CancerCompass message board discussion started by JuJusdaughter on 2/19/2008 http://www.cancercompass.com/message-board/message/all,21121,0.htm Thu, 24 Jul 2008 00:00:00 GMT Thu, 24 Jul 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I posted this on a couple other threads but realized I went about this the wrong way and needed to just start a new one so it would be seen right away! My mother has myelofibrosis. She has been having re-occouring nosebleeds from 2-8 hours sometimes. This week she will have her second bone marrow test because her platelets were too low even after a recent transfusion. So, if the disease is progressing, what are the treatment options?  She is not able to have a transplant either...if it ever came to that, so I was hopeful that someone here would have a little information to share. Also, has anyone heard of heavy nose bleeding for hours being a symptom? and how can we make it stop quickly? She has to hold her head up and pinch the bridge of her nose, but then the blood will drain and start to choke her. It's just an awful experience for her and there has got to be a better way!  Thank you for any help, I don't have siblings, just a couple of family members that can help out and talk to about this.  JuJusdaughter Tue, 19 Feb 2008 00:00:00 GMT  On 2/19/2008 JuJusdaughter wrote:I posted this on a couple other threads but realized I went about this the wrong way and needed to just start a new one so it would be seen right away! My mother has myelofibrosis. She has been having re-occouring nosebleeds from 2-8 hours sometimes. This week she will have her second bone marrow test because her platelets were too low even after a recent transfusion. So, if the disease is progressing, what are the treatment options?  She is not able to have a transplant either...if it ever came to that, so I was hopeful that someone here would have a little information to share. Also, has anyone heard of heavy nose bleeding for hours being a symptom? and how can we make it stop quickly? She has to hold her head up and pinch the bridge of her nose, but then the blood will drain and start to choke her. It's just an awful experience for her and there has got to be a better way!  Thank you for any help, I don't have siblings, just a couple of family members that can help out and talk to about this.  There is a company called Incyte that is in the late phases of trials for a JAK2 inhibitor that has shown "rapid and profound clinical benefits in Myelofibrosis patients."   http://investor.incyte.com/phoenix.zhtml?c=69764&p=IROL- Hopefully, the inhibitor will pass trials and become available soon. Other than that, there is no truly effective treatment besides a bone marrow transplant.  Focusing on quality of life is most important.  As for the nose bleeds, my mother had them but I don't recall it being as serious as what you describe.  I would discuss it with her doctor on the next visit.   Nocera Thu, 21 Feb 2008 00:00:00 GMT Indeed, nose bleeds are definitely a symptom of MF.  Immediatly stop taking any aspirin, as that will contribute very much to this symptom.Also she should hold her head upright, in a sitting position to prevent strangulation.I have had bleeds that bled profusely for seven hours. Dr.Agavon Thu, 21 Feb 2008 00:00:00 GMT  On 2/21/2008 Dr.Agavon wrote:Indeed, nose bleeds are definitely a symptom of MF.  Immediatly stop taking any aspirin, as that will contribute very much to this symptom.Also she should hold her head upright, in a sitting position to prevent strangulation.I have had bleeds that bled profusely for seven hours.Thank you Dr. Agavon. She has stopped taking aspirin recently because the bleeding started the day after Christmas. That's when she found out that aspirin actually kills plateltes...or actually remembered :) she has a tough time with short term memory loss.   She did well during her biopsy, though and I guess we will have some answers early next week.  As for holding her head upright to aviod choking, she does that, but she's still in misery.  She reluctantly started taking vicoprofen for leg pain and this has helped her tremendously with the little things that we all take for granted, like sleeping through the night.  Best wishes to you for  good health, and thanks again for letting me know about this particular symptom.   JuJusdaughter Fri, 22 Feb 2008 00:00:00 GMT  On 2/21/2008 Nocera wrote: On 2/19/2008 JuJusdaughter wrote:I posted this on a couple other threads but realized I went about this the wrong way and needed to just start a new one so it would be seen right away! My mother has myelofibrosis. She has been having re-occouring nosebleeds from 2-8 hours sometimes. This week she will have her second bone marrow test because her platelets were too low even after a recent transfusion. So, if the disease is progressing, what are the treatment options?  She is not able to have a transplant either...if it ever came to that, so I was hopeful that someone here would have a little information to share. Also, has anyone heard of heavy nose bleeding for hours being a symptom? and how can we make it stop quickly? She has to hold her head up and pinch the bridge of her nose, but then the blood will drain and start to choke her. It's just an awful experience for her and there has got to be a better way!  Thank you for any help, I don't have siblings, just a couple of family members that can help out and talk to about this.  There is a company called Incyte that is in the late phases of trials for a JAK2 inhibitor that has shown "rapid and profound clinical benefits in Myelofibrosis patients."   