavan,
I am still not taking medications. I go to the doctor every 3 months but as of Tuesday, I am going to a new dr. because mine has left the state. I will see what they have in store for me. My hemoglobin has been OK tho the red count is down in the low normal, I started taking vitamins with iron. It is just the white count & enlarge spleen that is the problem. There is a good website about the disease from mayo clinic. My doctor told me years ago not to believe everything you read on the internet but is hard to stay off when there is no one to talk to.. Keep in touch. I will let you know what the new Doctor says. Where do you live?
I am so sorry it took me so long to get back to you. I live in Georgia. I have an appointment next week at the Mayo Clnic. How did everything go with your new doctor? Ill let you know how my appointment go next week. Ive been trying to keep my mind busy. I know how it is not to have anyone to talk to. My husband wants me not to worry. The world can be coming from under his feet nothing moves him but i am the opposite. Where do you live? I0 -
Myelofibrosisstavan said:myelofibrosis
Hi, i was just diagnosed 2 days ago. I am 32 years old. very scared. i have 3 children. Did anyone respond to you about having myelofibrosis for over 5 years. In every thing i read that's what i see but it seems like very few people live longer i guess it depends on the person. How are you doing now?
Hi Stavan,
I am sorry for your recent diagnosis, I am sure it was frightening for you to find out you have this disease. I remember when my sister was diagnosed over 16 yrs ago, yep, 16 years. I thought she would be gone within 5 yrs. She has been stable for this whole time, worked fulltime and has felt pretty normal. NOTHING has stopped her from doing things that she enjoys. She is occassionally tired but she paces herself.
She doesn't like to talk about her disease so I can't get much information out of her. She is stubborn that way.
Have faith, keep in touch with others, get information, get to know your body and your limits. Be aware of your labwork, keep records, ask questions, plan ahead, get family to get tested to see if they are a match in case you need a bone marrow transplant. My family got tested, I am unfortunately a match but my older sister is IN CASE my younger sister needs one. NOT YET though, she is stable for now. So hang in there Stavan, there are thousands of people with this who live a long productive life. Enjoy life,Good luck to you, Beth0 -
Myleofibrosisbethevans said:Myelofibrosis
Hi Stavan,
I am sorry for your recent diagnosis, I am sure it was frightening for you to find out you have this disease. I remember when my sister was diagnosed over 16 yrs ago, yep, 16 years. I thought she would be gone within 5 yrs. She has been stable for this whole time, worked fulltime and has felt pretty normal. NOTHING has stopped her from doing things that she enjoys. She is occassionally tired but she paces herself.
She doesn't like to talk about her disease so I can't get much information out of her. She is stubborn that way.
Have faith, keep in touch with others, get information, get to know your body and your limits. Be aware of your labwork, keep records, ask questions, plan ahead, get family to get tested to see if they are a match in case you need a bone marrow transplant. My family got tested, I am unfortunately a match but my older sister is IN CASE my younger sister needs one. NOT YET though, she is stable for now. So hang in there Stavan, there are thousands of people with this who live a long productive life. Enjoy life,Good luck to you, Beth
Thanks its always comforting to hear some good news. How old is your sister? My doctor said it just depends so i'm going to try and stay positive and trust God to do the rest.0 -
for Sue sue: name of medicine?suesue555 said:Myelofibrosis
Still Here and Stavan:
If you go to the Discussion Boards, Long term effective, Myelofibrosis
there are few people post their comment and new medicine.........
I am so glad Still here is still here, that is what I like to know too,
My chinese herbal medicine cancer specialist has been given me chinese medicine
that will help my spleen keeps normal, so far, I have not have found any doctor treated
Myeloffibrosis yet, my blood specialist is only given me the same medicine for
my high blood planate, which I have been taking for last 19 years.............
Regards
suesue
Hi Sue Sue,
I am glad you are doing so well. What is the name of the medicine that you have been on for 19yrs? and what is the name of the chinese herb? Does it shrink the spleen? Have you had side effects with the meds?
