It is almost 8 years since my diagnosis of PV. In the beginning I was a regular subscriber on this forum which together with attendance at seminars, I found hugely supportive and beneficial. My husband died three years ago and my last posting was during his illness when I described myself as "running on empty" . The kind messages of love and support on here were beautiful. Since then my life has obviously changed greatly. I seem to manage my PV quite well (fingers and toes crossed). I have been on 2x500mg hydroxy for a long time. I have not seen a consultant in person for years. My telephone appointments are now every 16 weeks. Recently my cousin in Ireland who also has PV mentioned that he sees a consultant in person every eight weeks. I wonder how frequently people with PV on here in the UK see a consultant.
Appointments: It is almost 8 years since my... - MPN Voice
Appointments
It is good to hear from you again. It is a hard adjustment losing a loved spouse. I hope your path of healing is moving forward with love and support from family and friends.
I am glad to hear that you are doing well managing the PV. Sorry to hear that you only have telephone appointments every 16 weeks. That does not seem like an optimal level of care, even for a stable patient with PV. I see my regular hematologist face-to-face about every 8-16 weeks based on my needs. I have have labs every 4 - 8 weeks based on what is going on. I see the MPN Specialist every 6 months. I am in regular contact with my MPN care team via the patient portal. If something were to come up, I would get a prompt response.
While our systems of care vary, what defines quality patient care is universal. Here in the States, as in other places, access to care is widely variable. The one universal principle in all healthcare systems is that assertive patients receive higher quality care. Passive patients do not. We need to be our own best advocates.
Wishing you success moving forward in accessing the care you wish to receive.
I was diagnosed with PV 8.5 years ago. I have regular 6-month visits with my hematologist and my MPN specialist. Blood work these days is every month, just before I order the next month's supply of Jakafi. Since I seem to be stable on Jakafi, this schedule works for me. My specialist is in Philadelphia, 180 miles away from my home, so my visits with her have become virtual; that also has been working well.
I’m in the UK and I haven’t had a face to face consultation with a haematologist since before Covid. It’s a phone call every six months and in between I have to arrange for a blood sample to be sent in and eventually I get a letter with results. There is an MPN nurse I can phone if needed.
I’m in the UK, I didn’t see a consultant for over 3 years, just phone calls, usually from a nurse, however at the beginning of this year I started seeing the doctor face to face again, since then the distance between appointments has varied, from 4 weeks to 8 weeks, when things are stable I get phone calls, which is a lot easier for me as trying to park at the hospital is a nightmare!
I have 16 week appointments face to face at my request. It is easier for blood tests and results to get to consultant. My gp is in Bedfordshire and hospital in Cambridge Addenbrookes.
Hi, I am also treated at Cambridge for MF. May I ask who you see?.
Prof Brian Huntley
How do you find him and what sort of check up does he do? I have got dr Crawley who is a myeloma and stem cell specialist. I am hoping to switch soon, but was not sure if Anna Godfrey is the main MPN specialist at Addenbrooks.
yes Anna Godfrey is one of the lead Consultants. I have PV and have seen Anna and other since first being diagnosed in Oct 2012. Since return to face to face since COVID I have always seen Brian Huntley. Hope helps.
Thank you for the info. I am going to Guys in January but will ultimately go back to Cambridge, when travelling becomes too much.
Hope transfer goes well.
Hi good to hear you are keeping well since covid I have only had phone calls but a few months ago I asked for a face to face appointment has platelets are rising it wasn’t much help my doctor had left see a junior doctor who wasn’t sure what to do told me to go back in two months I would have a doctor well I did go back and see another junior doctor who ask me what to do said could take months to get a regular consultant I am in the Essex area and thinking of asking to change hospital I do have a specialist nurse who is very helpful take care Poppy
Hi Fionn
I m so very sorry that your husband passed away, and for you at such a young age. I can’t begin to imagine how heartbreaking it was for you.
I always think it helps enormously ( and have been told so by many ladies I have buddied ) to have some info about the person you’re talking to!
I m 70 next year, was diagnosed with PV about 15 years ago, like you have been taking 2x 500 mgs HU daily ( about 12 years) I live in Cumbria and am well.
I do however have the most wonderful MPN specialist in a dedicated cancer hospital. Since covid I have a blood test locally about every 6-8 weeks ( my haematocrit tends to creep up over 3 months) which is then emailed to my specialist. I then have a telephone appt.
I have a venesection about 3 times a year.
I know if I wanted to see my specialist at any time I could make an appointment. The dedicated care from this amazing doctor and his team is truly amazing.
I think though if you’re happy with the way things are I wouldn’t worry. PV is so very different for us all. It sounds to me as if you’ve got a brilliant handle on yours.
Wishing you a very happy and peaceful Christmas.
