Myelofibrosis

Thank you for sharing your story and I am really sorry that you have had such a hard time! I spoke to my Sister (who is a Genetic Scientist) today about contributing external factors or causes and she beleives that external factors are not to blame for the onset of this disease! So you can be certain that lifestyle wasn't to blame here (petrol or any other substance). How she explained it was that, dividing cells can sometimes mutate as we age and cause diseases, so I guess for our loved ones it was just bad luck!

Hello Everyone,

I'm quite new to all of this and wonder if anyone can answer my questions please.

Is it possible for your spleen/liver to decrease in size after they have become enlarged? I ask because some days I feel no discomfort and other days I do feel quite squashed on the left side below and under my ribs.

Is it possible that increased size of the spleen/liver could in turn cause a gastrointestinal hernia? I had 5 admissions to our local A&E in 2005 and on the final admission they wanted to operate immediately but realised I needed a 3 unit transfusion first because my reds were so low, (they thought a hysterectomy would correct the bloods in April 2006). Each time I was admitted to A&E they asked if I had had in infection as my whites were too high.

The fatigue, lack of motivation and forgetfulness are my biggest worry at the moment, I forget friends names, don't turn up for appointments, forget to pick kids up from school, FORGET I HAVE THE COOKER ON! It feels like I'm losing my marbles at times! But hey, "I look okay so how can I be ill"

I find myself waking up and I can't remember falling asleep and my mind is saying "Get up and go for a walk or do some housework", but my body just slows to a halt and finds somewhere comfy to sleep!

Does anyone have any answers or tips on how to keep these symptoms at bay? I'd be ever so grateful if anyone has any suggestions they may have tried.

Thank you All

Angela

You poor thing... It sounds awful! I'm on the case at this end and will post anything I find out on this site! I dont want 'my Angel' to go through all this, so I am doing all I can to help him early on, he is just 37!!! We are looking into a BMT for the future-to keep his options open. Have a look on the City of hope website, then look at the story about Julius Dix, you might get some ideas there? Good luck with your research and lets both hunt down a safe way of staving off this dreadful thing! Hey theres, nothing like Team Work!!!!

 

On 4/16/2007 my Angel wrote:

You poor thing... It sounds awful! I'm on the case at this end and will post anything I find out on this site! I dont want 'my Angel' to go through all this, so I am doing all I can to help him early on, he is just 37!!! We are looking into a BMT for the future-to keep his options open. Have a look on the City of hope website, then look at the story about Julius Dix, you might get some ideas there? Good luck with your research and lets both hunt down a safe way of staving off this dreadful thing! Hey theres, nothing like Team Work!!!!

Many thanks "my Angel",

I saw my GP today and have an appointment to see my haematologist next Tuesday. I found it helpful being able to talk to a pro about it. She prescribed some antihistamines for the itching and logically explained that the memory thing was something that she would expect to worsen after the diagnosis, given the fact that my mind is swamped with IMF info at the moment! She also said that gaining as much info as possible would be empowering. I've decided not to leave the kitchen when I'm cooking, or at least switch everything off if I do leave it because yesterday morning I ended up burning the bread I was making after falling asleep for an hour and a half. I'm 42 and find that having a sense of humour about all sorts of things can help get me through things so I still sliced the bread up, buttered it and offered it to my friends!!

When I see my hem next week I've decided to ask for definate answers. Last time he said my abdominal scan was okay but it doesn't explain the "fist under my ribs on the left" also I've felt similar to hernia discomfort but more to the centre of my abdomen. I'm going to ask for measurements and also for a record of my blood counts. I just feel that if I know more I'll understand more, I read sites and forums but my head spins when I read about the meds, thats something else to ask about. My GP did say today that I was taken off iron for fear of an overload so I am slowly but surely learning. This forum has been a godsend for helping me learn.

Lastly but by no means least, please know that our hearts are with you after yesterdays tragic events in the USA.

Take care and thanks again

Angela

 

On 4/5/2005 Happy70 wrote:

Am looking to speek to anyone who has myelofibrosis. Please contact me?

My dad has this and it is very hard for me.  He is 64 and just found out in November.  His bone marrow no longer makes any red blood for him and he has transfusions.   We sent him to a mayo clinic in Cleveland.  He is on a few new treatments.

Hi,  My dad has myelofibrosis.  We found out in November.  He is 64.  He was needing blood transfusions every 14 days.  We sent him to the Mayo Clinic in Cleveland and he was put on Prednisone and Thalidimide.  He is not on a newer drug and has gone 4 weeks for a blood transfusion.  His spleen is huge and he has lost 40 lbs.  He is now complaining of severe shoulder pain.  I am concerned for him.  Do you have anything new to add that I might not know about?  Thanks.  DeannaMarie

My dad is 64 and just dgnsd with Myelofibrosis.  He need a blood trasf every 14 days.  We sent him to a mayo clinic in Cleveland and he is on a few expt drugs.  His spleen is huge and he has lost 40 lbs.  I have never been so upset and concerned. He is very tired.  His red blood count is 10.6 right now.  It goes low as 8.4 and has never been above 11.6  I have researched this and met with his doctors.  He is now having severe shoulder pain and I read this could be a spleen problem.  DeannaMarie

I have the same hole in my heart.  My dad is 64--just diagnsd with Myelofibrosis.  He too is on many exper drugs.  He has lost 40 lbs., no appetite and his spleen is huge.  He seems to have a great attitude--although so tired and struggles to walk.  He was golfing 10 months ago and now needs blood transfusions often.   I am so scared and depressed about this.   I am sorry about your dad and understand.  My heart hurts and I can not sleep at night.  DeannaMarie

Dear Deanna Marie and Angela Have they spoken with either of you, with regard to a bone marrow transplant? As well as consulting Doctors for this condition, we have been looking at diet and natural options, to help the body to heal itself. We are on Fish oil (recommended by his Doctor) and I am looking into Liver tonics, like Pomegranate Juice, and raw juices to maintain Liver function. I will let you know if any of these things start to make a difference to his bloods. Perhaps if you find anything else that helps, you could post it on this site? Thanks MA

 

On 4/19/2007 my Angel wrote:

Dear Deanna Marie and Angela Have they spoken with either of you, with regard to a bone marrow transplant? As well as consulting Doctors for this condition, we have been looking at diet and natural options, to help the body to heal itself. We are on Fish oil (recommended by his Doctor) and I am looking into Liver tonics, like Pomegranate Juice, and raw juices to maintain Liver function. I will let you know if any of these things start to make a difference to his bloods. Perhaps if you find anything else that helps, you could post it on this site? Thanks MA

Good Morning,

I was told when I was diagnosed in January that a BMT could be a possible option later, depending on how things go. I will be discussing it again next week with my haematologist though and let you know. I drink pomegranate juice daily if I can and although I don't juice my veg/fruit, I do eat a lot of them raw. If I find anything new or promising I'll be sure to post it.

Take care and thanks again

Angela