Thank goodness I found this site.

[Stevesmum42]

Had a visit to my Haemo today, the 10th visit in a year, despite this she asks me on every visit ' now did we do a bone marrow biopsy?' Which of course I had had. I feel rushed , and she always appears distracted with her computer and papers on desk. I ask questions but things seem to be brushed aside. My Hydrox was increased today to 2 per day,of course I groaned when she told me...more chemicals into my body...she just said it doesn't matter how many you take. I was tearful coming home, that has not happened since I had my bone marrow biopsy. Just feel better being able to write this down. Sorry didn't mention I have ET . Thanks for reading x

[piggie50]

Hi Stevesmum42,

I see from a previous post that you live in Devon, I wonder which hospital you attend? I go to the R D & E in Exeter. Apart from one consultant who reduced me to tears about 4 years ago, I have had mainly sympathetic consultants. Mine does not even have a computer on the desk. Are you in a position to maybe travel a bit further and change hospital. We have enough to cope with without the extra aggravation of being seen by someone like this. I complained to my GP about my treatment 4 years ago and she actually found me on my next visit and apologised.

Is there anyone else you could request to see? Try to keep your chin up and know you have the support of everyone here.

Take care x

[Stevesmum42 in reply to piggie50]

Thank you so much for your reply...that made me cry ..your kindness. Wow I must be down. I am near enough to visit RD &E will talk to my GP Again thank you x

[rubyrubyruby]

I agree, if you are not happy with your consultant I would ask for your GP referral to a different one. I did and now travel to London, one and half hours each way, rather than using my local hospital which is 10 mins down the road!

Our conditions are complex and you need to feel like you are getting the best treatment and support you can.

Hope it works out.

[sand-bog]

Hi Stevesmum42, I agree with piggie50 and rubyrubyruby, you need to get a new haemo, one who cares more and treats you as a person. Good luck and I wish you all a healthier 2014

[LouisePRV Volunteer]

Hi,

I agree too!

You know, these medics are so loaded down with work, I sometimes believe that they just take the easier option and give us yet more medication.

I have PV and take 500mg on 3 days per week and 1000mg on 4 days per week.

I haven't seen the same consultant for the last three appts, each time seeing a different foreign one. Maddening.

On my last visit the haematologist peered at my results and said, all is fine.

I then asked what my haematocrit was and he said 46, to which I replied, I'm sorry, but I think that's too high.

He immediately said I should add another 500 mg a week.

I refused and said I wanted a venesection.

Slightly taken aback he complied - obviously not used to being questioned!

We have to stand our ground and to some extent look after ourselves.

Have you looked at mpdvoice.org.uk.? Brilliant website.

Lots of info, great support at the forums, and if you dig deep enough, people you can contact for direct support.

I'd definitely change my consultant if I were you.

Meanwhile, we're all friends here in the same jolly old boat, slightly baffled but determined not to be walked over!

With best wishes, chin up, don't be sad, there are some haematologists out there. Louise

[LouisePRV Volunteer]

Me again!

I meant to say, some great haematologists out there of course.

Don't be concerned about the frequency of your appointments, I see a haematologist every 4 to 6 weeks too.

They're just taking care of us.

Louise x

[daffodil2]

Hello Steves Mum I also had to suffer a consultant who was completely disinterested I was so stressed everytime I had to go to see him. I have been suffering with PV for the past 18 months and when I asked him questions he would answer with might be or could be. However I researched and found a wonderful haematologist, I have to travel further but it is really worth it, the other one wanted to increase my hydroxycarbomide and I had a struggle to persuade him to do a venesection. Since I transferred my blood results have all been better and I did not need to increase my medication. I think if you can move please do its worth it in the end Take care Daffodil

[Hidden]

Yes, I think many of us know how that feels. I don't know if how that is how the word "clinical" came into modern use when referring to something or someone being treated in an impersonal and cold way. Sometimes the most competent Haematologists would win no prizes for a "bedside manner". They may be particularly rushed at the clinic and neglect to think about a patient's vulnerability that particular day because they are under pressure and maybe running late because of understaffing etc. It is not ideal I know. However, we are here for you and I have recently been advised to contact MacMillan Cancer Support for extra moral support. I might add I haven't done so yet.

I am on two 500mg capsules of Hydroxycarbamide per day and have achieved recently platelets of 406 which is great. After starting off at 800, they had come down well but in June after some stress, took a hike again. I have Polycythaemia Vera and JAK2 positive. I was diagnosed in December 2011.

I know Hydroxycarbamide is not ideal and have the same worries as you about it but mostly I feel 100% better on it. I have troughs which I go with knowing that I will come out of them again. There will always be ups and downs but compared to the symptoms I had before diagnosis it is a real improvement.

With all good wishes.

[Aime]

Hi Stevesmum42, Sorry to hear you have a consultant as bad as that. Definitely take the other forum members advice and see about a change. I have been brushed off, felt ignored, etc and have ended up in tears too and my hubby did not seem to understand as he thought the consultant was ok!! We then ended up arguing and more tears but he did come round to how I felt.

