Telephone review with haematologist

[hall2]

At my recent telephone appointment with the haematologist I was told that in future I’d only have a review every 6 months instead of every three to four months. In between they would ask me to send a blood sample in but there would be no follow up unless necessary. I’ve never had this before. I am with Leicester hospital. Has this happened to anyone else?

[Minu68]

I’ve been told that the aim is to get blood count stable, now on 12 week reviews, and that when they’ve been this way a while I’ll go onto 6 monthly, then ultimately onto yearly consult, with just blood tests every 3 month. I’m now speaking to haematology pharmacist rather than consultant at my check up too

[hall2 in reply to Minu68]

Thanks for your reply. I'm glad I'm not the only one!

[hunter5582]

I have been on annual checks when I was on aspirin & monitor for ET when I was younger and asymptomatic. When I progressed to PV and have been more actively in need of treatment, checks have been more often. At times. labss every 2 weeks and appointments every 6 weeks. We did tele-video appointments for a while during the COVID spike. I never had to settle for a telephone appointment. We have been back to live appointments for well over a year now.

At this point, we are monitoring CBC/CMP every 8 weeks. Live appointments are about every 16 weeks with my regular hematologist and every 6 months for the MPN Specialist consult. I could request more often but do not feel the need. My docs are readily available if I have a question between appointments.

Ultimately it is up to you to decide how often you feel you need to be seen. If you are stable and asymptomatic, then every 6 months may be fine. The question is what are you comfortable with?

[hall2 in reply to hunter5582]

Thanks for your reply. I feel a bit uneasy about less frequent consultations but I’ll give it a try and see how things work out.

[Trocken]

mine have varied, however I’ve always had bloods every 12 - 16 weeks, sometimes I’d just see the pharmacist in the clinic, other times the consultant. When my blood works not been conforming or meds have changed I’ve been seen more frequently. When you say ‘send in bloods’ are they therefor expecting your GP surgery to do this? You may just want to check that your GP and Haemotologist are on the same IT system so it’s linked, mine isnt!

[hall2 in reply to Trocken]

Thanks for your reply. Yes I’ll get the bloods taken at the GP and they will be sent to the hospital.

[shiftzz]

Hi

I’m also with Leicester and have been on 3 months consultations since pre Covid. My numbers are fairly stable HCT ok at 0.45 but last one was slightly over so they upped my Pega.

Im happy with 3 monthly, but if my numbers remain stable them I would be happy to go to 6 months. Last year I had by phone consultation when I was sitting in a café in Gibraltar.

[hall2 in reply to shiftzz]

Thanks for your reply. I’ll see how it goes for a while. Great having your review while on holiday!

[Mood2020]

yes they offered me this too but I said I preferred the 3 monthly reviews because I tried the 6 month review (with option of sending in a sample of blood in between) on one occasion and I forgot to do the sample in between . Depends on your individual case I guess! Speak to them if you’re not sure! I’m back on 3 monthly reviews for now

[hall2 in reply to Mood2020]

Thanks for your reply. I’m assuming they’ll send a blood form out to me with a letter. At least I hope so or I’ll forget!

[Cat_lady52]

Will the hospital let you know the results of your tests ?

[hall2 in reply to Cat_lady52]

Yes they usually send a letter and also to GP.

[AndyT]

Thanks for sharing. I’m with Leicester too and in haematological remission on Pegasys.

I’m normally on 16 week intervals between appointments - sometimes less if they want to monitor anything that has shown up in recent bloods.

I guess the recommended interval depends on each patient’s level of control of blood counts and their other illnesses, risk factors etc - if I remain stable I’d have no problem with a 6 monthly consultant appointment and an interim blood test with no appointment if all is ok.

Telephone appointments suit me fine - much better than a 2-3 hour wait in a crowded waiting room!

When I’ve had interim blood tests before they’ve given me an extra blood form and I’ve still had it done at LRI.

[hall2 in reply to AndyT]

Thanks for your reply. They send me a form which I take to GP.. I’m going to see how it goes.

[SoledadBarcelona]

In my opinion it must be based in how do you feel physical and mentally. They dont take care the phicology point of view what is very important. If you want my opinion, I considere, although I dont know your disease, is too much time BUT it depends on your situation, how long you are in, traitment, etc

[hall2 in reply to SoledadBarcelona]

Thanks for your reply I’ll see how it goes!

