Myelofibrosis

Hi Peggy Sue

I'm very sorry to read that over the last few month's your partner's health has declined and it must be a very difficult time for you both. I don't know when this week you were having the meeting with the consultant but I hope it's gone/goes as well as it can and that you have been given some options.

I haven't been in your position, as it was me who had cancer, but I noticed that your post hadn't had any replies yet. By replying to you it will 'bump' it back to the top of the discussions list where it'll be more easily seen.

If you feel that talking to someone would help then please pick up the phone to the Macmillan Support Line and have a chat to one of the nurses. It's free to call on 0808 808 0000 and is available every day of the week from 8am to 8pm.

Sending a virtual ((hug))

Hi Peggy Sue

I'm so sorry to hear of what you’re going through. My husband has recently been diagnosed with Myelofibrosis which developed from Essential Thrombocythemia. Although we have lived with ET for a number of years And always knew there was a possibility it could transform it came as a massive shock to us. I can appreciate how tough it must be for you to see your partner suffering and to have so much uncertainty about the future. I am very scared about the journey ahead, particularly as it seems there are few treatment options. It is particularly heartbreaking as my father died from multiple myeloma and although it is a different blood cancer I suspect the journey may be similar. I’m not sure how I will cope if /when my husband’s condition deteriorates. I’m sorry not to be able to offer advice on how to cope, I’m certainly not qualified to do that, but here to listen if that helps. Sending you positive vibes. X

I am sorry to hear about the changes in your husband condition, the news we received was heartbreaking he's only got a few months left so this next journey is going to be difficult for us both, we are in this together. I feel angry sad and lost at the moment he says he's accepted his plight, but we are not giving up without a fight. Our journey may be short but we will make every moment count. I hope you both are making great memories and you never know a cure may be found maybe not in time for my partner but in time for your loved one.

Always here if you need to talk, xx god bless

Oh I am so sorry to hear that. It must be devastating for you. Somehow I sense though that you will both find that you are stronger than you ever knew. As you say the journey may be shorter than anyone would want but there will still be some precious treasures along the way and I am sure that your love for each other will help you find and share some happy moments.

For us I think the length and nature of our journey is very unclear at the moment. We believe his MF to be at a relatively early stage right now and, apart from fatigue, he seems well. It is complicated as he was diagnosed with another form of cancer (we think unconnected) a few months ago and following surgery for that is receiving immunotherapy for a year. That rules out Jakafi as it is incompatible or stem cell transplant so we are really just watching and seeing for the rest of 2021 and will just have to hope it does not progress too quickly.  He is under the care of 3 different teams at 2 separate hospitals so as you can imagine no one is too willing to step up with a prognosis. I can understand that and I know diseases act differently in each person but it is very hard not to have any sort of frame of reference. We want to make memories for sure but also might need to be realistic about what is likely to be possible with energy levels, treatment requirements etc.. My husband is fairly young (50s) and apart from the background ET which never really impacted him significantly has always been fit and well until now. It is difficult to comprehend how much or how quickly that might change.

If you feel able to share some information about how your partner’s MF progressed after diagnosis and the treatments he has had  I would be interested to hear about that, as well as how he is doing now of course. But I understand completely if you aren’t comfortable with that or don’t want to go there right now. 

Sending you a virtual hug as I think we are all in need of a few real ones of those these days.

Dont forget to look after yourself amongst all this

xxx

Hi, your virtual hug has been greatly relieved. We are fighting this disease every step of the way together.

He was diagnosed with ET 10 years ago and he has lead a good life for the past few years, early last year we found out it had progressed to mylofybrosis and appeared to have no real change in health until end of last year, he found a lump on his leg then one in his groin and with MRI and tests we learnt his condition had changed to acute myeloid leukemia which is the next stage of mylofybrosis, this doesn't happen to everyone with mylofybrosis, he has just been unlucky. The lumps are cancerous and due to his age all treatment has been withdrawn, he has blood transfusions every 2 weeks and starting radiotherapy next week, this is classed as palliative therapy due to the tumours will appear anywhere over his body and as quick as they shrink them others can develop.We are staying positive and pray we have more time than predicted, together, as few months is the prognosis.

I will pray you both have many more years together and enjoy every moment you can, I'll always be here if you need to shout scream or talk, and never be afraid to ask questions.

You can ask me anything and I will share my experiences with you, 

Big hugs to you both and stay positive

God bless

Day 2 for his radiotherapy, he continues to be upbeat about things and I try to go along with him, the other day he started a discussion about his funeral, this I found really hard, he talks to many people and gets many phone calls from well wishers which I am glad about, I must be an awful partner because all I think about now is being his carer and starting to feel isolated, I'm asked if I'm ok and of course for his sake I say of course, which is a lie really,  these feelings I have must sound dreadful to those of you that read my blogs but on the outside I appear fine inside I'm dying with the knowledge that our lives together is going to be shortened, well I must get ready to take him for his radiotherapy, and stop wollowing in selfish pity.