http://investor.incyte.com/phoenix.zhtml?c=69764&p=IROL- Hopefully, the inhibitor will pass trials and become available soon. Other than that, there is no truly effective treatment besides a bone marrow transplant.  Focusing on quality of life is most important.  As for the nose bleeds, my mother had them but I don't recall it being as serious as what you describe.  I would discuss it with her doctor on the next visit.  Thanks for passing on that new drug info.  I hope that will become available soon for those who cannot withstand transplants as a treatment option.  JuJusdaughter Fri, 22 Feb 2008 00:00:00 GMT  On 2/19/2008 JuJusdaughter wrote:I posted this on a couple other threads but realized I went about this the wrong way and needed to just start a new one so it would be seen right away! My mother has myelofibrosis. She has been having re-occouring nosebleeds from 2-8 hours sometimes. This week she will have her second bone marrow test because her platelets were too low even after a recent transfusion. So, if the disease is progressing, what are the treatment options?  She is not able to have a transplant either...if it ever came to that, so I was hopeful that someone here would have a little information to share. Also, has anyone heard of heavy nose bleeding for hours being a symptom? and how can we make it stop quickly? She has to hold her head up and pinch the bridge of her nose, but then the blood will drain and start to choke her. It's just an awful experience for her and there has got to be a better way!  Thank you for any help, I don't have siblings, just a couple of family members that can help out and talk to about this.  Hello... I hoped that I could help... Your post touched my heart, and today I pray for  you and your mom.  I have no other help -- only questions and if you do not mind, might you or others help me understand a little more about myelofibrosis? I tried to find info at the Mayo Clinic site.  I understand a little more, but what was not mentioned is how long a person can have this and how slow or how fast it progresses.  In the marrow, from one single morphed stem cell, scar tissue invades creating abnormal, sick, few and overpopulation of various cells... (in a nut shell?)  How long does this process take before complications become extreme?  I imagine that initial onset and early symptoms might be fatigue, aches and pains.... can anyone tell me how long this early stage usually lasts?  Does it vary?   Thank-you for your time.  I love the love between my children and me.  How sweet you love for your mother. In LOVE sincereAnotherMother   PeaceLearning Thu, 13 Mar 2008 00:00:00 GMT Hello... I hoped that I could help... Your post touched my heart, and today I pray for  you and your mom.  I have no other help -- only questions and if you do not mind, might you or others help me understand a little more about myelofibrosis? I tried to find info at the Mayo Clinic site.  I understand a little more, but what was not mentioned isHello... I hoped that I could help... Your post touched my heart, and today I pray for  you and your mom.  I have no other help -- only questions and if you do not mind, might you or others help me understand a little more about myelofibrosis? I tried to find info at the Mayo Clinic site.  I understand a little more, but what was not mentioned is how long a person can have this and how slow or how fast it progresses.  In the marrow, from one single morphed stem cell, scar tissue invades creating abnormal, sick, few and overpopulation of various cells... (in a nut shell?)  How long does this process take before complications become extreme?  I imagine that initial onset and early symptoms might be fatigue, aches and pains.... can anyone tell me how long this early stage usually lasts?  Does it vary?   Thank-you for your time.  I love the love between my children and me.  How sweet you love for your mother. In LOVE sincereAnotherMother  Private Reply Reply to This Message                                                                                                                                     Stages: this does vary from patient  to patient really. My mother's early symptoms were  lack of energy, unusual brusing (like someone had rubbed soot into her skin), noticable wieght loss in a very short time and leg pain. She may have been developing these problems for a while before she was diagnosed. Her Cause: A chemotherapy medicine used to treat breast cancer in addition to radiation. This combo has been determined to cause this disease. But what are you gonna do? You take your chemo and radiation treatments and you kick cancers butt! That's what ya DO! This doesn't mean this will happen to everyone! It's still a rare disease ok?  Other possibilities:  prologned exposure to benzene can cause this disorder too. Commercial detergents, bleach, gasoline, and you can even find it in the tobacco of our cigarettes. They put that poison on the leaves so the tobacco will not burn up to fast!   I  still haven't figured out how that is legal!Your next quesitons:How slow/how fast /how long: With my mothers situation she had bout six months before she required blood transfusions at that time she delt with leg pain, night sweats and bruising Now in her second year of mainating, she has one transfusion every 3 to 4 weeks, and recently had to add plateletts transfusion along with the red blood cell transfusion.  She now keeps her leg pain under control with vicoprofen. The nose bleeds have not been as bad lately, since she will never take asprin again.  