Louise x
Hi Louise, I’m glad to hear you’re doing well. I’m a UK northerner too, aged 59 and like you I’m on 1g HU daily plus regular venesections. Having had conflicting advice from local consultants since I was diagnosed with PV in August I’ve been thinking about finding a specialist. My sister has suggested I ask for a referral to a specific MPN specialist at The Christie Hospital, where she works. I was wondering if that’s where your wonderful doctor is based? Catherine x
Hi Catherine
Lovely to hear from you. Yes I attend the christie and have been under Prof Tim Somervaille for around 12 years. I decamped from my local hospital. If you google Tim’s details info should pop up along with his email address. Please don’t say I recommended him I think the poor man is snowed under! You will have to ask your gp to refer you. Don’t accept any nonsense. All the very best. Maybe I ll bump into you! Outpatients day is usually Wednesday. Louise x
Thank you for getting back to me so quickly Louise. It’s Prof Sumervaille that my sister suggested! I’m so glad to hear you’ve had such a positive experience with him and his team - your warm recommendation has made my mind up (don’t worry, if successful I’ll blame my sister for adding to his workload). My current doctor is quite dismissive and gets annoyed if I try to ask questions so I’m relying on the (lovely) haematology nurses for advice. I’ll ask my GP to refer me once I’ve had my BMB this week. Thanks again, and see you in clinic, hopefully. Cx
Brilliant! You’ll like him. Let me know how you get on…
I can’t leave my email address on this site but if you contact Maz via mpnvoice.org.uk she’ll let you have it.
Louise x
Thanks Louise, I will x
Hi I have only seen my consultant about 3 times in 12 years when I moved to the Wirral from London. (Big difference to the care I received in London where I saw my consultant every 12 weeks.)
Prior to covid I went to the clinic every 12-16 weeks where I had a blood test, saw a pharmacist and got my Hydroxycarbamide. My last appointment at the hospital was in March 2020. I now go to the hospital for a blood test, have telephone appointments with the pharmacist and then have to go back to the hospital to get medication. It was delivered during Covid but they can’t afford this anymore.
After being very stable for a long time my platelets have gone up a bit ( I had surgery in June and Covid in September). The pharmacist suggested an increase in medication but I’m not keen and asked for time to see if platelets settle again. I’m now having 6 weekly checks to monitor this.
Still no suggestion I have a face to face appointment or see the consultant. If next blood test still shows an increase in platelets I will insist on an appointment.
I have had PV for 17 years and take 1000mgs of Hydroxycarbamide daily.
Similar story to me - until I switched to Ruilitinib 8 weeks ago - see my other posts.
You might discuss doing the same - I am doing considerably better than my 9 years on Hydroxy.
Hi there, I'm 59 diagnosed 5 years ago with pv take just 5 hydroxy a week. I have a blood test at my local hospital every 3 months, its been this way for a while. I then have a phone review from a very caring cns. On my last blood test I was told to come in for a face to face appointment, I was a little anxious about this but my doctor just had a letter approving me for rux. But after a chat about the pros and cons, mainly due to my skin, I have a lot of actinic keratosis on my face, I have decided to stick with the hydroxy. My only gripe with this drug is in doesnt calm my itching. All the best john
I have labwork every 12 weeks & have a virtual meeting with my MPN doc a week or so afterwards to discuss results & updates in my health. From time to time I've had health issues & I have a phone conversation with my MPN doc - he is always available to me. I once went to see a hematologist who said he would see me every 6 months - never went back.
Hi there, I am treated by Dr Alesia Khan at Leeds St James. I have an equally excellent specialist nurse, Catherine Langton, who really knows me and MPNs. When first diagnosed in 2015, I saw a consultant face to face until my bloods stabilised, then I had telephone clinic with my nurse every 6-12 weeks, depending on general wellness & concerns or sooner if I felt worried about anything. A yearly face to face with the harm. My bloods are still stable but my spleen became enlarged earlier this year at which point, the calls switched back to the haem. I suppose the point for me is that care has changed in response to fluctuations and changes to my health. I've always been happy with the standard of care I receive. Perhaps the frequency of your appointments reflects your current health status?
I was 3 months phone appointment moved to 4 not seen a consultant in person for 3 years. All seems stable but would like to actually chat to a human about it see if there are any other her options than hydroxyl
I've been 3 monthly and on Veno section + aspirin. I'm about to move to drugs [opting for Peggy] so that should become more frequent to start. Hope life continues to treat you well.
This is an interesting conversation. I received a diagnosis of PV in June of 22. I take one 500 mg of hydroxyurea every other day and one low dose aspirin daily. I’m in my 70´s and live in a major city in Canada. I see my hematologist once every 6 months with a blood test only before I go to this appointment. I haven’t heard of anyone with a length of time as great as this between appointments and blood tests. In September, my rbc and hematocrit were slightly low, but the hematologist thought it was fine. I do wonder if I should be monitored more frequently?
Gene SRSF2
Venesections making me feel worse.
Best treatment for Post PV/MF ?
Starting Rux Next Month
