Confused

[Jules153]

Hi all, I’m a little confused I’ve just had my telephone consultation and my consultant has informed me that because my blood levels are now in range (which is excellent) I will be passed to my gp.i have ET and jak2+ I’m also on hydroxy,has anyone else had this I thought the hospital would look after me! What do you all think?

[Rem31]

That can’t be right for any MPN patient and I’d be shocked if your GP will be happy taking on your care and treatment. Ask your GP to refer you to a specialist MPN haematology team and not the hospital which now seems to have discharged you from their care. Be firm and keep us posted.

[Jules153 in reply to Rem31]

Thanks for your help I really feel let down my GP doesn’t seem to know about mpns,one even told me she wouldn’t have bothered about my high platelets so I don’t have a lot of faith in them.

[Hizak in reply to Jules153]

That's strange. My blood test results have been "in range" for over a year now but my consultant stills sends me for a quarterly blood test with follow up 'phone consultation. He also prescribes the hydroxy, he won't let me get it from the GP.

[Otterfield in reply to Jules153]

GPs tend not to know much about MPNs as it's such a specialised area. I would be more concerned about the approach of your haematologist. If your GP won't refer you could ask to see a different GP at your practice?

[Wyebird in reply to Jules153]

Even more reason fir an MPN specialist

[Oscarsboy in reply to Jules153]

It's not good is it. I discovered my own high platelet level by looking back at my test results over 18 months only to find they had been continually rising and the GP surgery never picked it up.

[hunter5582]

That is ridiculous. Care for MPNs needs to be managed by a competent hematologist. Passing care to a GP when you are on chemotherapy that requires management by a competent specialist is irresponsible. Perhaps it is time to change hematologists rather than going to a GP. MPN care is best managed by MPN Specialists, not regular hematologists anyway. Here is a list. mpnforum.com/list-hem./

[LadyAbash in reply to hunter5582]

Hi

I thought having an MPN was a specialised subject? Especially as GPS do not q know the nitty gritty about MPNs. I also thought that platelet counts can sometimes rise and fall even whilst on the approved medication. I would raise your concerns with both the GP and the hospital specialist. If you get no joy then go to the hospital Trust and find out whether this is a cost cutting measure then take it from there. You could also ask to see a different specialist. This could also be a simple mistake as these too can happen! Good luck!

[Jules153 in reply to LadyAbash]

Thankyou

[IrishHiker]

I have that done because I have been so stable for over 22 years. Just do bloods twice a year and if I have any ET concerns I call specialist.

[Wyebird in reply to IrishHiker]

So glad you have been stable for 22 years- out of curiosity what level of meds are you on if you don’t mind me asking?

[IrishHiker in reply to Wyebird]

500 mg Hydrea every other day and 80mg aspirin each day. My last counts were around 275.

[Wyebird in reply to IrishHiker]

Oh gosh thrilled for you to be on such a low dose. Before interferon 17 hydroxi plus 8 anagrelide a week with platelets 450 and still rising. 6 years diagnosed.

[Kari1961]

Oh no, I wouldn't like that at all. My GP knows very little about PV and MPN's, I have a joint care plan with my Haem and GP, but I have very little to do with my GP about the PV. I just order my Hydroxy from the surgery when I need my prescription filled.

I saw my GP a few weeks ago about a matter not related to PV and mentioned to her about Covid Vaccine Antibody testing, she contacted my Haem and then passed his reply to me. They work well together. My GP is excellent, but I wouldn't go to her for anything PV related.

[HazeBlue]

A lot of GP’s have no idea about ET. I would insist on follow ups with haematology .

[Ebot]

My bloods have been ‘within range’ for months now since the Hydroxy kicked in - apart from the ones that aren’t, which show I’m taking my Hydroxy as ordered! Yet my Haem team (at Guy’s) still request to see me every three months.

The point is, the only reason your ET is within range, is because the Hydroxy is working but that’s no reason to dismiss you back to your GP. It’s not a cure all, the drug has to be monitored and MPNs are unpredictable.

Certainly visits might be more spaced out with maybe GP visits to check bloods etc in the interim especially if your circumstances / geographical location made it challenging to get to the hospital. However, I would be alarmed to be ‘passed back’ to my GP (who would freely admit this was beyond her skills set).

[wendycu]

This happened to many years ago. Then the GP found out that they couldn’t gave me my prescription of hydroxy. (Only hospitals can hand out cancer drugs) plus the blood results would take up to 4days to come through. The GP told the hospital they had to see me at their clinic.

[Garstongal in reply to wendycu]

GPs CAN prescribe Hydroxy…mine has been doing so for over a year now. My haematologist said he’d be happily for that to happen provided I could persuade my GP to prescribe it and the chemist to dispense it. Thankfully, I have a very progressive surgery and this system now works beautifully. Collecting it from the hospital pharmacy was taking almost two hours each time!!!

[Runner999 in reply to Garstongal]

My hospital has posted every months since Covid !

[nightshadow in reply to Garstongal]

I suspect that whether or not GP's can proscribe may vary from country to country

[Uzza]

I'm in Australia. I'm off Hydroxy now and just on Aspirin, but I'm still managed by the Hemos at the hospital, but 6 monthly.