Now, she also gets fever when her leg pain is bad. The nurse had to give her delauded during her last transfusion. She wasn't having a reaction or anything, thats just the disease flaring up when usualy no one is around when that happens. Her other symptoms that weren't there in the first six months were;loss of concentration,short term memory loss and confusion. She is stable right now, but you can see that the disease has progressed over 2 years. I say stable because her liver and spleen show no signs of enlargement, and her symptoms are these that I mentioned and there are no more to add to the list right now.So this is the hardest part for caregivers...you never know when the disease will begin to transmutate. I hope this helps you in some way!I am amazed at her innerstrength, even though she has pain that constantly reminds her of the inevitable. :(Private Reply Reply to This Message JuJusdaughter Fri, 14 Mar 2008 00:00:00 GMT  On 3/14/2008 JuJusdaughter wrote:Hello... I hoped that I could help... Your post touched my heart, and today I pray for  you and your mom.  I have no other help -- only questions and if you do not mind, might you or others help me understand a little more about myelofibrosis? I tried to find info at the Mayo Clinic site.  I understand a little more, but what was not mentioned isHello... I hoped that I could help... Your post touched my heart, and today I pray for  you and your mom.  I have no other help -- only questions and if you do not mind, might you or others help me understand a little more about myelofibrosis? I tried to find info at the Mayo Clinic site.  I understand a little more, but what was not mentioned is how long a person can have this and how slow or how fast it progresses.  In the marrow, from one single morphed stem cell, scar tissue invades creating abnormal, sick, few and overpopulation of various cells... (in a nut shell?)  How long does this process take before complications become extreme?  I imagine that initial onset and early symptoms might be fatigue, aches and pains.... can anyone tell me how long this early stage usually lasts?  Does it vary?   Thank-you for your time.  I love the love between my children and me.  How sweet you love for your mother. In LOVE sincereAnotherMother  Private Reply Reply to This Message                                                                                                                                     Stages: this does vary from patient  to patient really. My mother's early symptoms were  lack of energy, unusual brusing (like someone had rubbed soot into her skin), noticable wieght loss in a very short time and leg pain. She may have been developing these problems for a while before she was diagnosed. Her Cause: A chemotherapy medicine used to treat breast cancer in addition to radiation. This combo has been determined to cause this disease. But what are you gonna do? You take your chemo and radiation treatments and you kick cancers butt! That's what ya DO! This doesn't mean this will happen to everyone! It's still a rare disease ok?  Other possibilities:  prologned exposure to benzene can cause this disorder too. Commercial detergents, bleach, gasoline, and you can even find it in the tobacco of our cigarettes. They put that poison on the leaves so the tobacco will not burn up to fast!   I  still haven't figured out how that is legal!Your next quesitons:How slow/how fast /how long: With my mothers situation she had bout six months before she required blood transfusions at that time she delt with leg pain, night sweats and bruising Now in her second year of mainating, she has one transfusion every 3 to 4 weeks, and recently had to add plateletts transfusion along with the red blood cell transfusion.  She now keeps her leg pain under control with vicoprofen. The nose bleeds have not been as bad lately, since she will never take asprin again.  Now, she also gets fever when her leg pain is bad. The nurse had to give her delauded during her last transfusion. She wasn't having a reaction or anything, thats just the disease flaring up when usualy no one is around when that happens. Her other symptoms that weren't there in the first six months were;loss of concentration,short term memory loss and confusion. She is stable right now, but you can see that the disease has progressed over 2 years. I say stable because her liver and spleen show no signs of enlargement, and her symptoms are these that I mentioned and there are no more to add to the list right now.So this is the hardest part for caregivers...you never know when the disease will begin to transmutate. I hope this helps you in some way!I am amazed at her innerstrength, even though she has pain that constantly reminds her of the inevitable. :(Private Reply Reply to This Message Thank-you for your reply.  I am still curious, though, about time... Is this cancer 2, 5, 10 year expectancy?  Or is it totally unpredictable? On another note, and more important, I want to tell you that you have touched my heart with your note...  So with that, I write you again.  I shall give you a little background so you know that my compassion and thoughts for you are not without some bases of understanding and empathy for both you and your mother. I am currently being tested at SCCA for "something".  Low grade fevers for over 3 years, great fatigue, pain "all over" (like I have the bad flu all the time).  Night sweats come and go -- but when they come, I soak the whole side of our bed.  Joint pain comes and goes and it can be quite difficult some days.  There are some days within a week that I might feel a wee bit better, but overall, in the last three years, I have felt worse.  My spleen is enlarged, and so too is my liver, though mildly so.  