Hello everyone. I have end stage myelofibrosis so my bone marrow has become increasingly scarred and fibrotic. In addition I have osteoporosis brought about by an early menopause which was induced by the chemotherapy I needed when I was first diagnosed nearly thirty years ago. The chemotherapy was Busulphan and I don’t think it is widely used now as a first line of treatment. My platelet count was extremely high and it was used to reduce it as quickly as possible. Over the years I have sustained several stress fractures in my feet because my bones are weak. Currently I have fractures in both feet at the same time. Has anyone else with myelofibrosis sustained fractures of any kind? I have been told by an orthopaedic doctor that my myelofibrosis is a factor in the fractures I have sustained, plus the osteoporosis of course. I look forward to hearing from others. Thank you. Warm wishes. Willow
Hi @Willow as you know my situation is very different to yours, but I have heard that if you have blood cancer you are more likely to get osteoporosis.
I expect you know I have Chronic lymphocytic leukaemia (CLL) and osteoporosis and a curvature of my upper spine and I have fractured and compressed all my L vertebrate and my lower T vertebrae (I was 5ft 5in high and I am lucky to be 5 ft now) and I have had several other odd fractures.
You have also had chemo, which was probably much more invasive 30 yrs ago.
I feel for you as fractures in both feet must be so painful, exhausting, and wearing physically, emotionally and practically.
You are so supportive of others, let us be there for you.
I will copy your post to the Blood Cancer UK nurse advisors in case they can add anything @BloodCancerUK_Nurses
I hope people with myelofibrosis can add their experiences.
Yes, ever so warm wishes to you @Willow xx
Morning @Willow,
How are you? I am sorry to hear hat your are dealing with fractures of both feet. I hope the pain is managed well and you are coping okay?
Have you been able to have a conversation around this with your team willow? I’m sure you will be prescribed supplements but its also important to feel you can chat with them about this if it is worrying you.
You ask & raise a really good topic in regards to ‘living with an MPN’ & i hope it is a conversation that can continue with others who are possibly experiencing similar, as this can be quite common.
As you have rightly highlighted, decreased bone density and increased risk of fracture are unfortunately well-known manifestations of many MPN’s. This absolutely can be exacerbated by pre existing conditions or indeed other conditions that also increase the risk of osteoporosis ( especially in woman- sadly).
As Erica has brilliantly said- you are so fabulous in supporting so many others whilst going though your own worries, so please do know that if you want to have a talk about this or indeed anything at all, our team are always here for you!
Take Care, Lauran
Hello @Erica. Thank you for sharing your experience of fractures, for your understanding and for copying my post to the nurses. I hope you aren’t in too much pain at the moment. I had repeat x-rays of my fractures last week and sadly there is no evidence of healing yet. I shouldn’t be surprised because I have been here before but it is still disappointing. There are so many issues involved in having a blood cancer aren’t there? Thinking of you and sending warm wishes. Willow X
Thank you @LauranBloodCancerUK for your kind reply. I had repeat x-rays of my fractures last week and as yet there is no evidence of healing. I have been taking daily prescribed vitamin D and calcium supplements for years and I am also under Guy’s for osteoporosis. I have Zoledronate infusions which have improved my bone density but sadly not prevented the fractures that occurred recently. I will discuss this further with my haematology team. Thank you for taking the time to reply. Warm wishes. Willow X
Hi @Willow I am also on the Zoledronate infusions and Calcium + Vit D tabs.
I am very happy on the Zoledronate but I have been on it for 8 yrs and I am aware of the thinking that I should only be on it for 5 yrs.
I had a telephone appointment booked for last Thursday and I was already with my big girl pants on to fight my case and the phone call never materialised!!!
I will contact them, phone or go in, I have time before the infusion date which is booked.
Although I am under Rheumatology for my osteoporosis the infusion is often done in the Haematology Day Unit, Gosh, what hat do I wear???
So sorry to hear there is no sign of your feet healing yet, it has been a while.
Please let us know how you get on and be ever so kind to yourself.