Please remember as piggie50 and the others have said, you have support here from people who know, understand and have empathy for what you are going through. Have you got a buddy? Ask Maz and she will arrange this for you. I also agree with what Louise said that sometimes if you stand up and say to the consultant I don't agree with that, etc, then that can make a difference to their attitude, especially if they realise you do know more about your illness, then they are giving you credit for.

You take care, remember we are all here for you. Aime xx

[ourlife]

Hi Stevesmum42,

I know how you feel, I got to the point where I was taking 4 HU pills a day and my consultants attitude was "well stop taking them then see what happens ! side affects are better than the obvious outcome of doing nothing." He would sit in his chair and roll his eyes ( he looked more like a fruit machine than a Dr) I Knew more about ET than he did and all that concerned him was that my counts were within the boundry's, and then he seemed to move the goal posts to suit him.

I went to my GP to ask for a second oppinion and it was the best thing I have done, I changed hospitals fond this site went to a couple of forums in London and am now under controll, happy and have come to terms with this condition.

Good luck ourlife

[tommy123]

i have et now on magic tral

[Twinkly in reply to tommy123]

Can I just say welcome to you tommy 123 ,I'm also on the Majic trial ,how are you doing?? I'm feeling so much better ,I was taking hydrea.and blood thinning ,but being venesection every 4 weeks ,now it's 4 months clear..how long have you been on this trial?..twinkly ...

[tommy123 in reply to Twinkly]

about 4 weekshad troubl with my platlets going up now gone down to 300 was 13 00

[catkinspolymer]

HI StevesMum,

There is nothing wrong with 2 Hu capsules a day many of us are on that or very close, As i have said before I have been lucky and have had ET for 19 years on Hu all the time and luckily no side effects.

Generally I find the quality of Doctors in the provenances pretty appalling and whilst I did quite well in Swindon with Hematology the same hospital was disastrous for my daughter when she had a spinal tumour. If you can spare the time and the money go up to London and see Claire Harrison at Guys at least once. There may be some expertise at Bristol but I am not aware of it. My feeling is that if you feel your hem is poor the say so.This NHS is ours , not the Doctors and they have no divine right to treat you badly.

Hope this helps

Town Crier

[Nirbhebe]

So sorry that's been your experience. I have had frustrating experiences with my hematologist doc too. I recently went to a different hematologist and sadly, she was worse. It plays on my confidence. I often feel my questions get brushed off. This site helps me to feel more same! I hope it does the same for you. I really hope the other hospital turns out to be a better situation for you. I have ET too. It has such a range of symptoms and folks have such varied reactions to HYdroxy....I feel that plays into our uncertainty when at a doc visit. Take heart, your questions are important and valid and the Hematologist is providing a service, you have a right to shop around for someone who can remember you from visit to visit.

[Little-friend-Susan in reply to Nirbhebe]

Very sorry to hear of your experiences. I was diagnosed with ET 5 years ago following a routine blood test and my GP knew nothing about it. I could chose from three local hospitals to go to and chose the one which could offer the earliest appointment as I was told it was urgent. Following a bone marrow test I was put on HU and have been taking it ever since. There is no discussion with my haematologist, he looks at the blood results and decides what the dose should be. After the second appointment I was given a booklet and that is the only information I had. He has now decided to transfer all his patients 'like me' to another consultant so we shall see. I go every 4 months at present because the results are within normal limits i.e. under 600. I have learnt more through this site in the last 2 months than I ever kinew before.

[Nirbhebe in reply to Little-friend-Susan]

Thanks Susan,

I think that MPN's are far from a gravy diagnoses for the docs. They can't fix the symptoms....and HU just kills cells so it only manages the situation rather than fixing it. Not very satisfying for them or us. I remember what my father in law told me once long ago. He was an anesthesiologist. He told me that generally docs hate treating folks they can't fix. Like folks with back pain....or us folks with a chronic illness....especially such a complicated one as any MPN. It's kind of human nature....to rush through or downplay issues one cannot easily fix. Management of chronic conditions takes endurance and it's just not very glitzy it does not feed the docs good feelings...ok I see I'm kind of on a rant....thanks. Whew, it's great to have this site and people like you who get it. Long story short, I try to do some perspective taking after an upsetting hematology appointment and sometimes that helps me.

Love to you in the new year....here's hoping for new treatments!

Nirbhebe

[Stevesmum42 in reply to Little-friend-Susan]

Thank you all so much for your kind responses and help. I know we are a sort of family of kindred spirits and I can't emphasize how much stronger it makes you feel. You are incredible. X

[tommy123]

i have et now on magic is anyone on it to

[nana77]

I would get a new hemotologist. The doctor should know if you had a bone marrow biopsy, she should know this by the information in your chart. I took two 500 mg hydroxyurea until my white count got too low. I am now on 1 a day and my platelet count is within normal range. Hang in there but don't settle for a doctor you don't like, or one that isn't paying enough attention. Good luck to you! K

[Hidden in reply to nana77]

Hi Nana,

When were you diagnosed with E, T. what was your platelet level at that time?. Were you first started with 1 Hu )500mg in the beginning, & then increased. What was your average platelet level with fluations. My level varies usually from 450 & then up at times, Last time my wbc were the lowest they ever were. I know the wbc counts go up & down plus others due to the meds. My next wbc is due first week of May.

Hope to hear from you

Adail