Calling Scottish PV's

[rjw1]

Hi

I've posted in the past with various questions and I thank all for your responses....i have now got to the point where I think a second opinion on my PV would be beneficial, this is because I am now seeing different consultants at my monthly clinic.

I would like to know if there is an equivalent to Professor Harrison in Scotland.....im just looking to get some consistent and good advice as my current clinic feels like a conveyor belt!!

best wishes

Richard

[JediReject]

Hi Richard , , just to say I went through exactly what you are experiencing a few years ago, seeing a different consultant each time and with a different view on my disease progression. One told me that my MF didn't register on the scale and there was little wrong with me worth worrying over. I was on Hydroxycarbamide, spleen 20cms, fatigue, itching, blood transfusion. So you can imagine I was less than impressed. I eventually got fed up and went to another clinic 60 miles away to seek expert opinion which resulted in my Stem Cell Transplant 4 months later.

So stick to your guns and try and find a second opinion. I'm sorry I can't help you in your quest but good luck with it.

Cheers Chris

[rjw1 in reply to JediReject]

Thanks Chris.....i just cant understand why there is so many differing opinions amongst so called consultants.

The search continues!!

Richard

[Skyehope]

Hi Richard

I'm very interested in this thread as I have been wondering the exact same thing! May I ask whereabouts you go at the moment (you don't need to name consultants!)? I've been at Inverness for my appointments, though there haven't been many so far but I felt a bit dismissed by my guy and feel something was definitely lacking.

Thanks

[rjw1 in reply to Skyehope]

Hi skyehope ,

I live near Helensburgh and my clinic is held at the vale of Leven hospital...the main consultant retires next month and then I understand clinic will be covered by a series of locums'.

Richard

[Skyehope in reply to rjw1]

I imagine that would put you a bit wrong and that you'd be happier seeing one person who really understood what you were experiencing and journeyed with you so to speak. I hope they find someone permanent to replace the main guy so that you can stay close to home. Best of luck with it all.

[Aime]

Hi Guys, I live in Scotland too and Maz gave me the names of two haematologists at Edinburgh infirmary I think. Maz, could you give the names again please- I have put them in a safe place!

I always said that I would go for a second opinion if my PV advances or I'm unhappy about the clinic at Aberdeen a Royal Infirmary as Edinburgh would mean an 8 hour round trip for me.

Thank you Maz and kindest regards Richard - I hope you get satisfaction and I'll be joining you if I have any doubts!! Aime xx😺😺

[Skyehope in reply to Aime]

Thanks Aime. Yes, in Scotland, our options seem limited without travelling hundreds of miles. If only Professor Harrison had a travelling clinic! xx

[Aime in reply to Skyehope]

We could all offer Prof Harrison a holiday if she could do a travelling clinic - I wish!! The fatigue makes the travelling harder and even if I'm not at my worst with fatigue, it's still a thought!

Even Edinburgh is a thought but for you it's even further Skyehope.

Kindest regards Aime xx😺😺

[rjw1 in reply to Aime]

I'm quite prepared to travel if i get good advice...so Edinburgh is not a problem...perhaps professor Harrison might be able to recommend a good person in Scotland...but I don't think she would do that without upsetting her peers!!

best wishes

Richard

[rjw1 in reply to Aime]

Hi Aime

Thanks for your thoughts...i would be interested to get names of the Edinburgh consultants.

Richard

[EleanorPV in reply to Aime]

Hi Aime, you made me feel less alone. I’m also in Aberdeen with PV.

Eleanor

[lizk1993 in reply to EleanorPV]

Hi Eleanor, just thought I'd say hello. I'm also in Aberdeen with PV

Liz

[EleanorPV in reply to lizk1993]

Hi Liz, pleased to hear from you. I’m in a&e as Ward said they had no space for a venesection. A&E furious with Ward. I’ll let them fight it out. BP dangerously high. I’m in the best place. At least it’s an easy fix. Sorry brain fog. Eleanor

[lizk1993 in reply to EleanorPV]

Oh dear, hope they get the BP under control quickly. And oh dear, that there wasn't enough space in ward to get it done there. Sign of the times methinks, ARI seems to be very stretched in all directions. I saw a surgeon about gallbladder/liver problem in April this year. He referred me for MRI which I got in July and I've not heard a peep since. Think the NHS is only just coping just now. Hope it improves, sooner rather than later.

Liz

[beetle]

I have recently moved from Scotland and while I was living there my consultant referred me to Claire Harrison and I flew down to see her. There is an MPN specialist at the Beetson in Glasgow who I found difficult as he would not make eye contact. His name is Mark Drummond. I be.ie e there might be someone in Edinburgh too but have no experience there.

Hope that helps. Best wishes, Jan

[rjw1 in reply to beetle]

Hi Jan

where is Claire Harrison based?

Richard

[jeanr in reply to rjw1]

Dr Harrison is at Guys and St Thomas Hospital Londond

[EleanorPV in reply to beetle]

I found Mark Drummond amazing. I saw him privately. Top marks and recommended the interferon I needed.