Thank you for sharing your story, it really helps others so much, Continued good health, Beth0 -
MYelofibrosisstavan said:Myleofibrosis
Thanks its always comforting to hear some good news. How old is your sister? My doctor said it just depends so i'm going to try and stay positive and trust God to do the rest.
HI Stavan, my sister is 52yrs. old. One other thing I forgot to tell you was, please share this with family and friends. You absolutely need the emotional support through this ordeal. It is not easy going through this by yourself. Have someone go with you to the Dr. and for bone marrow biopsies. It's always so helpful to have a special family or friend there with you. Not only will they be a support for you but they can be an extra set of ears for information the Dr. is giving you., there is a lot of new confusing information to absorb. You don't have to be alone with this. Beth0 -
interferon alpha treatmentsuesue555 said:Myleofibrosis
Beth: The medicine I am taking now is called Anagrelide and the chinese med. I do not know
what they call in English. I do not know is there any side effect or not ? I am doing o.k.
Regards
sue
Hi
I just joined today. I started with essential thrombocythemia (too many platelets), diagnosed in 2005. Treated with Anagrelide until March '08, but was losing confidence in my doctor. Switched to an oncologist/hematologist at NYU. He seems very good. He did a BM biopsy, and confirmed myelofibrosis. I am 55, and have been told that a bone marrow transplant is not feasible--25%chance of survival.
We weaned me off of Anagrelide, and began treatment with interferon alpha injections. Very rough start, but after 8 months it is getting more tolerable. Lots of side effects, if anyone is interested or is also treating with interferon, I would like to share info.
best to all0 -
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.0 -
Myelofibrosissuesue555 said:similar case
Hello,
My name is Sue and I have been diagosed with Myelosfibrosis since August 2008. I also can not find any matches for bone marrow transplant. I have also have high blood platelets over 1.2 million. I have been takinng the same medicine as you for 18 years. The doctor had infromed me that by the age of 65 years of age all my bone marrow with deterioted. I also tranformed from ET to Myelosfibrosis I am currently 59 years now. For 2 months I have been taking Canadian and chinese herbs for 2 months. In the middle of January I will know if the herbs have been helping. Feel free to contact me at suesue555@hotmail.com I am looking forward from hearing from you.
Hello Sue
I have been diagnosed with Mylefibrosis since June 2009, I am 61 years old, so bone marrow transplant is out of the question.
I am taking thalidomide, prednisone and an injection of Aranesp every three week and my hemoglobin, platelets are under control at this point.
Please let me know about the chinese herbs.
Hope you are doing better.0 -
Myelofibrosis-2010- April 29Shery said:My fiance was diagnose with Myelofribrosis in 1995. He is currently blood monitoring. (platelet are plentiful! Hemoglobin is falling...currently 93) He will have a BMT (brother is the donor, most thankful for the match) when the Dr. decides it is time. His spleen is still intact and they will take it out in prep for BMT or before if it gets bigger. So far, his counts seem to be falling at a steady pace, but we pray every day for advancement in BMT's. They say the minute his hgb hits 80 (I question that, apparently if you require tranfusions, it weakens the immune system) he will be set up for the transplant. Brad is 48 in a few weeks. He works (an electrician so long days) and only seems to be mildly tired. As he puts it, "I only take one stair at a time instead of 2". Brad doesn't much like to discuss his MF, however if you have any questions that I can help you with, or even as outside support, I would be happy to.
Shery
I am a 36 yr old just told yesterday about the diagnosis. I had gone for routine physical when my doctor found high platelet counts.I subsequently had Bone marrow biopsy which confirmed Primary Idiopathic myelofibrosis. I am at a loss- My hemato-oncologist had no answers for me. I am still completely asymptomatic.I am unsure about my options and survival.The uncertanity is killing me, Did your fiance start of as completely asymptomatic?.Where would you be getting the transfusion done? How are you all coping?. I have a 7 yr old. I hope I live long to see him grow.
faithhusain0 -
Information re Myelofibrosislahicks said:Primary Myelofibrosis
I was recently diagnosed i am 34 with 3 kids my spleen in enlarged and so is my liver. I really do not know much about this disease could anyone give some advice of things to look for our ask about in my doctors appointment?
