Hi Im 65yrs old and have just tested positive for JAK2 with my platelets levels now at 997, not seeing haematology for my first appointment till 20th July, getting so stressed with the waiting given the outcome is probably the c word 
. Can I ask has anyone else had issues with bone pain?
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Hi @Jan61
Welcome to the forum. I’m glad you found us at this time.
There are so many types of cancer and none of us forum members can offer medical advice.
What I can say is that I had a JAK2 inhibitor drug called Ruxilitinib when I was diagnosed with Myelofibrosis in October 2023.
I didn’t have bone pain but an enlarged spleen.
Fortunately I was seen by Haematology within a few days and it won’t be easy waiting for your first appointment.
That said, I know that if treatment is needed they tend to move forward quickly.
If you need to speak to someone the @BloodCancerUK_Nurses @BloodCancerUK-SupportTeam are an amazing source of support.
Details on how to contact them below
Call us for free on [0808 2080 888](tel: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.
I’m sure others will share experiences.
In the meantime take care and do let us know how things progress.
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Hi Jan61,
Try not to get stressed. Many people with the JAK2 variant are living their lives with no treatment, being on what is called ‘watch and wait’.
I have the same gene variant and am having treatment to manage the condition. I’m also working full time. I expect to enjoy a normal lifespan.
Yes, I do get a bit of bone pain from time to time. I just lump it in with those pains one gets from having been born more than 60 years ago.
I hope this is some help.
Lucky
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Hello there @Jan61, welcome to the forum at this stressful time. Please know that you’re not alone with that JAK2 gene mutation as there are many of us around the forum, including myself, so you’ve found the right place to bring your concerns.
I see dear @DuncanB and @Lucky have shared great tips as ever, which I second, particularly calling the Blood Cancer UK specialist nurses with any medical queries. They can answer the trickier questions we may have, just give them a call on 0808 2080 8880.
Sounds like you were checked for a JAK2 gene mutation first before figuring out which blood disorder it may indicate. This is pretty typical from what others around the forum have shared. Have you got a number to call the haematologist or clinical nurse specialist in case they can share anything sooner than your appointment later this month?
This was the process I went through too and I remember the long wait between tests and results being excruciating. I’d say try to bide your time and keep yourself busy with healthy activities—this helped me take my mind off the dread, plus I caught up on old favourite films and hiked a lot!
May I also say, try not to turn to Dr Google, or indeed Dr AI. Search results online about blood disorders tend to generalise and don’t know all about our specific cases so they tend to not be reliable. Maybe take note of all your questions and worries for when you speak with a specialist.
While I think you’re wise to prepare just in case for hearing the C word, keep in mind that many types are considered chronic as in they develop slowly and, like @Lucky says, can be lived with as they do not affect our lifespans.
For what it’s worth, I ended up being diagnosed with Polycythaemia vera ('PV') and 3 years later my haematologist tells me it is stable and my blood cells are all normal. My bones did ache after I started treatment, but not before, although I’ve heard that aching is common for folks with higher blood cell numbers like with Myeloproliferative neoplasms ('MPN') such as Polycythaemia vera ('PV').
I’m glad you found the forum @Jan61, do please keep us posted about how you get on.
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Hello @Jan61
Thank you for your post.
We are so sorry to hear that you are going through a worrying time. We hope others can share their experience with you, as you are certainly not alone in feeling this way.
Do keep your treating team updated on how you are feeling and perhaps reiterating to them that you are having bone pain, as it’s important they’re aware so that they can aim to support you as best they can.
In case it is useful to know, we have a webpage on small things that people can do to support their well being during challenging times- Blood cancer: mind and emotions | Blood Cancer UK.
Do take care & keep us updated.
Warm wishes,
Emma (Support Services Nurse)
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Thank you I will certainly mention my hip pain when I go for my appointment,
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Thank you all for your messages I have indeed started writing a list of questions to ask at my appointment I’m just keeping my fingers crossed that my appointment doesn’t get cancelled again and will update once I’ve been seen
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Hello @Jan61
I can see from your first post that your appointment is today - I just wanted to say that I hope all goes well for you. You could take a pen and paper to write things down if you need to, and also take your list of questions too. I am sure you’ll feel less stressed once you’ve had chance to speak with the haematologist. Do tell them about your bone pain.
Let us know how you got on, when you get chance (hopefully the appointment wasn’t cancelled).
Take care,
Heidi.
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Hello @Jan61, how is your first appointment? Hope all is great. Take care —pmf 5 years still going strong—
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Hi first week of being on the meds and so far so good, starting me on double dose Hydroxycarbamide, baby aspirin daily, omeprazole daily, and medication for the first month for Gout
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Hello there @Dan0921, welcome back to the forum. It’s great to read how well you’re doing (with myelofibrosis?), and thank you for your supportive comments to @Jan61.
Just wanted to pop in to say I’m glad your first week taking medicine is good so far @Jan61, long may that last. I take daily aspirin and hydroxyurea too (for Polycythaemia vera ('PV')) and it took some time for them to stabilise things. If your specialists have said what your overall diagnosis is we can direct you to relevant information and other forum members living with similar, just let us know if you’d like.
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Lovely to hear from you again @Dan0921 and it is so great to hear from forum members with updates on what has been going on with them, really look after yourself and don’t be a stranger.
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Hi Duncan
I have Essential Thrombocythaemia my specialist said they do not bother with the bone marrow test anymore, I have my first blood test on Monday so will be interesting to see what effect the past week has has on my platelet level
Jan
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Ah in that case welcome officially to the club that no one would ever choose to join, @Jan61! I am really sorry about Essential thrombocythemia ('ET') being diagnosed, it’s a lot to take in isn’t it?
You may already have found the great Blood Cancer UK information about Essential thrombocythemia ('ET'), and you can also request physical booklets, so here are links for your reference: Essential thrombocythaemia | Blood Cancer UK and Essential thrombocythaemia (ET) | Blood Cancer UK Shop
As you’ve been prescribed hydroxyurea, here is the useful information from Macmillan about it: Hydroxycarbamide | Macmillan Cancer Support
Interesting that you’ve been told a bone marrow biopsy (BMB) isn’t necessary as I understood them to be the most conclusive test we can have to check what’s going on right at the cellular level, but then I’m not a haematologist.
However, BMBs are not always pain-free and can feel rather uncomfortable from what other forum members have said about theirs, so missing that I’d say is a positive.
I’d also say keeping a list of any and all new or changing symptoms is a good idea after starting hydroxyurea as we can note how it agrees with us (or not) and we can pass that onto our specialists.
If you find you’re having a lot of new side effects then there are phone apps and special websites we can use to take note, just let us know if you’d like to use those.
If there’s anything medical you’d like to discuss with the Blood Cancer UK nurses then they can be reached free on 0808 2080 8880.
Sorry again that it’s turned out to be Essential thrombocythemia ('ET') @Jan61. Please know there are many of us here living with Myeloproliferative neoplasms ('MPN') like Essential thrombocythemia ('ET') so do reach out to other members using an @ before their username with any queries and I’m sure folks will warmly greet you.
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Thank you so so much Duncan it’s so comforting knowing there are people like yourself and others out there ready and willing to help and share ideas to help people like us live their life to the fullest.
Jan
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