Still finding my way? Has anyone chosen to delay treatment?

Hi everyone,
I was diagnosed with Essential thrombocythemia (ET) with an MPL mutation, and early-stage myelofibrosis. It took a long time to reach this point. It started with suspected IBD, then liver cirrhosis, fibrosis, portal hypertension, and eventually splenomegaly and varices. Only after all that did my blood work and a bone marrow biopsy finally lead to the Essential thrombocythemia (ET) and early stage myleofibrosis diagnosis. My platelets about 18 months back were 700 or so but I think due to lifestyle changes I made, they came down and are holding at an average of 400. I do bi weekly blood tests, with another biopsy scheduled and I’m adding different elements back into my life like swimming, regular walking and light jogging. Irrespective of the daily symptoms of fatigue, Tummy issues, itching, and the work life balance juggle, I seem to find a path each day to get through it, so I think I’m ok in terms of my health.

Because I’ve had a clot in my portal vein, and the complexity of my situation, my specialist is keen to start Ro-PEG treatment. I’ve chosen to pause starting treatment for now. I feel relatively strong in myself.

Of course, making a decision like this is a chicken and egg feeling, short term I might be ok but not knowing the long term consequences is the risk feeling. Have any of you ever made the decision to delay starting Ro-PEG or another treatment? Did it work out, or do you wish you’d handled it differently?

I know we’re all on our own path, but I’d love to learn from the moments when others made big decisions. what helped, what you learned, and what you’d share with someone else facing a similar situation.

Lastly, and maybe hardest to say, I’ve felt quite alone in all of this. My wife is incredible, but my siblings have been distant, and the hurt of this has been heavier than I expected. has experienced that family disconnect?

Thanks for reading.
Take care
Jon .

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Hi @Jon-butler to start at the end of your post first you are now part of our forum family now.
Yes, I can relate to feeling alone, I was diagnosed 21 yrs ago with another blood cancer and my husband has never mentioned the subject, he is just a head in the sand type of person, there is no right or wrong.
My son seems to take it in his stride, who knows.
But it does hurt,
I hope others will share there experiences of delaying treatment or not.
Personally in a different situation the longer I stay on active monitoring (watch and wait) the better, but treatment has never been offered.
Ultimately the choice and decision is up to you and in a patient led world the NHS has to accept that. You can always think ‘what if’.
Take your time and weigh it up in your mind and please do let us know how you get on, as you say we are all in different situations and complex medically.
Look after and be very kind to yourself.
The Blood Cancer support line is there for you if you feel the need on 0808 2080 888

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Hi @Jon-butler
I was diagnosed with Myelofibrosis about 13 years ago. Initially on watch and wait and started medication about 20 months ago. I don’t know what this treatment is your consultant wants you to start, I haven’t heard of it to be honest. Have they put you on Ruxolitinib or Momelotitinib yet ? When they do the blood tests and mapping etc they can see to a certain extent what you may get in the future or be susceptible to going forward. So usually treatment is based on that. Good luck with any treatment you start and please keep us informed of your progress. Best Wishes Nicki