Myelofibrosis

My sister was recently diagnosed and is 40, I was wondering how old you are and what treatment you've received so far?  She is still in the early test stages so we are uncertain what treatments she will undergo.

Thanks

My sister was diagnosed a few months ago, we believe a BMT is in her future.  We too are under the impression it is a cure, and I was wondering how your husband is doing at the present time?  Any information is very appreciated.

Thanks,

Hello there,

The only treatment I've had so far is a 3 unit transfusion before a hernia op about 18 months ago. I was told by my haematologist to stop the iron about 6 weeks ago. at the moment my reds are still slightly low and whites are high.

More than anything else just now I'm so frustrated by the tiredness! I've never slept late before and have always love my morning solitude and sanity! Sleeping during the day is completely new to my life and I don't like that much either.

My husband is aware ( and a couple of very close friends) that this is going to shorten my life expectancy but everyone else have been told that it's not that bad, and I just have to get used to sleeping more. We decided on that plan because we don't have a prognosis and I don't want people to worry or feel sorry for me.

I don't have another appointment until september but I might be asking for an earlier consultation to ask all the questions I forgot before. I'm quite an optimist and illness to me is usually a one-day cough or sneeze so it's all a bit weird to say the least. It hit me psychologically last week for a couple of days and that was horrific as I'm not a worrier either. I suppose I'm in denial if I'm being honest "I'm only 41 and there's no way I'm disappearing before 60" is how I keep thinking, I've too many things to do and people to look after.

I hope your sister is a positive thinker and things aren't too bad for her, I don't know if it's been of any help to you but it has for me so thanks for asking. take care and feel free to talk again.

 

On 3/17/2007 Seekinghelp wrote:

My sister was diagnosed a few months ago, we believe a BMT is in her future.  We too are under the impression it is a cure, and I was wondering how your husband is doing at the present time?  Any information is very appreciated.

Thanks,

My husband had a BMT on Feb. 6, 2007.  He is doing very, very well!  He is on day 45 now.  He got to go home on day 16!  They told us to expect for him to be in the hospital for 40 days. 

 Right now he goes to the hospital 3 days a week for labs, etc.  The other days he gets magnesium through is port at home.  He had a bone marrow biopsy a week and a half ago and it showed that 99% of his red blood cells are from the donor and 41% of his T cells are from the donor.  His levels are still low, but not like they were before and they are holding or going up slightly all the time.  His ANC is in the normal range.  He did have to have a shot for white blood cells this past Tuesday, but he hasn't had to have a blood transfusion at all.  (Before the BMT he was having them 2 or 3 times a week.)  He feels very good and is acting like his old-self again! 

As for it being a cure, we were told that a BMT is a possible cure...and the only chance for a cure.  The let us know for sure that nothing is for sure.  We were told when he left the hospital that it is very common for BMT patients to have setbacks and have to be admitted back in the hospital from time to time and that we should not be discouraged if that should happen.  However, his doctors said he's showing no signs of graft vs. host disease.  We are very optimistic! 

I too have a lot of fatigue. Unfortunatly since I don't look sick people don't treat me like I'm sick. My husband expects a lot from me and just doesn't understand how tired and weak I feel. I work full time and have an 18 month. That's about as much as I can handle. In the middle of the day is when I'm the worse. I have been so blessed. The agrylin is keeping my platelets in check and the rest of my blood counts have been stable. I have a lot of pain in my spleen and liver. I belive my enlarged spleen is causing edema and reflux. I take 300 mg zantac like candy. I go for a follow up BMB on June 1st I pray that there has been no progreesion. If there is, Emory is talking about a BMT. I'm not looking forward to that at all. I also found out that I have MDS as well. That puts a whole new twist on things. Always something new.

First of all, thanks so much for the response.  I am SO GLAD to hear your husband is doing so well...16 days is amazing!  Think nothing but good thoughts of a full recovery for him!

I am being tested this week to see if I'm a donor match.  We also have three other siblings that will be tested.  Did your husband have a family match?

In the meantime, mys sister is starting a treament plan tomorrow.  It is a clinical study.  We are hoping to see some results.

 

I have found quite a few stories of people who have this that had a transplant and are dong very well.  I even found a story of a man who was well over 60 and had a mini-transplant and has been disease free for over five years now! 

 

There is a lot of hope out there and improvements being made to kick this thing!

I'd love tohear anything whenever you have a chance.  I feel like I am doing something positive tohelp my dear sister through this time.

 

 

Hi everyone,

 My sister is beginning a clinical trial tomorrow to treat this.  She will receive an injection of  decitabine (chemo) for Days 1-5 and 8-12 then four weeks of monitoring and then repeating that same cycle.  HAs anyone tried this or heard of it?  We hope it has positive effects for her.

 

If it fails, a BMT is her next step.  I have found some positive stories on the INternet of people who have had a BMT for this and are disease free years afterwards.

For those over 60, CIty of Hope Cancer Center and the Mayo Clinic does mini-transplants and have cured people with those over the last 5 years as well..just something in case anyone needs to check into it.  There is one success story on their website from a Julius Dix who was diagnosed in 1987, treated until 2000 for his symptoms, had a mini-transplant in 2001 and is in very good health today!   I found that reading such stories give great hope and promise for a good future for all with this illness. 

 For the person who inquired about memory loss, yes, it is part of this illness.  Low red blood cell count leads to lack of oxygen to your body, including your brain, which causes the forgetfulness.  This is what my sister's doc explained anyway.

Bye

 

 

We had never heard of this disease before yesterday when my partner was diagnosed at just 37!!! Thank you for your link, every little bit of info helps! We are all in shock here and obviously have a long way to go.

Hi All To everyone who has posted something on this site, a BIG thank you, and God Bless! You have all been helping me understand a great deal about the disease and the related drugs etc, for treatment. Anyway, if anyone knows of good juicing tips and/or diet books for helping slow the progression of this PLEASE let me know. I want to start him on a new diet and routine ASAP. On a lighter note I have started calling my man "my one in a million" as this is so rare, although I'm not sure how he feels about his new title to be honest!!! Thanks in anticipation.

I posted a message on 8/10/2006 asking for help for this disease for my father.  Like I said the doctor put him on hydrea and that stopped working  after a while (4 years) and  then they put him on a drug thalidemide and that did not work.  He started to get blood transfusions every 2 weeks and his hemiglobin went down to 7 his platelets 22,000.  he had a spleen that was large 17cm and his liver was enlarged he was 60 years old.  the doctor decided to put him on a drug called Inteferon they were shots he took them for a week 3 times a week.  this drug made him feel like he had the flu his temp went up to 103 and his hemiglobin went down  to 5.9 they put him in the hospital for a week gave him many bags of blood and they took him off the inteferon shots.  During his stay at the hospital he was having a bad headache and he never had this before he had it for a week the doctors told him to take tyelenol.   a week later after he was released from the hospital  he had a brain hemmorage (low platelets 17,000)  and he died on 9/16/2006 in the ER room.  the doctors were just trying drugs on him and they didnt know what will work there is not enough research for this disease I guess the drug compaines figure there is no profit in it since its a rare disease.  anyway people have to know what could cause the disease and try to prevent it from happening.  I know my dad was around paint because he painted houses and he was always around gasoline in the garage.  I hate this disease and I wish all of you well who have it.  This disease took my father's life  and it put a hole in my heart.  May God bless him.