I am just enquiring how often do you get to see your Haematology consultant regarding your MPN.
When I lived on Teesside I had my bloods taken every 10 weeks and my consultant saw me to discuss the results. Since I have moved to Stratford I only see my consultant once a year for 5 minutes, or as long as it takes to say “Your blood levels are stable, see you next year”. I get my results over the phone from a haematology nurse, who are very nice but I just don’t feel as supported here.
I was diagnosed with PV 9 years ago and have never met anybody else with PV so you can imagine my surprise when my husband returned from the shops to say a new resident in the scheme had the same condition. I now have somebody to bounce concerns off of and, like Hunter, he is extremely knowledgeable about the condition.
I just wanted to find out how long in between visits is it to see your consultant. Thanks in advance.
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jillydabrat
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I have not had a face to face consultation since before covid.
I get 3-4 month blood tests and phone calls (from various members of the haematology team ) had a face to face with a consultant in '21 to sign forms (hadn't met him before)
I have concerns so am requesting one next week when I am due a phone call, which may or maybe not be with same person I spoke to in January. I always request a print out of blood results and it is a hit or a miss whether I get them along with my medication. Luckily I have a good GP practice but they do not have specialist knowledge.
I live in the United States and after two years I still see my hematologist every six weeks and get labs in her office. I have ET JAK2 and take low dose Hydroxyurea. I plan on asking her for a longer time between appointments.
Hello Jill, nice to hear from you . I’m still having fairly good contact with Haemo at James Cook. My bloods are taken by nurse at G.P’s a few days before telephone consult with usually the Haemo Dr. I’m under, usually every two months but at end of last year when I had problems, it was every month. My last consultation wasn’t with usual Dr. And he made it 3 month telephone appointment which is 3 rd June. I do find that the communication by the nurse team isn’t good. On the only two occasions I have had to ring with a problem between telephone appointments with Dr. they’re not available and will ring me back, which they never do! I hope you are liking Stratford and getting along alright, health and otherwise. Glad your blood counts are stable. I forgot to say, I don’t have any face to face meetings with the Haematologist since Covid . All the best, Fran.xx
hi Fran, lovely to hear from you! I hate it in Stratford and wish to God I had never moved but I needed to get Stef closer to our friends should anything happen to me. We just decorated the apartment and had wooden floors put down, so much easier to keep clean with the dogs and our wheelchairs. Glad to hear you are doing okay. and I hope it stays that way xxx
I see my regular hematologist face-to-face about every 16 weeks at this point. I do labs every 8 weeks. I was seeing my MPN specialist face-to-face every 6 months, but changed it to yearly at my request. My MPN care team would see me more often if needed.
The decision of how often and how to be seen (face-to-face vs telemedicine) is properly a shared decision. I would not be comfortable with being seen 1x/year for five minutes. That is not adequate care for a condition as complex as a MPN, even when it is stable. Suggest you advocate for yourself regarding how you want your care to be delivered. I suspect that you are not seeing a MPN Specialist as these docs are more tuned into MPN patient needs. Perhaps you should consider consulting with another doctor. here is a list. mpnforum.com/tsr-the-list/
I was diagnosed with ET in 2011. I see my haematologist every 3 months and have a blood test a week before a face to face meeting. If I have any queries/problems, I ring/email her secretary and will either get a message or call from the haem.
I am given the option of a blood test before or after I see her(!). Needless to say I have it done before. I was also asked whether I preferred a face to face appointment or a phone call.
While not an MPN specialist, I feel confident in her and that she listens to me. I do hope you find a more satisfactory situation regarding treatment and contact. Sallie
I 'm in London. I see the consultant every 3-4 months and blood tests are undertaken a couple of days before that and available for consultant to view results before the appointment. My last appointment was cancelled by the hospital (no reason given) although this was substituted by a future appointment 6 weeks after the cancelled one.
Upon diagnosis it was every month with three phlebotomies then it tapered off to every three and now it varies between 4 and six but I have to have a blood test Donne every month. I see an haematologist/oncologist here in France.
When first I was diagnosed with MF I had blood and face to face weekly now after four years blood and video call every 8 weeks face to face anytime I want it
Hi,I have PV and see my consultant every 3-4 months, with blood tests every month. A haematologist calls me, after my bloods with results and any medication changes or venesections. I also have a contact number for a team of specialists nurses 24 hrs. I started Peginterferon 6 months ago, so being closely monitored.
Great question. I can see we are all different, in our careplans. Very interesting to see.
You can always contact Blood Cancer UK by phone or email, if you'd like to chat. They are very responsive to email and, in my experience, I found a phone call/ chat very helpful.
Once a year doesn’t seem often enough, even if you’re stable. I agree with Hunter, maybe you should try and find another haematologist. Perhaps your GP could help? At the moment I’m seeing mine four weekly. I hope you can settle better into the area where you live. Best wishes. Lizzie
I’ve just moved to Edinburgh and so far I’ve seen my haem once ( at the Western General) and am scheduled for monthly f2fs.
I also have a new GP practice- University Health Centre- I can phone and if need be get same/ next day appt. And they phone back when they say they will. It’ll be busier from Sept when new students are back, but even so….