My T cells are increased -- my immune system is compromised and so when I get sick with a cold, recently it develops into pneumonia (twice in the last 7 months.)  I have increased lymphocytes... I pray I will have a definitive diagnosis soon.  That said, I have had to learn to live with pain and fatigue for over 3 years, and so bad that I can't work and I need help with the house work even.  Just loading the dishwasher creates sweaty, need to lie down, fatigue.  I have learned that who I am is not what I do.  I used to be able to do so much.  I used to be a sculptor, and then I went back to school when my youngest started school, and became a nurse.  I was able to work full time for just over a year (and I LOVED it) before "mind over matter" did not cut it anymore. No matter what I do, I have not been able to "get better".  I am by nature, more of a doer and caregiver than one who needs (or easily asks for) help.  My body has transformed creating for my spirit roads to unfamiliar places of BEING.I love caregivers.  I love my children and husband.  More and more I believe that such love is a gift, not only for the sick, but also (and maybe more so) for the caregivers.  I see this more clear now that I am not able to "do" care giving. Caregivers (you) are such a blessing!  Your acts of love and concern for your mother are treasures from the Heart of all hearts.  You are "being beauty" in the help and support you give.   In reality such care creates a collaborative work of art, and a beautiful harmonic song, seen and heard in, what I call, "the in-between spaces" between you and your mother.   Every moment you spend with your mother, loving and caring, thinking and praying, you participate in eternity -- forever.  Such acts are not only for the here and now.  Such acts spin silver and gold cords to and from the Giver.  So, when you write, "I am amazed at her [your mother] innerstrength, even though she has pain that constantly reminds her of the inevitable."   I write:  I am amazed at your inner strength; in and through your love and care for your mother, may you be reminded often that it is "inevitable" that you are participating in the Eternal Gift of everlasting love.  God is Love... Another MotherThank-you for your reply.  I am still curious, though, about time... Is this cancer 2, 5, 10 year expectancy?  Or is it totally unpredictable? On another note, and more important, I want to tell you that you have touched my heart with your note...  So with that, I write you again.  I shall give you a little background so you know that my compassion and thoughts for you are not without some bases of understanding and empathy for both you and your mother. I am currently being tested at SCCA for "something".  Low grade fevers for over 3 years, great fatigue, pain "all over" (like I have the bad flu all the time).  Night sweats come and go -- but when they come, I soak the whole side of our bed.  Joint pain comes and goes and it can be quite difficult some days.  There are some days within a week that I might feel a wee bit better, but overall, in the last three years, I have felt worse.  My spleen is enlarged, and so too is my liver, though mildly so.  My T cells are increased -- my immune system is compromised and so when I get sick with a cold, recently it develops into pneumonia (twice in the last 7 months.)  I have increased lymphocytes... I pray I will have a definitive diagnosis soon.  That said, I have had to learn to live with pain and fatigue for over 3 years, and so bad that I can't work and I need help with the house work even.  Just loading the dishwasher creates sweaty, need to lie down, fatigue.  I have learned that who I am is not what I do.  I used to be able to do so much.  I used to be a sculptor, and then I went back to school when my youngest started school, and became a nurse.  I was able to work full time for just over a year (and I LOVED it) before "mind over matter" did not cut it anymore. No matter what I do, I have not been able to "get better".  I am by nature, more of a doer and caregiver than one who needs (or easily asks for) help.  My body has transformed creating for my spirit roads to unfamiliar places of BEING.I love caregivers.  I love my children and husband.  More and more I believe that such love is a gift, not only for the sick, but also (and maybe more so) for the caregivers.  I see this more clear now that I am not able to "do" care giving. Caregivers (you) are such a blessing!  Your acts of love and concern for your mother are treasures from the Heart of all hearts.  You are "being beauty" in the help and support you give.   In reality such care creates a collaborative work of art, and a beautiful harmonic song, seen and heard in, what I call, "the in-between spaces" between you and your mother.   Every moment you spend with your mother, loving and caring, thinking and praying, you participate in eternity -- forever.  Such acts are not only for the here and now.  Such acts spin silver and gold cords to and from the Giver.  So, when you write, "I am amazed at her [your mother] innerstrength, even though she has pain that constantly reminds her of the inevitable."   I write:  I am amazed at your inner strength; in and through your love and care for your mother, may you be reminded often that it is "inevitable" that you are participating in the Eternal Gift of everlasting love.  God is Love... Another MotherThank-you for your reply.  I am still curious, though, about time... Is this cancer 2, 5, 10 year expectancy?  Or is it totally unpredictable? On another note, and more important, I want to tell you that you have touched my heart with your note...  