MPN specialist

[jodary]

Hi everything and happy new year

Just wondering if anyone in the Nottingham area is aware of an MPN specialist in the area, or if anyone else is seen at Nottingham City hospital haematology department .

Thank you

[lindyloulou]

I am a patient at Nottingham City Hospital, as far as I am aware although consultants are knowledgeable not sure any are specialists. Lynn x

[jodary in reply to lindyloulou]

Could I ask you which consultant you see ? If not allowed on here could you message me privately ?

[lindyloulou in reply to jodary]

Hi Jodary, not sure how to send you a private message.

[hunter5582]

Hopefully others can weigh in with their actual experiences. Dr. Jennifer Byrnes shows up on this list of MPN expert doctors mpnforum.com/list-hem./ .

[Maurabawn]

Happy New Year! I attend the Clinical Haematology Department at Nottingham City Hospital. I have been seen by a number of Consultants and am happy with my treatment. I go every 2 or 3 months, have bloods taken and the results are in about 10 minutes later and are used to inform the consultation. Thankyou Hunter for a named specialist.

[jodary in reply to Maurabawn]

Hello and a Happy new year . Would you mind if I asked if you have ET , what treatment you are on and for how long and what your platelets were/are now . I have my next appointment on Friday and have some decisions to make before then .

[Maurabawn in reply to jodary]

Hi Jodary.

I have ET- MPL driver. Diagnosed Nov. 2021. Platelets just under 1200. I currently take Hydroxycarbamide 500x 4 days and 1000 3 days. My platelets are now around 470. I started on a lower dose. However, they are aiming for 400 and I do have to be assertive at times as I really don’t want to increase my dose any further. Thankfully they look at a trend. I also take daily 75 Aspirin. I am 67 with no underlying health conditions. Good luck with your appointment.

[jodary in reply to Maurabawn]

You sound very similar to me as I am also ET MPL . I am still on 500 daily with no wish to increase further I am also 67 but have hypothyroidism. I have the opportunity to try interferon but am hesitant as the consultant said no at the beginning because of my thyroid but is now saying maybe . I could try an increase in Hydroxy as she wants but am hesitant about that as well . I have hair thinning on the current dose . I feel like the consultant has me labelled as an ark ward patient as like you I have been quite assertive in saying what I think .

[Maurabawn in reply to jodary]

No harm in being assertive! We have a strange, very rare condition! My hair has also thinned with Hydrea but that can also be a side effect of other treatments and simply getting older. It’s a dilemma as to which treatment path to take. Try to be as informed about your individual case before making decisions. I believe that you can change between meds if needed? Just make sure that you have regular checkups. All the very best. Keep us updated as to how you get on.

[Lyndjs]

Hi jodary ,

I'm in Burton on Trent. No MPN specialist here but hunter5582 has previously share an MPN specialist list on here and I believe I did see one listed for Nottingham. If you check his posts, you should be able to find it.

I'd be very interested to hear how your journey goes. I have PV and recently started Peginterferon 2a, 45.

Happy New Year to you and to all on the forum 🎉

[Pippapot]

I am currently under the care of the Haematology dept at Nottingham City Hosp.Dr Jenny Byrnes is the MPN specialist, I am not seen by her but they all work in the same dept. I get seen every 2 - 3 months have bloods done when I get there and results and consultation within 10 -15 mins. Happy with care.

[jodary in reply to Pippapot]

Happy new year . Are you currently on treatment ? Do you have ET and what is your platelet count ? If you don’t mind me asking .

[Pippapot in reply to jodary]

I have ET, Calr. My platelet count is currently 570. It is a bit raised at moment due to having had shingles.I take aspirin and Hydroxy 500 x5days and 1000 x2 days. They wanted to raise Hydroxy but agreed to wait until I recovered from shingles. My next appt is next week, so will see what happens.

[Tortina]

Hello

I am a patient at Nottinghsm City hospital haematology dept .

I have had an mpn and subsequent stem cell transplant . I see Dr Jenny Byrne who is the lead consultant there and she is excellent . She is an MPN specialist.

I have no hesitation whatsoever in recommending her . Nottingham City hospital has a specialist MPN team and facilities . There are 4 other consultants in the team all experienced with MPN’s and the whole team work very closely together .whoever you see you will be well looked after .

They also have 3 excellent specialist support nurses who you can contact about any concerns .

I can’t fault the care I have received .

Good luck on your journey .

Tortina

[jodary in reply to Tortina]

Hi . Thanks for replying . I have been a patient at this hospital for 12 years and have never seen an MPN specialist . I see a consultant haematologist but have not heard of Dr Jenny Byrne . And since covid I haven’t seen anyone only telephone appointments . It’s only now that I have resisted increasing my hydroxy that they have suggested me coming in . I wonder why this is. .

[Tortina in reply to jodary]

Hi again

I can’t comment on your condition as I have no experience of it . I had early stage myelofibrosis and had a stem cell transplant at the city last July .

I wasn’t on any medication prior to my SCT .

I used to attend clinic on a Monday morning when I had MPNU ….. an mpn which is in early stages and is unspecified at that stage .

Maybe you attend a different clinic ?

The other consultants who are the MPN consultants are Dr Erico , Dr Lwin , Dr Malik and another one called Tom and I cannot remember his surname . Dr Byrne leads the team like I say .

I suggest you visit the hospital like they suggest . It’s a good thing to be monitored . Then you can ask questions when you visit . I’m sure they would transfer you to the MPN unit if they feel it’s necessary . In any case you can express any concerns you may have when you attend the clinic .

. Hopefully you can get an appointment soon ., Try not to worry you are attending a good hospital which has excellent care for MPN’s if required . Some people you meet in clinic travel 100 miles or more to visit clinic at the Nottingham city hospital . It is one of the few centres of excellence in the UK for MPN’s .

Best wishes

Tortina

[Afya23]

Hi Jodary

I have ET JAK2 transferred my care at City Hospital under Dr Fran Wadelin . I feel looked after now. My MPN Nurse Specialist is great too !

[jodary in reply to Afya23]

Hi thank you for replying . Can I ask you what treatment you are on ? And what your platelets were/are now ?

[Afya23]

Hi Jodary I am on interferon 135mcg fortnightly. my platelets have gone down to 400 . Have been on it for about 9 months. The unfortunately my BMB have shown low grade fibrosis. I suffer from debilitating fatigue post interferon so just getting on with it .