Dear lahicks:
You may have already found the information you requested. But just in case, perhaps this website might be helpful:
http://www.mayoclinic.com/health/myelofibrosis/DS008860 -
Stem Cell Transplantsabbyspal said:Information re Myelofibrosis
Dear lahicks:
You may have already found the information you requested. But just in case, perhaps this website might be helpful:
http://www.mayoclinic.com/health/myelofibrosis/DS00886
My mother had myelofibrosis and MDS at the same time, she was 64 and had a de novo form of MF and MDS...meaning, a secondary type of Myleofibrosis/MDS since they were caused by Chemotherapy and Radiation, a rare side effect if you will. This meant that she wouldn't get the same or lasting benefits from treatments or transfusions,plus her age and of course there was the fact that she had two types of Myelodysplastic disorders. So I wanted to make sure I was clear about the range of extreme difficulty in treating her before I said anything else.
She eventually had to find a second oncologist that had experience with Myelofibrosis and when she did that, he helped her qualify for a stem cell transplant- even at her age and with the other factors that seemed to be stacked against her. Her brother was a match to be a donor and I think that is why she was approved. Of course this was considered to be a clinical trial, as all stem cell transplants may still be...but I just wanted to let those who are diagnosed a little later in life know that a transplant isn't always entirely out of the question because of age. If you do not have a Specialist that can help you do that, then it never hurts to get a second opinion. Especially if you have a sibling...and even better: a sibling donor that is the opposite sex from the patient.
This condition can be described as a series of ups and downs. Time can go by with no incident and sometimes there can be sudden changes. There is no rhyme or reason to progression, it's difficult to "stage" and I have seen first hand at how frustrating this is, when my mom wanted more than "watch and wait".
I hope I am not out of line for posting this, since I don't have a total success story to share,but this rare diagnosis made an impact on my family and I hope for the best, for anyone experiencing this. I was a care giver for a long time and I never found another family caregiver for this particular illness on a message board, so thats another reason why I wanted to come back to this site. Also, everyone was wrong about estimating a window of "time" for her and "medium ranges" on the web were not even close. Probably out of date and based on a time when the only treatment options were transfusions.0 -
myelofibrosis
jubilee I also had a splenectomy at age 49,, but still take treatment ,, I like to know how are you doing?0 -
Myelofibrosislahicks said:Primary Myelofibrosis
I was recently diagnosed i am 34 with 3 kids my spleen in enlarged and so is my liver. I really do not know much about this disease could anyone give some advice of things to look for our ask about in my doctors appointment?
Hi lahicks,
Sorry to hear of your recent dx of MF. I am 65 and was diagnosed with MF in Oct. 2005. Most of the research I have done gives a prognosis of 5-15 years survival rate with a median range of 5 years. I have seen a lot of survivors (on message boards and support sites) living beyond this range so there is always hope that you will be one of the lucky ones. I am into my 5th year and have just recently begun to develop symptoms. I've had an enlarged spleen for a couple of years with no issues, but now it has begun to hurt so don't know if it is bigger or not. I have begun to have a lot of bone pain mostly in my legs, knees and hip/pelvic area. This is due to the scaring of my bone marrow which is an end result of the disease. I've been on pain meds but now need more. My hematologist has started me on Hydroxeurea to see if that will ease the pain and reduce my spleen size. The only blood counts that were always off in me (other than hgb-Anemia) is my RBC. It is low. There is a lot of information about the disease on the internet. You should do some research and maybe you will find a few answers there. It is a rare disease and affects everyone differently, so it is unpredictable. Not much in the way of treatment either. You are young so a bone marrow transplant may be your best bet. That is the only thing that will cure it. Hope you can find a match, maybe someone in your family. Be sure to ask your doctor if that would be an option for you. I am too old and it is too risky for me to consider a transplant. I am here if you want to ask me any other questions. I've been looking for someone else with this disease....we all need support and understanding. Let me know if I can help in any way. Good luck and may God bless you with peace and strength to get you through this valley. I will keep you and your family in my prayers.0 -
myelofibrosisjustbychance said:myelofibrosis
jubilee I also had a splenectomy at age 49,, but still take treatment ,, I like to know how are you doing?