So with that, I write you again.  I shall give you a little background so you know that my compassion and thoughts for you are not without some bases of understanding and empathy for both you and your mother. I am currently being tested at SCCA for "something".  Low grade fevers for over 3 years, great fatigue, pain "all over" (like I have the bad flu all the time).  Night sweats come and go -- but when they come, I soak the whole side of our bed.  Joint pain comes and goes and it can be quite difficult some days.  There are some days within a week that I might feel a wee bit better, but overall, in the last three years, I have felt worse.  My spleen is enlarged, and so too is my liver, though mildly so.  My T cells are increased -- my immune system is compromised and so when I get sick with a cold, recently it develops into pneumonia (twice in the last 7 months.)  I have increased lymphocytes... I pray I will have a definitive diagnosis soon.  That said, I have had to learn to live with pain and fatigue for over 3 years, and so bad that I can't work and I need help with the house work even.  Just loading the dishwasher creates sweaty, need to lie down, fatigue.  I have learned that who I am is not what I do.  I used to be able to do so much.  I used to be a sculptor, and then I went back to school when my youngest started school, and became a nurse.  I was able to work full time for just over a year (and I LOVED it) before "mind over matter" did not cut it anymore. No matter what I do, I have not been able to "get better".  I am by nature, more of a doer and caregiver than one who needs (or easily asks for) help.  My body has transformed creating for my spirit roads to unfamiliar places of BEING.I love caregivers.  I love my children and husband.  More and more I believe that such love is a gift, not only for the sick, but also (and maybe more so) for the caregivers.  I see this more clear now that I am not able to "do" care giving. Caregivers (you) are such a blessing!  Your acts of love and concern for your mother are treasures from the Heart of all hearts.  You are "being beauty" in the help and support you give.   In reality such care creates a collaborative work of art, and a beautiful harmonic song, seen and heard in, what I call, "the in-between spaces" between you and your mother.   Every moment you spend with your mother, loving and caring, thinking and praying, you participate in eternity -- forever.  Such acts are not only for the here and now.  Such acts spin silver and gold cords to and from the Giver.  So, when you write, "I am amazed at her [your mother] innerstrength, even though she has pain that constantly reminds her of the inevitable."   I write:  I am amazed at your inner strength; in and through your love and care for your mother, may you be reminded often that it is "inevitable" that you are participating in the Eternal Gift of everlasting love.  God is Love... Another Mother PeaceLearning Sat, 15 Mar 2008 00:00:00 GMT I am so sorry to hear about your mother. I was diagnosed Sept 2006 with Myelofibrosis. My symptons have been great fatigue (one that no one could explain), hot flashes, low grade fever, and brusing, memory loss and fog. The fatigue I had for many years before any thing was ever discovered. I went from doctor to doctor looking for answers...NONE! Blood test were done for years...NOTHING! I had a blood test that came back with counts out of wack 5 yrs ago that my GYN did, she thought it could have been just one of those things, said take some iron and we'll retest. Well bad me...I didn't think much of it! Never went back till three years later to continue my search once again as to why I was so fatigued. (Jan 2006) Once again my counts were out of wack. So I was sent from one doctor to another till I found myself at a hemotolgist and doing a BMB. Results seem to take forever to come back...he called and said I had a little scarring in my bone marrow we'll keep watch. Over the next few months he kept saying if my counts didn't rebound he was going to send me to MD Anderson in Houston. In Sept 2006 he finally diagnosed me with Myelofibrosis. He sent me to MD Anderson for a bone marrow transplant. My condition as not serious, but because of my age he thought I should see them. Long story short, I've been to Anderson many times, no BMT insurance would not pay for it. I did do a study with Revlimid, but was not able to take it any more after my 6 mts (from March 07 to August 07) on the study. My counts dropped and doctor felt it may be in part due to the medication. Since August 07 my counts have gone to a good levels for me and I have been stable...Thank God! Because my counts are better I feel better. I am as the other woman said tho....no matter my mind set that I will do the things I want to do, my body fails me. I've always been a determined woman all my life to do the things I want to do...and when this began in my body years ago...I was brought down to my knees feeling sick...I'd rest and get right back up...at times I thought it was in my head...NO IT WAS'NT! I know that now! It's taken lots of time for me to accept the fact that my body will not do the things I want to do...but I finally have...the most important thing now knowing my future is to enjoy life...Enjoy every moment. If I feel poorly...I don't beat myself up any more...I enjoy watching TV and accept thats how my day will be today. If I can do more...then I'm off and doing it. I have a beautiful grand daughter that came to me when we were in search of this illness...and she has been the greatest blessing...of course I've had to deal with my issues about not being able to have her as