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Myelofibrosis treatment

graham0000
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Hi Team. I'm new to this, in that I haven't reached out to the community and this feels rather daunting. 

I'm not the patient here though, that's my dad and after 18+ months we've hit a brick wall with advice from our local Haemo-specialist. 

Dad has been through the mill - chemo meds which have faired ok-ay I guess, and then a trial drug (or maybe more 'test' drug) which nearly killed him! Gladly he stopped the latter very quickly. 

We are now looking in to a second opinion and second cause of action as the symptoms he now has are fairly extreme and he has lost nearly all mobility. 

We are happy to look at private but to be honest, we're not sure 'what' we're looking for next. Ultimately getting him back to mobility is the goal or at least 50% better than where he is at now. 

I guess this message is a (bit) of a cry for help as this is all very confusing and it's hard to understand where to start.

I have all the various info - drugs, dates, symptoms to share with someone in the medical practice to get him a good next consultation. 

Appreciate ANY kind of insight or help - no matter how small a bit of advice, I'm sure this community will offer something really worthwhile to help. 

Thanks for listening 

  • Hello and thank you for posting.

    I am sorry to hear about the difficult time you are having with Dad's diagnosis of myelofibrosis, and his decline in health. Coping with cancer and all its effects can be hard on all the family seeing someone you love deteriorate and feeling helpless. Understandably, you want to make sure every avenue has been researched.

    You may find that posting in the 'living with' thread of the forum means more people may come forward with their own opinions. But as a nurse, I will provide you with some links that you may find helpful at this time.

    Getting a second opinion can help you have an idea of whether there are other treatments suitable for your father. This can happen through your dad's specialist or GP.

    A consultation in the private sector will clarify if there are any treatments not already available within the NHS currently. Do look online to see what private options for self-funding patients are available locally to Dad, but the Marsden hospital does have a private unit that treats hematology patients.

    Do also ask his specialist or specialist nurse (CNS) for referrals to physiotherapy or occupational therapy in case they can provide additional support to help with his mobility.

    Take care, and I hope you get the information that you need. If you would like to call and chat with the nurses do call 0808 800 4040.The lines are open mon-fri, 9-5. 

    Sarah.

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