NOT HAPPY

[Smoothie2020]

My hematologist decided he would see his patients every 3rd visit. So since I only go twice a year, that means I won’t see him but every other year. This makes no sense to me, especially since this is a rare blood cancer and just how much does a Nurse Practitioner know about this cancer? I’m definitely scheduling with an MPN specialist. The closest one to me is about 3 hours away, but I gotta do what I gotta do and that’s look out for me. I’m going to change my hematologist too.

[Cat_lady52]

Yep, it sucks. I was told that I'd see a consultant once a year and specialist nurse phone call 2 or 3 times a year with blood results. But only 6 months later, nurse has told me I won't see a consultant again till I turn 60, 6 and a half years time ! When they will want to put me on meds.

I'm watching and will continue to watch webinars to gether info, so when I do see a consultant the list of questions and requests will take longer than the 15 minutes appointment.

I will obviously ask to see consultant before, if I feel things aren't right, but have been told that's unlikely to happen....

ET Carl, aspirin only and in UK.

Take care xx

[hunter5582]

One would think that the every third visit would apply to those with more frequent visits. This ratio would not logically apply to someone only going 2x/year. If it does, that makes no sense at all. I would definitely change hematologists if that was the case.

Perhaps you can consider a shared care arrangement. I see the MPN Specialist (2 hours away) 1x/year to review my care plan and my local hematologist more often for ongoing care. I do all my labs with my local hematologist. this arrangement works great.

[EPguy]

A Dr switch as in order as you plan. As an interim measure, can your NP order FBCs and other routine blood tests? You can then know at least whether your MPN and effects of your meds are stable. If not, you can present a good case for more timely Hem appts.

[Smoothie2020 in reply to EPguy]

My labs are every 3 months and right before my doctor appointment. I’m concerned now if the hematologist is even reviewing my labs once I leave.

[EPguy in reply to Smoothie2020]

As AndyT notes below, the most important time to have a consult is when things are changing. Since you have access to regular tests you can know. If your blood counts are staying in range with none standing out, symptoms and meds stable, there should be less urgency.

My MPN specialist in effect said the same. With boring numbers, boring meds (Rux) and quiet MPN symptoms, we don't need to discuss much. But still, wishing you good progress finding a caring Dr soon, esp if things are not stable.

[Tyce500 in reply to EPguy]

Hi, just reading your comment and note you are on Rux, what is your MPN diagnosis? I was prescribed Hydroxycarbamide immediately with ET and no mention of other drugs at the time? Thanks.

[EPguy in reply to Tyce500]

My Dx is PV, while my BMB and blood counts looked more like ET at the time of Dx. While PV is usually considered a more advanced MPN (details matter of course) PV gets access to more approved drugs. So I didn't push for a different Dx. Besremi and Rux are two examples. I recall there are ET pts using PEG inteferon, which is off label for both MPNs, and now in shortage.

I was on IFN (Besremi). You can see my post Last Dose why I switched.

Another drug for ET is Anagrelide, it controls platelets. But it is normally used only when HC or IFN are not working out as it can have a more troublesome side effect profile. Finally a new drug that can control platelets is in late trials, Bomedemstat, but available only in those trials for now.

[Tyce500 in reply to EPguy]

Thank you for the information, I see now what you mean by going with the PV diagnosis. Best wishes.

[shiftzz]

I have bloods every 3 months, I get a phone consultation a few days after the blood test.

I have not had a face to face in about 4 years.

It's not always a doctor,could be a specialist pharmacist or specialist nurse.

My bloods have been very stable during that period, but, I think the next one matey result in a venesection.

135 pega every 10 days, plus aspirin. Diagnosed over 10 years plus, JAK2 was positive, now JAK2 negative.

Good luck..

[AndyT]

As my ET has been stable, on Pegasys, I haven’t had a face to face consultation for over four years. My phone consultations can be with the consultant haematologist herself, another doctor on her team or the consultant pharmacist - I’m lucky that the whole team is very knowledgeable about MPNs and any questions or concerns are escalated to the haematologist if needed.

Although my ET remains stable my lymphocytes have risen steadily over the last year or so and it looks like I’m now developing CLL too, so my next consultation will be face to face. At that we will assess the results of NGS and other additional investigations they’ve carried out recently and decide on the best treatment approach going forward.

I’ve been happy with a lighter touch standard of care while stable but welcome a more hands-on phase now.

[Loubprv Volunteer]

Heavens. That’s utterly appalling.

I decamped 12 years ago after dreadful service from a plethora of locums - I knew more than they did.

I have PV and saw my superb haematologist every 6/8 weeks when I was on hydroxicarbamide. ( 16 years) I m now on Ruxolitinib and see him every 4 weeks.

You don’t say what your problem is.

Please change to another hospital - you’re entitled to go where you wish. If your gp refuses to refer you then politely say that you will seek advice from the GMC.

I travel around 2 hours there and 2hrs back to see my haematologist. Worth every mile.

Suggest you seek advice from Maz at Mpn.org.uk

All the best

Louise

[Stevesmum42]

I too have not seen my haematologist for 4 years , we get a telephone consultation every 12 weeks. I don’t really like this system, but we have to accept the situation.I must admit I would like to see my consultant face to face occasionally .GPs are the same now you have to jump through hoops to see them consultations are done mainly on the phone . Which is sad as a lot of information can be gathered by a paitent walking in to an appointment body language pallor etc.🤷🏼‍♀️.

[SUFCbaldy]

I was diagnosed a year ago. I had an initial consultation with my Haematologist. Since then it's been telephone consultations, approximately every 3 months. I have blood tests ever month to see if I need a Venesection.

[jointpain]

Oh dear, my wife sees a consultant haematologist every couple of weeks or every month! Never anyone else. They do say she's an enigma though😜 and now gets a phone call from the top man in Christie's now she's started Jakafi. I wonder if it's because she's lovely? Or that I'm an armed forces veteran?

[Nerjalover]

you need to ensure you see an MPN specialist. Not all Haematologist are experts in our rare form of cancers as I know to my unfortunate experience in 2020!

[dogsandhorses]

I had to go to an MPN Specialist 4 hours away when I couldn't get my Hematologist to pay attention to my issues. He was a big help, and found me a local Hematologist that he knew, and is a much better physician. Specialist got me into the new Hem in a week, and the new one calls me if there is something that comes up. He sees me every 30-60 days depending upon what is going on with my blood, and is responsive to the portal. I feel that going to the Specialist was a real blessing.

[Smoothie2020 in reply to dogsandhorses]

It’s definitely time for me to make a change.

[dogsandhorses]

👍

[eastwood1932]

I have not seen or spoken to my haematologist since before Covid. I have telephone appointments every 12 weeks, they tried to push it to 16 but I refused. My telephone calls always seem to be with the team Pharmacist. Even when my counts went up and we ended up increasing my HU dosage. I suppose I could raise a fuss but to be honest just to weary to start fighting the system

Janet

[Smoothie2020]

I totally understand.