much as I'd want to...but I'm doing better with that...So to go back to your questions about time frame...You can research on the net and find all the answers you need...In short they say 5 years from dignoses...but there are a small number that have gone 10 yrs and one lady I read about 18 yrs before the disease hit her enough to stop her life style. There are many sites...here are a few...http://www.bonemarrow.org/about/index.html http://mpdinfo.org/faq/faq_mf.html#q5 http://www.acor.org/mpd/mffaq.html#stages We can document I've had this for 5 yrs now, and my counts are not much lower than they were back then. They have bounced back and forth and besides the study I have not had any other treatment, not even blood transfusions. So how quickly does this progress? I don't think they know! I was 50 when diagnosed...how old is your mother?...See my thoughts on this is...most don't find out for years and years...usually people are in there late 60's or older...so did they find mine early?...doc said if they had not looked at my bone marrow they still wouldn't know what I have.I agree with the lady also care givers are a blessing! I worry about my days or years ahead...who will care for me...the burned I will put on my sons. God bless you and your mother Darlin....I sure hope things get better for her soon...please tell her hold on...there is a cure coming soon I'm told...lots of research finally happening with this illness. Ditey Fri, 28 Mar 2008 00:00:00 GMT  On 3/28/2008 Ditey wrote:I am so sorry to hear about your mother. I was diagnosed Sept 2006 with Myelofibrosis. My symptons have been great fatigue (one that no one could explain), hot flashes, low grade fever, and brusing, memory loss and fog. The fatigue I had for many years before any thing was ever discovered. I went from doctor to doctor looking for answers...NONE! Blood test were done for years...NOTHING! I had a blood test that came back with counts out of wack 5 yrs ago that my GYN did, she thought it could have been just one of those things, said take some iron and we'll retest. Well bad me...I didn't think much of it! Never went back till three years later to continue my search once again as to why I was so fatigued. (Jan 2006) Once again my counts were out of wack. So I was sent from one doctor to another till I found myself at a hemotolgist and doing a BMB. Results seem to take forever to come back...he called and said I had a little scarring in my bone marrow we'll keep watch. Over the next few months he kept saying if my counts didn't rebound he was going to send me to MD Anderson in Houston. In Sept 2006 he finally diagnosed me with Myelofibrosis. He sent me to MD Anderson for a bone marrow transplant. My condition as not serious, but because of my age he thought I should see them. Long story short, I've been to Anderson many times, no BMT insurance would not pay for it. I did do a study with Revlimid, but was not able to take it any more after my 6 mts (from March 07 to August 07) on the study. My counts dropped and doctor felt it may be in part due to the medication. Since August 07 my counts have gone to a good levels for me and I have been stable...Thank God! Because my counts are better I feel better. I am as the other woman said tho....no matter my mind set that I will do the things I want to do, my body fails me. I've always been a determined woman all my life to do the things I want to do...and when this began in my body years ago...I was brought down to my knees feeling sick...I'd rest and get right back up...at times I thought it was in my head...NO IT WAS'NT! I know that now! It's taken lots of time for me to accept the fact that my body will not do the things I want to do...but I finally have...the most important thing now knowing my future is to enjoy life...Enjoy every moment. If I feel poorly...I don't beat myself up any more...I enjoy watching TV and accept thats how my day will be today. If I can do more...then I'm off and doing it. I have a beautiful grand daughter that came to me when we were in search of this illness...and she has been the greatest blessing...of course I've had to deal with my issues about not being able to have her as much as I'd want to...but I'm doing better with that...So to go back to your questions about time frame...You can research on the net and find all the answers you need...In short they say 5 years from dignoses...but there are a small number that have gone 10 yrs and one lady I read about 18 yrs before the disease hit her enough to stop her life style. There are many sites...here are a few...http://www.bonemarrow.org/about/index.html http://mpdinfo.org/faq/faq_mf.html#q5 http://www.acor.org/mpd/mffaq.html#stages We can document I've had this for 5 yrs now, and my counts are not much lower than they were back then. They have bounced back and forth and besides the study I have not had any other treatment, not even blood transfusions. So how quickly does this progress? I don't think they know! I was 50 when diagnosed...how old is your mother?...See my thoughts on this is...most don't find out for years and years...usually people are in there late 60's or older...so did they find mine early?...doc said if they had not looked at my bone marrow they still wouldn't know what I have.I agree with the lady also care givers are a blessing! I worry about my days or years ahead...who will care for me...the burned I will put on my sons. God bless you and your mother Darlin....I sure hope things get better for her soon...please tell her hold on...there is a cure coming soon I'm told...lots of research finally happening with this illness.I wanted to thank each of you for giving me such good advice and kind words of encouragement. Last week my Mom had a new dx added. She has myelodysplasia with myleofibrosis in that. The fibrosis in her bone marrow has rapidly progressed. Her transfusions have increased from once a month to every 2 weeks over the course of  6 months. In order to slow or stop the disease,  she can have chemo (DECITABINE)  for five days at a time while hospitalized, then go home for a break and repeat the hospitalization routine...etc. The other option is a marrow transplant from her older brother, The Dr. says this disease is different and will only allow this family member if he is a perfect match to be a donor.The mortality rate for the transplant is 20-25%. My mother was feeling pretty good after a transfusion this week and canceled her lab appt.  