end stage MF

[ardpatrick]

Can anyone advise me on what to expect from end stage MF

My husband is getting worse and has now developed a heart problem which occurs during transfusions. He is presently having transfusions every week and has been told his condition worsening.

[babbittybumble]

Hello I am really sorry that your husband is so unwell. I cannot advise you on his condition but please contact your GP and ask for the Macmillan nurses or the palliative care team to be fully involved. They will be really supportive to your husband and youself. Take care both of you. Gill

[Aime]

Thinking of you both, kind regards Aimexx

[Superwoman]

So sorry to hear that your husband is so unwell, cannot help, but as Gill has said get the Macmillian palliative care nurses to help, which hopefully they are doing, they are amazing in these situations.

Sending you love and e.mail hugs.

Jean

[JediReject]

Hello Ardpatrick, I'm very sorry to read your husbands condition is deteriorating and that you need to ask such a heart-wrenching question. I know you have been a Forum member for several years and your husband has had his MF for around 10 years or so ? .

In all honesty I feel the answer to your question lies outside this Forum and you need to seek some advice and support from professional sources as advised by Gill in her response.

I know how hard it's been for my wife to care for me and the stress she has been under trying to cope alone at times so if you haven't already please speak to your GP or your husbands Clinical Nurse Specialist to see what help you can get as you really need support at such a difficult time.

Regards - Chris

[ardpatrick]

Thanks for all your words of support appreciate it

[Rachelthepotter]

Hi

Wohld be grateful if you can share your experiences of how things go for your husband. I’d welcome some information, and so would my husband . I have MF, and am well enough at the moment, but I have no idea what is likely to happen at the end. We’d both find it helpful.

[Eire66]

Hi Ardpatrick, I have had MF for over 9 years and am lucky enough at the moment to feel 'well'. I fully agree with the other comments made on getting help during this very stressful time. I was offered a referal to the palliative care team by my local hospital as my prognosis is not very good. I turned down the offer saying when I felt I needed it I would take up the advice but don't feel ready just yet. I knew 3 people who had advanced MF who didn't make it one of whom I sat with for a few hours on the day he passed away. All of us are very different so it's hard to say how each of us with advanced MF will go but rest assured the hospital will do there very best to make your husband as comfortable as possible. It's a very frightening time for you both you must be stressed to the limit. I so hope you have family and friends to support you. My local hospital in Ireland has a palliative care team and also social workers all of who do there very best to help all of the family. Your haematologist should be able to answer your concerns. As Jedi said what a heart-wrenching question to ask as there really is no straight answer for you. Get as much help as you can and I so wish you all the very best but as you know MF is such a rare disorder there is no straight answer to your question. Keep in touch as I'm sure there are plenty on this forum thinking of you both. Pat

[Wyebird]

I’m so sorry to hear about your husband. Gill offers good advise. I suggest you contact Macmillan also. I don’t know where you are living or if he has a specialist MPN consultant but maybe a second opinion.

This is a hard time for you.

My sincere best wishes to you both.

[Fika500]

I am very sorry you and your husband are going through this. My husband has post PV Myelofibrosis and not yet needing transfusions but I fear things are changing for the worse. It is hard living with uncertainty. My advice is to talk to his haematologist or nurse specialist. No doubt there are questions you may wish to get answers to which your husband may not -there will be a way for you to see or talk the haematologist / nurse specialist separately if you ask. Also it is a good idea to ask whether the Palliative nursing team can offer advice and support. I think it’s very difficult because the condition is so rare and unpredictable. Do you have a Maggie’s Centre near you. They offer all sorts of support to cancer sufferers, their family and friends. The centres are on hospital sites and you can just drop in or ring and make an appointment to speak to someone. I’m planning on speaking tot the nurse specialist about my husband and I hope you can do the same. I wish you both well.

[susieq75]

I am very sorry to hear of your husband's worsening health. I cannot add anything to what has already been said by others here- reach out to the services that are available to you. Stay in touch here if it helps you. I hope your husband can get the services he needs and that you can get support for yourself. You are both in my thoughts.

Susan

[Johnsb]

Our prayers are with you and your whole family.