[Kizzy03]

Hi, yes ! I’ve been informed I’ll be doing this too. At first I thought I’d only be checked every 6 months , but! It’s actually every 3 months, one is like you get bloods done and they contact if needed,( although they send a letter to tell you what bloods need done , to give to the nurse at your GP)

Then the same thing happens in another 3 months ( so that’s six months time) and then the Specialist Nurse will call me to speak. I think with this system I then might only see the Haematologist Consultant once a year face to face !? But to be honest, as long as they are checking my bloods every 3 months and the Specialist Nurse is on the end of a phone and I’m speaking to the nurse at my GP surgery every 3 months I’m happy. I’ve also got a Great resource of knowledge from everyone on hear.

This wasn’t explained to me either, and I eventually spoke with a secretary to my consultant, who very kindly informed me of how it was all going to happen.,Hope this helps

Kiz

[hall2 in reply to Kizzy03]

Hi thanks for your reply which helps. I’m glad it’s not just me!

[Nikon7]

sounds like good news for you. Congrats on the de-coupling from medical appointment!

[hall2 in reply to Nikon7]

Yes it’s good to have a positive view!

[Hydrox]

I have not seen a haematologist for at least 5 years, a 3 monthly visit to the specialist nurse. Had a problem with low white cell count for a year or so, but she managed that ok. I am ET + on aspirin and hydroxycarbamide.

[hall2 in reply to Hydrox]

it sounds as though it’s all going that way!

[Hydrox in reply to hall2]

That's OK as long as we can request a heamatogist if we are having pronlems.

[Hydrox in reply to Hydrox]

Sorry. problems

[hall2 in reply to Hydrox]

yes I agree. There is an MPN nurse I can contact and also a phone number for emergencies.

[tracey13]

Hi,

My husband always had an appointment every three months.

Now he puts bloods in every 4 MTHS and had two telephone appointments per year.

If he has any issues or worries he can ring to speak to his consultant.

If his bloods are a problem his consultant will ring him. So in all he's still well looked after.

My husband has post PV Primary MF . He's on ruxolitnib

Tracey

[hall2 in reply to tracey13]

Thanks for your reply. I have ET CALR. it’s reassuring to know that other people are being seen just as well with less appointments.

[CooperS1]

Hi, I’m in North Lincolnshire and my care is now covered by Hull Teaching hospital/Castle Hill. I too was notified by letter that because I am classed as ‘stable’ (I have ET Jak2+) i.e. all my bloods are within a ‘normal’ range, and have been for some time, I will only have 6 monthly blood tests. I queried this with a very knowledgeable haematology nurse who is on the review team. She explained that they have a medical team who review your blood test and if your levels have changed and this needs discussing/your dosage of meds need changing they will ring you at the allotted telephone appointment time to discuss. She said that if I have any concerns at all to call them otherwise it will remain at 6 monthly reviews and they prescribe 6 months of medication. I’ve just had my second 6month blood test etc and thankfully no phone call. The only frustrating thing is it can take up to 3 weeks to receive their confirmation of the actual blood test results by letter.

[hall2 in reply to CooperS1]

Thanks for your reply. It looks like this is a general trend!

[MWxxxx]

I have had something similar. During covid obviously went from face to face to telephone appointments, which actually suit me fine. I have my blood checked and a follow up telephone appointment every 8/9 weeks. I have PV and am on hydroxy and aspirin. Platlets usually in the normal range, red cells ok but very low in ferritin which results in occasional iron tablets and very high wbc. So "not normal" but stable "not normal" as my bloods have been like this for some time. During my last telephone appointment I was told they were thinking of moving me to letter only. This would mean I would get my bloods done every 8 weeks and my only contact would be a letter outlining the results. I must admit I was a bit horrified. I get a copy of the letter that goes to the GP anyway which takes weeks to come through, sometimes not at all. I certainly don't want to spend weeks worrying about my results. Also, different Haematologists record the blood results in different ways, so it is not always clear by just reading the results how they compare to previous results. I told the Haematologist that I didn't want to move to letter only. He was clearly disappointed but I explained that I often have questions and, as a department, they are really difficult to get hold of sometimes. They have allowed me to keep telephone appointments for now, but I wonder how long it will be before they are dropped completely.

[hall2 in reply to MWxxxx]

Thanks for your reply. I hope they don’t drop telephone appointments! I’d resist that tooth and nail!

[Wyebird in reply to MWxxxx]

do you have a nurse you can contact?

[hall2 in reply to Wyebird]

Yes I do she's very good.

[Wyebird in reply to hall2]

maybe any questions /fears you could email her. Good luck

[hall2 in reply to Wyebird]

yes I will and thank you.

[Wyebird in reply to hall2]

haha mind you this site is amazing!

[Wyebird]

I believe once you are stable the appointments will become less and less. Fear not you will have a blood test in between. .