She was supposed to get her Aranesp shot at this skipped appointment too! Her  platelets were at 19k about 10 days ago and I think she was afraid to get the lab done as the Dr will order platelet transfusions at 15K.  We were blindsided by this new DX. I am putting on my happy face for her, but deep down I can't seem to find my positive spirit that has kept me going as a caretaker. Still, It's happening to her (not me) and I cannot be selfish, especially now. Prayers, peace and love to you all.  I wish I could take this disease from every single person that has been touched by it.   JuJusdaughter Sun, 30 Mar 2008 00:00:00 GMT  On 3/30/2008 JuJusdaughter wrote: On 3/28/2008 Ditey wrote:I am so sorry to hear about your mother. I was diagnosed Sept 2006 with Myelofibrosis. My symptons have been great fatigue (one that no one could explain), hot flashes, low grade fever, and brusing, memory loss and fog. The fatigue I had for many years before any thing was ever discovered. I went from doctor to doctor looking for answers...NONE! Blood test were done for years...NOTHING! I had a blood test that came back with counts out of wack 5 yrs ago that my GYN did, she thought it could have been just one of those things, said take some iron and we'll retest. Well bad me...I didn't think much of it! Never went back till three years later to continue my search once again as to why I was so fatigued. (Jan 2006) Once again my counts were out of wack. So I was sent from one doctor to another till I found myself at a hemotolgist and doing a BMB. Results seem to take forever to come back...he called and said I had a little scarring in my bone marrow we'll keep watch. Over the next few months he kept saying if my counts didn't rebound he was going to send me to MD Anderson in Houston. In Sept 2006 he finally diagnosed me with Myelofibrosis. He sent me to MD Anderson for a bone marrow transplant. My condition as not serious, but because of my age he thought I should see them. Long story short, I've been to Anderson many times, no BMT insurance would not pay for it. I did do a study with Revlimid, but was not able to take it any more after my 6 mts (from March 07 to August 07) on the study. My counts dropped and doctor felt it may be in part due to the medication. Since August 07 my counts have gone to a good levels for me and I have been stable...Thank God! Because my counts are better I feel better. I am as the other woman said tho....no matter my mind set that I will do the things I want to do, my body fails me. I've always been a determined woman all my life to do the things I want to do...and when this began in my body years ago...I was brought down to my knees feeling sick...I'd rest and get right back up...at times I thought it was in my head...NO IT WAS'NT! I know that now! It's taken lots of time for me to accept the fact that my body will not do the things I want to do...but I finally have...the most important thing now knowing my future is to enjoy life...Enjoy every moment. If I feel poorly...I don't beat myself up any more...I enjoy watching TV and accept thats how my day will be today. If I can do more...then I'm off and doing it. I have a beautiful grand daughter that came to me when we were in search of this illness...and she has been the greatest blessing...of course I've had to deal with my issues about not being able to have her as much as I'd want to...but I'm doing better with that...So to go back to your questions about time frame...You can research on the net and find all the answers you need...In short they say 5 years from dignoses...but there are a small number that have gone 10 yrs and one lady I read about 18 yrs before the disease hit her enough to stop her life style. There are many sites...here are a few...http://www.bonemarrow.org/about/index.html http://mpdinfo.org/faq/faq_mf.html#q5 http://www.acor.org/mpd/mffaq.html#stages We can document I've had this for 5 yrs now, and my counts are not much lower than they were back then. They have bounced back and forth and besides the study I have not had any other treatment, not even blood transfusions. So how quickly does this progress? I don't think they know! I was 50 when diagnosed...how old is your mother?...See my thoughts on this is...most don't find out for years and years...usually people are in there late 60's or older...so did they find mine early?...doc said if they had not looked at my bone marrow they still wouldn't know what I have.I agree with the lady also care givers are a blessing! I worry about my days or years ahead...who will care for me...the burned I will put on my sons. God bless you and your mother Darlin....I sure hope things get better for her soon...please tell her hold on...there is a cure coming soon I'm told...lots of research finally happening with this illness.I wanted to thank each of you for giving me such good advice and kind words of encouragement. Last week my Mom had a new dx added. She has myelodysplasia with myleofibrosis in that. The fibrosis in her bone marrow has rapidly progressed. Her transfusions have increased from once a month to every 2 weeks over the course of  6 months. In order to slow or stop the disease,  she can have chemo (DECITABINE)  for five days at a time while hospitalized, then go home for a break and repeat the hospitalization routine...etc. The other option is a marrow transplant from her older brother, The Dr. says this disease is different and will only allow this family member if he is a perfect match to be a donor.The mortality rate for the transplant is 20-25%. My mother was feeling pretty good after a transfusion this week and canceled her lab appt.  