Clinic appoitment

[Mandz12]

is it just myself but only time I have been seen at the hospital was when I was diagnosed back in January

[Cja1956]

What was your diagnosis?

[Mandz12 in reply to Cja1956]

PV and raised white platelets and I have Lupus aswell. Been on Chemo medication 2 perday ever since January. Jak2 positive.

[Cja1956 in reply to Mandz12]

Most people see their doctors more often. I don’t think I’ve ever gone more than three months without seeing my hematologist. You should give them a call and see what’s going on.

[Mandz12 in reply to Cja1956]

I will ring my key worker x

[Mandz12 in reply to Cja1956]

My platelets count was 1100

[Cja1956 in reply to Mandz12]

1100 is pretty high. You need to insist on seeing the doctor again.

[cs1941 in reply to Cja1956]

I have only seen my consultant 3 times in last three years usually getting fobbed off with the clinic nurse

[hunter5582]

The standard protocol for intimating chemotherapy (e.g. hydroxycarbamide) is to have a CBC every two weeks until dose titration is complete. In addition. regular CMPs to monitor kidney and liver function. During this phase, I would typically see the hematologist every 6-8 weeks. Note that in the USA, many hematologists are not hospital based. We are seen on outpatient practices.

[Mandz12 in reply to hunter5582]

Never seen anybody since January x

[hunter5582 in reply to Mandz12]

That is really not acceptable. There should at least be regular CBC/CMP and consultation with a hematologist/specialty nurse. Suggest you consider your options. The only way to get optimal MPN care is by consulting a MPN Specialist. Many hematologists lack experience with MPNs and just to not have the KSAs to provide optimal care. Here is a list of patient recommended MPN expert docs.mpnforum.com/list-hem./

Assertive patients receive higher quality care. Passive patients do not. Suggest that you deserve a higher level of care. It is up to you to advocate for the care you deserve.

All the best.

[Tico in reply to Mandz12]

It really is not acceptable that you have only been seen once at diagnosis. In the initial stages you should be seen more often face to face until you can be seen to be stable, more so because of starting Hydrea straight away. Also you mention you have Lupus which could be an added complication to your recent diagnosis. I think you are being very let down and would insist on a face to face appointment. I wish you the best of luck. Tina.x☺

[Mandz12 in reply to Tico]

Thank you definitely look into it x

[EPguy]

As others here said, regular blood tests for blood counts are important with MPN, especially when taking medicine designed to change those counts.

Having no info on your condition is like driving without a speedometer. You know your speed (0) when you start but never know it again during your journey.

[ChillyAsh34 in reply to EPguy]

I have a CBC every 3 month and not been to hospital since,nov 2021 ,only phone consultations no further checks

[HazeBlue]

I haven't had a face to face appointment since before covid struck . They do blood tests at surgery and I get a phone call and letters. Did get called for a venesection but only saw a Nurse. I have had ET for about 10 years . Now changing to PV. On hydroxy pills. Will ask for a face to face after October b test and telephone call. I do feel we are overlooked sometimes .

[Mandz12 in reply to HazeBlue]

I agree

[lizzziep]

I haven’t seen anyone face to face since before the pandemic started. Since then had blood taken first at GP, then for last 12 months at a phlebotomy department away from the hospital, then get a phone call from specialist nurse, she says keep taking the tablets, which are delivered a couple of days later. As I have been extremely anaemic for some time I had a bone marrow biopsy 6 weeks ago, I haven’t had the results of that yet! Got a telephone appointment with nurse again on Wednesday, after more blood taken Tuesday. Having bmb was first time I’d physically been to the hospital for well over 2 years.

[ciye in reply to lizzziep]

They should be doing something about your anaemia....

[lizzziep in reply to ciye]

I’ve had iron supplements prescribed but they haven’t done anything, so the bmb was done to see if my ET is progressing to something else. Get the results on Wednesday, hopefully different treatment will help anaemia.

[Wyebird in reply to lizzziep]

6weeks ago I think is unacceptable. Can you contact your blood nurse?

[Mandz12 in reply to Wyebird]

I am now every 8 weeks for my blood test x

[Wyebird in reply to Mandz12]

Over 1000 platelets seem high to me but you have PV I have ET. and I’m not medically trained. iIs your consultant an MPN specialist? If not I’d seek a second opinion.

[Mandz12 in reply to Wyebird]

No neverentioned a mpn specialist to me x

[Wyebird in reply to Mandz12]

Maybe post where you live and ask people for recommendations.

[hunter5582 in reply to Mandz12]

It is essential to consult with a MPN Specialist. This is the only way to ensure optimal care for a MPN. Note that these are rare disorders and many hematologists simply lack the KSAs to provide the quality of care you need. Here is the list again for convenience. mpnforum.com/list-hem./

[lizzziep in reply to Wyebird]

I’ve more chance of tea with the Queen!

[ciye]

I have seen my heamo once since diagnosis in March 20, have regular phone consults.

[Wyebird in reply to ciye]

I’d feel a bit despondent if that was me. So sorry to hear that

[ciye in reply to Wyebird]

She can be dismissive of my concerns, so not so much.

[Wyebird]

Hi I’ve read a few of your replies. When did you last have a blood test, January?

[Mandz12 in reply to Wyebird]

No last blood text was July x my next is September 28th

[gilded]

Hello Mandz12!. This seems a long time between appointments. I’m in London and have a regular hospital appointment with NHS consultant haematologist. When I was first diagnosed (about 10 months ago), I had a hospital appointment every 4 weeks; this was then extended to every 6 weeks and now the length between appointments is about 8 weeks. I have a blood test a few days prior to every appointment.

[Tico in reply to gilded]

Your one of the lucky ones,as they say its a postcode lottery.Tina.☺

[Oscarsboy]

Me neither. I was seen just over a year ago by the Specialist Nurse and started on Hydroxy. I do have a blood test and phone follow up by the Haemo Consultant or Specialist Nurse every three months, and had the opportunity to have one referral with Professor Harrison. No hospital appointments on the horizon just telephone follow ups as above. I am ET Jak 2. My platelets are now under control and all bloods within right levels so presume they feel phone follow up sufficient.!!!!

[conno61]

Every 3 to 4 months for me.

[Mandz12 in reply to conno61]

Oh not just me then x

[Jynx93]

I have only been seen twice face to face in over a year since diagnosis. My appointments are all phone calls now

[Mandz12]

thank you ecertbody for your help.