Hello @oleconchi. Please don’t be hard on yourself. It’s understandable to have mixed feelings when starting a new medication. You aren’t being selfish. Don’t forget everything you are coping with - the blood cancer itself plus the terrible symptoms you are experiencing. I have been taking Ruxolitinib for a few years now for Myelofibrosis. They will probably start you on a lowish dose to begin with to see how you get on. I had regular blood tests to begin with as it can make some of the blood counts drop a bit, especially the haemoglobin (Hb) in my case. I hope you enjoy spending time with your sister and have a relaxing time. Thinking of you. Thank you for sharing with us. Warm wishes. Willow X
Oh @oleconchi I don’t think that you are ever selfish and you never go on and on.
I could completely relate to your mixed feelings as I read them.
I think my emotions have been oscillating at every stage ever since I was diagnosed, what a mixture they have been and no logic to them and if in doubt it is just all too much or I burst into tears.
3 weeks with your sister in Mallorca sounds just what the doctor ordered to me, enjoy, you deserve it…
Thanks for your post I have learnt a lot about my own emotions from you.
Be kind to yourself
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I went to the hospital yesterday for a venesection. I saw my specialist doctor. We discuss the new medication “Ruxolitinib”, which I will be starting in the next few days. I am waiting for the pharmacy to let me know when.
When I told her that I had booked a 3 week holiday in Mallorca, just as I had suspected, she said that they will have to monitor my new medication weekly to start with, for at least 6 weeks.
And so, I cannot go on my holiday . I had already booked and paid for the flights. But, as disappointed as I am, I do understand and, of course, my health comes first.
So, this is where I am at the moment.
Has anybody in this forum been prescribed Roxolitinib for VE or Myelofibrosis?
I have been reading about the possible side effects and I am very scared. Some of them sound quite horrific.
I would be very grateful to hear from anybody on the same treatment.
Thank you and my very best wishes to all of you. xx
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Hello @oleconchi. So sorry you can’t see your sister as planned. Please see my reply to you above which I hope reassures you a bit. As I said I have been taking Ruxolitinib for Myelofibrosis for a few years now. It did make my blood counts drop, especially the haemoglobin (Hb) at the beginning, hence the need to be monitored regularly. It took a while to find the correct dose for me but apart from the Hb dropping I haven’t had any awful side effects and it is helping me with some of the unpleasant symptoms I have been experiencing due to the myelofibrosis. Thinking of you. Warm wishes. Willow X
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Hello Willow
Thank you so much for your post. I really appreciate it. And it has helped me more than I can tell you.
I have not started the treatment yet, but hopefully I will start in the next few days.
The reason they allowed me to be treated with this medication, is because I had been suffering with awful itching and burning of the skin and had tried many different types of antihistamines , creams and phototherapy and nothing helped. In fact, since I stopped taking the antihistamines ,
my itching has got better (bizarre!).
My consultant has assured me that this treatment should help me with the awful itching.
And once the treatment and the correct doses is settled, hopefully I will be able to go back to Spain and see my family.
Again, Willow, from the bottom of my heart, THANK YOU. My warmest best wishes to you. x
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Oh @oleconchi from what you said I know how much you were looking forward to seeing your sister and actually, at last, going away for for a long awaited break and I am so impressed that you are putting your health first.
Is there any chance you can transfer your tickets for a later date?
I am so glad that you will be so closely monitored though.
Oh, it really is bizarre about your severe itching isn’t it.
Please do let us know how you get on.
Take lots of care of yourself
Hi @oleconchi ,
I am so glad that you are going to be given “Ruxolitinib” and I have everything crossed for you.
My dads itching has got slightly better as he went to see a neurologist who gave him some good advice as it seems to get worse when he is anxious and she recognised this. She gave him some coping stratergies and well as prescribing him aspirin to take with the other meds he is on. The itching always does seem to subside for a few days when he is given new meds and then it comes back, so we are hoping this is more of a long term resolution. He is actually thinking about trying to have a shower if it does not get bad again later this week.
Please keep me updated on how the “Ruxolitinib” works for you. I am hoping and praying you get the relief you need.
I also hope you are able to have a fabulous holiday.
Best Wishes. Sue x
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Hi
Just a thought, when we go to NZ, we can have blood tests done and the results are emailed to our U.K. Medical Centre for them to prescribe a new regime if necesssary.
Of course we have to pay privately for the blood tests . I t does mean that we can travel if all parties involved agree.
Nothing is impossible is this digital age, after all, all my consultations are by phone but they could be by FaceTime.
Marylin
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Hello SueM
Thank you for your post.
I have been taking Ruxolitinib for just a week and my nasty symptoms have disappeared ! I am soooo happy, I cannot tell you! It is like dreaming a wonderful dream! After 2 years… 
I had my first blood test this afternoon just to see how things are working. Hopefully I will have the results tomorrow by phone.
I can have showers without it causing agony in my skin! I can put moisturisers without stinging my skin!!
All the best to your dad. I hope he has found a relief from his itching. It is horrible.
Forgive my spellings. I am typing very quickly.
Isn’t this group wndeful!? oleconchi
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Oh @oleconchi what a complete joy it was to read your response to @SueM.
I am smiling because I am so happy for you.
Now perhaps you can have some fun
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I am so happy to read this! Thank you so much for updating us. Got my fingers crossed your blood results show everything is working as it should. Take care, Alice
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That is absolutely fantastic news @oleconchi, I am so happy for you as I completely understand the difference this will make to you both physically and mentally.
My dad’s itching has got slightly better. His most recent blood test showed a decline in his high blood cell count which I think must have had something to do with it.
If it starts to get worse again at least I know there may be something out there that could possibly help him.
Thank you so much for letting me know your positive news.
Sue. X
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Thank you all so much. I continue to feel fine. No itching or stinging!
In about 8 days I will have another blood test and a telephone consultation with my nurse specialist.
If things go as I hope, and with my team approval, I will book my postponed holiday to see my family in Mallorca. Please keep fingers crossed for me.
Sending love and best wishes. Oleconchi x
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Oh @oleconchi great news, fingers and toes crossed for you, you really deserve to see your family.
Be kind to yourself
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Wonderful news…must feel like heaven
Can i ask how long it took to work…hours…days?
All of us was hoping you got some help.
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It was MAGIC ! It took a couple of days to work! Thank you so much. I still feel that I am dreaming. No itching, no burning, water, creams…I can use anything on my skin…! 
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Dear @oleconchi, I am so happy to hear your news. Knowing that your symptoms have improved is wonderful. Continued wellness and take care.
Gemma
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Thank you all from the bottom of my heart!
I had a blood test this morning. And a telephone consultation with my nurse specialist next Friday.
I do hope all is good and I can soon re-book my holiday to see my sister in Mallorca.
I feel so well, physically and mentally. I am so very positive. I cannot stop smiling. I am going to start dancing regularly again. I have missed living a nearly normal life and it is great!!
Thank you for being happy for me. Sending my very best wishes to you all my lovely, caring virtual friends. xx
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Oh @oleconchi I cannot stop smiling reading your post either, I am so, so, so happy for you my caring virtual friend xx
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How are you doing @oleconchi?
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