So far its a much better NHS service than it was in Surrey.
I so a Registrar on my first visit (pre diagnosis )and found her to be very unsympathetic with poor communication skills.
That was March 23.
I rang up a fortnight later to complain and she rang me back with the blood result which she had told me would take 2 months to come back.
I have ET.
Since then I have only seen the Consultant nurse .
I have
3 monthly appointments at the Royal Shrewsbury Hospital and my blood is taken before I see the nurse.I have just recieved my next appointment in June and it says that I will see the Consultant or one of his staff! I guess this is because its 12 months since I started on Hydroxy.
But I am disappointed that I have never seen the Consultant and I don't consider it good enough.
gosh. How different everything is for everyone. I ve had PV for 15 years and until 6 weeks ago saw my superb consultant every 6-8 weeks. Now on interferon and have been seeing him, at his request, every 3 weeks. I have his email and if on occasion I email him he always replies within a few hours.
I d move to another hospital Jilly if I were you, one with an mpn specialist. Why not email Maz at mpn voice for a buddy as well? Louise xx
My wife has always seen her hematologist face to face for the past six years since diagnosis, and the longest time was nearly 8 weeks, but invariably more like 2 to 4 weeks. With the ability to email and phone in-between appointments if there are any concerns such as bleeds, or bruising which may result in an interim blood test.
I was diagnosed Feb 24 with ET Jak2 following 4 weekly blood tests to check progress during high blood pressure meds, my GP was curious to find out what was happening.Since Feb I have been on weekly blood tests to check up on how Peg4 Interferon is progressing my levels.
I have had two calls from the MSN specialist care nurse to see how I am 'getting on' and have a video call with the consultant 3 months after the initial consultation.
I was last at my consultant 3 years ago!!! I now get a phonecall once a year from them. My bloods are taken 3 monthly at my small local hospital and I get a letter telling me the result.
Obviously I would demand to see them should the need arise but the status quo seems fine for now,
I now feel rather set adrift having read others' replies.
I was diagnosed with PV 4 years ago and have a phone discussion with a member of the haematology team (I'm with a large hospital in Leeds with a large cancer centre) roughly every 8 weeks and I get my bloods done by a part of the same NHS trust a few days beforehand. The team like to see me in person once a year if nothing untoward has arisen but I have to make sure that happens. I do have access via email or phone to a clinical nurse specialist if needed. I always ask for the main blood count data although kidney and liver tests are done routinely as well. In the discussion I go through any questions or concerns that have arisen since the last discussion and my haematocrit is discussed to decide if I need a venesection. I do seem to be allowed a fair amount of time with each call, around 20 minutes or so. My GP practice plays no part in this process other than be sent a copy of the clinic summary letter. Although I can't rely on speaking to the same person each time I've now got used to the specialists in the team and they seem to be getting to know me. Luckily they all seem to be well informed on MPNs. My most recent venesection was last Sunday and while it felt odd being there with the place virtually deserted, as well as being offered the usual drink and biscuits I was offered a sandwich so no complaints.
Don't forget that if you're feeling a bit isolated there is the buddy scheme offered by MPN Voice who can put you in touch with someone with a similar diagnosis. This can be a way of being able to share anything and also pick up hints and tips. There are also the various forums that are held around the country where, if convenient to attend, you can meet others and hear about developments. I can thoroughly recommend these!
I meet with MPN dr. every 3 months, local hematologist every 3 months, get labs every 3 weeks and phlebotomy as needed. I have daily access to both dr.s via portal or phone if needed. They are very responsive. I am very fortunate.
I considered my previous haematologist to be ‘lacking in essential knowledge.’ As such , I now haven’t seen anyone in years. That includes gps. Moved back to uk, and have no plans to register with a gp. All going extremely well . Fit, well and very happy. 😊
I saw my Haematologist in October last year when I was first diagnosed with PV. Since then it's been a telephone consultation every 3 months, with a blood test a week prior to the consultation. I also have blood tests every 5 weeks to see if I need a Venesection, thankfully have not needed one since Christmas. I am under Southend Hospital and, so far, my consultations have been with the same Haematologist
Hi! When I lived in London I would see the team at Guy's every 3 months, but on starting new drugs (HU and later Pegasys) more often initially. Now I am in Italy and they have Besremi here which they will only let me have one package at a time (which lasts one month) and so I am being seen every month. A bit of an overkill in my view but it is necessary in order to get the drug (I found out at the chemist that it costs 3500 euro a pack ... thank goodness for national health!)
See my MPN specialist and get bloodwork done every 4 months (used to be monthly, then bi-monthly then quarterly) and that looks like it will remain the regimen as long as things stay stable.
Bloods every 3 months. Pre covid it was fa e to face after bloods. During and post covid telephone call with haematologist after bloods. Fine with me as saves going to hospital. If I don't feel well between appointments I get a blood test and let them know a get a call on what rests are and treatment if necessary. I can always have a face to face if I want. PV for 16 years.
Hi Jilly although by Bloods are pretty stable I have Blood Tests monthly and Venesection when needed I have easy access to Consultant and Nurse Specialists which I am very grateful for from Southend University Hospital please take care and all dealing with this didease
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