[jane13]

There are several of us on this forum who have MF. The usual progression, as I understand it , for medium/high risk like mine is that we stop being able to make our own blood cells and move onto transfusion. This eventually gives problems of some sort, often associated with high iron levels as we can't recycle the iron from spent red cells. I would very much like to know more about this end stage, but my haem brushes me off and tells me to "think positive". I think this forum should provide information to help us, as well as people with a much happier prognosis. Madz, could you get someone to write us some guidance about this, perhaps joint authorship between a palliative consultant and an MPN specialist? I want to know what's going to happen, to plan for it, not just to put my head in the sand! And obviously I am not alone...

Very best Ardpatrick and thanks for your post. I hope you will feel able to keep posting.

[Fika500 in reply to jane13]

Jane-you took the words out of my mouth! I understand your need to know what to expect and be able to plan. We all understand that nothing is certain but it would be helpful to know what the possible consequences of progression are and be able to consider options, be prepared. My motto is ‘hope for the best and prepare for the worst’. My husband has Post PV Myelofibrosis , is on Ruxolitinib and hgb is quite low, as are platelets and there are immature cells. Like you I desperately want to know what to expect so I can be as prepared as possible and I second your request to Maz. I don’t want to be in the position I found myself after finishing ten months of aggressive treatment for breast cancer to have my Mum diagnosed with mets in her lungs ( at the same time as hubby’s PV progressed to Myelofibrosis) and she died two months later. If I’d had more information it would have helped me to arrange appropriate care/know what questions to ask/navigate the roller-coaster more effectively. I want information that my husband doesn’t necessarily want and it’s very distressing for me carrying these fears/thoughts/uncertainties. Out of consideration for him I don’t ask at consultations but I’m hoping to have a chat with the specialist nurse at a separate appointment. Some information from MPN Voice would be much appreciated.

I wish you well jane13 and Ardpatrick.

[Graham7694 in reply to jane13]

There is so little information for those of us with MF. It seems a prognosis is available for all the other MPN’s but MF seems a closed subject. Do I want to know what will happen to me in the future? Yes I suppose I probably do but there are so many variables with these bloody cancers so probably no one can tell for sure. I read a lot on stem cell transplants but I am hoping that a cure will be found before I have to have that discussion

[Mungestar in reply to jane13]

Yep I agree

[Mazcd Partner MPNVoice]

Hello, what a very difficult question you have had to ask, and I would agree with the advice already given about contacting Macmillan or Maggies, they are wonderful organizations and will be able to offer you both help and support. We do have some information on our website about hospice care mpnvoice.org.uk/living-with... and also end of life mpnvoice.org.uk/living-with... and also information on palliative care

mpnvoice.org.uk/living-with...

Sending you both my good wishes. Maz

[jane13 in reply to Mazcd]

Thanks for the reply. I don't need to know about palliative/hospice care but factual stuff about what my body systems will do once I am unable to make my own blood cells and having regular transfusions. What else goes wrong? What is the effect of having excess iron and the trade offs of treating this? Will other organs like the spleen and liver try to compensate by making more abnormal blood cells and what is the impact of this? Will my spleen start to enlarge again causing problems with blood vessels and what's the thinking about treating this e.g. taking more ruxo but then this suppresses my bone marrow even more. etc

I live in the back of beyond so far as NHS centres of excellence are concerned. I doubt my consultant knows this stuff. Would the Prof write us something to address this?

[ardpatrick in reply to jane13]

I think that is a great idea, I hope we get some answeres

[Mazcd Partner MPNVoice in reply to jane13]

We are going to incorporate some information into one of our booklets on this subject.

[ardpatrick in reply to Mazcd]

That is a great idea, hope it will help us all

[Mazcd Partner MPNVoice]

I will ask her. Maz

[Cookiebaker]

I have ET but my sister passed from MF. That was 11 years ago. She had repeated lung infections and was on a Ventilator many times. She decided she didn’t want to do that anymore and without a ventilator and antibiotics she lived 5 days. It went very fast. So very sorry to hear about your husband going down hill . I will pray for both of you.