CALR MPN ET - platelet count has increased

General chat
21

Thanks Gemma
I did have a dedicated nurse when l was first diagnosed but with what the NHS had gone through she had to relocate back to a different hospital.
I will definitely use the support services if l need them.
Thanks again l really do appreciate all the support l have had from everyone xx

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22

Thank you Erica.
What l have learnt through everything is you have to keep on going. But now l have everyone on here to help me along the way xx

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23

You definitely have :+1:t2::+1:t2:

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24

Whoopee! I am feeling elated as my blood results were better than I dared to hope for.
Haemoglobin was 109 and platelets were 643! Hydroxycarbamide down to three tablets a week.
I have a very good haematologist. I asked her last month for a prognosis, which is difficult to work out due to the rare combination, but today, she told me that I am low risk - more good news.
I am going to have a talk with my GP, before I make a decision on knee surgery, but I am feeling much more positive. Thank you so much so much for your encouragement and please let me know how you get on at your next appointment. Kate xxx

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25

Oh @KateS I think a great big celebration is in order.
A good haematologist is also such a bonus.
Please let us know what you decide about your knee surgery.
Look after yourself

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26

Thank you Erica. I have found this Forum to be so helpful. I will let you know when I decide.
Best wishes.
Kate

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27

I don’t understand blood results but I can feel the excitement in your post and am glad to be sharing this amazing news with you.
What a day you’ve had. I really hope you are celebrating! Lots of love X

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28

Thank you Nichola, I am just relieved to be going the right way, and very thankful.
Best wishes, Kate xx

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29

That’s fantastic news Kate. I am so pleased for you.
I received my appointment letter today. The appointment is not till end of March :pensive:
I will of course let you know how it goes.
Keep up the good work and fingers crossed for the knee surgery xx

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30

Don’t you just hate the wait for appointments!

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31

I know, any longer and l will run out of my Hydroxycarbamide!!!

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32

Hi @Maureen31, perhaps it is always worth having a Plan B just in case it looks like you really will run out of your Hydroxycarbamide.
I always like to have a plan up my sleeve.
Look after yourself

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33

Good to hear from you Maureen. I am feeling doubly blessed as for the last 6 months, I have had a four weekly appointment with my haematologist. Treatment seems to vary so much depending on where you live.I I would be getting very twitchy if I was running short of hydroxycarbamide and I would be

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34

Hi Kate

In the beginning l was having appointments every 4/5 weeks but then it all changed at the hospital. I think that some of doctors in the Haematology department were deployed to other hospitals. Only a few were left at my hospital covering the same amount of people, so then there was a longer time in between appointments. All my appointments apart from the 1st one are over the phone and limited to 5 mins or less.
Sorry it sounds like l’m moaning but this is my life at the moment.
This is still so new to me l just thought that maybe it was the same for everyone. But l’m really glad you have a better experience.
I will have to ring Haematology and arrange my prescription if l think l will run out.
Anyway thanks for listening have a great weekend. Keep in touch it’s good to know we are not alone :grinning:

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35

Hi @Maureen31 I think you are really entitled to say what your experiences have been, yes, it can be a postcode lottery I am afraid. You certainly did not sound as if you were moaning, but it would be fine if you did.
You are part of our forum family now so really be kind to yourself and please keep posting

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36

Hi Maureen, I don’t think that you were moaning at all. I am struggling to adjust to my lack of energy and not to overdo things as I did at Christmas. It took ages to get over that. My husband used to say that if there was a hard way to do something, I would find! Now I am trying to be kind to myself. I lost my husband to prostate cancer over twelve years ago.
Onwards and upwards!!!

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37

Hi Everyone
I just want to say a huge thank you for all the love and support you have sent me. It really helped knowing l am not alone :smiling_face_with_three_hearts::smiling_face_with_three_hearts:

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38

That’s what’s so important about the forum. We are never alone x

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39

I really agree as I have gained so much since joining the forum .I, too, feel so less isolated and more hopeful for the future. Thank you everyone whose posts I have read.

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40

Yes @KateS you never need to feel isolated again as you are part of our forum family now.
Please keep posting and look after yourself

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