Hospital appoiment not till 4pm ,very anxious wait

Due to see Doctor at 4pm for my latest platelet and Lhd test results , i nearly cancelled because im in severe pain with my back since weekend ,walking and sitting a problem ,so im hoping its still good news re my blood levels to hold of my going on HU , Doctor said once its at 600 i will need to have the pill they were 560 10 week ago, and i am at high risk age , so dont think i should miss my slot at 4pm today, hope everyone on here doing okay ,and enjoying there life to the full best as they can ,i still feel so tired and very low dispite being on vit B now for 9 weeks 😞 and im not anaemic either ! best wishes Holly 

[Helen1952]

Hope your appointment goes well Holly and your back is soon mended .

I have mine at 2pm so platelet lowering vibes for us both 

Xx

[Hidden in reply to Helen1952]

Thanks Helen, good luck this afternoon , let me know how it goes love Holly xx

[Mazcd Partner MPNVoice]

Hi Holly, hope all goes well today, and that your back gets better, it's horrible having a bad back you have my sympathy, sending you lots of love Maz x x x

[Hidden in reply to Mazcd]

Aww Thank you Maz , yes im afraid im rather snappy at home and cant do things i want xx

[Paul42]

All the best for today.

Paul

[Hidden in reply to Paul42]

Thank you Paul 

[Hidden]

Good luck with appointment Holly. Hope all goes well. Let us know how you get on Lizxx 

[mol56]

Must be the day for MPN appointments. I had my telephone consultation this afternoon at 2pm.

In spite of being ill with a flu virus and cold after cold recently, my bloods were good. Platelets only 385 and other blood levels okay.

Hope you have good results today.

[Hidden]

Thanks everyone, yes platelets still in 500 so im spared again with starting HU ! she said i must keep bp low and chorlestral well im due a check as was over 2 year ago last test at doctors so will that that done ,was weighed and BMI check , all good. she said im at risk of TIA so stay healthy and dont miss asprin , hope shes right i go back in July She still insists ET jak2 pos isnt a cancer , its a pre cancer , so im confused .my Gp always told me its a form 

 of cancer of blood ... best wishes keep well everyone Holly xx

[Hidden]

Hi Holly sorry to here about your sore back, hope it is on the mend. Hey my platelets are 735 last test 3 weeks ago.  Haematoligist said won't start HU till next year! The big 65!!  I didn't know that some haematoligist go by platelet count before starting HU Lyn xx

[Hidden in reply to Hidden]

Hiya Lyn was reasuring reading your post ,thanks ! well mine seems to go by age and certain risk factors, i have been on bp pills since last year and statins around 7 year so there my risk factors plus the fact being over 60 also, i will be 64 in june , im hoping to hold off starting HU at least till after sept when my daughter will be getting married! in case i feel more crappy than i do haha . i have bad osteoarturitis ,since my late 30s , Do you have any other health issues ,if not could be reason your Doctor holding off the HU ? all the best Holly x

[Hidden in reply to Hidden]

Hi Holly, I think i have been lucky through out my life  my major hurdle is cluster migraine, recently seem to be getting more and more! Not sure why? I put it down to shift work haha! Because I am great when on holiday!! 😎 my neurologist told me just give up work! Yeah right I said!! Not quite ready for that. The pain of them is only 3/10 so I can go work! Haha other than that only got decrease in sight and hearing! Old age! It's a shame we live so far apart. NZ is a long way away  luv Lyn xx

[Hidden]

Ho mol56 yes must be , your count is very good eh, are you in Uk , only i think thats good idea if no need to go to consultant every time for results best wishes Holly 

[Phelpsy]

Hi Holly 

I'm so sorry to hear your back playing up

 ( nothing worse ) I've just seen your age 

NEVER , you look like your in your 40/50s

Wow well done you , 

As for you going on HU it's not the green eye monster it's made out to be ,  

I hope your feeling better very soon X

Love Pam x

[Hidden in reply to Phelpsy]

Hi Pam thank you wish i was in 50s haha feel better already.  its my heamatologist who keeps downing the HU ,she said skin goes horrid and all sorts of problems can happen , but i dont uderstand her really Pam ,by saying all this because plateletts wont lower its inevitable i will go on it for sure when i reach 600 there 556 at min but she is always warning me of TIA etc and age love Holly x

[Phelpsy in reply to Hidden]

Don't worry about what if X

Stay healthy low fats & lots of healthy greens drink plenty water , , plenty walking & BE HAPPY , my Niece 37 just had brain tumour been asleep for 4 weeks but woke up this week ,😜🙏

Enjoy Life ,

it took me 3 yrs to come to terms with my Diagnose's 

We never know at any age what's around corner X

Love Pam 🙏❤️💗

[Hidden in reply to Phelpsy]

Thanks Pam ,you really uplift me , gosh im so sorry to hear about your niece , happy news she as woken up Thank God eh hope she makes a full recovery , its doesnt help with me my huband is a glass half empty person and very cynical its made me worse im sure ,but onwards and upwards from now on eh i told you several times your my inspiration ,when i see posts of what you do love Holly xxx 

[mickey64]

Hi Holly, glad to hear your platelets are still in low 500.  Great news!  Lindiloo I have ET, I am 64 and Jak2+.  I was on Hydroxurea and had all kinds of side effects and my platelets hardly budged.  Finally after 4 months they got down to 550 highest was 800.  Went to an MPN expert and he told me (at the time my platelets were 640 and I was on meds HU) no meds especially not HU for me because he said I had cancer before and there is a slim chance it causes other cancers.  no meds until its over a million.  He knew my age, he took his own blood work, he examined me etc.  Hmmm I said so after getting really sick in February I stopped the meds, told my local hemo and my GP.  My GP agreed with the expert but not everyone agrees with this expert.  ok so I went to another expert thought I would take two out of three and he agreed with the first expert for now and talked to me for over two hours.  So now you would think I would happy but noooo I'm not, why because people say your taking a chance, your could have a stroke or embolism etc etc, so with that thought in my mind what is a person to do?????.  I can't even sleep at night!  My last blood test they were 700, scary.  But then again last year before I knew I had this they were 750 and I had no idea. 

I have thought about starting the HU again and I probably will, my local who is not an expert but a really nice guy wants me on it.  The two experts in the MPN's say not now and if I need medicine they would not put me on HU?.  So I'm going back to the first expert with BMB in hand which I asked for it from the local guy but never got it.  I have heard so many different things, such as people that are Jak2+ have lower platelet counts, and higher risks well that can't be altogether true because some have high and some low and if you are Jak2- you have higher platletes.  Well I'm heading back to the first expert and then my Local, I want to try the pegasy, have heard all good things about it and they say the earlier the better.  Then today I heard they are trying to get Jakifi approved for ET so that interesting also.  Would love to hear anyone thoughts on any of this?  Mickey