Not got anything useful to add, but thank you @Willow for raising this. It seems the probability of my particular form of ET with the CALR deletion, mutating to MF is particularly high, so interested to hear what others’ experience has been. Forewarned is forearmed, or something. DickM
Thank you @DickM for your kind reply. Interestingly I too have the CALR mutation. I saw my haematology team this week and they confirmed that decreased bone density, increased risk of fractures and slow healing of any fractures are all features of MPN’s and in particular myelofibrosis. I will just add that I also have cerebral palsy which means my gait is abnormal so I put extra weight on different parts of my feet. This adds to my risk of fractures in my feet. This is the fourth time it has happened! Warm wishes. Willow
Hi @Willow I know that you have so much going on at the moment, but I have been thinking about your feet and I just wondered how they are now?
Be ever so kind to yourself xxxxx
As always @Erica thank you so much for thinking of me regarding my fractured feet. The doctor doesn’t want to keep repeating x-rays which I quite understand and agree with. The next x-rays will be in the spring. Therefore I have no real way of assessing progress. They are still painful but not quite as much as they were. I use a wheelchair when I go out and hobble around indoors as best as I can. Thank you for asking. Warm wishes. Willow X
Hi @Willow I hope you have some snuggly bed socks to keep your feet all warm and toasty (if that is what they need) xx
Hello @Erica. I just wanted to update everyone on my fractured feet. The little toe on my left foot is improving but over the last few weeks the stress fracture down the side of the other foot has been extra painful. I requested another x-ray which shows the fracture has actually opened up more with no sign of healing. It is almost five months now since the fractures occurred. I have never had a fracture get worse before. I am so frustrated. I saw the orthopaedic doctor but I could tell he didn’t ‘get’ my complex issues. It was clear he hadn’t read my medical history and I tried to explain the myelofibrosis, osteoporosis and cerebral palsy which are all factors in this. Fortunately the plaster room technician was more understanding and she is trying to order me a special support boot. Clearly something has got to be done. I can’t keep on with the fracture getting worse. The shooting pains are horrible. Wishing everyone a peaceful Christmas. Thank you for your support and for providing this safe place. There is Covid at my mother’s Care Home so I won’t be visiting her or seeing my sister as she is continuing to visit our mother at the Home. Willow X
Oh @Willow that pain sounds excruciating and the fact that the fracture is actually getting worse must be so demoralising for you,
That plus your mothers care home having Covid which means you will not see her or your sister this festive season.
I was going to find you on here to wish you festive greetings but now perhaps all I shall say is that it is only another day with tinsel and you can perhaps spend it with you mother and sister another time.
Yes, I have learnt, as I am sure you have, that we have to take responsibility for our medical issues, medications, allergies and histories and informing other clinicians, opticians, dentists etc.
I really do hope you manage to get a very special support boot soon.
I will be thinking of you even more than usual over the next few days and we are here for you to say how it is for you, be kind to yourself, you are a very special person xx
Thank you @Erica for your kind words. I am doing okay. Enjoying watching The Boy The Mole The Fox and The Horse based on the book by Charlie Mackesy. I highly recommend it. In some ways it’s easier to be on your own. Thinking of you too. Warm wishes. Willow X
Hi @Willow, I just wanted to say that we are thinking of you at what sounds like a difficult time for you. I’m so sorry to hear of the awful pain that you’ve been dealing with and I’m sorry you weren’t able to see your mother or sister at Christmas time. We are here for you and happy to support you however we can- please don’t hesitate to give us a call if you’d like to talk things through (0808 2080 888).
Best wishes,
Tanya.
Thank you so much @TanyaBloodCancerUK for your kind words. I may well ring the support line at some point. Warm wishes. Willow X
Hello @Willow. I have just read your posts and I want to let you know that I am thinking of you. You are so kind to others when you are already going through so much yourself. You are a very special person. I do hope you get your support boot soon, and that your bones will heal up. Take care of yourself and rest your feet as much as you are able. Sending you healing hugs. Chris. 
Thank you @Chris1 for your kind words and thoughts. It means a lot. Warm wishes. Willow X
Hello@Willow,thank you for reminding me about The boy ,The mole the fox and the horse,there were some enlightening messages in there,it was a lovely watch.I hope that the special boot will help you more and that you can get together with your Sister and Mum.Sometimes it is easier to be on your own though.
Hopeful thoughts
Hello @Willow. I also watched the boy the mole, the horse and the fox. It was a lovely film with a deep message. I saw the author being interviewed a few days before Christmas and made a mental note to watch it. I wasn’t disappointed. Apart from that, there wasn’t much worth watching on TV over the Christmas. Hope your feet are not too painful this morning. Best wishes Chris. X