She was supposed to get her Aranesp shot at this skipped appointment too! Her  platelets were at 19k about 10 days ago and I think she was afraid to get the lab done as the Dr will order platelet transfusions at 15K.  We were blindsided by this new DX. I am putting on my happy face for her, but deep down I can't seem to find my positive spirit that has kept me going as a caretaker. Still, It's happening to her (not me) and I cannot be selfish, especially now. Prayers, peace and love to you all.  I wish I could take this disease from every single person that has been touched by it.  I'm so sorry to hear of the new diagnoses. Hon I think...now this is my own opinion that I'd go for the bone marrow transplant/stem cell transplant. Her disease seems to be really up there with all the transfusions shes getting now.Little story for you...While I was sitting at MD Anderson to do my BMB I meet a lady that had had the stem cell transplant 45 days earlier. She got out the hospital before 30 days and was living in a apt in Houston for the 90 days stay after being released from the hospital. She did great for those 20+ days...she threw up once...she told me she kept waiting to get sick...she never did. She did have a little set back after she left the hospital but doctors got her back in hospital and got it corrected real qucik and she was doing great since.I know how your mother feels...as long as your feeling well, you don't want to go back because you don't want them to ruin it...I've thought that way myself Hon.As for you and being down...you have every right Sweetheart...shes after all your Mother!!!!! You have every right to be angery and hurt and sad...I went thru the same thing when I was diagnosed...my doctor put me on a mild anti depressant med and its helped me more than I can say. It helps you to have the courage to face each day...that way you can make the most of it! I hope your mother considers the stem cell transplant. It may buy her some more time. God bless and if you ever need someone to speak to that has this...I'd be happy to! Just leave me a message here and I'll give you my email!Best wishes for you all,Peppe'   Ditey Mon, 31 Mar 2008 00:00:00 GMT Dear Peppe'Thank you for letting me know how you are doing and about the woman that you met. Your compassion for me, when I have no health problem, is a tribute to the beautiful person that you are.  I hope you are having some good days and feeling well lately.  I will always remember you in my daily prayers. I love the name Peppe' by the way! It makes me smile. Thank you for your advice on the transplant too. I will be strong and stick by her and let the experts do their thing! :)talk soon!Jujus Daughter JuJusdaughter Tue, 01 Apr 2008 00:00:00 GMT Hi JuJus,I wanted to share with you a site that I found the other day. Infact it's part of cancercompass this site we are on. http://www.cancersociety.com/forum//viewtopics.cfm?Forum=30& This may give you some hope Sweetheart. There is one man on here that has had this for 18 yrs, another for 17 yrs. I hope your mother is feeling better...you both remain in my thoughts and prayers.Hugssss,  Ditey Tue, 01 Apr 2008 00:00:00 GMT Update on my Mom, who is doing fine now but WHAT A WEEK! This past week was bad. I have never seen her so sick and frail. She had a bleed starting last Sunday evening. It stopped but started back on Monday afternoon and lasted until about 2am Tuesday. We all headed to her Dr.s appt. Tuesday and bless her, the bleed started back up in the waiting room :(   I  tried to help hold her ice pack and switch out gauze as fast as I could.  She was shaken up by the whole thing. I stayed the night with her and we checked into outpatient Wednesday morning for her transfusions. Everything went fine until she had a reaction to the platelets. After benadryl and steroids she fell asleep. The color was back in her face and it was the first time I had really seen her looking peaceful all week. It just brought quiet tears of relief to my eyes. Once I knew my step father was on the way, I left my Aunt and Mom to go home for some rest. I couldn't rest though. When I did sleep I had terrible nightmares and just woke up sobbing. I guess I just held it all in for three days and the flood gates finally opened.  That and catching up on sleep was all I needed to get back to normal. She will continue to do transfusions unless they begin to fail. If they ever do, her Dr. recommended five day chemo with a week off and repeat until five rounds are completed. We all still have a lot of faith that the transfusions will last and hearing about people here that have gone years and years with transfusions still helping, gives me so much HOPE. :)Still keeping everyone included in my prayers, I hope everyone is doing well and staying strong! Andrea  JuJusdaughter Mon, 14 Apr 2008 00:00:00 GMT