I am 49 yeara old, was diagnosed almost two years ago with Myeloproliferative neoplasms (MPN) (probably MF). Mainly due to itching of the skin and strong pains that migrate from place to place (knee, shoulder, ankle, etc.)
I wanted to ask if other people experience the same symptoms and if so how do you deal with them?
1 Like
Dear @Ori
Thank you for posting and welcome to the forum. I do hope that you this a supportive and informative space.
Are you still experiencing the symptoms you mention above? If so, have you mentioned this to your you Haematology doctor or Clinical Nurse Specialist. These symptoms can be very troubling so I also have some information here that it produced by our colleagues at Myeloproliferative neoplasms (MPN) Voice: Itchy skin – MPN Voice
If you would like to talk through your diagnosis and symptoms please do get in touch: Blood cancer information and support by phone and email | Blood Cancer UK
Take care
Gemma
1 Like
Hi @Ori a great big welcome to our forum and I am so glad you have posted.
@Gemma_BloodCancerUK has given you a great response, which I echo and do not want to repeat.
I hope others can share their experiences and handy hints.
I really look forward to hearing more about you, look after yourself and take care and please do keep posting.
2 Likes
Hi
Don’t really have any tips for you but I also have what I can only describe as bone pain that I suffer with constantly in my ankles and sometimes my hips, my consultant doesn’t really pay attention to my symptoms always trying to blame them on other things that could cause them so if anyone has any tips that would be great!
1 Like
Hello @Lsheppard and welcome back to this forum. I don’t know which Myeloproliferative neoplasms ('MPN') you are living with but I sympathise with the bone pain you are experiencing. I know how miserable and wearing it can be. I have lived with myelofibrosis for many years and have really suffered with bone pain. However in recent years I was given Ruxolitinib and more recently Momelotinib which has helped make the pain more manageable. I had an up to date bone marrow biopsy before being permitted to start these drugs as there are certain criteria that have to be met. Ruxolitinib and Momelotinib are classed as TKI’s. It might be worth contacting your haematology team to let them know about your ongoing pain and to ask about the possibility of either of these drugs if you are not already taking them. I hope this helps. Thinking of you. Willow x
3 Likes
Hello there @Lsheppard and welcome back to the forum.
I’m really sorry to read of that bone pain you experience constantly, and would really urge you to contact your haematologist like dear @Willow wisely suggested. We should not live in pain, and I’m sure your specialists need to have in their records all your symptoms and side effects, let alone wanting to decrease your discomfort.
Would it help to call the lovely Blood Cancer UK nurses first to talk over how to approach this with your specialists? They might recommend which medicines are recommended for the kinds of pain you experience, for the type of Myeloproliferative neoplasms ('MPN') you were diagnosed with. Give them a free call on 0808 2080 888 I’d say.
Do keep us posted please @Lsheppard.
1 Like