Eleanor

[beetle in reply to EleanorPV]

I am glad you liked him. I just found his lack of eye contact very off putting.

[Eoin]

Hi I've just been diagnosed with PV and I didn't even see a consultant I saw a registrar who was helping the consultant I assume due to workload I was interested to find out if you found a specialist in PV as I definitely want to speak to someone about why I have been prescribed hydroxy so early especially as I don't have any of the symptoms associated with PV and if there are alternatives. I have my first venesection on Monday and will tell nurse of my decision to not take hydroxy if you can help it would be much appreciated

[rjw1]

hi Eoin

where do you stay in Scotland?

I'm currently on holiday in London and back up in Scotland tomorrow night...be able to reply better on my laptop...using phone right now .

bye for now

best wishes....Richard

[Eoin in reply to rjw1]

Near stirling going to forth valley at lambert tomorrow

[rjw1 in reply to Eoin]

hi Eoin

I was diagnosed with pv nearly 2 years ago with the only symptom being a slightly enlarged spleen....for 6 months I just took aspirin in the morning and refused hydroxy for 6 months...but every month they took a pint of blood...after 6 months I started to get bad fatigue and sore feet...i then decided to take hydroxy...i take 2 x 500mg every day....we are all different and medication is dependant on the results of the monthly blood tests..good luck tomorrow and let me know how you get on...

Richard

[Eoin in reply to rjw1]

Thanks Richard whilst I've known for 4 months I may have PV it was confirmed last Thursday at clinic, it was still a shock to be told I needed to take hydroxy immediately without giving me any explanation as to why it is interesting that you refused to take it as I am about to do tomorrow. im not happy with clinic as I've not seen a consultant face to face yet and feel a little let down by the whole process especially not knowing everything I want to know I'm a pretty positive guy normally but I've got to admit this is making me feel a bit low I'll let you know how I get on

[Eoin in reply to rjw1]

Sorry Richard but forgot to ask my original question, got caught up moaning about clinic! Did you find a specialist mpn consultant in Scotland?

[rjw1 in reply to Eoin]

Hi Eoin

I refused hydroxy because it's chemo which filled me with horror....eventually the consultant convinced me it was the best way in light of my blood results and symptoms.

As far as an mpn specialist in Scotland is concerned I don't know of one...the only name that crops up is professor Harrison @ guys hospital

Have you contacted the mpn website?

[Eoin in reply to rjw1]

Hi, yes I did I contacted maz but not sure if it got there still finding my way around site I've not had reply. I feel exactly as you did! Had first vene today and said to nurse about not taking hydroxy she contacted consultant and the same registrar came to see me quite embarrassing really. I was about to post my numbers when you contacted me to see if anyone was similar to me and what meds they've been prescribed I found out today that my platelets were at 500 (he didn't tell me at clinic that this was significant) which is why hydroxy, it is my decision but it looks like it's inevitable unless someone else out there has been told otherwise

[DonaldOrr in reply to Eoin]

Would recommend the MPN Voice forum in Edinburgh on 15th Sept.

[DonaldOrr]

It would be great to be able to access specialists in Scotland. I recently travelled to London to see one and got feedback which conflicted with my current treatment. The report is to go to my GP and local haematologist and it will be interesting to see what then happens. But basically it seems I shouldn't have been on Hydroxycarbamide at my age (55). Also my local guy insists PV is not a cancer and that fatigue is not a symptom if your numbers are under control. As we say in Scotland, aye right.

[Eoin in reply to DonaldOrr]

Hi Donald really appreciate your reply. This is all a bit of a shock for me as it is I am sure for everyone who is diagnosed but know there is somewhere I can ask questions as this is all I seem to be doing, trying to get information and question everything, in denial really. Went to first vene yesterday and it is early days, I am very wary of taking 'chemo' so early in my condition. Been prescribed 2x 500gms per day but given time to think over before seeing consultant ..,for first time! (hopefully) in 4 weeks. My questions now are why put me on this dosage (x2 daily) when my platelets are just over. I thought they would start off with lowest poss dosage to see how it goes.

[DonaldOrr in reply to Eoin]

Mine started off low 500mg and increased to 1000mg weekdays and 1500mg weekends. I just did what I was told because you put yourself in these guys hands. But now I'm really starting to question local guys knowledge. But I suppose ours is a rare disease and they are trying their best with limited knowledge.

[rjw1 in reply to DonaldOrr]

Hi Donald...I would be interested in what your gp makes of someone else's findings.

I just can't get to see the same haematologist for more that 2 clinic visits and different consultants have different views on symptoms.

Best wishes.... Richard

[DonaldOrr in reply to rjw1]

It will be very interesting as the London specialist said he would have to be careful how he worded it. But I will be asking if I am able to switch, perhaps to Dr Mark Drummond who appears to be a Specialist in Glasgow Beatson

[EleanorPV in reply to DonaldOrr]

I found Mark Drummond to be the best specialists to treat me so far. Amazing up to date knowledge and wasn’t threatened by my knowledge. Eleanor

[Aime]

Really a great guy, totally agree with what Eleanor has said. Aime x😺😺