I have recently changed medication to Ruxolitinib and have been told not to eat out. I love eating out. Has anyone else had experience of this treatment and do you still eat out.?
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Hi @lin.913 and welcome to the forum.
I’m sorry to read about your diagnosis.
I had a different diagnosis Myelofibrosis.
I was on Ruxolitinib as a way to reduce my spleen which is a common issue with Myelofibrosis.
There are a number of people on the forum living with Essential thrombocythemia ('ET') and they may be able to offer a perspective.
I don’t recall being told to not to eat out due to the medication. I was however neutropenic a lot of the time which meant my immunity was compromised.
As a result I rarely ate out or had takeaways as there was a high risk of infection.
On the few times I ate out I avoided salads, carvery as they were considered high risk foods.
The @BloodCancerUK-SupportTeam might be a source of advice.
You can call them for free. More info below
0808 2080 888 (Option 1) to speak to one of our Support Service Nurses in confidence.
Our phone lines are open:
- Monday, Wednesday, Thursday, Friday: 10am – 4pm
- Tuesday: 10am – 7pm
- Saturday: 10am – 1pm
- Sunday: Closed
- Bank holidays: 10am – 1pm
Alternatively, call us anytime and leave a message and we’ll get back to you within one working day.
You might also speak to your Haematology Team or Clinical Nurse Specialist to get them to explain the reasoning.
I enjoy cooking so started to find recipes for foods I might have had out. Surprisingly there are a lot of dishes you can create a good and often healthier option.
Hope that helps 
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Hello there @lin.913, welcome to the forum. I’m sorry to read of that Essential thrombocythemia ('ET') diagnosis. Hopefully the change to ruxolitinib has been going well?
You’re not alone in having that treatment as dear @DuncanB shows. If you’d like to find others around the forum living with Essential thrombocythemia ('ET') and/or taking ruxolitinib just use the search box at the top. Here’s some information from MPNVoice about ruxolitinib for your reference: Ruxolitinib – MPN Voice
I live with a closely related type of blood cancer to Essential thrombocythemia ('ET') called Polycythaemia vera ('PV'), and likely have similar treatment as these Myeloproliferative neoplasms ('MPN') overlap quite a lot. In my case I take daily aspirin and hydroxyurea. I have not heard of why we shouldn’t eat out, unless we’re ill with a virus and want to protect others. Maybe if our blood cell numbers show us to have a weakened immune system, like the neutropenia Duncan mentioned.
My own haematologist has never warned me off eating in public, which I do regularly. I wonder who told you not to eat out? If it’s your specialist I’d just ask them to clarify as they presumably have a reason for suggesting this. Might it be just at the moment while your body acclimatises to the new medicine?
If you’d like to talk the medical side of this over with the specialist nurses at Blood Cancer UK, just give them a call on 0808 2080 888.
Hope that helps a little @lin.913, do let us know how you get on—and what sorts of place you like to eat at!
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Good afternoon @lin.913
Thank you for your post and welcome to our community.
I’m sorry to hear that you’ve been advised not to eat out. We can appreciate how frustrating this may feel, especially when it’s something you enjoy.
We would encourage you to discuss this further with your haematology team, as they will be able to review your blood results, assess your individual risk of infection, and advise on what they would recommend for you personally.
They may have given this advice because Ruxolitinib can affect white blood cell counts, which can increase the risk of infection. As @DuncanB & @Duncan have kindly suggested, it would be worth having a more detailed conversation with your team about this. I can also see that @Duncan has shared the MPN Voice information about ruxolitinib, which is a useful resource and includes information on possible side effects that may help inform discussions with your healthcare team.
In case it can be useful for you, we have a webpage that includes information on Eating safely with neutropenia | Blood Cancer UK and Blood cancer and eating well | Blood Cancer UK both of these pages also include free guides to eating well available to download or order - Eating well with blood cancer booklet | Blood Cancer UK Shop which may be helpful to refer to.
Do take care, and please don’t hesitate to reach out if you need any further support.
Warm wishes
Emma (Support Services Nurse)
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They suggested not to eat out as we can not know who’s preparing it or how hygienic the kitchen is.
This has been the biggest blow to me as we love eating out and going out for afternoon tea.
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Thank you, I will look at the link you have sent. Im very grateful for your reply.
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Hi @lin.913
That’s a reasonable reason for suggesting not eating out.
You can check hygiene ratings of establishments online and that will at least give some indicator.
Also worth paying attention to when hygiene rating last awarded.
Ratings are awarded by the Food Standards Agency in England and Wales and Food Standards Scotland if not in England and Wales.
Hope that helps
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