Cheers,

Uz.

[Joetcalr in reply to Uzza]

I'm curious Uzza, how did you manage to get off hydroxy? I thought people were stuck on it for ever, cos counts keep going up otherwise. May I ask what your age and blood counts are? Thanks Jo

[Uzza in reply to Joetcalr]

Hi,

My platelets are on the high side of normal, my leucocytes are out of limits but only just. My allele burden is about 14.8, which is on the low side. That may be the answer. My Dx was 62yrs of age, and I am ET Jak2 pos. I ceased Hydroxy because I started to develop ulcers and cell lines dropped dramatically.

Cheers,

Uz

[Jules153]

Thankyou all for your helpful comments I think I’m going to be a big brave girl and insist on staying with my hemo,my next appointment is in 4 months time so that will be interesting. Regards to all

[Wyebird]

Aaaaggghh that’s not right. Unless it’s gp in between consultant appointment. Are you in the UK?

[Jules153 in reply to Wyebird]

Hi I’m in the UK, I do get the impression that he can’t be bothered with me, any symptoms it’s go to the GP, trying to see a someone at the moment is a nightmare.

[Wyebird in reply to Jules153]

I do hope you get a different consultant

[Jules153 in reply to Wyebird]

Thank you

[Chaucer89]

I had this 20 years ago with the oncologist I was seeing. I have 6 monthly blood tests at GP to keep an eye on things but that’s it. Pressures in the NHS unfortunately, it’s happening in multiple areas. I recently moved areas and asked to switch hospitals for rheumatology department (I also have a autoimmune disorder) and got a letter saying due to current situation within the nhs, my case will be put to review whether I’m just monitored at GP, given a telephone consult or actually seen in person. I’d say stick to your guns if you want to remain seen, sometimes have to be firm to get what you entitled to.

[Minu68]

My haematologist says once I’m stable I’ll be seen less, maybe even monitored every 6 months, telephone check with my specialist nurse (based at haematology) and see haematologist once a year. But was very clear that I will stay under haematology forever!Ask to see a different haematologist, referral, whatever…. If this one isn’t interested in our MPN care, he’s not right for you!

[Otterfield]

Another thought, without meaning to be alarming, is that changes in the blood can happen without necessarily causing any symptoms. Blood results are complex and need to be interpreted by a specialist.

[mhos61]

Unacceptable! I hope this isn’t an indicator of what’s to come.

I have ET, my bloods have constantly been in range since beginning hydrea five years ago. The only adjustment that was made in response to this was my clinic appointments were extended from three monthly to four monthly.

As others’ have already noted GPs are not specialised enough to monitor any relevant changes; no offence to GPs but ‘G’ stands for General! Some forum members have even had difficulty with their GPs recognising MPNs as a Cancer. My former works GP required proof from my haematologist that ET was a Cancer, as he thought it was a ‘disorder.’

Significantly, the fact that you’re on cytoreductive therapy indicates you fall into the ‘high risk’ category. How can being referred back to your GP make sense in that respect?

[Runner999]

Ask MPN Voice for advice (Maz has not popped up on here as far as I can see) or McMillan Cancer Care.But if you are discharged, then make sure you have a full history of all of your blood tests and that these are then supplied by tests done for your GP - and pop them onto a spreadsheet with the "normal" ranges noted at the top of each column.

That way you can see if things change to seek more help.

I do this anyway, so I can ask consultant if anything "happens".

[Oscarsboy]

Agree with everyone else, this should be hospital's priority not GP surely.

[Scrollernut]

Can’t say much different from what’s been said as I totally agree this is not acceptable. I have the exact same as you do and on Hydrea and for almost 2 years now with count in normal range and I still go for blood draws every 2-3 months with physical. My GP and my hematologist are in contact with each other with all test info but GP isn’t involved with care other than keeping informed of progress. If a question or problem comes up either one will tell me ask ….. because it’s outside their expertise and should be addressed by the other. Time to change… good luck. Keep us informed.

[MPNBlog]

Many haematologists struggle to stay across MPNs let alone a GP. I would not agree to this. BTW, your GP should not agree to this either, especially as you are on HU. Time to get a new Haematologist/consultant.

[Mardigras]

Hi Jules,I should say that I would be confused too. I have never heard of a hematologist taking someone with an MPN off their list. Whether your levels are in range or not, your bloodwork requires a specialist to monitor it. Things can sometimes change very quickly with an MPN and that is why it is recommended that we all have three monthly visits to a consultant. You don’t say where you are, but if it is in the UK, it might be advisable to speak to PALS or ask your own doctor to put you in touch with a different hematologist.

I have ET Jak2+ and I spend six months out of the Uk each year. My hematologist insists that I see a consultant whilst I am away to monitor my condition. So should you.

I wish you well Jukes. Take care.

[Hydrox]

I am ET jack 2 + 11 years on hydroxy + aspirin, have not seen a consultant for 4 years, have a specialist nurse I converse with 3 monthly, can’t get to see a gp re Covid,