Not diagnosed, but suspected

[KayS68]

Edit: letter from haematologist- BCR/ABL and JAK2 are negative m, awaiting rarer test results, but he thinks could be related to infection / endocrine issues. Relieved, but puzzled! Thank you everyone for replying, I guess I was premature in posting!!

Hi. I’m just struggling today as I’m in that waiting period between seeing the haematology consultant, having more bloods done & getting the results.

My GPs commented on my high WBC last year when I had thyroiditis, but my basophils & platelets remained high when things settled. They eventually referred me to haematology & ended up asking for 2ww pathway referral because I’m having fever spikes almost daily & generally feel really unwell.

Saw consultant on 9th Aug & he arranged abdominal CT (phoned the next day to say it was clear) and loads more blood tests. He said the basophils & platelets still high, other tests will take longer to come back. Got a follow up phone appt on 31st.

I asked him what he thought was going on & he said he thinks it’s a myeloproliferative disorder, and he remarked that I’ve had basophilia & thrombocytosis since 2015!

I guess I’m just anxious, but feel stupid for worrying in case it’s not this, if that makes sense. So I’ve been trying to ignore it.

Not sure what I’m asking, but if anyone understands me, be lovely to hear from you. Thank you.

[IrishSarah]

Hi KayS68,

I think it’s safe to say everyone here understands that feeling! You certainly aren’t alone 💚

The waiting really is the worst bit. It’s important to remember that on the other side of that waiting, for the vast majority of people diagnosed with an MPN, is a very long life with a very manageable condition.

Totally normal to feel how you’re feeling, your poor brain is trying to process multiple possibilities when nothing is certain yet and that’s tough! Go easy on yourself and don’t hesitate to reach out here ☺️

Sarah

[KayS68 in reply to IrishSarah]

Thank you so much, Sarah. I just want to sleep until I speak to the consultant.

Kay x

[IrishSarah in reply to KayS68]

I hear ya! It’s a long two weeks 😩

Hope it passes quickly for you. Do let us know how you get on x

[KayS68 in reply to IrishSarah]

So true! Lol. Saw him on the 9th, and it feels like such a long time. Also got rheumatologist on Monday, so it’s all go. Lol. X

[hunter5582]

Welcome to the forum. Glad you decided to post hear. We most certainly all understand what the uncertainty i like when considering whether you may have a myeloproliferative neoplasm (Noting they are now referred to as MPNs rather than the older MPDs).

There can be a number of reasons why you may experience basophilia and thombocytosis. These conditions can be either primary or secondary to something else. You did not mention your RBC/HGB/HCT so I am assuming you are not positive for erythrocytosis.

One of the most basic tests the doc will have ordered is for the driver mutations for MPNs (JAK2, CALR, MPL). This will help to determine whether you have a MPN. There is other relevant testing the doc will do, which it sounds like has been initiated. Hopefully the hematologist you are seeing is a MPN Specialist. It it turns out you do have a MPN then it is important to involve a MPN specialist rather than a regular hematologist as most docs do not have the KSAs to provide optimal treatment for these rare disorders. Here is a list just in case. mpnforum.com/list-hem./

Fear of the unknown is usually worse than knowing for sure what is going on. If it is an MPN, then know that this is just the beginning of a journey. I was diagnosed with ET about 30 years ago. It progressed to ET about 8 years ago. I have lived a rich life and at age 66 continue to do so. Know that you can do the same.

All the best.

[KayS68 in reply to hunter5582]

Thank you so much! I did wonder about MPN / MPD as he referred to it as MPD, so thank you.

Yes, RBC/HGB/HCT all ok I think, it’s just the basophilia & the thrombocytosis that have been persistent.

The haematologist I’m seeing I think is general, but the “blood cancer” team are at UCLH which I believe is a specialist team within their new cancer wing. I’m assuming if it is MPN that I’ll be referred to them. I will look at the list you provided - thank you so much!

You are spot on, it’s the fear of the unknown. I’ve gone through a lot of medical issues & surgeries with my son and each time it was just “let us know what we’re facing” - so I know that’s exactly what’s going on here. I want to be able to access the blood results myself NOW! Lol.

Thank you again, so much. I feel better knowing I’m not alone in the worrying stage.

[LadyAbash]

Hi,

If you are anything like me...I was diagnosed just before Christmas 2019q0, it was the scariest thing ever. Once all the test results came back, I started feeling more confident. I have ET, JAK2 which is being well managed with Pegasys Interferon for just over a year. I have been on this network only a month or so, but have found it such a useful place to find out more about the condition and to respond and chat to others.

As others have said...you are not alone! Good luck with your results.

[KayS68 in reply to LadyAbash]

Thank you. I’m sorry that all of us have this scary time waiting to know!! So glad you’re doing ok with your treatment. It really helps to know all this in advance.

Thank you so much!

[Daisy-May]

I know how exactly you feel I waited 4 weeks for my BMB went through all the emotions crying couldn't eat or sleep, Once I go my diagnosis I settled down couldn't believe I wasted 4 weeks of worrying!!! which made me more ill but it's something we all go through on this journey! You will find some great advice on here! Your not alone I could worry for England.. Take care 🙋

[KayS68 in reply to Daisy-May]

Ughhhhhh. It really is the waiting that gives us the most to worry about, isn’t it? I’m really trying to not waste this time - as you said, it could make me more ill. Thank you so much for replying!