Thank you for your response, Steph. 

Hi,

I did read your post and I mentioned to my husband that I wasn't sure what to say to you. My mum sadly passed away on 26 September and I miss her so much, not sure I am in the right frame of mind to be of much help. 

My mum was actually diagnosed at age 60, she was 82 when she died. It is a long story but my dad didn't tell us the diagnosis, all we knew was that mum had 'some issues with her blood cells' and crazy as it sounds I never questioned it as knew mum had anemia and thought it was just that. Nowadays with 'google', I might be saying something different. Mum had an enlarged spleen but medication appeared to help and no operation was necessary. In the last 5 years she had Alzheimers although she recognised us all to the end. She had occasional blood transfusions but these were 6 weekly over the last 2 and a half years, my dad told me that on diagnosis they said she could have no symptoms but would have problems when 'older' however if she didn't have the transfusions, likely she would have a heart attack and pass away.

It was only the last 9 months or so that the transfusions didn't give her as much strength or have any lasting visible effects. Mum spent most of the time sleeping with little energy, stopped eating as much from July and this with reduced intake of fluid got steadly worse, taking hours to finish a meal. She also was taking chemo tablets.

A week before she died, she went into hospital with a blood clot, gave her Rivaroxaban which they thought then caused internal bleeding??...came off those tablets but was ok to come home, that was on a Friday and she passed away the following Wednesday, cause of death was Myleofibrosis.

My mum wanted to go and awful as it sounds I understand why, her quality of life was so poor, she weighed around 5 stone when she died. I am sorry, my story is filled with sadness but my mum lived with the condition for 22 years, I cannot tell you how much I wish I had known about the diagnosis from day 1, would it have been a different outcome, I don't know but I would have spent more time with her instead of working so much, I will always regret that., always.

Everyone is individual and as Steph said, speak to your dads medical team, ask them if there are any alternatives to any treatment/type of drug(s) they are suggesting?

Sounds feeble to say but I wish you and your dad all of the luck in the world and as you are doing, give him all of your love and support, tell him every day what he means to you.

All the best

x

Hello Linda. 

Thankyou very much for your reply.

I’m sorry to hear about your mother. 

Hearing that she made it to an old age and battled the disease for 22 years gives me hope for my father. He is 63 years old.

I know exactly what you mean by you had no idea what your mum was going through. My dad had essential thrombocemia for over 8 years. I never questioned it because I knew he was on tablets for it and that he was fine. It was only when his health started getting worse and he was told he had Myelofibrosis that I realised what was happening. I felt pretty stupid for not having figured it out sooner. 

You say that your mum was diagnosed at age 60. At what age did she start having blood transfusions? 

I was with my dad when his doctor told him his prognosis. She said something along the lines of. This isn’t going to be accurate. But I have to give you a prognosis and it is that of around 2 years 11 months. The day they diagnosed my dad with Myelofibrosis, they gave him a blood transfusion immediately the next day. 

Hearing that your mum had it for 22 years has given me a little bit of hope. But considering that she survived for so long makes me think that it wasn’t as aggressive as other people’s? 

If you could answer at which age your mum started the blood transfusions and how long they worked for, I would greatly appreciate it. It’s very hard to find someone here who’s experienced the same thing as it’s quite a rare cancer. 

x

Hi,

Sorry I haven't replied earlier, I saw dad yesterday but he didn't want to talk about mum and I didn't want to upset him by pushing him for answers. They would have been married for 60 years back on the 2nd Dec and he is broken by her passing. I spoke to my brother and we think that mum started her regular transfusions ( every 6 weeks) as early as 4  years ago, at age 78 and after each you could see her 'perk up' and have more energy, the boost in energy I would say started to decrease around 9 months ago; mum was also taking Hydroxycarbamide ( chemo tablets) , prescribed around same time as the regular transfusions started. Prior to that, mum saw a consultant on a regular basis for about 1 year and appeared a 'wait and see' approach was taken. Mum also had what she described as bone pain but she was one of those people who wouldn't complain; unsure if this was exacerbated or result of the Myleofibrosis?

Looking back, it was really only the last 4 years that the condition affected normal living, mum unfortunately also had Alzheimers which affected how much she could explain how she was feeling, she was very quiet and spoke very little over last 2 years.

My dad cared for mum right to the end, he was/is so brave and all of our family are so grateful for the love and care he showed.

She was a truly beautiful person, inside and out, life is very cruel sometimes and we miss her dreadfully.

There is quite a lot of info if you google about this condition, I am apprehensive about saying that as you can get overloaded and your dad's medical team will hopefully have the answers that you seek.

I don't think I have been much help but please ask if anything I have said is not clear or any other questions, I'll do my best to help.

Faith is a personal thing but you will be in my prayers.

Take care, your dad is lucky to have such a loving daughter.

x

Thankyou very much Linda, you’ve been a great help.

its lovely that your dad was there for your mum. It sounds like she had a tonne of love from the family. Unfortunately for me and my father, it’s just us two. He doesn’t have anyone else. 

I think that’s enough information for now. Perhaps later on if I have any questions or anything, it would be nice to talk again. 

x

Sorry, I shoudn't have assumed you were female!  Well, it isnt just you and your father now, you have us on the forum, very kind and understanding people here. Of course, whenever you want to ask or just 'talk', I'll be around.

Regards,

Hi, my name is Amanda. My mother was diagnosed with myelofibrosis when I was 16 and she was 42 (23 yrs ago). I remember back then for a while she was having night sweats, losing weight, not hungry...they may have more symptoms but those are the ones I remember. Pretty quickly she had tests (blood, bone marrow) and was put on to the drug interferon. Back then in the late 90s I'm not sure if the drug was new but she was lucky to be on it from the get go and I honestly believe this is why she is still here and fighting today. In the 23 years she has had this condition there was only one worrying time a couple of years ago.

She goes every three months to hospital for blood check/overall check up.  She was injecting interferon daily, but as of today she has been put on to peginterferon, which she will take weekly (I need to still research this one as she was told over the phone and not given a reason). 

It can be overwhelming, back at the start it wasnt considered to be cancer and life expectancy was 3-5 yrs. Over the years that number has gone up to 20 years. And it is now classed as a blood cancer. My mother has lost weight because of it and developed breathing problems (not life limiting) but in the last 23 years she has lived a normal happy life, retiring last year. And yesterday was even dancing to 80s music on her record player to keep fit.

I know the original post was a while ago now, I hope your dad is doing ok. Never be afraid to ask to sit in on hospital appointments, ask questions or even second opinions. Take care!

Hello , how is your dad now? I too have the same and going for my stem cell transplant soon.

Hello,

How did your stem cell transplant go? My father was diagnosed with this a few years ago, with monthly blood transfusions and medication. Recently his condition has worsened and will be going through chemotherapy hoping for a stem cell transplant but was given very low success prediction.

Feeling like I don't really know what to expect, there is so very little information on this..