Sorry if this has been asked before. I searched with no luck!
I am having my first cancer-versary soon! It’s been a tough year. It all started a year ago when I went to A&E and found I had a clot. Diagnosed with PV Nov 2023. I am in the UK and treated at Romford Queen’s hospital. They have been brilliant. However, I’m starting to think I need to think about seeing an MPN specialist at Guy’s Hospital.
I just want to see if all my treatment options are being explored. I’m having quite a tough time with fatigue and pain. Mainly caused by interferon (I think).
I’m 43 with a toddler and just can’t resolve that this will be my life going forward. No spark, no energy, just pushing through. I want to get a promotion, I want to be energised and vital for my daughter and partner. And I feel none of that right now.
Do I ask my Haematologist to refer me? Does that mean I have to go to Guys for everything (I have Venesections about once every 6 weeks).
Thanks if you read this far! Just need some one who may have done this change.
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PVKween
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Seeking a second opinion is prudent and every patient's right. I always do this with every major treatment decision. It is possible to get another opinion without changing your local treatment team. This is precisely what I do here in the USA. Others on the forum do the same in the UK/NHS.
It is not surprising that you are encountering fatigue. It is the most common MPN constitutional symptom. It can be caused by the interferon as well. It is also worth noting that fatigue can be caused by venesection-induced iron deficiency even when your HCT/HGB are within desired limits. The purpose of the venesections is to make you iron deficient to control the erythrocytosis. Unfortunately, iatrogenic iron deficiency without anemia can also have adverse effects. Reviewing the issue of fatigue, its source and how to manage it, would be an excellent topic for a MPN Specialist to provide input.
Yes you can ask for a referral . My GP wrote to Guys and got a positive response quickly.I see them in person once a year . And have telephone appointments at other times.
I wanted to share some thoughts from my own experience with MPNs. While I don’t have PV, I’ve lived with ET and now post-ET myelofibrosis (MF). I’m only 44 and have five kids, so I understand firsthand the struggles we go through—the severe fatigue, the unpredictable symptoms, and those endless trips to the ER, hospitals, and doctor appointments. The reality is, it’s tough. As of now, there’s no cure for MPNs apart from a stem cell transplant (SCT). I’ve stopped responding to ruxolitinib, and now I’m being advised to go for a transplant as soon as possible.
Still, as challenging as the symptoms and fatigue can be, there are moments every day where I feel okay and find happiness in my daily life. That’s what makes the decision to move forward with a transplant so hard. I’ve had to shift my thinking from being driven by goals and achievements to finding joy in the journey itself. My focus now is on the little things that bring happiness rather than waiting for the next big milestone.
My advice? Find a medical team you can trust, pursue the best treatments for you, and make lifestyle choices that support your health through diet and exercise. At some point, though, acceptance is part of the journey—acknowledging that this is the body we’re living in, and these are the conditions we’re managing.
People sometimes ask if I have a bucket list, and I don’t. All I want is one more day. Another day to take my kids to school, go to the beach, ride bikes with them, or simply watch them sleep at night. That’s what matters most to me.
Wishing everyone strength and peace on this journey. Good luck, and remember, you’re not alone.
Hello, I have ET. My hospital appts had been very poor so I had an appointment with my GP to ask her to refer me to Guys. She didn’t think she could, I asked her to try, she did and the appointment came through very quickly and directly to me. I’m fortunate in that I am on the main train line into that part of London. Guys will now be leading my care but I will go to the hospital near where I live for anything local that can be done. So for example an ultra sound to review spleen. For me no question this was the best decision I made, to ask GP for referral. I have found the team there to be excellent.
I asked my haem to refer me to Guys for reassurance that my treatment was in line with what they would recommend at Guys. I got a phone appointment with Dr Harrison who was delightful and reassuring. She said I could request another appointment at any time. I remain under the care of my local hospital but with that second opinion if needed.
Absolutely! It’s your right to ask to be referred, however it doesn’t mean everything has to be performed there. I’ve got ET and am under my local haematology department here in Carshalton, that’s for blood tests and prescriptions for Hydroxy, however under Guys for 6 monthly checkups. I just found the depth of testing and the understanding was amazing at Guys also the follow up. They also have a Brilliant app that is perfect for feedback and records everything. Hopefully you will benefit from a referral soon and get some of that energy back. Every good wish.
I asked my haematologist to refer me which he did not like and the referral took a long time to get there (appeared not to have been sent!) but now on shared care with Guys. good luck!
I have PMF and was monitored at another London teaching hospital. They were reluctant to refer me, so I asked my GP to do it and got an appointment with Professor Harrison very quickly. I have now switched my treatment to Guy's - no problem. Good luck.
hi PVKween, I asked for a second opinion on my PV from Guys this yr, the lovely Clinical Nurse Specialist at Homerton Hospital in London who is dedicated to MPN patients sorted the referral, and the Haem. I’ve met was open and intrigued to see if Guy’s response/advice matched their’s. I’ve just recently chosen to stay with Homerton for venesections/ regular check-ups but to have an annual phone call with Guys to check-in, based on travel convenience and current need (low symptom burden, only aspirin), but I could have chosen to transfer and I guess contact frequency is tailored to need. But I now have baseline health data with them and an open line for any questions should I need it which is wonderful to know. I’m pleased I asked. Best wishes and good luck!
Thank you! I also have a dedicated clinical nurse specialist. I get on really well with her. So based on all peoples responses, I think I am going to call her today to see what her thoughts are on asking my consultant next week. Or hopefully she can sort it!
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