My 50 year-old husband was diagnosed this week with myelofibrosis. He feels great and if he hadn't had a routine blood test he wouldn't know he was sick. I found a number of the testimonies here of people that have lived for years with myelofibrosis in a stable holding pattern very encouraging. Are any of you doing anything special beyond tracking with blood tests to keep the disease at bay and from progressing?
Looking forward to hearing your comments.0 -
Hello.. My dad was
Hello.. My dad was diagnosed with Myelofibrosis in 1988, he was 39 years old. He passed away in 1991. I try to up on what has changed for treatment. There was not much available at that time. I watched my dad go through every symptom of his terrible illness. My mom use to write letters to a few people in the U.S. that were watching someone they loved go through this as well. If you have any questions at all, I do have a great deal of knowledge..0 -
MFspalazini said:Hello.. My dad was
Hello.. My dad was diagnosed with Myelofibrosis in 1988, he was 39 years old. He passed away in 1991. I try to up on what has changed for treatment. There was not much available at that time. I watched my dad go through every symptom of his terrible illness. My mom use to write letters to a few people in the U.S. that were watching someone they loved go through this as well. If you have any questions at all, I do have a great deal of knowledge..
Hi Spalazini, I am 33 in a couple weeks and my doctors believe I have MF. I was diagnosed 6 years ago with Polycythemia vera and have been told I have been an interesting case. My platelets at one point were up and over 3000 for example. My platelets have dropped to 300 which yes is normal, but not for someone with PV, my spleen and liver are enlarged so he is saying that I have probably progressed to MF, which we knew was a possibility, I just didnt think this soon. I had a CT scan done to check all kinds of thins including my bones. I was told that I have spots on my bones... no idea what that means, but its scaring the crap out of me. I was hoping I could get more information that what I am finding online... I understand its scarring of the bones, and I understand why. I just would like to know what to expect.... can anyone help?0 -
Oh my goodness, I am scaredSarahMel said:MF
Hi Spalazini, I am 33 in a couple weeks and my doctors believe I have MF. I was diagnosed 6 years ago with Polycythemia vera and have been told I have been an interesting case. My platelets at one point were up and over 3000 for example. My platelets have dropped to 300 which yes is normal, but not for someone with PV, my spleen and liver are enlarged so he is saying that I have probably progressed to MF, which we knew was a possibility, I just didnt think this soon. I had a CT scan done to check all kinds of thins including my bones. I was told that I have spots on my bones... no idea what that means, but its scaring the crap out of me. I was hoping I could get more information that what I am finding online... I understand its scarring of the bones, and I understand why. I just would like to know what to expect.... can anyone help?
Oh my goodness, I am scared to death. I was diagnosed with idiopathic myelofibrosis at age 18. I am currently 25. My platelet count was one million, and I was infused with iron which dropped it down to 600-700 thousand. I've had that steady number for about four years. Now my count is 145 thousand, down from 200 something thousand last month. I'm scared to death as this looks like scared to death as this looks like progression. Most doctors can't believe that I even have this horrible disease because of my age. They all say I'm the youngest they've ever seen with MF. I have an enlarged spleen and anemia. My red and white count is low but normal for MF an my lmy liver is normal. If anyone knows anything bout this condition to better assist, please email me, charnised@yahoo.com. I have a five year old, seven-month old, and I am five months pregnant with my third. I need to be here for my children's lives0
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